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Tuesday, September 16, 2008 8:48 AM CDT

I haven’t been here in a while. I think of coming often, but I usually find some reason for it being too hard. We’ve been doing a little better lately. There has been a conscious effort between us to begin taking steps toward healing. I’m sure it sounds strange that we’re just beginning. I’m sure we always have been, but it seems some of the fog is beginning to lift a little. It’s strange, though. Even with a little more clarity of mind, all the feelings stay the same.

Today’s a bit of a down day for me. It’s one of those days I can’t seem to distract myself from missing my boy. Have you ever related a childhood memory with a smell or season change? I have many of those sweet memories. The smell of cinnamon reminds me of Christmas and the feeling of coming Spring on my skin reminds me of time spent in my grandparents’ garden. Well, now I have a new one. This morning the air is a little cool and the sky is a little dimmer than it is in summer. It definitely seems to promise that fall is on its way. Everyone around me is so excited…football season, Thanksgiving, then Christmas! I’m trying to join in. This morning, though, stopped me in my tracks. As I was preparing Travis’s lunch to take to work this morning a bitter feeling hit me without any warning. The cool air sent me flying back to another time…a time when I cared for two sons, a time when we called a hospital “home,” a time when everyday was a struggle, a time when I had to watch while one son was put through things no one should go through and the other son struggled to make sense of it. This cool air makes me re-feel all the fear and hope of moving our family to NC, our hearts begging for this to work. I must confess, I hate this time of year.

I am hopeful though. I understand why people would love fall and hopefully one day I will too. I hope that one day God will give me sweet memories of the fall and winter so that I can get excited about them as much as I do the spring and summer. What a gift that would be. Until then, though, I am praying that God will use the harsh, painful memories to mold me into a more complete image of Himself. I learn a lot while I’m in pain. I hold on to my Lord tighter and study His word more intensely. So in a way, I guess He is giving me sweet memories already. Memories of close, intimate experiences with my Lord are irreplaceable. This is my fall/winter focus.

Aside from that, Travis and Matthew are doing well. Travis, poor thing, is getting over a rough cold. He slept for almost two days straight this past weekend. He is still a little weak, but back to work and preparing for this weekend. Matthew is doing great. He’s really acting like a big boy now. We’re surprised daily by the things he thinks to say. He’s playing Upward Soccer this fall and loving it. School’s going great and seems to improve every day. We’re all excited because this weekend we are throwing a party for my grandparents’ 60th wedding anniversary! More good memories to save up for later.

Also, the Micah’s Hope fund is doing well. We’ve already been able to help two families with their adoption expenses. One family has already been able to bring their children home and the other should be getting their daughter by the new year. We’re having another meeting tonight and I’m very excited. Our brochures have already been made and a short DVD is in the works. So far, we haven’t really been able to do much in the fundraising area because we’re waiting for the DVD to be finished. Hopefully, that will begin soon. There is one thing that is a burden on our hearts right now. One of our board members has just been diagnosed with a brain tumor. The surgery to remove it is scheduled for tomorrow (Wed.), but there’s no promise that the removal will correct her severe symptoms. She has a wonderful husband and beautiful 6 year old daughter. Please pray with us on this. She is a precious friend to us and Micah’s Hope.

Much love,
Susan

Monday, July 14, 2008 10:13 AM CDT

Hello All!

We have had a packed June and July already! Last month was Micah’s birthday. We had a great time celebrating him and Matthew got tons of ideas for his upcoming birthday. That weekend we got busy on painting our living room. This is a big deal for me because I’ve never gotten to decorate my own home before! The new color took a bit of getting used to, but I’ve really grown to love it. We also put up curtains (which I’ve also never done before) and began painting our foyer. It’s been so much fun, I’m hoping we’ll just keep going through the rest of the house!

This past week, Travis was off for vacation. We have no idea how to rest on vacation. We rushed down to my mother’s house after his last day of work and got there around midnight. Of course, Matthew was too excited to sleep. He stayed awake until 1:30 am and then was up and running at 6:44 am! We grudgingly got going and enjoyed my mom’s pool most of that day. That night we headed to my grandparents’ house, where we had a wonderful meal, Travis and my brother went fishing, and my granddaddy and Matthew picked LOTS of blueberries.

The next day was our party day. Matthew and his cousin, Elizabeth’s, birthdays are only 2 days apart, so our family likes to have their parties together. We woke up that morning and enjoyed a delightful little tea party in Elizabeth’s honor. Then that afternoon, Matthew had a smashing pool party with a cool snake cake. By that night, our blood sugar was probably sky-high and we were ready for bed!

The next day was Sunday. We went to church and spent the rest of the afternoon in the….pool! That night we all ate supper together and then Travis, Matthew, and me all headed down to Savannah to see my sister and her husband’s new house! That night we ordered a second supper of pizza and stayed up VERY late playing Cranium. I never knew how strange my husband really is!

The next morning we woke up early and headed to the beach. This was one of Matthew’s favorite parts. He (unfortunately) has little fear of the water and adores the waves. We built sandcastles and buried Matthew in the sand. I have great pictures, but I can’t figure out how to show them to you! That afternoon, we came back to my sister’s house and ate a late lunch of steak and home-grown corn! Then, Karen and I went shopping for the rest of Matthew’s birthday presents. The visit ended with all of us meeting up for ice cream and shaved ice. That night we headed back to my mom’s house where we got to eat a wonderful KFC supper with my grandparents and aunt.

The next morning we got up and headed back to my grandparents’ house to pick apples. There were so many! Matthew had a great time. He gets a kick out of growing and picking his food. Travis and my granddaddy got busy digging me up some blueberry bushes, while Matthew figured out how to climb the apple tree. Then it was time to say our goodbyes. I hate that part.

Well, on we went to my older sister’s house in Macon, GA. When we got there, Travis got busy setting up the grill and I got busy playing with my babies! We had some great steak that night and struggled to tell them goodbye. Finally home, we slept great that night!

Thursday, we painted our foyer. I’m not real happy with the color and am seriously considering doing it all over again. Oh well.

And finally….last Friday was Matthew 6th birthday! He stayed in his superman PJ’s all day and waited until his grandparents, aunt, and friends came over. He had a great second party with tons of gifts. I think his favorite part was getting his first balloon bouquet. His eyes got huge and he hasn’t quit playing with them yet. Everywhere he goes he’s telling people that he’s six years old now! What fun.

We ended the vacation by having our pictures taken in a nearby park. I’m not sure how they’ll turn out since it was right after a good rain, but we enjoyed it.

Today Travis had to go back to work and we have to get back to our routine. In some ways this is sad, but I think we all know we couldn’t keep up with that pace much longer.

Today is also a special day for us. It was three years ago today that my daddy was released from his struggle on this earth and taken Home to be with his Savior, Jesus Christ. I can’t get over what an amazing man he was…is. He loved the Lord more than anything and knew the Scriptures better than anyone I’ve ever met. You could ask him the strangest questions and he’d quote you the exact Scripture needed to answer. His mind was brilliant. He tested at genius level as a small child and was wanted by schools like MIT. Thankfully, my grandparents were wise enough to know that he needed to stay with them and be raised as normally as possible. He grew up to be a doctor in our small town. I always felt so honored to be his daughter. Everywhere we went, people were always stopping me to tell me how my dad had saved their life. Many of them also told stories of how he would tell them about Christ while he was stitching up their hand or pray with them when they were scared. He was a hard worker and hated sitting still. It was very hard when he was diagnosed with ALD and began losing his ability to function normally. First it was his legs, gradually crawling up to the rest of his body. Even through all of his horrible suffering, Daddy remained faithful to his Lord. Just months before his death, the man that used to help us take care of him told us that Daddy was telling him about God. He couldn’t speak well anymore, but he got the message through. Later, that man called us to tell us that he’d received Christ’s salvation as a result of those conversations. His speech got more and more difficult until all he could say was “I love you.” He would say it over and over. You can’t get much better than my daddy. I miss him. Please pray for my mother.

Thanks for coming by.

Susan

Friday, June 6, 2008 8:02 AM CDT

HAPPY BIRTHDAY, MICAH!

It was this morning...3 years ago...that our wonderful son, Micah Joshua Fleming, was born. What an exciting day! We knew he had inherited ALD, but didn't care. We couldn't have been happier to have FINALLY seen his perfect little face. Ten fingers, Ten toes, everything was there! In our hearts there was absolutely nothing wrong with him.

He looked just like his big brother...except that his ears and nose were bigger. (Thankfully, he grew into those!) He got right into the swing of things, nursing heartily on the first try. We got to go home one day earlier than we had with Matthew, because he'd been much nicer to me during labor. He wore the same outfits to get his pictures taken in and to go home as his big brother had worn about three years before.

Matthew was amazed by him and handled having a new litte brother well. I'm sure having all our family around helped distract him. It was an adjustment for me learning to balance the two of them. They both wanted to be held at the same time of course.

Micah had jaundice and had to wear a bili blanket for about a week. This is one of the first times we saw his little spit-fire personality. He most definitely did not like that thing. Sure was cute, though, with his two-toned skin. Wherever the blanket hit, he was nice and white. But anywhere else, he was nice and tan. Of course we were thrilled because poor Matthew had been put back in the hospital for his and it took 3 months for his to go away.

I can't really express how happy I was to have two children. I loved showing them off, dressing them alike, and figuring out how to survive through the grocery store. They were my world. Everything I did revolved around their schedules...who needs to eat, which one's napping, who's diaper needs changing. And oh, when daddy came home the whole world stopped! He most definitely should have felt like a king! Everybody eat supper...and let the games begin!

Bath time was a favorite for Micah. As soon as he hit the tub, the water would start to fly. Water would be all over the countertop, the floor and sometimes even the ceiling! Matthew loved to stand with me and laugh and laugh! He so wanted to join in on the splashing, but I needed him to be my helper. By the time Micah had been soaped up and rinsed, there was very little water left in the tub. Oh what fun!!!

That's when we didn't have to work hard to have fun. It was as natural as breathing. Even when we had to pack everything up and leave our home to begin treatments in NC, we still had a good time. To us, we focused mainly on how much more family time we were going to have. Daddy was going to be with us 24/7! We were scared, but chose not to think about it much. We were trying to trust God to take care of our family, and truly believed He would. (He did, just in a very different way than we had hoped.)

The fun times began to slowly taper off around November when Micah (our ball of fun and energy) began to go down hill. One of the hardest things to watch was his smile disappear. But the worst, was the PICU. So much suffering, so much fighting.....

Oh how I miss my fun little man. I don't think our lives will ever feel complete again. Don't get wrong, my Lord has been gradually healing us. He meets our EVERY need. He is sovereign. If He sees that I need to yearn for my son for the rest of my life, then I trust that it is necessary. There is some reason we must have to watch Matthew yearn for a sibling and truly hurt this week as we work to celebrate Micah's birthday without him. I trust God's reasons. I love Him (because He first loved me) and I am committed to trusting His unknown reasons.

(I praise You, Lord, for what is unknown to me. You know all, You love and have chosen me, therefore Your decisions for my life are acts of provision and love. You are always right and just. I worship You. In Jesus' name, Amen.)

We have plans for today! Matthew and I are going to decorate the cake we made last night. It's supposed to look like a lamb, but we'll see... We already put new flowers at the cemetary last night. We may go ahead and buy some paint and supplies so we can start painting our living room tomorrow. (Yeah!) We have also invited some special friends over to enjoy Micah's birthday supper with us. They were with us the day Micah died, and have been such sweet companions through these past two years. Then...we have gifts for all the children. We'll give out three tonight (one for Matthew and the two daughters of our friends) and later we'll hand out gifts to my nieces and nephew. We really want Micah's birthday to be a celebration. Hopefully, through the years all the kids will begin to look forward to it.

Thank you so much for coming by here. Your visits never go unnoticed.

Much love,
Susan

Wednesday, April 23, 2008 8:17 AM CDT

BECAUSE I HAVE HAD SEVERAL REQUESTS, I HAVE PUT THE INFO FOR MICAH'S HOPE AT THE BOTTOM OF THE PAGE. THANK YOU FOR YOUR PRAYERS AND SUPPORT.~Susan

Well, today’s a special day for us. It was two years ago today that our Micah went Home to be with his heavenly Father. He is a little over two years old now and we can’t wait to see him again.

Travis tried to get the day off from work but was unable to. It bothers him to be at work on such a special day. He wanted to spend it with Matthew and me, doing special things that remind us of our Micah. He’s keeping his head up, though. Maybe God knows that he needs to work today. We trust that God has arranged the day exactly the way that pleases Him most. Matthew and I are planning on trying to meet Travis for lunch and possibly have a picnic. Micah absolutely loved the outdoors and it will be a joy to remember him during our meal.

Matthew’s been a busy boy lately. T-ball has become one of our main activities. He’s enjoying himself, but can’t quite figure out how following the rules is supposed to be fun. His idea of fun is getting down on the ground and wrestling with his teammates. He’s going along with it, though, and is a pretty good little player.

Travis has been able to enjoy the crappie season this year. He loves to fish, but we’ve never had a boat or a good place to fish. This year the fish were calling, though. One late Friday afternoon about a month ago, Travis and I decided that we’d buy us a flat bottom boat. We couldn’t really afford a nice bass boat or anything, and Travis just couldn’t stand the wait any longer. As soon as he got off work that night we raced over to Gadsden and bought us a 12 foot aluminum flat bottom. With no trailer to put it on, we just stuck it in the back of his truck! The next day we drove over to the Coosa River and pulled over on the side of the road by some back water. Travis and I very gracefully lifted the boat from the truck, lifted it over the guard rail, carried it over the rocky bank, and finally got it in the water! Believe it or not, it turned out to be a beautiful place to fish and we ended up having a great time. We may not have caught many fish, but the experience was well worth the trouble. Our wriggly Matthew was amazed at it all and sat pretty still the whole time we were there. Since then, we’ve all loaded up and gone fishing as much as possible.

We’ve had lots of family come and visit over the past month. We had gotten a little homesick for everyone and are very grateful for their visits. There’s nothing like family to cheer you up. We all have a little more pep in our step now.

We also have some very exciting news to share with you. After quite a bit of effort from our pastors and a great deal of prayer from many people, we have now been able to begin a fund called Micah’s Hope. It is a fund that will be used to give grants to parents that are unable to pay the very large fees required to adopt. Over the past several years, God has really been growing in us a heart for adoption. We have always known that God requires us to raise up godly children, but never considered the real need for adoption until Micah was in PICU. It was there that we realized what desperation felt like. God used that time to remind us of the many children worldwide that do not have parents or a place to call home. These children are real and are really suffering. This has grieved our hearts ever since. When our pastor came to us with the idea for Micah’s Hope, we immediately saw God’s hand in it. I am still brought to tears when I think of how God is working it all out. We had our first Micah’s Hope meeting last Tuesday night. That night we all began to pray that God would send us applicants. Well, God answers prayers. The very next day we were contacted by an adoption agency we are working with about a family in immediate need. It has been such an amazing experience to help this family, get to know them, watch them as they are working out all of their final details, and look forward to meeting their new family members. It’s almost like watching the miracle of birth. I am so humbled and honored that God would let me be a part of something so special.

Please be in prayer for this very special project. Micah’s Hope was given to us by God and we so want it to reflect His beauty. Adoption is a picture of our relationship with God, and He also commands us to care for the orphans. What an exciting adventure we have begun!

Thanks for celebrating this special day with us. Please pray that we will continue on in an attitude of celebration that Micah lives in God’s presence, rather than dwelling on our own pain and loss.

Much love,
Susan

***We have been so blessed by so many of you expressing a desire to contribute to the Micah's Hope fund. The main contribution we desire is your prayers, but obviously there is also a financial need. If you feel that God is leading you to contribute financially you may make your checks out to "Grace Fellowship." Please also write "Micah's Hope" in the "For" blank at the bottom. All checks should be mailed to:

Grace Fellowship
P.O. Box 8042
Anniston, AL 36202

Monday, February 4, 2008 2:29 PM CST

This morning I was reading to Matthew about Martin Luther. We’ve had a great time learning about his life, and the lives of several martyrs from the reformation. Today was the day we were going to read about the death of Luther’s daughter, Magdalen. I was a little nervous about it, but I’ve learned that Matthew usually responds well to things like this. He’s not at all afraid of it…just curious.

After Magdalen’s death, Luther had to deal with the grief of his wife and other children. Death became a common point of conversation around their house. Luther would gather his children around him and show them a gold ring he had. On the outside was engraved, “Think often on death,” and the inside was engraved with, “O Death, I will be thy death.”

My first thought was “what a downer!” However, I immediately realized how often the conversation around my house is on the same topic. In fact, it’s usually a topic we actually enjoy. I read on to discover that after showing the children his ring, Luther would explain, “Christ has overcome death, my children, so that it is now the gate of life.” Oh, what true and empowering words those are!

It’s so nice to hear different people explain the Gospel. Luther’s explanation to his children was a breath of fresh air to my heart. Our death on this earth is only a shadow (Psalm 23). Because of Christ’s death and resurrection, death has become our doorway into REAL life. And though I often wish it didn’t have to be a part of our lives, God has chosen to use it for good. As long as we make Jesus Christ the Lord of our life, when it’s our turn to walk through that dreaded doorway, we can look forward to where we are going. Our eternity is secured. We will live with our Creator and worship Him forever in all of His goodness. Let me be sure to add, though, that this is not the case for those who have not made Christ the Lord in their lives.

I have struggled greatly throughout the past 2 ½ years. Confusion, grief, self-pity, anxiety and more have threatened to take hold of my heart. Yet, it is the knowledge of who is Lord that has kept me on the Way. Just like Christian in John Bunyan’s “Pilgrim’s Progress”, I have often allowed distractions to take me off of the straight and narrow. But my Lord has graced me with His lovingkindness, and gently wooed me back to Himself…time and again. I do not deserve His love and faithfulness, yet He has chosen to do so anyway. “I will love You, O LORD, my strength. The LORD is my rock and my fortress and my deliverer; My God, my strength, in whom I will trust”--Psalm 18:1-2a

I used to read to Micah quite a bit from the Bible. During our stay in the hospital, we enjoyed all of Proverbs, Joshua, the Psalms, James, and pieces of many other books together. In fact, the night Micah was placed on the ventilator he was very upset. Even though they had given him medicine to keep him sedated, he was fighting as much as possible. I remember pulling out my Bible and starting to read from Psalms. Immediately, he calmed down to listen. Not only were they my words of hope, they had become his also. One of my favorites to read to him was Psalm 91. I often used it to pray for Micah when my own words seemed inadequate. With a shaking voice and every muscle in my body tense, I would pray with all my might, “he who dwells in the secret place of the Most High shall abide under the shadow of the Almighty. I will say of the LORD, ‘He is my refuge and my fortress; My God, in Him I will trust.’ Surely He shall deliver you from the snare of the fowler and from the perilous pestilence. He shall cover you with His feathers, and under His wings you shall take refuge; His truth shall be your shield and buckler. You shall not be afraid of the terror by night, nor of the arrow that flies by day, nor of the pestilence that walks in the darkness, nor of the destruction that lays waste at noonday.” Several times a day I would place my hand on his precious, struggling body and pray that God would say verses 14-16 over my little man, “Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show him My salvation.”

I praise my Lord for loving and comforting my son during those three months in PICU. I truly believe that when I was unable to hold him, Micah was being held under his Father’s “wings”. Praise be to my faithful and loving God.

Much love,
Susan

Wednesday, January 23, 2008 8:54 AM CST

Thank you for your prayers for Carlton and Aimee. Their daughter, Sophie Ann, was born last night. She lived for five minutes and then went Home to our Lord. As far as I know, the delivery went smoothly.

***********************************************************************************

Today marks the second anniversary of the day our little Micah was first put on the ventilator. We were completely caught off guard and unprepared for that decision. While on the ventilator, Micah suffered greatly. These are the memories I sometimes wish we didn't have.

During the hard times, I often lean on the Psalms. They give me words of praise when I can't find my own.

"I will bless the LORD at all times; His praise shall continually be in my mouth. My soul shall make its boast in the LORD; The humble shall hear of it and be glad. Oh, magnify the LORD with me, and let us exalt His name together......The righteous cry out, and the LORD hears, and delivers them out of all their troubles. The LORD is near to those who have a broken heart, and saves such as have a contrite spirit. Many are the afflictions of the righteous, but the LORD delivers him out of them all." ---Psalm 34:1-3,17-19

Much love,
Susan

Tuesday, January 22, 2008 3:38 PM CST

Hello all,

I just wanted to ask you all to be in prayer for our pastor, Carlton, and his family. His wife, Aimee, is pregnant with their third child, a daughter named Sophie Ann. Several months ago, little Sophie was diagnosed with a fatal chromosomal abnormality. She is not expected to live long after birth. This morning their dr. decided that it was necessary for them to go ahead and induce labor. Aimee is apparently have blood pressure and fluid issues. Please pray for Aimee as she is going through this experience. Pray that God will make her body ready to give birth and no complications will occur. Pray that they have a blessed experience with their little one and feel God's hand on them through the entire thing. Pray for Carlton as he also labors in a way only a daddy can. He is a wonderful leader of our church and community. Pray that this will strengthen his ministry and completely glorify our Lord. Sophie's sister, Hannah Grace, and her brother, Noah, will also have a part in this. Pray that God will give Carlton and Aimee wisdom in how to deal with their other 2 children's grief and the touchy situations that surround Sophie's death and burial.

Thank you for your faithfulness.

Much love,
Susan

Monday, December 31, 2007 2:16 PM CST

Merry Christmas and Happy New Year!

Oh, how God has proven Himself in my life over and over again. What precious lovingkindness He shows me daily. I truly enjoy Him. He is my Refuge, my Comfort, my Rock. He is my source of strength, the One I turn to for guidance. He is so faithful to me and my family.

This past Saturday evening, my older sister, Jeanne, gave birth to her third child. (Her oldest is only 3:]) She and her husband, Eric, had decided to wait and let the baby's gender be a surprise. This gave us even more time to pray for this little one, especially in the area of health. As many of you know, my sister is also a carrier for ALD and has a 50 percent chance of passing it on to her boys. (Girls have a 50/50 chance of being carriers) Obviously, we all knew what we were facing, but my family has been only supportive through all of this. Jeanne's labor and delivery went pretty smooth and after everything had a chance to calm down, she was finally told that she had given birth to a baby girl! Her name is Lindsey Alice...after both of our grandmothers. She looks very much like her older sister, Elizabeth, and is already showing signs of a strong personality!

I can't tell you how overwhelmed I am at my Lord's lovingkindness toward me and my family. That He would give us a little girl just seems undeserved! We won't even have to wait for tests to come in. All we have to do is enjoy her! What a little treasure she is. The worst part is having to leave her at her mother's house when it's time to go home!

Thank you all so much for your faithful friendship to me and my family. I haven't updated in quite a while. Although I've missed it very much, time doesn't always allow it anymore. I usually get quite emotional when I update, and I'm really trying to keep Matthew from seeing me like that all the time.

I'm learning alot right now. Most of it you would probably think I should know already. It's strange, but sometimes I think going through all that we did with Micah makes me forget normal things. Everyday is a challenge. I have to coach myself through cleaning the house, running my errands, keeping up with friends, being Matthew's mom. The things that used to be automatic, just aren't anymore. I get so destracted by my memories of Micah, that I can't seem to focus on "right now" as well as I once could. I think this is good, though. Don't get me wrong...it can be quite frustrating. But it's almost as if I'm getting a new chance to evaluate everything and start over. Sometimes I find myself thinking, "God has wiped my slate clean...and my mind!"


Even though it's no longer the right day, I still have to say Merry Christmas! It's never too late to celebrate the one baby boy that was truly born to die, Jesus Christ. In my weak moments I sometimes feel that Micah was born to die. Even though my son wasn't even close to the holiness of Christ, I think God has blessed me with some small way to relate to the sacrifice He made. I think of the tragedy of Christ's body, how it was torn and mangled. I remember the agony of watching my own son's body being abused and tortured constantly for days on end. I think of how Jesus cried out to His Father, "My God, my God, why have You forsaken me?" I remember my own son looking up at me in the same way. I remember him flinching from my touch. I remember him crying for fear I, or someone else in the room, might hurt him again. Then, I think of the injustice of Jesus' perfection being covered in our sin, the injustice of this perfect Man being tortured and killed for countless sins that He had never nor never would commit. I often feel the urge to shout the beauty of my baby boy for all to hear. I feel he deserves it. He endured so much and I want him honored. If I feel that way about my son, how much more does Christ deserve it? He truly has earned our praises. He has truly earned a special day once a year for the whole world to remember and celebrate Him. We ought to be shouting His wondrous beauty to all the world! It is because of His enormous sacrifice that I am promised I will see Micah again. It's because of Him that I'll see my Daddy again. It's because of Him that I will enjoy an eternity with my Creator! Oh, what a glorious day it will be when every knee will bow and every tongue confess that Jesus Christ is Lord!

Merry Christmas!
Susan

Thursday, September 20, 2007 11:51 AM CDT

******Update for Oct. 16, 2007
Please be in prayer for the Jenkins family. Their funny little Mason went Home to Jesus today. They are such a faithful and encouraging family. We couldn't have made it through our trials with Micah without their love and encouragement. Oh, how are hearts are breaking for them tonight. If you'd like to learn more about Mason and his precious family, you can visit their site at www.meetmason.com. They also have a caringbridge site where you can leave them a message in their guest book. It's www.caringbridge.org/visit/masonjenkins.

Father, please lighten the tremendous load of horrific grief this family is having to endure right now. Shower them with Your strength and peace. Let them feel Your arms around them. In Jesus' name...

Hello all!

It has been quite a while since my last post. I apologize for that. I have been pleasantly surprised at those who have still remained faithful friends and prayer warriors for my family. I have no worthy explanation for my lack of updates. My only excuse is that I have struggled for the past few months to live normally.

It seems that ever since the one year anniversary of Micah's death (April), my mind has been in a fog. I have to focus so hard on staying pleasant, teaching Matthew appropriately, and trying to figure out my God that I haven't quite been myself. I've had trouble keeping up with friends. I've forgotten regularly scheduled appointments that I enjoy going to. I'm unable to be as productive as I once was.

After many months of feeling inadequate because of this, I finally realized that maybe it's o.k. Maybe this is all just part of grieving for my beautiful little man. If that's really the case, then I will struggle through it willingly. Why shouldn't I limp along for awhile? Even if I wasn't wounded physically, most of who I am was completely broken and transformed.

Of course, as life on earth seems to be, several of our friends have been suffering also in the loss of children. Living through it with them has brought back many memories, thoughts, struggles. One repeated question is: How could a God who loves me allow such a horrible thing to happen? I, myself, first asked this question the night Micah was first put on a ventilator. For awhile, I have simply told these parents that God chooses to glorify Himself in ways that we do not understand. However, there must be a better answer. I may never fully understand, but my mind is often consumed with different scriptures trying to piece it all together.

One huge thing I learned while sitting for days on end in the PICU, was that many times...most of the time...my definition of things is not God's definition. I've thought alot about God's love for me and His people. God loved us enough to send His own perfect Son to carry the sins of man and die for deeds He did not commit. I don't know that I could ever love someone that much. I know what it's like to watch my son suffer terribly and die. God's love must be beyond the greatest of this world! But what kind of love is God's anyway? Throughout the Bible, we learn that God loves us, but His love acts very different from my own. So what is God's definition of love?

I'm sure we've all heard this comparison, but it's really helped me lately. One thing God is called is God, the Father. If we see God as the parent and us as the children, it seems to make more sense to me. (Although, today's parents have taken some of that understanding away) In order to love Matthew, I often make him go through things he does not enjoy. In fact, some things I require of him make him hurt and cry. I remember very well the first week of school last year. He's never been one to choose to color, so holding a pencil definitely wasn't something he looked forward to. After many battles just trying to get him to hold the pencil, drawing became another problem. He had never used his hands that way, so it hurt when he tried to write. Because I love him and know that he must face this challenge in order to survive the future, I made him write. Not just that day, but every day ever since then. Seeing what life was going to require of him one day, I knowingly put him through pain in order to prepare him for what is to come. Yes, this seems small in comparison with the loss of a child or any loved one, but the application still seems appropriate.

I spoke recently with a friend who is struggling with understanding God's sovereignty. Again, how could a loving God actually allow such tragedy? My simple answer has for awhile been...because it is for His glory. But then, isn't it sometimes hard not to feel used? Obviously, if God is always right, we must not understand. Back to God's definition of love...my church has been going through a study of John Piper's book "Don't Waste Your Life". In it, he says that "...love has been almost completely distorted in our world...We are taught in a thousand ways that love means increasing someone's self-esteem. Love is helping someone feel good about themselves. Love is giving someone a mirror and helping him like what he sees." Piper goes on to say, "This is not what the Bible means by the love of God. Love is doing what is best for someone." Piper explains that it is actually a lethal distraction to make someone see himself as the height of his own affections. We were created to savor God and spread Him throughout all the world. This is what we were made to be completely safisfied in doing. "Not to show people the all-safisfying God is not to love them."

So maybe part of my natural rejection to the idea that God allowed tragedy in my life and my family's lives actually comes from a misunderstanding of God's definition of love. He does love me. He does love my family. He does love Micah. Only He knows something we don't about our future. He knows that it was vital for us to experience Micah's death to accomplish He great and wonderful purposes. Praise be to my God for loving me enough to take away what He has given. Every part of my body rejects this praise, but the mind of Christ that the Lord is gradually giving me knows that God is all deserving of such praise.

Praising Him,
Susan

Wednesday, July 11, 2007 10:09 AM CDT

HAPPY BIRTHDAY to my big boy Matthew!

Matthew turns a whopping 5 years old today. He's so excited to be so big and has been telling everyone that he is no longer a little man, but is now just a man! Personally, I can't believe it's already been five years. These have definitely been some of the most precious years I've known.
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Thank you all so much for all your many prayers. It seems that since embarking on year 2 without our Micah, we have struggled more with our sinful thoughts. Our flesh gets so tired from the hurt, that we often just want to give in. We've struggled more with depression, mainly because we are tired of the fight. Matthew just recently realized that Micah was truly never coming back...not even to visit. Thankfully, the Lord gently reminds us that He is our strength. He nourishes our tired spirits with His living Word and reminds us of who He is.

I thought that after the first year was over, it would get easier, for the mere fact that we'd lived through it for a full year. This allowed me to let my guard down, making me vulnerable. I would unexpectedly get hit from behind by waves of grief. Dates that hadn't hurt so bad last year, have knocked me down this time around.

I'm sure this sounds depressing, but I've learned a great deal through it and now see it as a priceless blessing from my Lord. Struggle makes me dependant on my Savior. If I never had anything to struggle over, I wouldn't need Him. What closeness I experience when I'm yearning for His touch. How much I have realized that He is God and I am not.

Often in conversations with other Christians, our conversations are about the 'now.' We like to focus on what is happening today in our lives. This delinitely has its place, however I think we've forgotten one of our greatest comforts. When we're deep in struggle today, we still have the promise of a perfect eternity. Sometimes focusing on today only encourages my down-heart. But reminding me of my promised future excites me and brings me to my knees. We have been given the priceless gift of an eternity of safety in the presence of the One who controls everything. No more sickness, death, suffering, terrorism, fear, hunger, grief, mistakes, or even hum-drum every day living. Only perfection.

How can we live in depression with that kind of promised future?

Lord, remind me throughout my days to keep Your perspective on this life. Remind me that You are the One who holds tomorrow and controls every occurance. Even in the face of terrifying punishment, King David knew that punishment from a merciful God was better than punishment from man.(2 Samuel 24:14, 1 Chronicles 21:13) Thank You for Your promise of our eternity with You and for Your great mercies. You are our comfort, our peace, our joy. Continue renewing our minds, making us to have Your thoughts. In Jesus' name, Amen.

Much love,
Susan

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July 14, 2007 update
Today is the 2nd anniversary of my wonderful daddy's entry into Heaven. Please remember my blessed mother in your prayers today. She lost her life partner and her grandson within 9 months of each other. She's shown such strength during this long, grievous season. Unfortunately, today ended up being her turn to work her once-a-month weekend. She's trying to see it in a positive light...that at least she's keeping busy...but it's been pretty hard on her. Thank you so much for your encouragement.

Susan

Wednesday, June 6, 2007 6:06 PM CDT

HAPPY BIRTHDAY, DEAR MICAH.....HAPPY BIRTHDAY TO YOU!!!!

We are so very thankful to be able to celebrate our Micah's 2nd birthday today. Although we had always dreamed of seeing him on the day he turned 2, we are still sooooo pleased to have the opportunity to celebrate his absolutely beautiful life. We thought we'd be watching him blow out his candles tonight. We thought we'd be having trouble making him eat his cake...and not just the icing. We thought we'd have pieces of wrapping paper all over the house. But instead, we get the priviledge of imagining him worshiping his Creator. I imagine him thanking our Lord for making him and giving him life, and I am joining him in his thanksgiving.

So many wonderful memories have swarmed us today. What a blessing it is to have happy memories with our little rascal. Matthew and I have remembered all day today what happened 2 years ago. I can't believe it's been that long!

Today Matthew and I went and joined Travis for a picnic lunch during his lunch hour. He's got a busy day at work and won't be home until late, so we made sure to get together for lunch. Then, Matthew and I went and put a Happy Birthday balloon at Micah's grave. Tonight, we plan on having a little party in Micah's honor. Matthew and I made a cake yesterday (shaped like a green fish!). We're looking forward to blowing out the candles and diving in! Following in our tradition from last year, we got Matthew a gift for Micah's birthday. He was so pleased to open his box and find a brand new beagle puppy. He immediately named her Chili. It's been so much fun watching him bond with her, and seeing how responsible he's trying to be. Puppies are definitely one of life's joys.

Thank you again for continueing to stop by. If Micah had never been born, I would have never gotten the chance to know all of you...and what a shame that would've been. So join me in celebrating my Micah's 2nd birthday.

Much love,
Susan

Sunday, April 22, 2007 5:55 PM CDT

Hello Everyone!

Thank you all so much for the many encouraging messages you’ve sent our way. This has been a rather difficult month for us already, but we know that “tribulation produces perseverance; and perseverance, character; and character, hope. (Rom. 5:3-4) On April 23, 2006 our precious son Micah Joshua Fleming went Home to be with our Lord. Now that April 23, 2007 is upon us, we are reminded of that day and the year that followed.

I’ll start with the week prior to Micah’s passing. I’d come upon the Parable of the Persistent Friend in Luke 11:5-10. By this point in our journey with Micah, the Lord had already brought me through a process that deeply engrained in me a desire to know the truth and depend on it completely. I had absolutely zero desire to hear any more opinions on subjects. It had become dreadfully clear to me that human understanding was exceedingly limited. God was/is absolutely real and, therefore, there had to be an absolute truth. I had a clear understanding, however, that I didn’t know it. So that week, the Lord had challenged me with Luke 11:5-10.

I’d been praying constantly for my son, but I’d learned that my definition of things were sometimes incomplete from God’s definition. Verse 8 says, “I say to you, though he will not rise and give to him because he is his friend, yet because of his persistence he will rise and give him as many as he needs.” Maybe my definition of persistence was incomplete from God’s definition. I determined to plead for my son’s life persistently…even if it took all that I had. Throughout that week I prayed so hard there were times I thought I might not survive. There were many times the intensity of my prayers would cause extreme pain in my chest. I began to wonder if I might have a heart attack. Several times I felt like I might lose the ability to breathe. But at this point nothing mattered. If I died, at least it would be for my son.

Toward the end of the week, some of Micah’s cultures came back positive for staph. They didn’t know at the time what type it was, but put him on vancomycin to cover all the bases. However, that Friday the PICU was extremely busy. Even with my repeated reminders, the hospital staff forgot to give him a scheduled dose. By Saturday, he was much worse. That night Travis and I fought hour after hour to get his dialysis tubing changed correctly, but because of a lack of education in that area, the nurses could never get it right. Over and over, his blood pressure would bottom out and we’d get it back up. Travis and I kept insisting that the way the nurse was doing it was different than before, but she was frustrated with us and refused to listen. All the while, our baby was bleeding from his temporary catheter because of all the yanking that was taking place while trying to change the dialysis tubing. By Sunday morning, Micah was no longer responding to my touch.

I’d gone to our apartment for a few hours of sleep while Travis watched over Micah. When I woke up, I continued my persistent prayers. That morning, though, my prayers were different. I remember lying on the bathroom floor, feeling as if there was very little life left in me. In my weakness, I continued to plead with the Lord. “Father, You know that I want my son to live and grow up and glorify You with a life on earth. But he’s suffered for so long and so severely. I know that I haven’t been willing to give him up throughout this process. But if it is not Your will to heal him completely today, then please let him go on Home so he can finally be free of the wretched suffering of this world.” I’d never let myself admit that he might be better off in Heaven than with me. I knew it in my head, but to tell it to God was too terrifying. I’d finally reached the point of surrender.

When I arrived back at the hospital, the staff were preparing to replace his catheter. It had gotten a clot in it from all of the repeated attempts to change the tubing the night before. For the 2nd time, we were asked to sign papers expressing our will if anything went wrong with the procedure. Because of Micah’s condition and the staph infection, this routine procedure could quickly become fatal. The staph infection that was taking over Micah’s body had been identified as MRSA (resistant staph). We were told that even if he survived this infection, he would never truly recover. Changing the catheter was much more dangerous this time because it could easily send a clot straight into his heart. Amazingly, Micah pulled through the changing of the catheter and we began another day of trying to get his dialysis up and running again.

After several more attempts, Travis’s exhaustion was beginning to take over. We agreed that he should go eat some lunch to regain a little energy. By the time he returned, however, things were much worse.

Micah’s vitals were no longer bouncing back as they always had before. His room was covered up with medical personnel. Travis and I weren’t sure what to do, so we decided to get out of the way. However, one of our favorite nurses looked up in the middle of it and told me to go to him. She said he needed to hear my voice. I could barely speak and very few words would come to mind, but she kept encouraging me to talk to him. All I could think to say in my precious baby’s final moments were, “I love you, baby. Mommy loves you more than she can stand. I love you.”

All the while, Travis couldn’t believe what was happening. He was so stunned to realize that this could very well be it. There had been so many times the hospital had told us he probably wouldn’t make it, but he would anyway. Surely this was just one of those times. That is until the dr. looked up and told us that at this point they would normally be pumping his chest. They gave us another chance to change our minds about resuscitation, but we knew it would do no good. Why make his death violent and terrifying? We just longed to hold him once more.

Travis asked if I could hold him and they allowed it. My arms had grown so restless to hold my baby, and yet now they still weren’t satisfied. Micah’s heart was beating slower and slower now. I guess the respiratory therapist could tell that I longed to kiss my little buddy’s cheek and asked if I’d like for him to take out the ventilator tube. His whole face was covered in tape to hold it. I nodded and he gently pulled out the tube and revealed my beautiful baby boy’s face. At some point during all the commotion, his lungs had hemorrhaged, so now he was bleeding from the nose and mouth. It was heart wrenching to see, but at this point all I wanted to do was kiss his delicate face again and again…no matter the bleeding.

I looked over at Travis sobbing and moved his little boy into his lap. Travis became the strongest man I’ve ever known in those months in the PICU, but that day I saw an unearthly strength revealed in him. The dr. came in to turn off the monitor. Our feisty little Pistol Pete went Home listening to his Daddy’s voice….”I love you buddy, I love you, son”…over and over.

For one final time, Travis, me and my mother, gave our Micah a bath. He loved baths before treatment more than anything. He used to splash so hard there would be water dripping from the ceiling. It felt so good to clean his little body again. After so many painful baths, he was no longer hurting. We could hold him and he would no longer wince in pain. When someone walked through the door, he no longer cried from fear of what they were going to do to him. Micah was free now. No more pain, fear, suffering. Just pure, holy fulfillment. In our agony we felt such joy for him.

We went home and prepared to tell Matthew. He had gone through horrific grief seeing Micah in the PICU, so we didn’t know what to expect. We took him for a walk outside and explained to him that Micah had finally received the healing we’d prayed for. He wouldn’t live with us anymore, but he was going to live a great life in Heaven. Instantly, the fog cleared from Matthew’s eyes, and it was clear an enormous burden had been lifted from his young shoulders. Even when we used the word “death”, Matthew still felt joy. He was sincerely relieved that Micah was no longer hurting. I remember trying with all I had to hold back the tears. At one point, Matthew looked at me and asked, “Did the wind blow you, Mommy?” Matthew and I had been having several conversations about God. He didn’t understand how God could be here and he not be able to see Him. I had told him that God was like the wind…that we couldn’t see it, but it was still there. Now, Matthew was asking if I felt God’s presence. What precious children the Lord has given me.

Although this has truly been one of my worst nightmares come true, God has used it tremendously in my life. I can now say that it was all worth it for me to come to so many understandings about my Lord, and I know more is to come. My sister, Jeanne, was talking to me last Friday. I remember telling her that it just didn’t seem as if a year had past already. I can easily recall every detail as if it happened yesterday. It’s still so fresh and raw. In her gentle, sweet voice she almost whispered what I have been gradually realizing throughout this year, “It may always be like that, Susan. Those raw memories may never leave.” In the past, I would have seen this as depressing. But now, I know that it is something to truly be treasured. I have an experience in my life portfolio that God will be able to use to teach me things from for the rest of my life. The pain from that experience was so intense and permanent, that I will always be drawn to my Lord in worship, praise, and admiration. Pain graciously causes us to seek the Lord’s help and intimate relationship. What a blessing and honor it is to hurt for my son while learning about my Lord.

A favorite author of mine, John Piper, writes in his book Life As A Vapor, “For those who believe that God rules purposefully and wisely over all things, our response to loss is a signal of how much idolatry is in our souls. Do we really treasure what we have lost more than God and His wisdom? If we find ourselves excessively angry or resentful or bitter, it may well show that we love God less than what we lost. This is a very precious discovery, because it enables us to repent and seek to cherish Christ as we ought, rather than being deceived into thinking all is well.” I can see how this comment could anger some…because I believe it would have angered me about 2 years ago. However, now I have a blessed understanding of it. Deep, deep down my family was the absolute top priority in my life. I knew God should be, but could never make myself loosen my grip on my precious family enough for Him to truly be first. The thought of losing one of them terrified me…to the point that I was anxious about it all day until we could all be together again at night. When we went to Duke, I knew it was possible to lose Micah. However, I thought God would somehow keep him safe, if only for the fact that He loves me. God’s always blessed me in my life. Why not then? (I can be quite prideful.) You see, as every human does, I struggle with the misunderstanding that I am good and important. (My goodness lies in the fact that the Holy Spirit lives in me.) This way of thinking caused me to put myself above God. The way it was manifested was in my desire to protect my child…even if it meant stepping out of God’s will. This put Micah before God in my heart. There were so many times along the way that I’d know I should pray for God’s will to be done, but couldn’t bring myself to pray it. In my prayers, I would often “lay down the rules” for God. Micah was going to live…here on earth….free from any health problems…and have a normal childhood. In my mind, I knew I was turning my back on God out of fear He would take my son.

I remember reaching the point that I knew I had to submit to God’s will. It felt horrible, as if I was having to surrender my son’s life. But for God to be able to return to His rightful position of first in my heart, I had to release my grip on everything else in life. Even after that turning point, I would repeatedly have to lay Micah back down at His feet throughout our stay at Duke. I had a constant tendency to snatch Micah back into my own grasp and try to do it without my Lord. Each time, God would forgive me and use the experience to teach me something new and wonderful. I’m sure some might ask “Why then? If it feels so horrible, why do it?” Because without God, I am nothing. Without God, I can do nothing. I’ve seen man’s ways of dealing with problems. I assure you, without God man can do nothing. Once I realized this, I was able to experience true freedom in being within God’s will.

Our sole existence in this life is to worship and glorify God, the only One worthy of praise. It is a pointless existence to try and run from such a purpose. God is in control. He has a sovereign plan. Even in our most horrific nightmare coming true, we must worship the God who is worthy of praise. This keeps us in His will. After seeing a touch of the horrors of this world, I KNOW that I never want to be out of my loving God’s will. Micah may have died on this earth, but he is perfectly alive and well in Heaven. My hope is in the Easter story….God’s holy Son came down to earth to be tortured and sacrificed so that I might live. I will live after my earthly death and go to Heaven. There, I will see my precious Lord in all of His glory and worship Him alongside my precious husband and sons.

I will always long and ache for my beautiful, spunky little boy. But praise be to God, He is using this longing and aching to sanctify me in preparation for the time I get to go Home to be with Him.

Thank you for taking the time to read all of this. I know it’s long….but it’s really not even half of what I wanted to write. You are all such a blessing, and your messages encourage us so much.

With love,
Susan

Monday, March 12, 2007 11:26 AM CDT

Today is an important day for our family. Today, it has been exactly 10 months and 17 days since our Micah went to Heaven. You see, the Lord let us know, see, smell, hear, and experience our Micah on earth for 10 months and 17 days. Although at one point it seemed utterly impossible, our family has now survived as long without Micah as we did with him. There have been many times we weren't sure if we could make it through another day, much less this far. Maybe we can do this after all...

One thing we have learned from this, though, is that even though he's in Heaven, Micah will always be in everything that we do. We knew we'd never forget him, but we didn't realize how he had been able to touch and become a part of every single part of our lives. Even the things he never got to do brings memories to us...because they were things we dreamed of seeing him do. There is never a moment that goes by that doesn't bring with it a thought or memory of our boy. At first this was torturous. But throughout the past 10.5 months, the Lord has taught us to adapt to and even become thankful for our life seperate from Micah. Our family is closer than ever before. We are all three completely different people than what we were before, and we've never experienced such a strong dependency on our Father. What a mark to leave on your family when you go.

All three of us talk of going Home periodically. We've always longed to be with Jesus, but experiencing Micah's suffering and death gave us a better understanding of the realities of this world. Sometimes it catches me off guard to see Matthew go through this. He has no fear of Heaven right now. Just yesterday, we were out hiking in the Talladega National Forest and came up on an old cemetary. We walked around taking in all the history of the area. While there, Matthew began asking if we would get him a grave. My immediate reaction was to think...please don't say that! But he had no bad feelings concerning this subject. If his brother has one, why shouldn't he? So we told him that we did get him a place beside Micah's, but that we hope we never have to use it. That's all it took to satisfy him. No more grave talk.

It's been a while since I last updated. The Lord has graciously kept me very busy. Travis's work has slowed down a little since the end of the Christmas season. And Matthew is thriving in his schooling. There was about 2 weeks somewhere in there that Travis and I were under the weather. Travis got the flu and I got food poisoning...all at the same time. The Lord allowed Matthew to escape it all, though.

Thanks for stopping by.

Much love,
Susan

Tuesday, January 23, 2007 8:18 AM CST

Today has already been somewhat difficult. It was one year ago today that our precious Micah suddenly stopped being able to breathe well on his own and was put on an oscillator. The memories are haunting.

The day before Micah had shown improvement. We were actually able to take him out for a walk in the hall. We were so excited to finally get to hold him again. That night was one of the very few times I felt safe to go to our apartment to sleep. Travis stayed with Micah and I got to spend the night with Matthew. I got back the next morning to find Micah having trouble breathing and no one seemed to notice! As it turned out, this must have been exactly when the labored breathing began. We fought all day to keep from going to PICU. Finally, that evening Micah just couldn't do it any longer. His oxygen saturation began to drop and showed no signs of coming back up. The PICU team came rushing in and began bagging him. He was absolutely terrified. His eyes were the size of saucers and he kept trying to find someone familiar to look at. They unhooked the bed and prepared the IV pole so we could begin our journey to ICU. However, even while being bagged his sats were dropping. The PICU team was racing him down the hall as fast as possible. Travis even had to help push him and the IV pole because the PICU team was in such a frenzy. All the while the only thing that seemed to make him calm any was to hear our voices, so all down the hall we were trying to speak to him, loud enough to hear over the commotion, not loud enough to scare him more, and without letting our voices quiver. I remember thinking they were basically throwing the bed through the halls and around the corners.

We finally made it to PICU and the team was able to stabilize him temporarily. Travis and I had about five minutes to make a decision on whether or not to put him on any assistance. It was the thought of how well the day before had gone that made us choose to put him on a ventilator. It took a great deal of sedating meds to finally get him calmed down enough for the oscillator. He was so scared and a strong fighter.

This was the first time in my life that I've ever been tempted to be angry at God. I felt betrayed. But it was this moment that would change my relationship with my Lord forever. From this day forward, God began calling me back to Himself...this time to learn who He really is and why I am really here. If I hadn't had my experiences in PICU with Micah, I might would have never truly understood the sovereignty of God and my purpose for being created. Because of this experience I can say with confidence...even though I know God could have prevented the death of my son, I trust Him. For He is God, worthy of worship. His deeds are always right, no matter my opinion. This is such a comfort to me.

While we were battling it out in PICU, Matthew was still on the Bone Marrow Unit playing with social workers. Throughout our time in the hospital thus far, Matthew hadn't seemed to really notice what was going on around him, or at least it never bothered him. The drs. wouldn't let us stay while they worked on Micah, so we went back to the Unit to check on Matthew. It took a great deal of control to keep from sobbing in front of Matthew, so I'm sure he could sense something wasn't right. We got him from the social workers and simply took him back to Micah's original room. We didn't even think to prepare him for anything yet. However, when we entered the room Matthew quietly walked in and began walking in circles where Micah's bed had been. A couple minutes later, Matthew began screaming while walking in circles, "They took him! They took Micah! The people took him!" It was the most horrified screamed I've ever heard come from Matthew, and hope to never hear again. We tried to calm him, but nothing seemed to work. So the social workers agreed to let us take him to Micah's "new room". However, when we got there, they were still working on Micah so we couldn't let Matthew see him. Just seeing the door to Micah's new room wasn't enough. Matthew couldn't be convinced that someone had not taken his brother until he saw Micah for himself. We went through about an hour and a half of trying to keep Matthew calm before we were allowed in to see him again. But even as Matthew saw his brother on an oscillator, shaking all over, and unconscious he began to calm down. This however, turned out to be when Matthew's grief began. He grieved tremendously during our 3-month stay in PICU. It was Micah's suffering that grieved Matthew most. When Micah finally went Home to Heaven, Matthew finally found peace. He has been happy for his brother ever since. He misses Micah terribly and talks about him all the time, but is pleased with the knowledge that Micah is now safe and big and strong.

So many memories...Thank you for letting me tell you about them.

Much love,
Susan

***Please also keep baby Donovan's family in your thought's and prayers. He relapsed after his 2nd transplant and finally went Home to Heaven this past weekend. He fought hard and suffered much, yet always seemed to be smiling. He had such a personality. Praise be to God for having mercy and letting him go Home to safety and complete healing. Their website is www.caringbridge.com/in/babydonovan

Sunday, January 14, 2007 3:06 PM CST

Today is the last day of a week-long vacation from UPS for Travis. Because the Christmas season is so hectic for him at work, we decided to stay home and rest. Easier said than done.

Trying to get someone to slow down whose not used to being allowed to slow down can be somewhat difficult. The first four days of his vacation, Travis worked just as hard as he does at work. He'd decided to build us some bookcases for our office and was determined to get them completed much sooner than humanly possible. They are abolutely beautiful, though. Not quite finished, but beautiful. He made us two 7 feet tall bookcases that match our piano's wood perfectly. The only reason they aren't totally complete is because...I decided to help, and we're having to redo the stain on four of the shelves. Oops!

Toward the end of the week, my mom and brother, David, came up to visit. My birthday was yesterday, so we had a weekend filled with fun. We played boardgames late into each night. David worked almost all day yesterday trying to fix my computer problems. (I always have computer problems...maybe it's the user) My mom played outside with Matthew. We devoured way too much cake. We even made it to Red Lobster by 3:30...which allowed us to still eat from the lunch menu, and beat most of the crowds. They had to leave this afternoon right after church, but they are already greatly missed.

Yesterday was also the anniversary of the first dose of the Mesenchymal Stemcells that Micah received. This was the experimental treatment that God used to help Micah recover from such horrific graft vs. host disease of his intestines. The company that makes the MSCs has been so good to us. They allowed Micah to have the cells even when he didn't completely fit the criteria for their study. They came to observe the first dose given to him. The President & CEO also came to visit us and gave Micah gifts. After Micah had received all of the doses normally allowed, they arranged for him to continue receiving them. He ended up receiving triple the amount anyone had ever received at the time. When our precious Micah passed on to our Home, they made the grieving process easier by paying the entire funeral bill and completely covering the costs for his beautiful headstone. The outpouring didn't stop there. Since then, the President & CEO has periodically contacted us to see how we are doing. What a completely unexpected blessing the Lord has provided in Osiris, the pharmaceutical company. Forgive me, Randy, if I forgot to mention something. Your generosity has been abundant.

I know I've mentioned before that time has not really helped in the hurt. The loss of Micah hurts so deep. Travis often describes it as feeling as if someone has driven a knife deep into his stomach and is twisting it. Matthew constantly tells us everything that reminds him of Micah, how much he loves him, and how strong he now is in Heaven. However, we are now beginning to see how completely changed we are. The Lord used Micah's life, health, sickness, suffering, and death to transform us. We are now seeking to find ways to not only honor Micah, but also glorify the God who created him. What can we do that will make the greatest impact for His Kingdom? How do we get ourselves, our sometimes dibilitating grief, out of the way so that the Lord can use us? It's a wonderful place to be. We have so much hope in the Lord.

Thank you all for coming by. We so appreciate your faithfulness to our famiy. We come by here everyday to check out the guestbook.

Much love,
Susan

Tuesday, December 19, 2006 10:35 AM CST

****UPDATE 12-28-06...
Thank you all so much for the many prayers for Travis's dad. He gave us a scare, but has now begun to respond very well to treatment. We are praying he will be able to go home by New Years. Many, many thanks.


MERRY CHRISTMAS EVERYONE!

I’ve been thinking a lot on Christmas lately. (Who hasn’t, right?) Everywhere I turn I seem to find people bickering about it somehow. Can we say ‘Merry Christmas’ in public, or should we say ‘Happy Holidays’ instead? If there are Christmas trees up in public, a Star of David should have to be beside them. Are we lying to our children when we say Santa’s real or is it ok in the 'spirit' of Christmas? BLAH!

Have we forgotten “the reason for the season”? I think I have…or maybe I never really knew it. Don’t get me wrong, I’ve always enjoyed celebrating Jesus’ birthday. My parents were wonderful growing up…making sure that the Christmas story was read on Christmas morning. But when I’m honest with myself, Jesus’ birthday doesn’t spark the same excitement in me that getting together with family and opening gifts does. Lately, I’ve been thinking, “What’s wrong with my picture of Christmas?”

I think I’ve looked at Christmas from the wrong angle. It is wonderful to celebrate Jesus’ birthday…However…maybe it would be better if we looked at it instead as the long-awaited coming of our Savior. I don’t think most of us realize our desperate state without our Savior, therefore the excitement of His birth has been dulled. We have a tendency to forget that the wages of our sin is death (Rom. 6:23). Actually, sometimes I think we may even forget that we have even sinned! (Rom. 3:23)

I had quite a bit of time to think about myself last year while Micah was in PICU. The hospital can, at times, be somewhat like a prison cell…sitting in the same spot hour after hour, often in complete silence, constant guilt of past decisions, and Micah’s room had a monitor so any word spoken could be heard at the nurse’s desk. I experienced quite a battle in my mind during the 3 months of ICU. The product of that battle was a realization that no matter how ‘good’ my motives may seem (even to myself), they are more often than not rooted somewhere in selfishness. In my defense, I would sit there and think of something good I’d done. Immediately, I’d remember my motive behind it. Almost every time, if I dug down deep enough, I’d find my selfishness at the root of it all. Yes, it was covered up with good thoughts and actions, but the selfishness was the root. I’d always sort of believed that people could be good if they tried hard enough. Well, I’d tried…and as it turned out, even my good deeds had bad somewhere in there. God used Micah’s long, drawn-out suffering to convince me of my DESPERATE need of Him. I could not, in my own strength, ever truly be good…because hidden somewhere in the depths of my heart is always a desire for myself. Thankfully, I knew that Jesus’ blood had covered my sin and He’d become my Righteousness (Jer. 23:6).

Without our Redeemer’s arrival, we could not EVER be worthy of God’s presence. Christmas should have one of the most humbling effects on us. Instead of the normal excitement of Christmas, we should instead experience a zeal from the realization that we have been given the gift of an eternity in the presence of a holy God when we have done absolutely NOTHING to deserve it. The celebration of Christmas should bring us to our knees…thanking God for His marvelous grace, realizing the MANY sacrifices Jesus made for us, praising God for His holiness, and realizing that without Jesus’ blood we would be going to hell…no matter our good deeds.

All of this, of course, is dependant on whether or not we have given our lives to Christ. If you have not completely given your heart and life to Christ, you will go to hell when you die. You are not worthy of being in holy God’s presence, therefore you will not enjoy Heaven. However, God gave His Son, Jesus, so that all the world might be saved (John 3:16). You can enjoy God’s grace. You see, Jesus’ blood was shed so that our sins could be cleansed. If you receive Jesus as your Lord and Savior, His blood will cleanse you of all the bad in you, and you will be MADE worthy of being in holy God’s presence. With Jesus as your Lord, you become worthy of spending eternity in Heaven in the presence of our King.

************************************************

Our family is doing well. This month has been a little harder on us for many reasons, but we are still doing well. Travis has been working nonstop trying to get all the Christmas gifts delivered. He’s pretty exhausted, but has kept a good attitude through it all. I’ve had a hard time emotionally…getting all the Christmas decorations out, trying to find ways to make Micah a part of our traditions, etc. So many hard memories from this time last year.

Yesterday, Matthew and I were having our daily Heaven talks. Matthew has such an interest in Heaven. He just soaks up any bit of knowledge that I have about it. So when I casually said that all we have to do to get to Heaven is ask Jesus into our hearts, Matthew proceeded to ask Jesus to please come into his heart three times in a row. I was pretty stunned! Then I realized he was sitting there waiting to go to Heaven. He thought that as soon as he said “the magic words” he’d get to go! We had to back track a little after that. He was a little disappointed to find that he’d have to wait until he died to go to Heaven. He misses Micah so much. It was pretty heart-wrenching to see the disappointment in his eyes when he couldn’t go see Micah right then. However, it is thrilling for me to watch Matthew yearn for Heaven.

I hope you all have a Merry Christmas, celebrating the coming of our Savior, our Redeemer.

Much love,
Susan

Wednesday, November 22, 2006 9:36 PM CST

HAPPY THANKSGIVING!!!

What a blessing-filled year we have experienced. No amount of grief can cover up the fact that this is one year I have seen God work! THAT is what I am most thankful for this Thanksgiving.

I am so thankful that I still have Travis. Going through this with him has truly been an amazing experience. We've only been married five and a half years, so our relationship is still young. I remember talking with our social worker about my fears of marital problems when Micah was first admitted to start the transplant process. She was comforting, saying "You'll be surprised how many couples say they actually grow closer through this." She was right! I saw Travis make decisions no man should ever have to make. I saw him forgive medical staff after they'd made a fairly large mistake. There were times I thought he might end up punching somebody's face in, but he remained controlled. He was calm in the midst of panic. He learned the language of the hospital...to the point that he became known to the medical staff as Dr. Travis. He often neglected his own pain and emotions to tend to the needs of other families. He was willing to give everything up to keep us together as a family. He handled all of our financial needs, even when he was having to stay awake every night and sleep what little he could during the day. Even now, as he struggles with being consumed by grief, he constantly expresses a desire to glorify our Lord. He selflessly puts aside his feelings repeatedly in order to keep our family balanced and happy. I have never been more thankful.

I am thankful that I still have Matthew. He brings light and laughter to all of my days. His grief is so innocent, it's almost enjoyable. It's so nice to have little conversations about his baby brother and watch him draw a story of our family of four. He gives me energy. When I can't find a smile in anyone around me, I can always find one in Matthew.

I am overwhelmingly thankful for Micah. Someone recently asked me if I could go back to the day I got pregnant and start all over, would I do it again. Most definitely YES. The pain of losing Micah is nothing compared to the joy and love that simply saying his name brings me. Yes, this past year was painful. No, I would never have wanted him to have suffered. But because he was conceived, born and lived for 10.5 months, I know who to expect to see when I get Home. He won't be running to me screaming "Mama!" He'll be on his knees crying out praises to our God. What a joy it will be to join him!

I am thankful for you...my caringbridge family. There is a part of me that would love to find each person that has ever signed our guestbook and go visit them. I would love to wrap my arms around each one of you, shed a few tears, and tell you how special you are to me. This past weekend I was sharing with a friend how to get her husband a caringbridge site. In trying to convey how important it has been to my life I finally just said, "When I was too weak and disoriented to pray, I could go to my guestbook and pray other people's prayers for my family." Thank you...for holding me up when I was too weak to stand.

I am thankful for God's Word. How did I ever live without it? When pain threatens to consume me, the words I read in my Bible come to life and soothe my open wounds. I cling to every word.

I'm thankful for my family. There aren't too many people that can honestly say that everyone in their family serves the same Lord. My granddaddy was just saying this to me this past weekend. As I thought for a minute, I realized that each person in my family loves my God, and this binds us together with an unbreakable bind.

I am thankful for my church. To be a part of a body of believers that truly encourages the accurate study of God's Word has been humbling for me. They were there for my family before they really had a chance to get to know us. They sacrificially gave so that Micah could receive his treatment. They cleaned and took care of our home while we were gone. They periodically sent us gifts. After Micah's death, they FILLED our home with groceries, planted flowers in the the flower bed, set out bouquets to make our home more like a home, wrote us notes, pressure washed our house, and who knows what all else! Then, as we worked through adjusting to our new life, they encouraged us to put our energy into serving others, gently and gradually nudged me back into music, and took the time to hear our hearts.

I am also thankful for the memory of Thanksgiving last year. This was our last night together in our apartment before Micah was readmitted into the hospital, never to come home again. Travis and I had the best time preparing our meal. The MeFine Foundation had donated all the groceries for it. Of course, we didn't get to eat it until about 9:30 that night because of Clinic and meds, but it didn't seem to matter. I'd made rediculous-looking indian headresses for both the boys, which they wore all day in Clinic. Micah wasn't feeling well, but we still made the best of it and had a great time. I even remember telling Travis that I thought it was the best Thanksgiving we'd ever had.

I could go on and on, but I may have to finish in the next entry. This has gotten pretty long.

I would like to say, though, that I am also thankful for my new brother-in-law. Many of you got to know Karen, my sister, last year. She gave up a whole semester of school, changed her wedding date, and moved to N.C. to help keep my little family together. Well...Karen and Mitchell got married this past Saturday and are now Mr. and Mrs. Mitchell Hudson. Their wedding was beautiful and alot of fun. They are now enjoying their honeymoon in the Caymen Islands.

Thank you all for coming by.

With love,
Susan

Wednesday, November 1, 2006 12:59 AM CST

I figured it was about time I updated again. Time seems to go past sometimes without me noticing. Our family is doing well. We’ve had our ups and downs this past month, but overall we have enjoyed God’s blessings.

Travis has had an extremely busy month at work. They’ve been changing computer systems and rearranging routes. This prevents him from ever knowing what to expect the next day, and has caused some very late nights. However, I can see how the Lord has worked in Travis’s life this past year and a half. He makes a conscious effort not to complain and takes advantage of each moment he has with us.

Matthew seems to really be enjoying school. I’m so proud of him. He’s able to read words, recognizes numbers, has great picture comprehension, has GREATLY improved on his handwriting and drawing, and almost tripled the time he can hold his concentration. I’ve thoroughly enjoyed teaching him. The relationship we’ve been able to build through this is such a blessing. In order to “broaden his horizons” a little, we’ve signed him up to take a phonics class at our local private school. He’ll be taking a class every Saturday morning for a month. I’m really looking forward to seeing him interact with other students and another teacher. The best part is that they really want parents to attend. This way I can know what he’s learning and continue on with it after the month is over.

For me, this month has been difficult. As far as our everyday routine goes, I am extremely blessed and enjoy every second with my husband and son. However, there are so many dates right now that remind me of great suffering for my little Micah. Micah has been gone from us for six months now. I would have thought by now it would be at least a little easier, but not yet. I am coming to an acceptance that maybe it won’t ever get any better, and that I must simply learn to adapt to it. This seems to make sense to me after all that I’ve learned. The Lord has been bringing me through the Old Testament…somewhere I was always bored with and didn’t really see much significance in prior to the loss of my son. However, God has used this “boring” O.T. to safely carry me through tremendous grief and suffering. I was in Deuteronomy 4 yesterday when I read, “Only take heed to yourself, and diligently keep yourself, lest you forget the things your eyes have seen, and lest they depart from your heart all the days of your life.” (Deut. 4:9) Then in Deut. 6:9 I read, “You shall love the Lord your God with all your heart, with all your soul, and with all your strength.” This made so much sense to me! This was right before Israel was going to finally be given their Promised Land. They’d waited 40 years to receive it. However, they wouldn’t have had to wait that long at all had they only surrendered complete obedience to the Lord that had carried them through miracle after miracle. You see, Israel had a bad habit of forgetting Who they were dealing with. They had received blessing after blessing, experienced miracle after miracle, been consistently protected and provided for, and they still had a tendency to forget God and go their own way. I CAN RELATE! I have a desire to do right and follow God….most of the time. But the only way my relationship to my Lord can truly work is if I am complete consumed by Him. I know what being consumed by something means. You see, for the past year and half I have been consumed with pain for my little Micah. For the past six months, I have been consumed with the grief of his death.

I had a harder week last week than normal. We had gone down to my mom’s for the week and busily worked to prepare for my sister, Karen’s, wedding. Throughout that whole week, I kept thinking of God, praying here and there, but never really stopping to worship Him in spirit and in truth. I kept pushing Him aside until “next week when I’d have my schedule back.” Well, next week came and I began to experience what my life now is like when I am not consumed with living for and loving my God. I was consumed with grief. It hit hard and unexpectedly. Now when Matthew made room for Micah in our grocery cart, I wanted to run back to my car and cry for a few hours. When I lost a button with Micah’s picture on it, I went to each store I’d been to and gave them my personal information. Then I went home and cried on the phone with my mom and then again with Travis. The worst, though, happened last Saturday morning. I was slowly waking up, in and out of sleep, when I heard Micah cry. It was the faint, weak, high-pitched cry that he had resorted to right before being admitted to the PICU. It literally sounded like pain. Then I began re-living when we had to put his catheter in. I saw which nurse it was, heard the nurse giving us explanations, and felt Micah’s cheek when I kissed him…as if that could possibly take the pain away. I just kept kissing his cheek over and over again, whispering “It’s o.k., Buddy. It’s o.k.” Then, I woke up. This “flashback” affected me throughout the whole day. I felt as if I were being haunted. Good memories I love. Bad memories are torture.

So when I came upon Deut 4:9 and 6:5, it revealed to me that the secret to avoiding being consumed with grief and haunting memories was to be consumed with constant, deliberate, worship of my Creator…Micah’s Creator. If I stay diligent in my perspectives, viewing life and instances as God, Himself, views them…I will not forget the lessons learned, but can focus on the glory of God instead of the past suffering of my baby. Keeping God’s view fresh on my heart and mind is what prevents me from forgetting what I’ve seen without being haunted by it.

With God’s perspective, I enjoy making room for Micah in our grocery cart. Yesterday, I was explaining to Matthew that the angels in Heaven continuously say, “Holy, holy, holy, is the Lord God Almighty.” We’d been having a discussion of what Micah sees and experiences now that he lives in Heaven. Then, Matthew asked me what Holy means. I thought for a minute and came up with “perfectly clean”. I reminded Matthew of how clean we had to be at the hospital and told him that God doesn't have to go to that kind of trouble. He doesn’t even have to wash his hands over and over to be that clean. He just IS that pure. God IS holy...perfectly pure, sovereign, worthy of absolute praise. What was strange, though, was that I got as much out of that conversation as Matthew did. I guess I need things explained to me as if I am a 4 year old sometimes. I am so thankful I am Matthew’s mommy. I learn so much from him.

Thank you for stopping by. We so enjoy all the guestbook entries. We check them daily.

Much love,
Susan

***Please note the change of our email address. It is now travisandsusan@gmail.com

Tuesday, October 3, 2006 2:31 PM CDT

Today marks one year since Micah was admitted into the hospital for his transplant. We had to arrive at 4:30 that morning to have his central lines put in. I remember giving him his last bath the night before...hoping that if I stared at his beautiful little chest long enough, I'd never forget how perfect it was before the lines. He loved bath time...to the point of soaking the ceiling many nights. I already hated the fact that there would be no more bath times, but I comforted myself with the hope that more would eventually come. They never did, but he can now enjoy baths to his heart's content!

Early in the morning will be one year since the chemo treatments began. The drs. had said that once the chemo went in there was no turning back. I remember waking up each time the nurse came in that night. Each time I'd pray, "Father, please stop this if it isn't Your will. Tell me to say no before they start the chemo. Somehow let me know if I need to stop them from giving it to him." There was only one time I didn't wake up when the nurse came in that night. I woke up right as she was getting ready to leave. She said she'd just started the chemo. I missed it! My only comfort was that maybe this was God's way of insisting that I not interfere. Now there was no turning back.

The next week was filled with chemo, little sleep, tons of nervousness, one small seizure, and finally transplant day.
Transplant day was Oct. 13. Poor Matthew couldn't eat or drink anything the whole day because he was getting his bone marrow harvested to help save his little brother. My precious Matthew, who I rarely let any dr. or nurse touch, was now going to be sedated and have his first surgical procedure. He did wonderfully, not ever even requiring any pain medicine. I missed the first half of Micah's transplant because I was downstairs in recovery with Matthew. But Micah had lots of family with him. I actually ended up having to carry Matthew (all 40 lbs. of him) all the way back to Micah's room from recovery. The poor little thing was so out of it he couldn't even stand up. I was pretty worn out by the time I made it, but the energy came back at the sight of my Micah-Picah.

The whole transplant process went perfectly. Micah engrafted on Day 10 and only stopped eating for about a week. He had a little diaper rash from the chemo, but it responded well to treatments. He experienced a little nausea and one day of difficulty breathing. However, this was considered a very easy stay for a transplant. Micah was discharged quickly on Day 20...before most patients have even engrafted. We had three wonderful weeks in our little apartment, not being readmitted into the hospital until the day after Thanksgiving. We treasure the memories of those few weeks. We still spent most of our days in clinic, but these are our last memories of being home together as a family of four.

I miss being that family of four, sometimes fearing that others might forget...maybe fearing that I might forget. I struggle everyday with the knowledge that I have two children, but only having the priviledge of caring for one.
It helped tremendously, though, yesterday when we went out as a family of three to visit Micah's grave. It finally has a monument. Travis and I went ahead and got our stones also...a visual statement that this baby is not alone and has a loving family. On the back of our stone, Travis and I put the names of our children. Seeing that really helped to bring a little more closure for me. Right there, written in stone, was the fact that I truly am a mother of two boys. We really are a family of four. No one can forget it...not even me.

Thank you for all of your precious comments and prayers.

With love,
Susan

Friday, September 8, 2006 9:08 PM CDT

It was one year ago tomorrow morning that we all set off on our journey to North Carolina...believing that this was going to give our Micah a normal, happy life with us for years and years to come. We so wanted him with us for the rest of our lives...our Micah-Picah, Pistol Pete, Pete-Picah. I have wished so many times that I never set off on that journey to Duke...so much regret...so much guilt. And yet, it was through Micah and that journey that God taught me about His sovereign plan. I've learned more about God's character, sovereignty and love from his precious 10 and a half months than ever before. It has been through Micah’s life that I have learned about faith, grace, worship, and Heaven. So because of my beautiful baby boy I’ve been blessed with a little more of God’s precious wisdom and a hope of being with him and our Lord for the rest of eternity. I can only imagine the fulfillment that he must be experiencing, and that keeps me going. I love you, baby boy.

With love,
Susan

Wednesday, August 23, 2006 9:35 AM CDT

Today marks our fourth month living without the sights, sounds, smells and touches of our most precious little Micah. We keep waiting for the day when “time will ease our pain,” but we are increasingly aware of how untrue this statement is. What has eased our pain is our dreams of what he is experiencing, and our hope to experience it with him one day.

The Bible has become such a crutch for me. I leaned on it heavily during our struggle to keep Micah here on earth, and now I can’t seem to function without it. There are days I want to zombie around, draining life from those around me. BUT if I can spend some time in God’s Word, somehow it gives me the most calming joy, a peace surpassing understanding.

I don’t know if Micah can see us from Heaven…I doubt he would need to…but I want to live my life in a way that would make him smile. How I miss that grin! I am increasingly aware of the fact that my amazing Micah actually KNOWS Jesus! He is actually in God’s presence and nothing is hidden from him. I hate thinking that he could look down from Heaven and be disappointed in the way I am living. I don’t want him ever to say, “No, Mom, you know better than that. Come on now!” I look back toward the beginning of the Bible and throughout those first stories I find myself saying, “Come on now, Israel, you know better than that!” So now, I am trying to live obediently in faith, trusting that even though my circumstances say one thing, my God has lovingly directed me another way…true joy. This really is the only choice, and I am thankful. I find this joy in God’s Word and in the knowledge that I have given my baby the best life has to offer…perfection.

Obviously, we struggle. It’s been really hard for Travis lately. He goes to work in the hot sun, comes home and goes to bed. There’s never any time to nurture his broken heart or wounded spirit. He is so faithful, though, and continues to trust that God is in complete control and has a specific plan for our lives. What strength God has given my husband.

Matthew continues to speak of Micah daily. Sometimes I find myself almost thinking he’s still here. Matthew has such a way of including him in everything that we do that it almost seems kind of normal sometimes. My body still aches for his touch. I still long for his giggle and hate missing all of those precious milestones. But then God reminds me of the beauty of our situation…Micah’s experiencing Jesus!

Matthew started preschool last week. We are doing it at home and he is responding well. We’ve only had one HORRIBLE day so far. Last Thursday, Matthew woke up saying that he didn’t want to go to school. Of course, at this point there was no turning back. So, we spent most of the morning in a “training session” on holding the pencil. He didn’t want to hold it, and I was demanding it. I thought the day had basically been wasted, except for the fact that he knew we would have school no matter what he wanted. But the next day, Matthew actually repeated his lessons! Somehow in all of what I thought was chaos, he had actually learned something! It was definitely an eye-opener for me. I have really enjoyed our school time. I’m sure there will be days I’ll want to send him to another teacher, but I pray that God will give me the strength and wisdom to endure through those times. What fun children are…and how inspiring!

Thank you all so much for your continued prayers and messages. They are never overlooked. I have seen what friendship is through you.

With love,
Susan

Prayer requests:
CAMPBELL EATEN: This is a little seven year old Anniston, AL boy that has been in PICU for about 11 weeks. They still have not figured out what has caused his intense and uncontrollable seizures/brain swelling. Please be in prayer for him and his family. www.prayforcampbell.com

BABY DONOVAN: This little guy has been fighting cancer since birth. He is now heading toward two years old after having enormous doses of chemo and a bone marrow transplant. His parents have recently been told that he now is showing signs of possibly having two forms of cancer. This has been devastating to his family and friends. His site is www.caringbridge.org/in/babydonovan

JASHAIA: ***Update on 8-26-06...Precious little Jashaia got to go HOME today. She and her family fought valiantly to keep her here, but the Father knew she deserved better. Please shower them with hope and encouragement as you do so well.*** This little girl had a bone marrow transplant back around November for Tay Sach's. Right now she is in a life and death battle...on a ventilator, kidneys keep threatening to quit, and possible fluid around the heart. This family is FIGHTING. Please remember them. www.caringbridge.org/visit/jashaiasjourney

MAX JORDAN: (Unfortunately for his family, I am having to edit this request. Sweet little Max slipped into Jesus' arms today at 3:05. His parents are experiencing the utmost of agony right now. Please flood them with your encouragement.) This little guy has also been fighting cancer from birth. He just began the process of a bone marrow transplant, but his little body has had too much to fight. He is back and forth on a ventilator and each day is constantly in question. www.caringbridge.org/visit/maxjordan

***These parents are weary, but determined to keep fighting. They are going without food, sleep, and many other essentials. They depend heavily on your encouragement.

Monday, July 24, 2006 12:10 AM CDT

Yesterday marked three months since Micah began his new life with Jesus in Heaven. It has been an exhausting, yet invigorating three months. We've experienced pain and suffering to the extreme, and yet have learned more in this past year than ever before.

God has used this past year and a half to show us what it is like to have God-given faith, strength, peace and probably more! We have experienced what it is like to be led by the Holy Spirit to do things that didn't make sense and to see God's power unfold.

God's hand has stayed on us consistently. Yesterday, during our Bible Study time at church, God led our teacher to focus on Phil. 4:6-8. Memories came flooding over me. This is one of the many passages I held onto for Micah's dear life. At the time God led me to it, we had already been told that Micah would die three different times. I knew how bad things were and yet I still had to keep fighting until there was no more fight to fight. So I held on to Phil. 4:6-8. "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."--Phil. 4:6-7 There were times when each minute seemed to require that I give my anxieties to Christ through prayer and, unbelievably to me, I would actually receive the peace of God. Our situation at that time was way beyond peaceful...it was a constant struggle...but the peace of God was still with me. How was that possible? Actually, we often got strange looks and comments from people who didn't understand why we had this peace. Sometimes we'd even look at ourselves acknowledging how freakish we must look, but knowing that God was it's source.

"Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy--meditate on these things."--Phil. 4:8 I remember going through each one of these "whatever's" and finding something to meditate on. When my panic, grief, hopelessness, exhaustion, fear, etc. would rise up within me I would begin to think on my "whatever's". This "skill" has greatly helped during our time of loss and grief over our precious little boy. We choose not to focus on our earthly pain and only focus on the joy Micah is now experiencing.

The Holy Spirit has closely led us so that we can glorify God through our grief. We've been surrounded by God's Church. They have encouraged us not to allow ourselves to be consumed with self-pity, but to use our pain to reach out to others. Amazingly, reaching out to others has many times been what has gotten us through extremely hard times. We've been able to use the energy (or lack thereof sometimes)that pain can cause to help someone else. This has forced us to learn more about God's character and fall more deeply in love with Him.

The Holy Spirit had also placed on our hearts a desire to guard ourselves against old habits of selfishness. We didn't want to come back home and be exactly the same people we were when we left for NC. We wanted to honor Micah's memory with the life lessons his life taught us. We're still learning, but this desire has kept us going on many occasions.

Thank you all so much for checking on us, praying for us, sending us priceless letters, and supporting us in so many other ways. You have been an enormous source of strength throughout this year and a half. We love you dearly.

With love,
Susan

Tuesday, July 11, 2006 12:52 AM CDT

HAPPY BIRTHDAY, MATTHEW!

Our BIG boy is 4 years old today. What a fast four years it has been!

He's already had a BLAST at his birthday party last Saturday. The house was FILLED with people that love him and now it's filled with gifts from people that love him.

Now we're gearing up for another birthday party that he will share with his cousin Elizabeth this coming Saturday in Swainsboro.

The Lord truly has blessed us. This Friday will be one year since the death of my dad. What a blessing to have so much to celebrate during a week that could potentially be so hard. Please remember my mother and my dad's parents this weekend. They've done so well this year and have been great examples of strength and faith.

Thanks to you all. HAPPY BIRTHDAY, MATTHEW!

With love,
Susan

Friday, June 16, 2006 8:45 AM CDT

I am still amazed at the people who are so faithful to our family through this website. I cannot express how thankful our family is to all of you who continue to tirelessly come and check on us and leave sweet encouragement even when I don't keep new updates constantly. I may not update often, but we still check our guestbook daily. Your words stay in our hearts throughout our days, and we are forever thankful that you are such a huge part of our lives.

Travis has adjusted well to going back to work. It has been a hot summer for any UPS driver. His first week back, he lost about 15lbs. in water weight. I'd forgotten about seeing the salt deposits on his clothes when I do the laundry. There has been a change in Travis, though. Travis has never been one to complain, and has always had a giving spirit. But, since going back to work this time he seems more content. It is still fairly obvious that he is still in a fair amount of grief, but his perspective on things has changed. He doesn't get upset about the trivial complaints of customers. Instead, he tries to be more understanding in their circumstances. He can't always help them or change the way he's required to do things, but his heart doesn't get irritated or angry by the inconvenience. He seems to be able to take the heat and harsh demands of his job with much more ease...not because it's not as hard, but because he has determined in his heart that it will never compare to the suffering he's already lived through.

The hardest part of Travis going back to work is missing him. He leaves at 7:30 in the morning and we don't usually see again until 7-ish at night. At 8 Matthew has to start getting ready for bed. Matthew will still periodically run to the window looking for Daddy. He asks me daily where his daddy is, but is gradually becoming more accepting of my answer. Poor Travis tries to use Saturdays to catch up on a little rest, but Matthew is so excited to have him home. He just can't stand to let Daddy be still!

We also had a wonderful "Micah's Birthday". I really feared this day. I was afraid of the loss I might feel, knowing how a baby's first birthday was supposed to be. However, I think I grieved that loss in the weeks prior to his birthday. When his birthday finally arrived, all we did was celebrate. My mother came up the weekend before his birthday. We spent the whole weekend making flower arrangements with toys in them and painting little toys to decorate with. Matthew had a blast helping us put balloons on the grave and making sure each toy had its special place. My sister, Jeanne, and her two children were able to come up for Micah's actual birthday. This was such a joy. I appreciated her allowing me to help take care of them. My nephew, Elijah, is now the age Micah was when he got really sick. Jeanne allowed me to talk freely about Micah and didn't mind when I seemed to constantly compare her healthy baby to Micah. She just let me enjoy.

We also gave all the children in the family "Micah's Birthday gifts". They weren't elaborate gifts, but the children seemed to thoroughly enjoy them. Travis never has time to eat lunch with us, but he called that morning and said that he could possibly work it out. So off we went...I had three full carseats in my van! What fun it was just to drive all those kiddos! We had a picnic in the van...in the high school parking lot...while people were voting...and it was great. That night, we were able to enjoy supper as a family and go out and visit Micah's grave one more time, just the three of us. We all held hands, leaned over Micah's grave and sang 'Happy Birthday' to him. Matthew just loved all the celebration. After that, some friends came over and we all sang 'Happy Birthday' again, blew out a candle, and ate cake. This was actually my first cake I've made since high school. It was a little interesting looking, but tasted good.

Micah's birthday was filled with phone calls and visits from people who grew to love him throughout this past year. What a joyous day! How could I have ever asked for more.

Since then, I've kept us all busy. I can't seem to stay still for long. There's still so much unpacking to do, and so many people that we haven't gotten to spend time with yet. If I get too still, I can easily have a pity party...so off we go.

Matthew and I went shopping for Father's Day yesterday. It was strange, though. This will be my first Father's Day without my Dad, and Travis's first Father's Day without his son. How do you shop for that? I think it went well, though. Please be in prayer for Travis on Father's Day. There is nothing my husband loves more than being a Daddy.

Well, I guess this has been long enough. I've really missed updating more often. Thank you for being so faithful. I'll try to do better.

With love,
Susan

Tuesday, June 6, 2006 5:00 PM CDT

HAPPY 1st BIRTHDAY TO OUR DARLING, MICAH!!!

We are so pleased to be able to say that today is the anniversary of our second son's birth. Although he is no longer here with us, we are in great celebration that God allowed us to know, love and care for him during his 10 months and 17 days on this earth. It has been a delight remembering this day one year ago and all the events leading up to Micah's birth.

Thank You, Father, for letting us know Micah. We are forever grateful for this past year.

With love,
Susan

Tuesday, May 30, 2006 3:39 PM CDT

This week is another time of transition for us. Today Travis went back to work for the first time since Sep. 2, 2005. He was a little nervous, but excited; and overwhelmingly thankful to have a job to go back to. It was a very emotional morning, as he had to go back to work with only one living son (for whom we are very thankful) and had to face being "normal" again. "Normal" hasn't even been in our vocabulary for almost a year. We're a little rusty!

I've been enjoying Ecclesiastes lately. Today I was in chapter 7 and had to smile frequently. "A good name is better than precious ointment, and the day of death than the day of one's birth; Better to go to the house of mourning than to go to the house of feasting, for that is the end of all men; And the living will take it to heart. Sorrow is better than laughter, for by a sad countenance the heart is made better. The heart of the wise is in the house of mourning, but the heart of fools is in the house of mirth. (7:1-4) How true! I have loved the Lord for some time now, and Travis and I have dedicated our family to Him. We left Alabama for North Carolina with our hearts set on glorifying God, yet still yearning for a storybook ending. However, the tragic suffering God put us through changed us in ways that could not have occurred without the pain.

One of my favorite lessons has been learning to praise God in the midst of suffering. I would have never known the amount of surrender that takes without being in the most intense pain of my life. I remember feeling as if my heart might actually be breaking, having every muscle in my body flexing, and literally falling on the ground; finally being able to say, "I praise You, Lord, no matter...."

Now, I find so much comfort in giving thanks and glory to God, especially when I'm extremely emotional. I lean on thoughts like Solomon's in Eccle. 8:15, "So I commended enjoyment, because a man has nothing better under the sun than to eat, drink, and be merry; for this will remain with him in his labor all the days of his life which God gives him under the sun." This verse isn't giving permission to enjoy unbridled overindulgence. It's saying to make the decision to enjoy your circumstances. There have been times when I've wanted to drop everything and wallow in my sorrow. But I have so much to be thankful for, and a beautiful family to take care of. I'm learning to take my time and savor each precious moment with my husband and son.

Speaking of my son, Matthew is continueing to do well. He's thoroughly enjoying having so many children to play with and loves swimming. Yesterday was one of the few times he has actually gotten sad. All morning, Matthew kept asking me if I was crying. I'd say no and move on. Eventually, Matthew ended up saying, "Are you crying, Mommy? Do you miss Micah?" Finally, my light came on. I asked him if he was crying. He said yes. Then, I said, "Do you miss Micah?" "Uh-huh," was his reply. So the rest of the afternoon Matthew and I spent looking at, kissing, and rubbing pictures. He never actually did cry, but seemed to enjoy remembering his brother. We sang all of our little songs and reminded each other that Micah was safe, happy and praising God and Jesus.

Thank you all for remembering us. We still check our guestbook daily and lean on you for strength. What a blessing God's church has been for us this year.

With love,
Susan

Tuesday, May 23, 2006 11:22 AM CDT

Well, today it has been one month since Micah began living with his heavenly Father. The ache from not being with him throughout our days is tremendous, but the joy from knowing that he is safe, whole and happy is just as huge.

Thank You, Father, for protecting our boy...Your boy. We are so thankful that You entrusted us with him during his brief little life. We are honored that You have chosen us to be his parents. Praise be to You.

Matthew is doing well. He has obviously had quite a bit of adjusting to do throughout this year. It's amazing to us how much Matthew understands what has occurred, and we see the wisdom it has seeded. Micah is a constant topic of conversation with Matthew. Matthew has such confidence and security when it comes to his brother. He hasn't really seemed to experience loss yet. Maybe it's his pure innocence...he's so happy for his brother.

Thank you all so much for your continued prayers and encouragement. You have been such a source of strength for us and will continue to be.

With love,
Susan

There are two precious friends of ours in need of prayer. The first is little Kaylee Krause. She is in the PICU on an oscillator. Her parents are so faithful and consistant in their battle. Please join us in prayer that this little Joy will be completely made well and be allowed to live with her family here on earth. Her website is www.caringbridge.org/visit/kayleekrause

The second, is Graciela Esparza. She has had many ups and downs in her little life, but has continued to stay on top inspite of her obstacles. She has been allowed to go home to Indiana, only to be put back in the hospital there. Right now, they are looking for the source(s) of her problems. Please pray with us that they can quickly pinpoint the problems and easily solve them. Her website is www.caringbridge.org/visit/gracielaesparza

Wednesday, May 17, 2006 10:54 PM CDT

How precious all of your words have been to us. Just as you carried us through the fight for Micah's life, you are carrying us through the grief of his death.

It has been a crazy few weeks for us. I believe God allowed for us to be extremely busy in order to help us cope with the intensity of our emotions.

One of the hardest and most surprising things to deal with has been balancing so many conflicting emotions. We are overjoyed to finally be home, but there's a huge part of home now missing. We are also extremely thankful to be a 'normal' family again. I've missed just being Matthew's mommy for so long. What a blessing to finally have time with him again. We are sincerely thrilled that Micah is finally safe, free from suffering, where there is no more crying and no more pain. I've never been prouder to know that my son is continuously praising his Father; absolutely living in the perfection of His will. I'm so thankful to finally have my husband back. For so long our marriage was merely a small conversation exchanged while passing when one of us went to be with Micah and the other went home for some quick sleep. And yet...the pain of not seeing, touching, smelling, hearing our beautiful Micah every day is indescribable. I honestly think that our bodies are experiencing a certain amount of withdrawel from not being with him. My skin actually hurts at times for longing to touch him again.

I am so thankful that I have my God to carry me through. The fog has been so thick lately that at times the only thing I can clearly think is, "God is God and worthy to be praised." He led me to Ecclesiastes this past week. "What profit has the worker from that in which he labors? I have seen the God-given task with which the sons of men are to be occupied. He has made everything beautiful in its time. Also He has put eternity in their hearts, except that no one can find out the work that God does from beginning to end." (Ecc. 3:9-11) We are to trust in God's sovereignty, knowing that all things are made beautiful in there time.

Thank you all for being so faithful to our family. All of your words, gifts, cards, emails, etc. have been so comforting and inspiring to us. We have learned so much from you.

With love,
Susan

Monday, May 1, 2006 10:33 PM CDT

****I just added a link at the bottom of the page for those of you who would like to hear the messages and view the slideshow from Micah's funeral. Thanks to John McLeod for creating this page for us.


Hello dear family and friends,

Thank you all so much for all of the loving words, cards, emails, flowers, money, food, etc. We have been showered with support this week...not to mentioned the past year of support.

There have been many people that have come to me throughout this past week saying that they don't understand how God could have let this happen. I don't understand it either, but let me share something God's been showing me this week.

On the drive home from N.C. last Tuesday I began to read Ruth. What came to my attention the most, though, was Naomi. Naomi and her husband were extremely Godly people, very well respected. One day Naomi's husband died, leaving her a widow. Then, both of her sons died, leaving her two daughters-in-law widows. Naomi's view of this was that "the hand of the Lord has gone out against me!" (Ruth 1:13b).

Naomi was convinced that God was against her. She says, "Do not call me Naomi (pleasant); call me Mara (bitter), for the Almighty has dealt very bitterly with me. I went out full, and the Lord has brought me home again empty. Why do you call me Naomi since the Lord has testified against me, and the Almighty has afflicted me?" (Ruth 1:20-21) Poor Naomi felt hopeless, like there was nothing left to live for. However, she still insisted that God was sovereign.

Because of Naomi's faithfulness (even through grief), God created a way for her to be David's great-grandmother. In the broader scope...an ancestor of Christ.

I say all this to say...God is GOD. We may not understand what He is doing in our limited way of thinking. BUT, God is still GOD. Don't get me wrong. There have been countless times that my emotions have cried out, "WHY?". This is especially hard when I picture my beautiful, perfect baby boy in that grave; when I dream I hear his cry only to wake up to the knowledge of his death. BUT...God is still God. Without faith, Micah's life and death is in vain.

Throughout Micah's life, Christ's church has pulled together. We have fought, knowing that all around us is a spiritual battle. We must not lose focus. Micah's death was not the end, but rather a beginning.

Through our grief, we must say, "You are Lord and I trust in You." Job said, "Though He slay me, yet will I trust Him." (Job 13:15)

Thank you for being so faithful to Micah and our family. God provided you because He knew we'd need to lean on your strength.

I plan on continueing this site. There is still so much to share and so much to learn. I also hope to get a link for you to be able to listen to the message preached at Micah's funeral. You've been such an enormous part of our lives, I'd love to share it. When I get it up, I'll let you know.

With love,
Susan

Wednesday, April 26, 2006 4:36 PM CDT

Thank you all so much for your loving words of support and precious prayers.

We have made funeral arrangements for this weekend.

The visitation will be held at Chapel Hill Funeral Home in Anniston, AL from 6-8p.m. on Friday, April 28.

The funeral service will be held at Gladeview Baptist Church in Anniston, AL on Saturday, April 29 at 2:00p.m.

Burial will be at Pleasant Ridge Cemetary in White Plains, AL following the service.

Thank you,
Susan

Sunday, April 23, 2006 6:28 PM CDT

We are thankful to be able to finally say that Micah is having a great day. He is comfortable and strong; able to giggle and has a twinkle in his eye.

As we discussed with Matthew earlier today, God has two ways of healing. The first is with earthly healing; where Micah could gain strength and eventually come home with us to Alabama. The second is perfect healing. This is what God decided was best for our perfect baby boy today. In spite of our best efforts to keep him here with us, God decided that Micah deserved the best. He took Micah Home to be with Him today sometime around 2:30 (don't know the official time). Travis and I were both blessed to be there, and both got to finally hold him again.

Though we are in tremendous grief, we are so very thankful to know that nothing can ever harm our baby again. He is free, strong, happy, and completely whole.

Thank you for being so close to us through this time. We will let you know details as they are arranged.

With love,
Susan

Sunday, April 23, 2006 0:13 AM CDT

Dear Family and Friends,

Update:Sunday 11:30AM
Susan just called me. They are going to have to change the dialysis cath. It working fine until the hospital insisted on a set change last night even against the advice of the Dr. The administrator said they could refuse, but they would be refusing dialysis, because protocol said the set had to be changed. Several other things were said by the dialysis nurse, but I won't put them here. Anyway, things have not worked since then and now the catheter has to be changed. In addition, the staph infection is resistant to all anitbiotics. This is bad for anyone but for someone with a suppressed immune system, it is especially bad. They do plan to continue the Vancomycin to try though. Please PRAY! PRAY! PRAY!

Saturday was not an easy day. There just didn't seem to be any improvement. Susan found out that they never gave him his dose of Vancomycin yesterday, even though she had mentioned it at least 5 times. Blood levels showed he needed it but the Dr. never got around to writing the order. They said it was due to the fact they had a lot of emergencies in the PICU yesterday. How is he supposed to get rid of a staph infection without his medicine? Fortunately, today it did get ordered after Susan checked on it again. He finally got it this afternoon. Set changes with the dialysis have also been a major problem. I hate for things like this to happen for Micah because he really needs good care. (All the children in the unit do). I also hate it for Susan and Travis. Days like this affect how tired they are, because they cut down on their rest. Also, neither of them eats or feels as well when they do eat when all this takes place. And of course Matthew senses the tension from everyone.

Fortunately, some friends from Anniston came to visit and Matthew is loving having them here. It is also good for Travis and Susan to see some friends from home.

We know that God is faithful and that nothing can touch Micah without His knowledge or permission. Sometimes it is hard for us to understand but we know that God knows what He is doing. We give Him praise!!! Thank you for your prayers.

Love,
Linda

Friday, April 21, 2006 11:15 PM CDT

Dear Friends and Family,

There is nothing new that I know to report tonight. Micah didn't keep his formula down one time today. They seem to think that it might be due to how much sedation he is on. It seems to me he is always asleep. I miss him holding my finger when I put it up to his hand and moving his head when I talk to him. I know this is to help the discomfort of the tubes and to keep him from fighting the ventilator but I still miss it. Blood pressure is a little lower even with the Dopamine drip continuing but not too much.

Tonight was supposed to be a set change but the nurse they had tonight admitted that she did not know anything about this machine, so they arranged to have it postponed until tomorrow.

Thank you for your prayers and continued support. Please continue to pray.

Love,
Linda

Thursday, April 20, 2006 10:46 PM CDT

Dear Family and Friends,

Thank you for your prayers. God is answering them. Today we found out that his blood cultures showed he has a staph infection. This might not sound like an answer to prayer but it is. When he gets an infection he always loses his platelets and his BP tends to go down. Well the unknown cause is now probably known. They started him on Vancomycin today. The Drs. disagreed about him actually having a staph infection. Some believed the culture had been contaminated but others thought his symptoms pointed to it. We are thankful they are treating it. In any case they think they caught it early.

His respiratory rate is back down to a more normal level and his tidal volume is back to normal. More thanksgiving. And the dialysis pressures are doing well. Another good thing is that it has been 2 days since he had to be given blood. His hemoglobin is down to 10.4 (I think) so he may get some tonight or tomorrow. We are very thankful for all of these changes. His blood pressure is still being maintained with the maximum Dopamine drip.

It is wonderful to be back up here and actually get to see all of them. Once again I am so thankful I work with people willing to help me come. It was especially hard for them this time because Charlotte's aunt just went home to heaven. Please pray for her and her family.

Thanks again for all of your prayers.

Love,
Linda

Wednesday, April 19, 2006 7:24 PM CDT

Dear Family and Friends,

I don't think that there has been a lot of change since I added the update to my entry last night. Micah's BP is under control but he is on the maximum Dopamine dose. They are still having trouble with filter pressures on the dialysis machine. They have managed to get some fluid off of him though. There is some remaining swelling. His respirations are lower but still higher than they should be and his tidal volume is still too low.

I did discover some good news though. I don't know how I missed it. Apparently he has been off TPN for about a week. This is wonderful news because it is hard on the liver. I knew he was on the formula but somehow I missed this. Praise the Lord for this good news! Maybe as I return to Durham tomorrow I won't miss things like this.

I was thinking about a particular verse yesterday. Actually I thought there were 2 verses in different settings. Last night I looked them up. Mark 9:14-29. I was thinking about the one casting the mountain in the sea, but I found this one and thought it was the one I was thinking about. Also the other verse was when the father said to Jesus to help his unbelief. Well, it was in these verses also. The verse I was really looking for I found tonight in Matthew 21:21-22. I guess I was supposed to find the first passage last night because the part that really struck me was when the disciples asked Jesus why they could not cast out the demon. Jesus said, "This kind can come out by nothing but prayer and fasting." Now any of you who know me know that I enjoy eating. I had not even thought of fasting for Micah's healing. I was really under conviction. So I decided in obedience to God to fast and pray for Micah today. I had been taught about fasting in the past but it has been a long time (probably before Susan was born) since I have fasted. This is a real part of the Word and I can't leave it out because I like other parts better. And yes, I also asked God to help my unbelief. The verse in Matthew says that the mountain can be moved and cast in the sea if we believe. It also says we cannot doubt. (I need help with that part). Thank you for letting me share this with you. God is speaking and I am so thankful for that! Please continue to pray for Micah's healing and for strength for Susan and Travis. Thank you for your continued encouragement, Bible Verses and Prayers.

Love,
Linda

Tuesday, April 18, 2006 7:24 PM CDT

Dear Family and Friends,

UPDATE as of about 9:00PM. Karen just called again. She said that Micah is having some respiratory problems. His tidal volume is too low and his rate is too high. They think that this is due to increased fluid due to trying to maintain his blood pressure today. She didn't say anything to make me think that any mistakes had been made, it is just one of those things that sometimes happen. Please pray!

I just got off the phone with Karen. She said that Micah is so pretty today. (I think he is always pretty. But I knew she meant that he looked good today.) It has however been a very tiring afternoon. They had blood pressure problems all afternoon and even had to increase the dopamine drip which had been decreased. It was not due to getting too dry from the dialysis because he is over on his fluid intake. They have had problems with filter pressures being too high on the dialysis and are now on the 2nd or 3rd set change since yesterday. I think that they have gone ok though.

Good News! Yeast has not been growing out of the cultures. We are very thankful. However he can't seem to maintain his platelet count. They originally told us this was due to the yeast infection but if the yeast is gone what is the problem? They do not know. Anyway they had to give him platelets twice today.

They had to replace the ND tube for his feedings. Along with this they also replaced the NG tube at the same time. Both went well and the formula has been restarted.

Actually when Susan held Micah yesterday he was in the bed. She was laying next to him but she had him in her arms so she was still holding him. There are too many lines and tubes to reach out of the bed.

Please continue to pray. We appreciate your prayers so much and they help to encourage us. Please pray God will give us more faith, also. Thank you.

Love,
Linda

Monday, April 17, 2006 7:05 PM CDT

Dear Family and Friends,

I'm sorry I was not able to update sooner. Micah seems to be improving over last week. Last week was really scary. His ND tube is stopped up and they are working to get it unclogged. The problem is that means he is not getting his formula. Please pray that it will open up soon. He is off the epinephrine drip now but is still on the dopamine drip for his BP but that is improving also. The pneumothorax is gone. So far blood cultures this week have not shown any yeast. We are very thankful for these two things.

Susan and Travis are very tired and cannot seem to get rested from last week. Please pray for them. Last week was very tiring both physically and emotionally.

Susan was able to hold Micah today for about 2 hours. Karen says he really looks good today. Maybe Mommy holding him helps a lot.

Thank your for your continued prayers and support.

Love,
Linda

Friday, April 14, 2006 8:26 AM CDT

Dear Family and Friends,

Thank you for the continued prayers and encouragement. The pneumothorax has resolved! Praise the Lord! The respiratory therapist says they see this a lot in children but to see it resolved so quickly by only using 100% oxygen is unusual. We know why. God answers prayer! Yesterday afternoon his ventilator rate had to be increased because he was not breathing more than it was set and it was not enough. He was deep asleep though and we hope that was why. He would arouse especially if he was being moved and let you know he did not like it. Then he would breathe more than the settings. I am sure he was very tired from the day before.

I was able to talk with the Dr. yesterday morning. He and the rest of the medical staff keep stating this is all due to the yeast infection and all of the organ failures. We talked about the tremendous loss of blood the other day. He tried to tell me it didn't matter because they were giving it to him as fast as he was losing it. They weren't because it takes time to get it ordered, ready (they wash the cells before giving it) and then it has to be given over a long period of time. You lose it quickly. He was very nice though and admitted that God can work miracles. He told me as he was leaving that he was a Christian and that praying was always good. I really appreciated it. I know that they have to tell us the gloomy medical part but most of them almost snear at our faith.

As the nurse was working around his dialysis lines yesterday he had to answer the phone and he told Micah, "Now be still, don't move Micah" Micah immediately started moving his foot around. You know I really enjoyed that disobedience!! And it really didn't matter so it was ok.

Blood pressure and heart rate are still being maintained by Dopamine and Epinephrine drips. The Epinephrine drip is a very tiny dose and his heart rate did not drop yesterday. His blood pressure did drop some yesterday but not critically like the day before. Maybe soon they will be able to wean him off these.

They let Susan lay in the bed with him on Wed and cuddle him. He did not like being moved to make room for her until he realized she was right next to him, then he began to nuzzle his head right up to her shoulder. She was going to lay with him yesterday and they would have allowed it but he seemed so tired that she thought it might be better to wait until today. They are going to try to do this more often. Other than just leaning over him to hug him and give him a kiss this was the first time they had held him since being in PICU which was Jan 23.

The dialysis set change is this morning. Many of our problems restart with this so please pray it will go well today. As long as the hospital has the sets for the old machines they will continue to use the old machine. I sure hope they learn to use the new one before they run out. That is one reason he lost so much blood earlier in the week was that no one knew how to take care of the problems. Set changes take place every 3 days.

If all is stable today I will leave after lunch to return home to go to work. Karen is here with them. Jeanne and her family are here until tomorrow. They got in last night and Matthew will get to meet his new little cousin, Elijah. Unfortunately Micah will have to wait until he is well enough to be out of PICU.

Thank you for all of your prayers and encouragement. God gives strength to us and your prayers and encouragement are some of what He uses to strengthen.

Thank you,
Linda

Thursday, April 13, 2006 3:08 PM CDT

Hey everyone. There has not been much change since yesterday. The pneumothorax has gotten a little better according to the chest x-ray. We have been able to decrease his oxygen level down to 50% now so that is good. His blood pressure and his heart rate are still being maintained with Dopamine and Epinepherine drips.

Lately Susan and Travis have been very tired. Last night when my mother and I got up here both of them had been up for over 24 hours. This mourning they got some sleep since my mother and I went and stayed with Micah for a few hours.

Thank you for all of your prayers and please continue to pray.

Sincerely,
Uncle David

Wednesday, April 12, 2006 11:50 AM CDT

Dear Family and Friends,

We have another urgent prayer request. Micah has what from Susan's description to me sounds like a pneumothorax caused by being on the ventilator so long. She said they were a little surprised this happened because his settings have been so low. Anyway she called me this AM and that is what the x-ray showed. Because of his trouble bleeding they are unable to put a chest tube in which is the usual treatment. They are doing a lung washing instead and putting his oxygen levels at 100%. When they started treatment his heart did not respond well but medication seems to have that under control now. He is still responding to them and looks pretty good considering all that is going on. Please continue to pray for healing and for strength for Susan and Travis.

I have just returned home to Swainsboro. I hate not being up there with them but I believe I am supposed to be here. My clinic coworkers and manager have been so good to me in working with my schedule so that I can have all my days off together and be up there a lot. I am very thankful to them and for them and for God putting me in such a wonderful place to work. My sister, Kathy is up there with them. I appreciate her being willing to spend her vacation time helping them and caring for Matthew. Karen will be returning to Durham tomorrow.

Thank you for your prayers and encouragement.

Love,
Linda

Tuesday, April 11, 2006 9:58 AM CDT

Hello everyone,
Micah is in need of your prayers once again. He is receiving many blood products today because of what happened yesterday. He went through two vas-cath lines and four CVVHD set changes.He also lost at least 300-500 cc's of blood for the day and night shift. I just got off the phone with Susan and they are going to call wound control and try to stop the bleeding with some special type of dressing. He is bleeding because they had to use the same site as before and he is full of Heparin because of all the set changes. At 12 a.m. his hemoglobin was 10.7, this morning at 5:30 a.m. labs it was 7.2. So basically he is losing blood pretty fast through this vas-cath site. Please pray that the site will stop bleeding and remain sterile and that we can maintain lower heparin levels.

Thank you so much for your steadfast prayers and encouraging
words. Susan and I are forever grateful for your support.

In Christ's Love,
Travis

Sunday, April 9, 2006 11:22 PM CDT

Dear Family and Friends,

This has been a day... The CVVHD machine clotted this morning about 6:00. Fortunately they were able to catch it in time to return his blood. They put TPA in the lines to declot them but to no avail. We found out tonight that the nurse on the day shift put the wrong amount in the lines (not enough) so it did not work. Susan had asked the nurse about the dose each time and she assured her it was correct even though it looked wrong to her. It usually takes a couple of hours to get this from the pharmacy. They had to do it 3 times today. This meant that he did not get started back on dialysis until 10:00 tonight. By that time he was really showing some signs of swelling and his blood gases were showing changes also. It is frustrating for it to take so long because he gets about 1000ml of fluid each day with his meds. That is a lot with no place for it to go. Tomorrow they plan to remove his line and replace it in x-ray due to the fact that cultures show he has a yeast infection and it is in the line. This is scary because he has to be taken off the dialysis machine and the ventilator. He will be bagged going down to x-ray. Of course Susan and Travis can not go with him when all of this takes place. With all the mistakes that have been made and the lack of caring that seems to prevail this is very scary. If they had not been able to restart the dialysis tonight he would have been left off dialysis until they could get an appointment in x-ray tomorrow and have the line replaced and it would have resulted in much swelling. All of this was planned without Susan and Travis' knowledge. Susan was there for rounds but the Dr.s did not say anything about it. Then the nurse casually mentioned it. Needless to say Susan was really upset. She called the Dr. and was told she needed to just learn to trust them. Fortunately the Dr. did show up tonight. We are very thankful to God that the dialysis was able to be restarted. Our prayer is that Micah will start wetting those diapers though and then we won't have to worry about replacing lines.

Please keep praying for Micah's healing. We appreciate all the prayers and encouragement.

Love,
Linda

Saturday, April 8, 2006 10:01 PM CDT

Today was another day. Thank You, Father.

Micah's first tooth has now actually broken through the skin. He really enjoys chewing on a finger!

I really don't have anything new to post. Be sure, though, that as things improve, I will let you know.

"Arise, O Lord; Save me, O my God! For You have struck all my enemies on the cheekbone; You have broken the teeth of the ungodly. Salvation belongs to the Lord. Your blessing is upon Your people." ~Ps. 3:7-8

"But let all those rejoice who put their trust in You; Let them ever shout for joy, because You defend them; Let those also who love Your name be joyful in You. For You, O Lord will bless the righteous; With favor You will surround him as with a shield." ~Ps. 5:11-12

"Arise, O Lord, do not let man prevail; Let the nations be judged in Your sight. Put them in fear, O Lord, that the nations may know themselves to be but men." ~Ps. 9:19-20

"But I have trusted in Your mercy; My heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me. " ~Ps. 13:5-6

With love,
Susan

I've heard through the grapevine that Mason and Donovan are in need of prayer......www.meetmason.com and www.caringbridge.org/in/babydonovan

Friday, April 7, 2006 11:23 PM CDT

FUN NEWS:
Our little fuzz-head is beginning to sprout 2 bottom teeth! They haven't actually broken through the skin yet, but they are already sharp. My nurse this week kept telling me that Micah wanted to chew on his finger. I thought it was gross, but he did have a glove on. Then, today Micah started hanging his mouth open constantly. So, I tried it. Even through my glove, those little gums were obviously sharp! Most of my day was spent standing beside his bed with my gloved finger in his mouth. He thoroughly enjoyed it! (Mommy too.)

Micah's dialysis set change went well. It took almost an hour and a half, but everything went well. I'm sure Micah wouldn't say that, though. Since taking out his arterial line, we have to take a cuff blood pressure every minute during set changes. Although, his temper helped to keep his blood pressure up!

Thankfully, we have had no bleeding since the set change. The heparin bolus was decreased. There is always the risk of clotting the machine when the heparin is decreased. We are so thankful that our Lord kept it from clotting.

We were also able to start Micah's feeds back today. Unfortunately, the drs. thought it would be safest to start slow. So, we started back down at 5ml/hr. He's handled it well so far. Thanks for your prayers.

Again, the enemy is trying to pull us down. After the art line came back positive for yeast, the nurse took cultures from another line. Today, we were told that this line also came back positive. The nurse is now trying to culture all of his lines. He has four lines. The yeast has not yet been identified, but he is being treated with two antifungals.

Because of this the drs. are being very negative. They've been negative for quite some time and we're learning to block their words out. We see so much good happening with Micah. There are so many signs that Micah is gradually getting better. Unfortunately, most of the drs. are in the habit of focusing on the bad. This can be hard to brush off at times, but we are learning. We are constantly speaking God's Word over Micah. Proverbs 18:21 says, "Death and life are in the power of the tongue, and those who love it will eat its fruit." I've never before had such an urgency to memorize Scripture! Please help us in our battle for more life-giving words spoken over Micah than any other words.

We love you all and are so thankful for you.

Susan

Friday, April 7, 2006 7:20 AM CDT

Dear Family and Friends,

Micah was 10 months old yesterday!!

When I arrived here yesterday it was encouraging to be able to see improvement in Micah since last week when I left to go home. Praise God!! Last night when Susan and I were talking with him he would move his little mouth in response to us and would even try to open his eyes a little. It was wonderful to see some response from him.

They were unable to get an arterial line in him night before last after trying a couple of times. The only place they thought they might be able to get one was in the groin. Susan, Travis and the Dr. all agreed they did not think it was important enough to have the line compared to the risk of infection there. So far things are working well using the blood pressure cuff.

The bleeding from the GI track seems to have stopped. Maybe today they will restart the formula and stop the TPN again. Please pray that it will not retart again. Today is the day that the dialysis set-up has to be changed and every time he has started bleeding it has been after the set-up is changed. They have decreased his heparin bolus so maybe that will take care of it. However, God knows where the problem is and He can take care of it.

Blood gases were perfect last night! They are weaning very slowly from the ventilator this time. It seems to be helping. He seems to have time to really adjust to each change and the gases are staying good. Of course we thank God for this change.

Karen has been making little posters of Bible verses and they have taped them to the walls of his room. (He almost has wall paper). On the door the first thing you see as you go in is his name and its meaning and a Bible verse from that book.

Last night when Matthew was praying at bedtime his prayer was so sweet. He asked God to heal Micah and to put a hedge of protection around him. Then he added every one else also. What is so great is the difference in how he prays now. He did this on his own. Susan and Travis have always read the Bible to their boys at night. They don't use a children's version, they use their Bible. You can see that Matthew is learning from this time spent together in God's Word. I praise God for this, as the boys are having a firm foundation built for their faith. I can't wait to see how God uses these little boys in the future.

Thank you for your prayers and encouragement.

Love,
Linda

Wednesday, April 5, 2006 10:22 PM CDT

Right now, we are waiting for the doctor to put a new arterial line in Micah. He's had the same arterial line since January 23rd when we were admitted into PICU. Unfortunately, today we got the news that a culture done on Monday on the A-line has grown some type of fungus. With Micah being immuno-suppressed, it is vital to remove any source of possible infection. Please pray that there will be no bleeding from the resulting hole in his arm.

He will now be treated with extra antifungal medication. This new medication carries more risk of dangerous side-effects. Please pray for protection from these side-effects.

We will try to put the new line in tonight, but they are VERY DIFFICULT to put in babies. Without the arterial line, we will have to take a cuff pressure more than frequently...leading to discomfort and a lot of bruising! Please pray with us that the new line goes in and works on the very first try and no infection results from the new site.

We still have bloody stool and now we have blood coming from his NG tube. His PTT (blood Heparin levels) normalized today and there was less obvious blood in his stool tonight. He's now back on TPN after the Drs. decided to wait another 24 hrs. to start feeds back.

Micah's blood gases were BEAUTIFUL today. Thank you Jesus!!! We were able to wean a bit on the ventilator and our boy seems to be resting well. Please pray with us for increasing strength in his lungs and throughout his entire body.

Thank you all so much for everything...for the prayers, the encouraging words, the songs, and the friendships. We love and appreciate you all so very much and don't know what we would do without you. God has truly blessed us and continues to do so.

Love in Christ,
Karen

Tuesday, April 4, 2006 10:35 PM CDT

Today went fairly well. We weren't really able to wean much on the vent (with exception to going down to 30xygen). This is mostly because his settings are already pretty low. We still have some room to wean, but not near as much. Micah's blood gases have all been good and tonight's was very good.

Micah's blood pressure has been lower than we like them to be throughout yesterday and today. In past experience, this usually means that he is beginning to get a little dehydrated from the dialysis. Please pray with us that our Great Shepherd will lead us and our medical team to take the best steps in correcting this.

Micah continued to give us stool today. Unfortunately, by this evening it was pretty bloody. His feeds were stopped (we'd finally gotten to our goal of 48ml/hr today). He is now getting IV sugar water. The docs hope that this can just be for 24 hours. This seems to happen with many of the dialysis set changes...which is every three days. His labs showed that he had a little too much heparin in him. This time was a little different, though. It seems that the blood caused a "laxative effect" and he had a very liquified stool this evening. Please pray with us that this will stop and that there will be no complications from it. Also, pray that this does not mean that the gvh that he had (where the transplant rejects)is coming back.

Boy, when God wants to encourage, it is no halfway job! Yesterday, we met a beautiful lady that insisted on us continueing in our spiritual and physical battle. Today, God sent the Dillard family to encourage us. This family has basically "lived" at Duke for around 22 years. Their oldest daughter has insisted on living for the past 22 years and is still fighting strong. What a blessing to hear some positive in a place that focuses so much on every ounce of negative.

To God be the glory, great things He has done!

We are waiting for God to reveal His healing on Micah's body. Until then, we press on.

With love,
Susan

Monday, April 3, 2006 9:28 PM CDT

Micah is continueing to do ok. We were able to wean down a bit more on the vent settings again today. It's nice to watch him breathe more "naturally." The oscillator shook him constantly and he wasn't allowed to take any breaths on his own.

He was a little more awake today. In fact, when I'd put my face to his, he'd nuzzle me in return. Oh, how the tears flowed! How I'd love to get him in my arms again.

Please continue to pray for Micah's liver. His bili is still very elevated and the enzymes are also too high.

Micah still seems to be having trouble holding on to his platelets. Lately, he's needed daily transfusions. He also got blood today. We are encouraged, though, because the last time he got blood was Wed. The longest he's been going is three days.

We are up to 42ml/hr on feeds. We are so thankful for this. Micah gets a medicine that is supposed to cause hair growth. However, for months he remained hairless. I don't know for sure if it is the nutrition, but our boy is a fuzzball! My pretty blond baby now has course black fuzz all over his head, forehead and face. I thought I would hate to see this strange hair show up, but I am so thankful he CAN grow hair.

I woke up pretty discouraged this morning. I miss being Matthew's mommy and ache constantly for my Micah. I usually try to renew my mind before I even get out of the bed each morning. But this morning, I was tired and let emotion drag me down. I cried out to God throughout the morning. By lunch, I was still pretty down. We ate and Matthew started talking to the lady eating at the table behind me. I turned around to casually speak to her. As soon as she opened her mouth, I knew God had sent her directly to me. She had no idea who I was, if I was a Christian, or how I would react to her. She just started to quote healing, strengthening verses for me...insisting that I continue in our battle for Micah's bodily healing. She asked Matthew to look her in the eye. When he did, she gently instructed him on how to pray for Micah. She encouraged us with the Word and strengthened us with her own testimony. Whenever she sensed hesitation or insecurity in me, she'd insist on me speaking words of faith. I have been changed by this beautiful lady. She did not want me to leave without being strengthened. Father, thank You for sending a physical being (someone I can actually see) to make Your message clear. And thank you also, Ms. Allean.

With love,
Susan

Sunday, April 2, 2006 9:18 PM CDT

Hi everyone,

Today was a little better. We were weaned from the oscilator to the conventional ventilator. We were also able to wean the settings very quickly. His gases were better today than they have been in a long time. Please continue to pray with us that there is no damage from being on a ventilator for so long.

Micah has not needed a blood transfusion since Wednesday. This is the longest he has gone without one in a very long time. However, for some reason, he has been needing platelets daily.

We finally had some stool tonight and it was leaning more toward the right coloring...it's been a while. Also, we are up to 38 mls/hr. on the feeds. Originally, this was the goal. Now the goal is 48 mls/hr. Thank you Lord for progress.

We are beginning to see signs that some of the damage done last weekend is beginning to heal. Please pray with us that the healing process continues. Micah is finally beginning to look like he did a week ago.

Thank you all so much for praying with and encouraging us during the hard times and the times of progress (like today). We love and appreciate you all.

With Love,
Susan and Karen

Saturday, April 1, 2006 11:21 PM CST

Well, today went pretty smooth until this evening. Micah's feeds are up to 32ml/hr. So far, it looks like he is handling them well. We were able to wean quite a bit on the oscillator and were actually talking about possibly switching to the conventional ventilator tomorrow.

I'm not so sure that's going to happen now. It looks as if we may have gotten behind on Micah's sedation. When a child is on the oscillator they have to remain sedated in order for it to work effectively. Micah began stirring a little around 5:00. When he wakes up a little, he begins to gag on his tube, which causes his heart rate to drop, his oxygen sats drop, and his CO2 rises. All of this leads to a bad blood gas. We've been chasing his sedation around for several hours now. We've also had to increase the pressure support on the oscillator. Please pray with us that we caught this in time and there will be no damage as a result.

Also, Micah's bili was up to 33 today and his liver enzymes were elevated and showing signs of hemolysis. Please pray with us that all of this stops. God is our Great Shepherd and it will be completely Him that leads us down the right path toward healing. The drs. just can't figure it out.

We love and appreciate you all so much.

Susan

Friday, March 31, 2006 9:38 PM CST

Still on the oscillator, but improving. Micah's blood gases were all better today, so they were able to wean him several times.

Unfortunately, Micah's bili has continued to increase since stopping the peritoneal dialysis. Please keep this in your prayers.

Micah has been able to tolerate 26ml/hr of feeds today. The drs. are working toward stopping his TPN (IV nutrition) tomorrow. THIS IS HUGE! Micah has been on TPN since October. TPN is hard on the liver and 800cc of extra fluid, so getting off of it will be fantastic. Our goal is to eventually work up to 48ml/hr of formula. Micah has been under-nourished for months now. Oh, how sweet it is for mommy to know that her baby is being fed.

Since our family care conference yesterday, the staff has seemed to really respond. We actually had two seperate sessions with three different drs. today. They really seem to be making an effort to communicate with us.

Thank you so much for your continued prayers. It has been such a blessing to see the church united in our battle with us.

With love,
Susan

Thursday, March 30, 2006 10:34 PM CST

Unfortunately, Micah is still on the oscillator. This morning's xray looked a little better than yesterday, but it is still concerning the drs. It is our feeling that if we can get the extra fluid off of him, that his lungs will strengthen. However, the drs. fear that this could possibly be a result of extended use of the ventilator or infection. There have been no other signs of infection and no cultures have grown anything. As precaution, however, Micah has been put on another antibiotic. Please pray with us that Micah's respiratory problems can easily be solved. If we can control his breathing, the rest of his body will improve also.

Micah also needs prayer that his fluid issues will resolve. Without an outlet for the fluid, Micah easily gains about a liter in a 12 hour shift. Please pray with us that God will wow the drs. with complete kidney function. When we started dialysis, Micah still had about 25% function but some of his meds were damaging the kidneys. It is not uncommon for people to stop urinating while on dialysis. If we can eventually get completely on peritoneal dialysis it would be easier for his kidneys to start working again. However, this past weekend's PD trial ended abruptly with Micah being put on the oscillator. Somehow, the PD dialysate was making Micah acidic and finally caused problems in his lungs. Please pray with us that all the 'kinks' will be worked out. Micah is not textbook and is challenging the drs. to 'think outside the box.'

As a result of no longer being on peritoneal dialysis, Micah's bilirubin has no outlet. This past Sunday, Micah's bili had gotten down to 16.7. Since stopping PD, it is gradually rising again. Please pray with us that the bili will drop PD or no PD.

We are so thankful to say that Micah is up to 22ml/hr of feeds. No bloody stool. Praise You, Lord.

Today, Travis and I had a family care conference with all of the 'top dogs' in Micah's care. It was slightly intimidating for me, but Travis was great. He was very articulate and was able to clearly communicate our concerns. It was nice to have everyone in the same room. Please pray with us that this will result in better, more attentive care for Micah.

Thank you all so much for your prayers. In the guestbook Lis said that she felt God calling her to "pray for some type of protection or guardianship." This is absolutely true. Whether intentionally or not, mistakes are a constant struggle for us humans. This does not exclude medical staff or parents. I am constantly praying for God's hedge of protection around Micah. The only One exempt from possibly hurting Micah is God, Himself.

"Because you have made the Lord, who is my refuge, even the Most High, your dwelling place, no evil shall befall you, nor shall any plague come near your dwelling; For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone. You shall tread upon the lion and the cobra, the young lion and the serpent you shall trample underfoot." --Psalm 91:9-13

With love,
Susan

Wednesday, March 29, 2006 1:56 AM CST

Dear Family and Friends,

Last night (Monday) Micah had to be put on the oscillator. Susan said you could just see his little body relax. Breathing on the ventilator was tiring him.

Today it was problems with dialysis. They changed the set and had problems with heparin being ordered. They had to get a order for it. Where did the order go? It was supposed to be there and they have been using the heparin. Then about 4:30 the system clotted. This means he lost 90ml blood. This is not a good thing to happen but sometimes it does. Then about 9:00 tonight it clotted again. Susan saw it starting and asked that the blood be rinsed back. The nurse changed to the wrong screen on the machine and was unable to go back. This meant the only way to do this was manually returning the blood. She did not know how and no other nurse in the PICU knew how. It turns out they are not allowed to return it manually, only dialysis nurses can. Unfortunately when they called the dialysis nurse they did not know how either. Therefore because the wrong screen was changed on the machine, Micah lost another 90 ml of blood. That is 180ml total today. Because of this he was receiving a unit of blood when we left a few minutes ago. Because of all the clotting the catheter also had to be changed. During all this time from 9:00 PM to about 2:00 AM Micah is receiving lots of fluid due to meds but has no output. He is very swollen.

I don't really know what to ask for as far as prayer except to pray for his protection and healing. Pray for strength for Susan and Travis. I will be returning home to go to work tomorrow. Because of this there will not be an extra person to help relieve either of them to get a little extra rest as Karen will be taking care of Matthew. This past few days Susan and Travis have been staying together with Micah a lot due to all of the problems and getting very little rest.

Thank you for your prayers and encouragement.

Love,
Linda

Monday, March 27, 2006 9:28 PM CST

Dear Family and Friends,

Before I left the hospital tonight I had Susan write what she wanted me to include on the update. We are a pretty discouraged group tonight although we have not lost our trust in God. We know He is still in control. Below is what she said.

Last night we tried to get the Drs. to turn the CVVHD back on because Micah was really beginning to swell. We knew this mornings chest x-ray would not look good if we did not do something. The Dr. said no. This Dr. was the nephrologist that was on call. (They only have 2.)

We waited all last night for this mornings rounds and still the Dr.s would not make any changes. The bone marrow Dr. who came on this week actually said that he looked as good as before.

We began talking to every Dr. we could think of-all the while Micah struggled to breathe. This is while he is on the ventilator. The respiratory therapist said she was going to get the oscillator ready.

Finally after fighting all day (Travis has been awake at this time for 24 hours) the Dr. over the PICU decided to turn on the CVVHD. It would be turned on at 5:00 this afternoon. Now there is fluid on Micah's lungs and the ventilator settings are high and he is still struggling to breathe. (Although he is beginning to look a little more stable).

The good thing is that his liver actually looks a lot better. Bilirubin 16.7 and all but one enzyme is in the normal range. He is receiving formula through the ND tube at 10ml/hr and it is going well.

His blood pressure is low. Blood gases are too acidic.

This part is from me. His last blood gases were still too acidic and his oxygen saturation is not very good. They are trying to wait on the oscillator, hoping if they get some fluid off his respiratory status will improve. Please pray for a change of heart for some of these Drs. Some of them just don't seem to care. Susan and Travis do not want anything bad to be said about the hospital, but I have a big prayer request. Please pray that Micah will get good care.

We thank you for your continued prayers and for your encouragement.

Love,
Linda

Sunday, March 26, 2006 9:22 PM CST

UPDATE: It is now Monday, March 27 about 9:45 AM. Susan asked me to give everyone an update added to last night's note. Travis called this morning and almost all of Micah's labs are out of whack. Unfortunately he is showing symptoms that something is wrong. His hemoglobin is down this AM and there is no sign of bleeding and he just received blood yesterday. His calcium is up. I'm not sure about the others and what is wrong with them. His respirations are up significantly. Travis said the Drs. are unwilling to make any changes until after they make rounds. (Guess schedules are more important that how the patient looks). His lactic acid is elevated. They were not even going to check it until Travis and Susan insisted last night. Please pray for wisdom for the Dr.s and for Susan and Travis and that we will put all of our trust in God.

One bit of good news, while other labs were not good, liver enzymes were good. Only one is not in the normal range and the bilirubin is 16.1 Thank you Lord!

Thanks,
Linda


Dear Family and Friends,

This has been a frustrating day. If you look at Micah he looks pretty good. He is a lot less yellow-orange than he was a week and one half ago when I went back home to Swainsboro. He is still very yellow but looking better. Bilirubin was 19.7 today. We are in the teens!!!

The nephrologist wants to put 500cc of dialysate in his abdomen each time. So far the most has been 300cc. That was earlier today. The only problem was when they did his respiratory status appeared to go down. His blood gases were not as good as they need to be even though his oxygen saturation was still very good. Susan said you could tell he was miserable though. They drained off the fluid 1 hr early and got 570cc out. That was a lot!!! No one knows why they got so much out. They hope for about 100cc more than they put in. They changed the amount to 200cc in but his gases are still not where they should be although the last one tonight was improving. The nephrologist on call tonight says that the peritoneal dialysis is not working because Micah cannot tolerate the 500cc of dialysate. I'm afraid this does not make sense to me since they are pulling off the amount they say they need to get off each time. He also seems to have a little more edema tonight and we are not sure why this is happening when we are negative on output compared to intake.

Since he is still on the ventilator they are keeping him very sedated. He tried to open his eyes a little this afternoon when Susan was talking to him. He will move his hands to hold our fingers and he moves his feet when he is uncovered. He lets us know he does not like the blankets off. He moves his feet and his head and makes a face. MaMon sure would like to see him really open those little eyes.

Formula through the ND tube will be increased at midnight to 10cc every hour. So far he is tolerating it well.

Thank you for your prayers and encouragement,
Linda

Saturday, March 25, 2006 9:05 PM CST

Micah had a 'good' day. His peritoneal dialysis continued to do well and has done even better this evening. He had a little extra fluid on at the end of this last shift, but hopefully he can catch up.

The new dialysis is made up of glucose. This is causing Micah's blood sugar to be high. It actually got up to 263 today. He's been on insulin for awhile as a result of other meds he's on, but we were having trouble keeping up with it today. After adjusting his TPN (IV nutrition), we've been able to get it back down and have even been able to go down some on the insulin.

We had to change the CVVHD set today (hemo-dialysis). This is always a little unsettling because he can sometimes drop his heartrate and blood pressure. Thankfully, today his heartrate did not change. However, his blood pressure dropped drastically (39/22). We were finally able to get it back up by giving him 100cc of normal saline.

We've actually been dealing with lower blood pressure for the past two days. An echo was done today to make sure there were no major problems going on. Thankfully, it looked good. There's been talk of starting dopamine, but so far, he has good profusion. I just got off the phone with Travis and he said his blood pressure was somewhere in the 60's/30's.

We are learning to depend less and less on lab numbers, but this morning's had some encouragement. Micah's bilirubin was at 21. I realize this is still a very high bilirubin, but compared to the 51 he had two weeks ago, this is major improvement. Please continue to pray for Micah's bili to drop. Normal range is around 0.2.

We continued Micah's feeds today at 5ml/hr. The drs. wanted to make sure that his intestines could still handle it well. We were so thankful they decided to continue them. Micah's stool last night was still a little bergundy-colored. The drs. had said that we would have to stop the feeds if his stool still had blood in it. So far, today he hasn't given us any.

Sorry if this has been a little confusing. My brain's tired tonight. I'll try to be a little clearer next time.

Love to all,
Susan

Friday, March 24, 2006 8:47 PM CST

Well, the peritoneal dialysis was deemed a success this time. Last night, the dr. told me that if we got 20-30cc out he'd be happy. The first pass produced exactly 30cc. Since then, the return has been gradually increasing. Please pray with us that this trend continues. Because of how well things went today, the dr. decided to increase the amount of dialysate we put into him. In the past, we've always put 200cc in him, but today it was increased to 300cc. For a child his size, the goal is usually around 500cc. This seems like such a huge amount. The poor thing gets so big with it. This is actually a convenient time to be on the vent. It makes the transition more stable.

However, because of the amount of glucose used in the dialysate, Micah's blood gases have shown that his blood is a little acidic. Please pray with us that Micah's body will quickly adjust.

We were finally able to start Micah's feeds back today. The drs. have gone back and forth on this all week. Today wasn't any different. The PICU did not want Micah fed, but the bone marrow drs. insisted. We started them out very small (only 5ml/hour). So far, he has handled them well. We are so thankful for this. Micah really needs some good nutrition.

Thank you all so much for your continued prayers and support.

We love you,
Susan

Thursday, March 23, 2006 2:27 PM CST

Hi everyone,

Just wanting to let you know about a few new prayer requests. At this very moment, the Drs. are re-trying Peritoneal dialysis AND starting back Micah's feeds. Please be praying for Micah during this time. This could be huge for us! (The only way to get out of PICU is for Micah to be able to use a form of dialysis other than CVVHD). They are going to keep the CVVHD running at the same time (just in case). So, we aren't expecting a lot of fluid from the Peritoneal, but we definitely NEED a return.

They are wanting to keep Micah on the ventilator while they are trying all of these new things. This way he doesn't have to work so hard to handle the changes.

Please be praying right now for Micah. Pray that God will maintain balance in his little body and help it to heal and adjust to all the new changes.

Thank you so much...for everything.

Love in Christ,
Karen Tamblyn

Wednesday, March 22, 2006 8:19 PM CST

So sorry for not updating yesterday. The site was down when I got home last night.

Micah is remaining "stable." We have been able to wean quite a bit on the vent. in the past 2 days.

Sometimes it seems like we're going in circles. Because Micah had bloody stools, his feeds were stopped. Because Micah's feeds were stopped, his TPN (IV nutrition) was increased. Because Micah's TPN was increased, his bilirubin has not decreased (TPN is damaging to the liver).

Our primary dr. came in tonight and gave us a tentative plan, although she stressed that things could easily change. She hopes to start Micah back on formula tomorrow...very small amounts. She is also going to request that nephrology reconsider Micah for peritoneal dialysis...since the dialysis he's on now can only be done in PICU. After providing his body with some real nutrition for awhile, we may consider trying to extubate him. This could be a slow process. She said that she really thinks one of his main problems now is that he is extremely under-nourished.

It's nice to have a goal, but we know Who holds the real plan. God has a way of making sure we don't get too dependant on the words of the drs.

"Blessed is the man who walks not in the counsel of the ungodly, nor stands in the path of sinners, nor sits in the seat of the scornful; But his delight is in the law of the Lord, and His law he meditates day and night. He shall be like a tree planted by the rivers of water, that brings forth its fruit in its season, whose leaf also shall not wither; and whatever he does shall prosper."---Psalm 1:1-3

Now I don't know if they are ungodly or not (it's not my call), but I do know that we have trusted in our doctors' counsel. I have confessed that as sin and have repented. I am so thankful for God's forgiveness and mercy. Looking back, it really doesn't make sense that I trusted so much in human drs. when the Creator, Himself, was there to take care of everything.

Thanks so much for your continued faithfulness to pray Micah and our family. You are such a huge part of us.

Love,
Susan

Monday, March 20, 2006 9:22 PM CST

We have been so blessed today to have our pastor from AL (Carlton Weathers) and our dear friend, John McLeod (a pastor here in NC)come and pray over Micah. Both pastors held his hands while Travis and I held his feet. They read Scripture, sang hymns and prayed. What a joy it was to experience this time with them and enjoy their fellowship. Carlton and Travis are spending the night with Micah at the hospital. I'm so thankful that God has arranged this. How blessed we are.

Micah had a "stable" day...whatever that really means. We had hoped to wean some of the settings on the vent, but Micah's blood gases didn't leave any room for it today. His last blood gas was a little better, though, so maybe tomorrow.

Micah's stool was still pretty bloody. Our nurse, Mariam, and I looked over his records from the past month. We're pretty sure Micah was given too much heparin one time before...resulting in bloody stool for almost 2 weeks. Please pray with us that the damage the heparin could have done will heal completely and that he will no longer struggle with bloody stool.

Because of the bloody stool, Micah's feeds have been completely stopped. This is so unfortunate because today Micah seemed to be so much more energetic. He was able, for the first time in almost 2 months, to play with his right hand. This is the hand that his arterial line is in and he has always kept it fisted. Except for a few naps throughout the day, Micah has moved constantly. He was squeezing Carlton and John's hands the whole time they were praying with him.

Also, please continue to pray for Micah's bili to continue dropping. It was about the same today as it was yesterday.

We are constantly thanking the Lord for blessing us with so many "warriors" to help us in our battle.

With love,
Susan

Sunday, March 19, 2006 8:50 PM CST

"Be still and know that I am God.......Wait on the Lord...."
These are the quiet words I hear when I seek the Father. What a precious experience God is giving me...total dependance on Him. When my mind goes into a panic and I turn to pray, I'm reminded, "Do you trust Me?" I am honored to experience such intimacy with my Lord.

Even when Micah's stools became bloody this afternoon, Jesus reminded my heart that He has a perfect plan. There is no definite explanation for the bloody stool. Micah was accidentally given too much heparin early this morning...tripling the level they try to keep him at. This could explain the blood. There are many other discomforting things that could be the cause. The nurse took some cultures of it to hopefully rule out any infection. We are also praying that the feeds have not irritated his bowels. His formula was increased to 20ml/hr today, but were stopped after the bloody stools showed up.

Micah's blood gases looked good today. The xray report from this morning said there were some shadows, but no one seemed alarmed. Please be in prayer with us that the shadows disappear and nothing is wrong.

Micah really seems to be resting well. We are so thankful for this. It's so hard to get sleep in the PICU.

Also, please continue to pray that Micah's bili continues to go down. It has a long way to go, but God does not get intimidated.

Thank you all so much for your faithful prayers and encouragement.

With love,
Susan

Saturday, March 18, 2006 10:16 PM CST

Micah was moved to a conventional ventilator today. This is improvement. He seemed to transition well and all his blood gases since have been very good. So far, there has been no sign of asparation from the vomit yesterday.

Micah's feedings were also increased. He was able to get 15ml/hr of formula today and has handled it well so far. I'm not much for math, but that looks like about 12oz a day.

Micah's bilirubin was about the same today. Please pray with us that it will greatly decrease soon.

Oh, how we miss holding and playing with our beautiful Micah. Please pray with us that Micah will soon be strong enough for us to wrap our arms around.

That's about all for tonight. Your prayers mean so much to us. Thank you for fighting with us. We are claiming good reports, in Jesus' name.

With love,
Susan

Friday, March 17, 2006 9:55 PM CST

Hello everyone,

Today was much like yesterday. We continued to wean the settings on the oscilator and were able to increase to 12 mls of formula an hour. He is still a poo-poo machine...still no obvious blood. His heart rate and blood pressure remained stable all day and his labs were all good.

One thing that we are a little concerned about is that Micah seems to have vomitted earlier today. He had been drooling all day and we didn't catch it at first. This is scary because there is always the possibility of asperating (breathing the vomit into the lungs) and this would be devistating. Please pray that this has not happened and that God protected Micah's lungs today.

Please pray that Micah's bili will drop to .2 (it was 27 today). As always, please pray for rest, for strength, for peace, and for wisdom. We are completely dependent on God and we know that he has an absolutely amazing plan for our family. We just can't wait to see it all unfold.

Thank you all for running with us on our journey. Your prayers and encouragement help so much.

Love in Christ,
Karen Tamblyn

Thursday, March 16, 2006 8:39 PM CST

Dear Family and Friends,
Micah is doing well on the oscillator. We were able to wean the settings quite a bit today.

We are still getting lots of poo-poo! It is no longer obviously bloody. We hope this will help to rid his body of bilirubin. Please pray with us that his bili drastically drops. It was 30 this morning, down from the 51 two days ago. Most babies are below 0.2.

Today we increased his formula to 10ml per hour. This was doubled from yesterday. So far, he has handled it well.

Thanks so much for your support and prayers. We are praying and believing for complete healing, in Jesus' name.

With love,
Susan

Wednesday, March 15, 2006 9:58 PM CST

THINGS SICKNESS CANNOT TAKE FROM US:
*Hope
*Love
*Peace
*Memories
*Longsuffering
*Relationship with God
*Joy
*Faith
*God's promises
*Lessons learned
*Humility
*Dreams
*Understanding

(2 Corinthians 4:8)
We are hard-pressed on every side....... Yet not crushed;

We are perplexed.......But not in despair;

Persecuted.......But not forsaken;

Struck down.......But not destroyed


"For the Lord will not cast off forever. Though He causes grief, yet He will show compassion according to the multitude of His mercies. For He does not afflict willingly, nor grieve the children of men." ---Lamentations 3:31-36

Micah is doing well on the oscillator. We have been able to wean some of his settings. We have had a little trouble during suctionings. Micah has what is called a vagul response. It's completely normal, but can cause his heartrate and blood pressure to drop during suctionings. Please pray that God will keep his heartrate and blood pressure stable.

Thank you all so much for your prayers. We are so encouraged by your words. It is so nice to know that you are along side us in this battle.

With love,
Susan

Tuesday, March 14, 2006 8:50 PM CST

Dear Family and Friends,

Micah seems more stable today. He is on the oscillator, which is similar to the ventilator but is more specialized. The chest x-ray was a little improved this AM.

Susan and Travis met with the Dr.s and social worker this AM. It was supposed to be a meeting to help with some communication problems that we had this weekend. As it turned out, what they were mainly told is that Micah has been labeled as Susan was afraid. They told them that medically there is nothing else they can do. However, they did say that if Susan and Travis want them to treat him they will continue to do so. They do want him to be treated and have told the Dr.s that they are not giving up. They were also told how to refuse a treatment that they do not want to be started or continued, such as the morphine drip he was placed on this weekend.

Since they do not know what to do medically, it means that improvements can only be attributed to God. There ARE signs of improvement. They plan to start the formula back through the ND tube tomorrow at 5ml an hour. This is not much but we need to start slowly. He was getting 4ml an hour on Friday. We are continuing to get dirty diapers. His bilirubin which is very high was down while he was on the formula, not normal, but going in the right direction. It did go back up today but he had a lot of trauma yesterday. Other liver enzymes are also going down. There was some urine the other day. They think it may have been residual that was in the bladder, but it had to be made at some point. Before being put on the oscilator he was reaching for us and would make sounds when we talked to him. He would cry if he didn't like something. Even now, he continues to show us his personality by moving his arms and legs and making faces.

We are still believing that God is able and willing to heal our baby. We must have faith that God is God and that He knows what He is doing. We must see this as an opportunity for God to show Himself as the ULTIMATE HEALER. We must keep fighting!!!

Thank you all so much for going through this trial with us, for the encouraging words, and for all of the prayers.

In His Hands,
Linda and Karen

Tuesday, March 14, 2006 1:41 AM CST

Dear Friends and Family,

Susan just called me from the PICU. Micah has not done well during the night and they are going to have to reintubate him and put him on the ventilator. Please pray this will go well and God will heal.

I do not understand but I do know that God is faithful and He knows what He is doing. Susan and Travis are very tired. They have been at the hospital most of the day and of course are still there. Matthew is having trouble sleeping tonight. He can sense when something is wrong even though we try to shield him.

James 5:15-16 says:"And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your tresspasses to one another, and pray for one another, that you may be healed. The effective fervent prayer of a righteous man avails much."
My commentary note says that the prayer of faith does not refer to the faith of the sick person but to the faith of the people praying.

We thank you for being those people praying the prayer of faith. Please continue to pray.

In His Love,
Linda

Monday, March 13, 2006 8:29 PM CST

Dear Family and Friends,

Micah has had another rough day. Tests are being done now that will determine the next step in his care. Please pray that God will give his parents and the Drs. wisdom. I will update again as soon as possible.

Thanks for your continued prayers.

Love,
Linda

Sunday, March 12, 2006 6:59 AM CST

Dear Family and Friends,

Travis just called Susan back to the hospital. It has been a battle all night. They are now discussing the possibility of putting Micah back on the ventilator. His blood gases are all out of whack. His pH is 1.7. They have been told that Micah might not be able to handle another intubation. Of course they have been told he might not be able to handle many things and then God brought him through it. URGENT PRAYER is needed. He was doing so well on Friday and really did not look bad to me last night when I saw him. He was asleep but they had put him on a morphine drip so that was expected, even though he had slept all day. We really never understood the purpose of the morphine drip because he did not seem to be in pain to Susan and Travis. However they were able to get it stopped during the night.

I'm not sure what to ask. I know that Karen put it well this AM when she said it is hard to run the race when you have to sprint all of the time. Even little Micah seems to have to sprint all the time. We know that God is faithful though and knows what is best for Micah and can take care of him better than anyone here.

Thank you so much for your prayers. The support from your prayers helps us keep on running.

Love,
Linda

Saturday, March 11, 2006 9:54 PM CST

Hello Everyone,

We need to ask for a special prayer request: Please pray that God will intercede and be the communicator between the nurses and doctors and us. We feel like we have been fighting all day to fill communication gaps and prevent Micah from being 'labeled'.

The doctors have stopped the feeds for today and tomorrow, because Micah vomited (after mouth care). We think that he is okay, but everyone is just trying to be extra careful and let Micah rest.

Also, please pray for Travis and Susan. They are increasingly more tired with every hour that passes. They are very weary at this point and it is hard for them to stand strong on their faith when their bodies (and minds) won't cooperate.

Thank you all so much for your prayers. It means so much to us that we can come to the computer every night and read such awesome words of encouragement. It keeps us afloat when we are weak.

Love in Christ,
Karen Tamblyn

Friday, March 10, 2006 9:57 PM CST

Travis, Matthew and I all got to go the museum today. We haven't had any time with Matthew since Micah was put in the ICU. I think all of us needed it. It was hard, though, realizing that our newest addition wasn't with us. Matthew had a BLAST! By the time we got back to the apartment for a potty break, Matthew was crying, "Can I please go to bed, Mommy?!" What a blessing it was to see my sweetheart having fun.

Micah is stable...and a little feisty. I love seeing a little fight in him. His labs aren't very pleasing to the eyes, but we know WHO's in charge.

"And whatsoever we ask we receive from Him, because we keep His commandments and do those things that are pleasing in His sight."---I John 3:22

"Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show him My salvation."---Psalm 91:14-16

Clinging to Him,
Susan

Thursday, March 9, 2006 10:33 PM CST

Dear Family and Friends,

PRAY, PRAY, PRAY!!! Micah's hemoglobin is down again tonight and he just received blood last night. We have to find what is the cause of him breaking down his red cells. Please pray that this will stop immediately regardless of the cause.

He has had really good blood gases today but the last one was confusing. They are discussing if it might be a lab error.

They were able to increase his formula from 2 ml to 3 ml an hour today. So far it seems to be working well. We almost lost the ND tube today but God took care of it. In suctioning him apparently the two got too close to each other and the suctioning tube was suctioning the ND tube out. Fortunately the nurse was carefully watching and realize what was happening. They stopped suctioning him and the nurse pushed the tube back in place. They did an x-ray and confirmed it was in the correct place. Way to go Jack!

They said he was more awake today. He was moving his feet and making noise. However since I arrived this afternoon it has been naptime.

Karen and I are going to stay with Micah tomorrow while Susan, Travis and Matthew go to the Museum of Life and Science. I think this will be a wonderful thing for all three of them. Please pray that Micah does well and they can feel comfortable leaving him.

Thank you for all of your prayers and encouragement.

Love,
Linda

Wednesday, March 8, 2006 10:28 PM CST

Micah's liver enzymes and bilirubin shot higher than ever this morning. There is no definite answer for this.

Micah's also had to have platelet transfusions three times in the past 24 hours. He is having some nose bleeds, but this seems a little excessive.

We were able to wean the oxygen down to 30% on the BiPap. So far, he's handled it well. He is breathing faster, but the docs think it could be a result of the feedings we are giving through his ND tube. We'd really like for his respiratory rate to calm down.

Micah's CVVHD set was due to be changed today. While returning his blood to him before the change, his heart rate dropped to 41 for about 15 seconds. An EKG was ordered STAT and showed what we suspected. The blood was going in too fast for the heart to handle. Thankfully, Micah recovered quickly.

Also, please remember to pray for Micah's body to stop breaking up red cells. None of the docs seem to understand why this is happening. This must stop.

Other than that, Micah actually looked good today. He was more alert and even tried to interact some. When we were giving him his bath, the nurse put his leg in the water. (I had just finished telling her how much he used to love the water) He just wriggled his toes and gave us a sweet little sigh.

Thank you for your prayers. We are weary, but your words are strengthening. We continue to claim Micah healed in Jesus' Name...no matter what lab work says.

Praying,
Susan

Tuesday, March 7, 2006 9:33 PM CST

Hi Everyone,

Today was a little...unnerving. When Susan first got there, Micah was obviously WORKING to breathe. Throughout the day, we worked with him...suctioning, repositioning, and raising the oxygen level in the Bi-pap. By tonight, his blood gases were all in normal range. He is still on 40% oxygen because of the difficulty earlier, so hopefully tomorrow will go better and we will be able to wean down.

We appreciate everyone praying for us...so much!!! Please continue to do so and claim Micah's healing (in Jesus' name) along with us. We truly believe that God is going to work an amazing miracle in Micah. Please pray that God will show us his will for Micah and for our whole family. We are so thankful for the testimony that God is giving us.

Thank you all again for all of the prayer and encouragement.

Love in Christ,
Karen Tamblyn

Monday, March 6, 2006 8:50 PM CST

HAPPY BIRTHDAY TO MICAH! Our precious boy is 9 months old today!

We have some good news. Micah's bilirubin is down to 16.7. This is still very high, but much better than the 25 we had a few days ago. Actually, the dr. today told us not to get too happy because it might not be real. Yeah right! We rejoice in God giving us some improved numbers.

We were also blessed today with being able to successfully get an ND tube in Micah. This is a tube going from his nose through his stomach and into his small intestine. Our hope is to gradually begin feeding Micah through it, with little risk of vomiting. Please pray with us that he responds well. This could help in SO many ways.

Because Micah had so much pain over the weekend, our nurse was determined to stay on top of it today. The problem: we ended up over-sedating him some. We've had to cut back on some of his pain meds in order to keep him breathing effectively.

Also, please be in prayer for Micah's lungs. This morning's xray looked a little "hazy." This could be absolutely nothing, but it was enough to keep us from trying to wean him off the BiPap again.

Oh, how we are praying to get out of the ICU. We are beginning to see signs in both our boys that they need our family together again. Sweet Matthew is constantly talking about going home and periodically mentions wanting Micah out of the hospital. It wasn't so bad on the bone marrow unit because we could still all be together. But now, we are all going seperate directions all the time.

Until later,
Susan

Sunday, March 5, 2006 8:16 PM CST

Because of the pain that Micah seems to have, the plan for the day was changed. Our plan was to spend most of the day off of the BiPap, but the pain was keeping Micah from breathing as well as he should. So, today was spent making sure that Micah was able to rest. All of his pain meds were greatly increased and everyone who entered the room spoke at a whisper. This was quite an accomplishment in the PICU! No one's ever quiet there...day or night.

Because Micah was in so much unexpected pain, the dr. ordered an ultra sound. Thankfully, the US report said that there was no sign of infection or gall stones. It also said that the liver was a normal size. No dr. has mentioned this, but we remember when they were once telling us it was enlarged. Please pray with us that this is a sign of GOOD news.

The dr. today thought that the probable cause of Micah's pain are the sores on his face. The problem is that the sores are the probable cause of the pain, which causes Micah to breathe ineffectively at times, which keeps us from weaning from the BiPap, which is what caused the sores in the first place!

You know, man is so limited in his power to help heal. I am so thankful I know the Great Healer. God doesn't need a BiPap to keep Micah's lungs open or CVVHD to filter his waste.

I'm getting ready to do some more research.

Until next time,
Susan

Saturday, March 4, 2006 9:21 PM CST

GOD GLORIFYING NEWS: My precious new nephew, Elijah, is ALD-free! We found out yesterday. Thanks so much for your prayers. Obviously, we are ecstatic.

I'm sorry I didn't get to update yesterday. Lack of sleep was catching up with me.

Yesterday went well. We were able to do peritoneal dialysis all day. We didn't get enough out to stop CVVHD, but there was improvement. Unfortunately, in order to catch back up from all the fluids we put in him, we had to go back on CVVHD today. This may have been a blessing, though.

Micah began crying last night and hasn't stopped yet. It's pretty obvious that he's in a pretty fair amount of pain for some reason. This morning he was put on an hourly dose of morphine, but still kept crying. His xray this morning showed that the BiPap had put some air in his stomach, so we tried giving him mylicone drops. Nothing has worked. The poor thing hasn't been able to rest in 24 hours, and is still in obvious discomfort. The last time Micah was put on PD for a full day, the next day seemed painful for him. PD is not supposed to be painful at all. Please pray with us that Micah's pain will leave and that the PD will be painless and effective.

Micah has been able to be off the BiPap for eight hours today. He was off for four hours this afternoon and off for four hours tonight. So far, so good! The drs. are really focusing on getting him off the BiPap now because he has some pretty gruesome pressure sores on his face from it. This is definitely a source of pain for him.

I can't remember if I've ever mentioned the fact that no one's ever been able to get anything in the left side of Micah's nose. Everytime someone would try and put a tube in it, they would say that it was blocked...by something that seemed like a bone. This is a problem in SO many ways. In fact, the most recent problem has been the fact that we couldn't use it for an ND tube, so poor Micah's had to have an OG tube in (a tube going from his mouth to his stomach). An ND tube could go from his nose down into his small intestine. This would allow us to try and feed him sooner without the risk of him vomiting. If we could get him to where he could take things by mouth....Oh, how things could improve! Well, yesterday the respiratory therapist was suctioning him and was suddenly able to go down the left side of Micah's nose!!! Whatever has been blocking it for the past several months decided to let go. Praise You, Lord!

Problems came a little later when the left side of his nose began to bleed. It bled and bled...all in his mouth, down his throat, in his stomach...for most of the day. We ended up having to give him platelets and blood. Thankfully, when I arrived this morning it had quit bleeding. The R.T. today said that the left side was still clear, with very little bleeding. Hopefully, if we can get it to completely quit bleeding, we can begin to use it for feeds and oral meds.

Thank you so much for your faithfulness in praying for Micah and our family.

Love to you all,
Susan

Thursday, March 2, 2006 10:01 PM CST

WE'VE GOT POO-POO!!!!

The last time Micah had a stool was on Jan. 23. We've been allowing his digestive system to rest in order to help it heal. However, we were still giving him meds and IV nutrition, so there should have been something coming out. Well, it finally did....and BOY did it! Before I was allowed in his room this morning after rounds, he had already filled up three diapers! We had poop everywhere! I never thought I'd be celebrating poop, but today I was ready to shout it from the rooftops! PRAISE YOU, LORD!

Today we were able to keep Micah's CVVHD going pretty well. It's stayed pretty consistant most of the day with very little blood pressure issues.

The problem with today was that Micah seemed to be in pain for some reason. He whimpered and cried for most of the day. Please pray with us that nothing is wrong, but that the pain was merely from an awakening digestive system. He is finally resting well...after extra morphine, methadone, and ativan.

Micah's also had HIGH blood pressure today. Up...down...up...down Thankfully, we haven't had to give him anything to bring the pressures down yet. After taking care of the pain tonight, his blood pressure seemed to calm down.

New prayer request:
The leg that has the cathetar for the CVVHD has begun to swell. So far, it still has a good pulse in it and is staying warm so we're hoping there's not going to be a problem with it. It's possible that the cathetar is blocking some of the blood flow to the leg. The dr. that saw it is hoping that merely keeping it elevated will help bring the swelling down. Please pray with us that this will easily go down with out any intervention.

Well, Matthew is needing me to help him get to bed. Thanks again and again.

With love,
Susan

Wednesday, March 1, 2006 10:42 PM CST

Well, Micah is now more hydrated. The problem: his last chest xray looked a little "wet". We worked all day to get Micah's blood pressure up to a comfortable place, just to find out the drs. think some fluid might have drifted near his lungs.

Today was a success in the area of peritoneal dialysis, though. It started off a little rocky. Micah actually held on to some extra fluid in the first run. After that, though, each run produced a little more output. This is great news. The only problem is that Micah usually receives almost a liter in IV meds each day and the peritoneal dialysis didn't keep up. Micah handled the extra fluid pretty well.

Since the docs think that Micah's respiratory status might be in a little danger, we now have a new plan. We are going to try one more run of peritoneal dialysis and see how much we can get off of him. If it's not enough to make a difference, we may have to start the CVVHD back. The problem with this is that Micah's blood pressure has been a little on the low side and CVVHD seems to make it drop...quickly. We've also had trouble in the past with the CVVHD causing Micah to actually lose about 90cc of blood. This really doesn't need to happen.

Obviously, we are kind of in an interesting place. Please pray with us that we (and our drs.) make the absolute best decisions for Micah. This can be such a balancing act and hard on the nerves.

Travis and I are learning from James right now. It seems like the whole book applies! James is teaching us how to walk through a trial in a way glorifying to the Father. One of our greatest weaknesses, though, is our words. Please pray with us that God will guard our tongue. There are so many times that we sin against our Father without ever paying it any attention. It can also be hard at times to remain humble when we're so sure we know what's best for Micah. (Sometimes we find out later we were wrong!) We have to constantly remind each other that God provided these exact people to care for Micah and He does not let anything happen to Micah against His wishes. Obviously, we are Micah's voice right now, so we stay extremely involved. But, there's only so much we can control. God does the rest. We have to remind each other to trust that.

I cannot say enough how much you all encourage us.

Thank you,
Susan

Tuesday, February 28, 2006 9:29 PM CST

****Update as of 3-1-06 1:10 a.m.
Our prayer is that all of this is just dehydration. We've struggled to keep Micah's blood pressures up, his heart rate down, and his temp. normal. We are also praying that his unresponsiveness can be fixed by decreasing his methadone and ativan. It's been a rough evening, but one fun thing happened. Travis and I both got to see Micah sneeze tonight. It was so sweet and greatly missed. Thanks for your prayers. They are definitely needed. We love you all, Susan

Dear Family and Friends,

Micah has taken yet another scary turn in his journey toward recovery. Tonight Karen and Matthew walked in for a good-night visit. On arrival to his room Susan stepped out and said "Don't bring Matthew in here now it is too scary." There were several medical professionals in the room working with Micah at the time and Karen quickly got Matthew out of the PICU trying to act as though nothing was wrong. We sat in one of the waiting areas after calling Travis to come to the hospital and didn't hear anything for about 1 hour.

Apparently he is running a low grade fever and is unresponsive to normally irritating things such as removing his blanket. Several Doctors had come in...and all have differnet theories of what is wrong. This is so frustrating to us because the truth is no one really knows what is wrong with our baby. It seems as though we just sit back in terror waiting for answers and never really get them. The most current theory is that the methadone has built up in his system.

Please pray for our baby and the whole family.

Today was actually pretty relaxing and things were looking up until this happened. Susan even went wedding gown and bridesmaid dress shopping with Karen while I sat with Micah this afternoon. Now she and Travis are up at the hospital, we are at the apt. with Matthew, and are all praying that God will work a miracle through Micah.

Thank you all so much for sticking with us through this tiring journey. Many times we find ourselves depending on your courage and faith to help give us strength. Thank you again.

Love,
Linda

Monday, February 27, 2006 10:08 PM CST

The main event of our day was peritoneal dialysis. Yep, we finally tried it. He handled it well as far as his respiratory status goes. This was everyone's main concern. The only problem was that we put 200ml in him and only got out 100ml the first time and 135ml the second time. We were told that it is common not to be able to get out all that you've put in when first starting, but it is a little unsettling. Our theory is that the CVVHD has been so successful in drying out his vessels that his vessels slirped the fluid right out of his peritoneam. The drs. decided to continue letting the CVVHD run during PD in order to assure that Micah didn't get behind on his fluid output. (Actually, the charge nurse today said that in all of her 25 years in PICU she's never seen them done together) We are thankful for their caution, but are wondering if it could have possibly caused his vessels to "drink" up the fluid we put into his peritoneum, therefore dialysing it through the CVVHD. Please be in prayer with us that the PD works and we can begin to transition over to it completely. CVVHD can only be done in the PICU, but Peritoneal Dialysis can even be done at home.

We love you all and rejoice in our "family" throughout our days.

With love,
Susan

Sunday, February 26, 2006 9:04 PM CST

I just got off the phone with Micah. Yep, my little boy was telling me all about it! It's amazing how much his voice sounds like his brother's on the phone. Travis said that while I sang to him, he stopped making noises and focused his eyes and listened. As soon as the little song was over, Micah was singing too!

Micah has been mostly awake for the past 24 hours. We aren't really sure why. At first, we thought that he probably just had his days and nights mixed up. Then, we thought it might be that he was enjoying his voice. The most recent theory is that he is growing tired of the BiPap and is insisting on more time off. Who knows. Pray with us that it is nothing serious, but rather something worth celebrating.

The drs. decided against doing the peritoneal dialysis again today. They want to do it at a time when the whole team is available. This will be tomorrow...maybe. I have prayed that God will allow this according to His timing...the best timing for Micah. It's hard gearing up to try it each day and then not being able to do it. But, God's timing is perfect and that's what we want.

Actually, we WANT Micah to start urinating on his own. We're praying for this also, but we realize that this may have to happen with time. Micah hasn't produced any urine at all in the past few days. However, tonight the nurse said that she was able to get 0.01 ml of brown, golden urine. Hey, we'll take it! We are praying that Micah will have full kidney function one day. We just have to wait on the Lord.

That's about it for tonight. Thank you, thank you, thank you for all of your prayers, encouragement, Scriptures, emails, and so on. You have become our partners in this trial. You are such a wonderful example of how Christians are to carry one another's burdens.

Thank you,
Susan

Saturday, February 25, 2006 10:01 PM CST

Dear Family and Friends,

Today has been a day with very little change. The lab work does not look a lot different today. They did take him off the Bi-Pap twice during the day. He did very well during this time. They will continue to take him off for short periods to help get his lungs used to breathing deep enough. Sometimes the little steps we take toward improvement are so tiny that we do not see them until a week or so later when we look back.

Peritoneal Dialysis did not take place today. The nephrologist was not going to be able to be in the hospital the entire time and did not want to start when he could not be there. We appreciate his caution. The plan is to try tomorrow.

Tonight when Travis and I went in to visit after supper Micah had just been taken off Bi-Pap. Travis went to one side and when he spoke Micah turned his eyes toward his Daddy even though he was facing my way. As Travis talked with him Micah kept his eyes glued on him. You could tell he was sleepy but was also determined to see his Daddy. Then Susan and Matthew went in to visit. Once again even though sleepy he would open his eyes whenever Matthew was in front of him. We love this new resposiveness!

We continue to remind ourselves that God is the one in control and that His timing is best, that Micah belongs to Him. We are thankful for the improvements taking place no matter how small. Those of you who have put scripture on the guestbook frequently seem to have just the right one to encourage. We appreciate the time and effort that all of you give when signing the guestbook and your prayers.

Love,
Linda

Saturday, February 25, 2006 9:37 AM CST

Dear Family and Friends,

God has been merciful to us this week. Things are still very critical but there are some little steps of improvement. Micah's fibrinogen level is up. At first it was higher than normal and we didn't really know if this was good or bad. Turns out it is GOOD!. Dr. Kurtzberg came by last night while I was staying with Micah and I asked her about it. She said this was very good because it meant that his liver was working. Susan and Travis had at the same time e-mailed her about it. It is wonderful to have a Dr. who doesn't mind e-mails and actually answers them. She was very encouraging.

They are going to try peritoneal dialysis today. Please pray that all goes well and that it works. I am not good at pasting things from one days entry to the next but please also continue to be in prayer for the list of specific prayer requests that Susan gave the other day.

Last night when I was with Micah he started to whimper and was looking around. I was sure he was looking for his Mommy or Daddy. He calmed down, went to sleep and in a little while he started again. This time he calmed right down as I held his hand and talked with him. He did this about every hour. This seems like a really insignificant thing on paper but it is such a normal thing for a baby to do and he has not been doing it. Praise God!

Thank you all for your prayers and encouragement. God has used you to make things easier. He uses you to give our family the strength that is needed. Susan and Travis are so very thankful to you all.

Love,
Linda

Thursday, February 23, 2006 10:43 PM CST

Hi everyone! There hasn't been much change since yesterday. Please continue to pray for these specific requests:

Reminders for our precious prayer warriors...
*Liver: high bilirubin, gvh, inflammation
*lungs: strength to breathe independantly, no collapsing
*kidneys: restored function...100%
*colon: gvh
*blood: no more schistocytes
*skin: black spots, sores on face, sore from black spot that burst
*nutrition: no more TPN, eat by mouth

One new idea that the doctors have had is to give Micah Amino Acids. The hope is that these will provide the function of a protein without being so hard on his liver.

We love you all and continue to be thankful for the Christian family that God has given us. THANK YOU!!!

Love in Christ,
Karen

Wednesday, February 22, 2006 10:02 PM CST

*****HAPPY BIRTHDAY, KAREN...22 YEARS OLD!!!


Micah rested well again today. So well, in fact, that the drs. decided to lower his doses of Ativan and Methodone. These can both have sedative effects. We like that Micah can sleep as much as he needs, but we also don't want him having unnecessary meds.

This morning's xray showed that some of Micah's lung had collapsed a little. It wasn't horrible, but prevented us from taking him off of BiPap for any length of time today. This is a problem because he needs to build up his muscles to breathe independantly and he has some pretty nasty sores from the BiPap on his face. I didn't realize how bad they were until we took the BiPap off to clean him up. They are pretty deep wounds on his face. It was such a surprise I immediately started crying. It's so hard to know where the line is between helping and abuse.

Other than that, not much has changed from yesterday....thankfully.

Reminders for our precious prayer warriors...
*Liver: high bilirubin, gvh, inflammation
*lungs: strength to breathe independantly, no collapsing
*kidneys: restored function...100%
*colon: gvh
*blood: no more schistocytes
*skin: black spots, sores on face, sore from black spot that burst
*nutrition: no more TPN, eat by mouth

More tomorrow,
Susan

Tuesday, February 21, 2006 8:57 PM CST

Today was more boring than usual. WHAT A BLESSING! Micah slept throughout the day. He has his days and nights mixed up. Travis is staying the night with him and says he is already showing signs of a wakeful night.

Micah's breathing was a little more stable today, so the respiratory therapists thought it was safe to go down on the pressures of his BiPap. His gases weren't quite as good as before we went down on them, but hopefully he'll adjust. It's very important that his muscles continue to come back. We are praying that God will be the only thing ventilating Micah's body. We pray that God will strengthen Micah to the place where he no longer needs help from man's creations to breathe.

Also, Micah's bilirubin has come down to 20. Whew! This is still extremely high, but at least we've seen improvement. Please continue to pray with us that God will wash away all the "sludge", as the drs. call it. Dr. Kurtzberg came by tonight and explained that it's possible that his bilirubin might not be able to come down until after he is taken off of TPN. TPN is the IV nutrition that Micah has been living off of since he was taken off of eating anything by mouth. The only way to get off of TPN is to eat enough to support his nutritional needs. We tried to feed him something through his OG tube Friday, but had to stop when he began having trouble with his dialysis clotting. He actually hasn't been allowed to eat anything since December. It's going to be a slow process trying to get Micah eating again, unless God changes things.

So far, Micah's dialysis has been working well. Unfortunately, tomorrow he is due for his filter to be changed again. In the past, this has been when all the problems have occurred. Pray with us that it will be a smooth transition. Right now, Micah's breathing ability is very dependant on whether or not his dialysis is working well.

One thing I haven't mention in a while is that Micah is still breaking up red cells (schistocytes). He's not breaking up as many, but the problem is still there. Please continue to pray with us about this too.

It was nice today to come back from eating lunch and find Micah wearing a diaper. He hasn't been able to wear a diaper for a little over a month now. He doesn't really need it now, but our nurse decided to use it to help stop the bleeding on the open sore he has from one of the black spots bursting. Still...nice to see.

Speaking of the black spots...they are gradually fading some. We've been told it could take up to 3-4 weeks for them to heal, but today they were less black and more of a dark pink color. This is good news because it convinces the drs. more that it probably isn't a sign of infection. They are leaning more on the probability that the spots were actually from bleeding under his skin. Last Friday, Micah gained almost a liter of fluid, his platelets dropped dramatically, leading to bleeding under the skin. We are thankful this is the popular theory and pray that it is correct.

I'm sure there's more, but I can't seem to recall anymore right now. Thank you all so much for your faithfulness in praying for Micah. You hold us up when we are weak.

Love to all,
Susan

Monday, February 20, 2006 7:36 PM CST

Dear Family and Friends,

I was encouraged when I talked with Susan and Karen this evening. Seems that most of Micah's lab work has improved. They had the wound care team to come in and they are working on the broken skin areas. Susan said he has slept most of the day. Hopefully this is due to a tiring weekend. One of their regular Drs. came today and he was encouraging. He admits though that Micah is a very sick baby. He seemed to think that the problems were due to having so much done to him and he just couldn't take it. Susan sounded a lot better tonight.

I've been thinking about the echocardiogram not showing an infection. This was done after we had requested prayer and so many of you were praying with us. God may have answered our prayers instead of the Dr. just being wrong. In any case God is resposible for taking care of him and improvements that come. I praise Him for this care and I thank all of you for praying.

Love,
Linda

Sunday, February 19, 2006 8:51 PM CST

Dear Family and Friends,

Not much has changed since yesterday for Micah except that he seems to have remained about the same. At least he is a little stable instead of continuing to go down hill. It turns out that the echocardiogram that was done yesterday did not show any signs of infection in his heart. Praise God! Matthew got to stay in the PICU with his little brother a good bit on Saturday and Micah seemed to really respond to him. He would even try to open his eyes to see Matthew. At least today they were able to get some of the fluid off of him. But the dialysis catheter is still giving trouble. They had to rewire it today. So far it is working well. Pray that it continues to. To replace it would mean going back on the ventilator due to sedation, not a good thing.

The Dr.s do not seem to know what is wrong. The Dr.s he has this week have not seen him since Nov. and were very discouraging. This changing Dr.s every week is hard. About the time they seem to get to know what is going on with Micah we get new ones. Supposedly they have conferences together but hearing about a case and actually seeing the patient is quite different.

Micah also has black spots all over his arms and legs that no one has a real answer for. One of them burst yesterday leaving a big open sore. Micah has been losing blood through it all day. Please pray that it heals quickly and that God will protect it from infection.

Micah's liver is also in great need of healing. His bilirubin this morning was 32. Pray, pray, pray.

Susan and Travis are exhausted and hurting so deeping for their little boy. We appreciate the prayers for strength and comfort because we know it is God who is getting them through all of this. I even believe that Micah is more stable now because God is answering prayers. Thank you so much.


Our family does have some good news though. Susan's sister,Jeanne gave birth to Elijah Nathaniel Pohl, Sat. at 1:32AM. Wt.: 7lbs 7 oz Length: 20 1/4". We are thankful that mother and baby are doing well. His cord blood is being tested and of course we are praying there will not be any sign of ALD.

Love,
Linda

Sunday, February 19, 2006 8:38 PM CST

*****Congratulations to my older sister, Jeanne. She just had her a beautiful baby boy yesterday. His name is Elijah. Pray that he will be completely free from this dreadful disease.


Well, it turns out that there was no sign of infection in Micah's heart when an echocardiogram was done yesterday. Sorry for the delayed correction.

There have been several discouraging things come up this weekend. First, we had a dr. that has not seen Micah since Thanksgiving be on call. He was extremely negative, but we are hoping tomorrow will bring some encouragement.

We have had problems getting the dialysis to work since Friday. Micah gained an enormous amount of weight all at once Friday, which hindered his breathing. Thankfully, we have been able to hold off on the ventilator so far. We've had to rewire the catheter twice. This last time seems to have worked much better. Today, the dialysis ran more like it is supposed. Please be in prayer with us that it continues to work well.

Huge prayer request: Micah's bilirubin was up to 32 this morning. It's supposed to be around 1. Micah's liver has to get better.

Friday night, Micah began having black spots all over his arms and legs. No one seems to be very familiar with this, and so we don't have an answer to what the cause is. One of the spots burst and now Micah is losing a good bit of blood because of it. It's also got to be pretty painful and is a risk for infection.

Micah's skin seems to be very tender right now. His BiPap has to be so tight on his face to work right that it is beginning to bother his skin some. Please pray that God will prevent any more break down.

Our precious Micah is really in need of prayer. We know that God is able. Please pray that He is willing.

Praying,
Susan

Saturday, February 18, 2006 10:57 AM CST

Hey Everyone.

This is David again. We ask that you continue your urgent prayers for Micah. They have found an infection in his heart from his central lines. He is on antibiotics but from what the doctors say it is not very encouraging. We ask that you continue just to lift him up in prayer. Thank you.

Sincerely,
David Tamblyn

Friday, February 17, 2006 7:43 PM CST

Dear Family and Friends,

Once again I am coming to you asking for urgent prayer. Karen called this afternoon about 5:30 and said Susan had called Travis to come to the hospital quick because Micah was having trouble breathing. Apparently they do not know the cause of the problem. His pH is very low. They do not think that this is caused from a respiratory problem but that what is causing the low pH is causing the respiratory problem.

They gave him formula today for the first time and because of this they thought he might have an intestinal tear but they have ruled that out. They stopped his dialysis because they did not want to give him heparin due to the fear of the tear. Now they are ready to start it again but the dialysis staff is being very slow coming to restart it. He is positive on his fluid intake today due to all the blood products he has received and no dialysis.

Karen said that emotionally Susan is having a very hard time. I don't know if she has seen Travis since he got back to the hospital. Susan was trying to eat a little supper when Karen saw her. She said she kept saying "We are in big trouble".

This part is added in at 9:45 pm EST. Susan has requested more prayer and is more upset. They started the dialysis and Micah's blood pressure dropped. They gave him fluid to get it back up but when they tried to restart it the catheter was clotted. They have put TPA in it to reopen it but it has to sit for 2 hours before they can try dialysis again.

God is faithful and we know He has a perfect plan. We continue to trust Him.

Thank you for your prayers.

Love,
Linda

Thursday, February 16, 2006 10:03 PM CST

Well, today went pretty well. Micah was off the BiPap less than yesterday. We didn't want him to tire, so we only let him stay off for shorter periods. I think this was probably a wise dicision because toward the end of the last time without the BiPap, he began showing signs that he was working a little harder.

One of our challenges of the day was his blood pressure. Throughout the day it would begin to drop and then suddenly pop back up. Tonight, however, this didn't happen so easily. After I came home to catch some sleep, Travis called me saying that his blood pressure was around 40's/20's. This is really low and it wasn't wanting to pop back up. The PICU fellow came in and began giving him fluids. Finally, after giving him 100 mls of fluid, his blood pressure came up to around 68/35. This is still low, but tolerable. Our prayer is that his dialysis was just taking off too much fluid and adjusting it will bring up his blood pressure.

Also, tonight we became a little uncomfortable when everyone that saw Micah's legs said something like, "Oh my, I've never seen that before." Micah's legs do look a little different right now. He's lost so much fluid and muscle that they are misshapen. They sort of look like a bone with leathery skin hanging off. We had just shrugged it off to extra skin after weight loss until all the comments started in. To calm ourselves we called the dr. on call from the bone marrow unit and she came right over. At first, she too was alarmed. But after really looking at them she came to the same conclusion of dramatic weight loss. Whew!

Another thing to pray about is Micah's body temperature. The past few days it has been a little higher than his normal, but not a fever. Tonight, it went up to around 100. After uncovering him and turning off his warming tube, he came down some. Please pray with us that this was just a matter of being too hot and not a sign of infection.

We are also having trouble with his central lines. The nurse was trying to take a culture from them today and couldn't pull back any blood. It's very important to keep his lines working and free from any clots or infection.

Finally, a bit of unhappy news. Our precious little friend Shreya past away last night around 8:30. For those of you who prayed for her...thank you. I'm sure her family needs prayer now more than ever. I met her mother in the hallway the other day and, when we finished talking, my shoulder was thoroughly wet from her tears. This family has fought so hard for so long. Pray that Christ will use this for His glory and will be her parents' comfort and strength.

Thanks so much,
Susan

Wednesday, February 15, 2006 9:02 PM CST

We are so thankful for yet another day. Micah made it through the night well, and when I arrived this morning, the drs. decided to take him off the BiPap. The plan was to try and keep him off for about 2 hours if he could handle it. This was to strengthen his muscles. After 2 hours, Micah was still going strong. It wasn't until around 6:30 this evening that we decided to put him back on the BiPap to let him rest. His blood gases were still good and there was no sign of him struggling, but we wanted to be extra cautious. Also, his xray this morning showed no signs of secretions. They think there are still some there, but couldn't see them. We believe God caused them to leave. Karen is staying with Micah for a few hours tonight, letting us have some family time. She said that the latest gas looked good and Micah was resting well.

We also had an unexpected reason to celebrate today. Micah was able to produce a small puddle of yellow urine! Ever since he began dialysis he hasn't made any urine. Before dialysis, though, it looked like pure blood. The fact that he had yellow urine is so encouraging. It wasn't much, but it was a start!

Thanks to you all!

Believing,
Susan

Tuesday, February 14, 2006 9:35 PM CST

Happy Valentines Day!

We are so thankful for all of you. Your prayers, encouraging words and comforting Scriptures you send are so special to us.

Oh, what an amazing experience God is allowing us to go through. It seems there are times our faith is tested by the minute. However, God has used this time to establish sweet intimacy with us. I have thoroughly enjoyed Psalms.

Tonight, Micah is on the BiPap. He was put on it in the wee hours of this morning because of a dangerouly low Ph. Thankfully, his next Ph was better. Around noon, Micah began really struggling. The secretions in his chest were so thick he couldn't seem to ventilate the way he needed. Thankfully, though, his blood gases remained good. After much work, some meds, and a whole lot of prayer, Micah seemed to relax. He is still obviously a little rusty in the breathing department. Dr. Kurtzberg stopped by and said that the first 24 hours are the most critical and each day after that is supposed to be a little easier. Still, our goal is to get through the night without reintubating. Please continue to pray for good blood gas reports, and little effort for Micah.

I have no doubt that God is in this. I admit, sometimes I wonder what exactly He's up to, but I know He has a plan and He loves me. Thank you for all you do for us. I truly believe that this is not just a physical battle, but also a spiritual one. God is using you to stand in the gap when we are wounded or weak. I rejoice in the "family" God has given us.

With love,
Susan

Monday, February 13, 2006 9:06 PM CST

Hello everyone, this is Travis and I will update tonight. Micah is responding well so far to extabation. I just got off the phone with Susan and she said the gas report was much better than before. This is very important, because if his gases continue to rise then we will consider stepping back a few steps to the Bi-pap. But please pray that his results will continue the better trend. He has alot of secretions in his chest so we will continue to turn him and suction his mouth all night tonight. I am switching with Susan at midnight so she can be there in the morning after rounds to meet the doctors. We have been doing this for a while now and it has been working out okay. Thank the Lord for Linda and Karen for there willingness to help With Matthew so that we can be with Micah round the clock. We still have a long journey ahead so please continue your faithfulness through prayer. Please pray for Shreya Rastogi, she is a very precious young woman that is on the 5200. She is fighting very hard right now. The doctors are not very hopeful right now. Pray that she will continue to fight and know that Christ, without a doubt, will carry her through this fight.

Susan and I are very blessed to have each and everyone of you check in on our Micah. Thank you so much.

In Christ's Love,
Travis

Sunday, February 12, 2006 9:33 PM CST

Hi everyone! We have a few specific prayer requests...

1. Micah is supposed to be extubated around noon tomorrow. Pray that this will all go smoothly.

2. He seems to be having trouble staying calm. This has a lot to do with his withdrawal from the narcotics. Of course, this affects everything else. Please pray that God will calm his body and he will be able to heal. This will help him have a smooth transition from the C-Pap to normal breathing.

3. Pray that Micah's blood gases will stay good.

4. Please pray that his blood pressure will be good enough to allow for a healthy balance of fluid input/output.

Thank you all so very much for your continued support, encouragement, and prayers. We know that this has been a long journey for you also and appreciate each one of you.

Love,
Karen

Saturday, February 11, 2006 7:37 PM CST

Dear Family and Friends,

Things went well for Micah today. His settings on the ventilator are turned down to where he initiates all of the breaths and how deep they go. It will help the Dr.s tell if he is ready to be extubated. One Dr. today said they probably will not extubate him even if all is well until Monday when the bone marrow Dr.s will be around also. This is ok with all of us. Everything else is pretty much the same. This afternoon he was looking at us and would frown if we did something he did not like. He did seem more comfortable today. When Susan and I were exercising his legs today, I stopped and he stuck his little foot back to me. He didn't move it much, but he seems to move his legs very little, so it was encouraging.

Susan and Travis are still very tired but seem a little better. I think when they do get a chance to rest they rest a lot better if Micah is doing better.

Matthew is being a little sweetheart. I am really enjoying this special time with him. Even in the tough times God gives us blessings. Taking care of Matthew is one of those blessings.

We appreciate all of you praying for Micah, Travis, Susan and Matthew. Please continue. God's timing is different from ours but we can tell He is working. His timing is what is best.

I know this is Micah's website but we would also appreciate prayers for Susan's sister, Jeanne. Her little boy is due the 20th and the midwife has told her any time is ok. Also please pray he will be healthy and not have ALD. Susan always loves to be with family to offer support at times like this. It is hard on her not to be able to go to her sister when the baby comes.

Love,
Linda

Saturday, February 11, 2006 10:15 AM CST

Dear Family and Friends,

We got some good news last night. Micah no longer has ascites or fluid in his abdomen. That is the reason the peritoneal catherter has not been draining well. He does have a lot of air though that they said was caused by the Bi-Pap machine. He has an NG tube and we hope that it will get most of the air out.

Labs are staying about the same. They are up a little from last week but the Dr. thinks it is because he has less fluid in his body and the old labs weren't really showing it the way it was.

Yesterday he mostly just slept. He would frown when you turned him but that was about all. Sometimes you could tell he was crying even though you can't hear it when he is moved. Then last night during his bath he opened his eyes and looked at us but he didn't keep them open. The light was pretty bright though. Susan came to relieve me at 2:00 and she said that he stayed awake for about 2 hours while she was there and just looked around. He would squeeze the guaze rolls that they had put in his hands. I think it did her a lot of good to see him so alert. He is on room air on the ventilator and they are slowing decreasing his pressures. The physical therapist came in yesterday and he seemed to enjoy that. They will not even consider decreasing the dialysis until they have him off the ventilator doing well. We think this is good even though we would love to have him off. One major thing at the time seems to work best.

Today we get new doctors. Will the plan of care stay the same? We never know.

Thank you for your prayers and support. God is answering them and He is giving comfort and strength.

Love,
Linda

Friday, February 10, 2006 11:21 AM CST

Good Morning,

Well our little fellow just got too tired trying to breathe last night and had to be reintubated. They tell us that this is normal and frequently happens. Unfortunately to us it seems like a step backwards. But otherwise he still seems to be doing well. Thanks for the prayers. They told us they would probably not try to extubate him again until at least Sunday.

Love,
Linda

Thursday, February 9, 2006 10:24 PM CST

Dear Family and Friends,

It was amazing to see the difference in Micah when I got here this afternoon. He is so much smaller. His little hands and feet look like little baby hands and feet. His ears are no longer swollen. He really looks good.

He had his breathing tube removed today and was put on the Bi-Pap machine. The only problem he has been fighting it and this makes him extra tired. The Dr. thinks it is because there is some swelling from the ET tube in his trachea. It is a common problem when someone has been on the ventilator a long time. They are treating it and he seems to have improved some. Another problem is that they stopped his pain meds cold turkey. Micah has been on them so long that he has to be weaned off. They finally gave him some tonight and it helped very quickly. The only problem is the Dr. who is on tonight does not want to give it. She is afraid that since he is not on the ventilator he will not breathe with the medicine. Only Micah has been on this medicine since Oct. Please pray that Micah will relax and be able to breathe better.

Susan and Travis really need rest, but Susan is afraid to leave the hospital. She is afraid something might happen to Micah while she is gone. Admittedly she was the one who got things going this afternoon when he started improving. Sometimes though, she feels like parents are not really heard when it comes to ideas in caring for their child. Please pray for the communication between the Flemings and the Dr.s to improve.

Thanks again for all of your prayers. It is very much appreciated.

Love,
Linda

Wednesday, February 8, 2006 9:20 PM CST

Dear Family and Friends,

I hear today that Micah is really looking good. They did not take the breathing tube out today. Susan said he was too sleepy. She says he has his days and nights mixed up. Anyway if he was too sleepy then I am glad they waited. They said maybe tomorrow. Things are going about the same. Thanks for all of your prayers.

Love,
Linda

Tuesday, February 7, 2006 8:22 PM CST

Hello Family and Friends,

God is good! I talked with Susan a few minutes ago. Micah has done really well today. They have the dialysis going and I think everyone realizes this really helps him. The Drs. are considering removing the breathing tube tomorrow. He still has a few places of the beginnings of skin breakdown but they are treating them. If he could get where he could move around we probably would not have that problem.

Thank you for your prayers and support. God would still have been good even if the new reports were not good because Micah belongs to Him, but I am very thankful that He is healing Micah.

Love,
Linda

Monday, February 6, 2006 8:31 PM CST

Dear Family and Friends,

I just finished talking with Susan. It seems like Micah is continuing to improve a little with a few problems. They have a new group of Drs. today. (They change every week or two.) The new group wanted to extubate him (remove the breathing tube) but the old group convinced them to give him a little more time. It is exciting to know that they are even considering this. God is definitely working. The only problem is that they have had problems with the dialysis line. Unfortunately he has not had dialysis much today and is beginning to swell and with the increase in swelling he has more trouble breathing. It is good they did not take out the tube.

Dr. Kurtzberg was really encouraging when she came to see him. She said that the fluid is the last problem to go and all of his labs are looking a lot better. Thank you Jesus!!

Thank you for all of your prayers and guestbook entries. We appreciate them so much. God is answering!

Love,
Linda

Sunday, February 5, 2006 7:45 PM CST

Dear Family and Friends,

Micah will be 8 months old tomorrow (the 6th)!

Micah is now on 25xygen on the ventilator. He still has a way to go on the pressures but he is being weaned and doing well. We praise our Father for this. He is answering prayers.

The only problem today was his dialyzer and lines clotted. They put the TPA in and hope to get it restarted about 8:30 this evening. The machine alarmed saying that the dialyzer should be changed. (It is supposed to be changed every 72 hrs) But she hit the continue button and then this afternoon it clotted. The dialysis nurse was not called when it alarmed. I don't know for sure this is what caused the problem or not. I know it doesn't help Susan and Travis with trusting the PICU staff. Please pray about this. They are so exhausted and they need to be able to trust the staff to take care of their baby. Also I know that it makes me think twice when I am taking care of my patients. God is definitely using all we are learning.

Most of today Micah slept but yesterday he was awake most of the day so we think he was probably just tired. He does have one area of skin breakdown. Please pray that this will heal.

Thank you for all of the prayers and encouragement. Kathy made it home safely and Karen made it back to Durham safely.
God has been good to us and one of the blessings He has given is all of our new and old friends who are prayer warriors for Micah. God Bless each of you.

Love,
Linda

Saturday, February 4, 2006 9:05 PM CST

Dear Family and Friends,

It is so wonderful to be able to bring good news when I update for Susan. Micah has had a good day. He is more alert and has opened his eyes much more today. They are slowly weaning him from the ventilator. The Dr.s are pleased. We thank God for all of you and your willingness to pray. Also we thank God that Micah is better. Another good thing was that Susan's aunt, Kathy Hood was able to visit Micah this weekend. We are all very thankful to her for going this weekend to help them care for Matthew. Susan said she also cooked delicious meals!

Kathy going was an answer to prayer. We knew that Susan and Travis needed help this weekend. I had to return home to work and Karen had a workshop for her Praxis exam next month. Then Kathy called and offered to come. A work shop she was attending ended early making her able to give them even more time. God worked that one out!! Thank you, Kathy.

We praise God for the improvements Micah is making. We know it is God who is working. We also thank all of you for your prayers. God is answering those prayers. We ask God's protection on Kathy as she travels home tomorrow and on Karen as she returns to Durham from Savannah to help.

Love,
Linda

Friday, February 3, 2006 9:09 PM CST

Dear Family and Friends

It is good to be able to give some positive news tonight. Micah is more alert today. Even though he is more alert, Susan said that he is not fighting the ventilator. Oxygen levels remain good. We praise God for these changes.

Other than that there have not been many changes. The catheter in his abdomen is stopped up again and they are trying to find a way to get it working again. At times they have had trouble regulating his temperature. One time his heart rate dropped and the nurse thought it might be because he got cold. Fortunately it came right back up. He has this wonderful warming tube around him that blows warm air to keep him warm.

Tonight they plan on weighing Micah. This is making Susan a little nervous. It sounds like an easy thing to do but he has so many tubes you get nervous one will accidently get pulled out. In addition someone else gets to hold her baby and not her or Travis. They understand though. The desire to hold him is just so strong.

I've talked to both of them today and both of them sound good. Thank you for your prayers and encouragement. Matthew is better now. You will never know how much it means to all of us to know you are praying.

Love,
Linda

Thursday, February 2, 2006 7:42 PM CST

Hello, precious family and friends.

It has been so long since I have been able to update you and have greatly missed it. Though I haven't actually been able to get on the site much, I think of you often and am so thankful for your support.

Micah is still in the PICU. We have learned to be thankful for each minute with him. He is such a joy in our lives.

Today, he was moved to the conventional ventilator. He didn't tolerate it very well the last time he was on it, and we had to move him back to the oscillator. Thankfully, this time seems to be going smoothly so far. He is on good settings, and we plan to wean him much slower this time. We are beginning to struggle with keeping him sedated. The CVVHD (dialysis) seems to be filtering out some of his sedation drugs. We are thankful, though, that the conventional ventilator doesn't require him to be completely sedated.

One of Micah's cultures came back positive for yeast. Yeast is normally found in people's lungs without symptoms. However, because of Micah's situation, the drs. have decided to try and treat it. He was already on 2 anti-fungal drugs. Apparently, these drugs do not cover the type of yeast that he has, so we are changing things around tonight. Instead of being on the 2 drugs, he will be on 1 drug that can sometimes have uncomfortable side effects. Hopefully, though, this will take care of the problem and he can get off of it soon. One advantage of the new drug is that it is hard on the kidneys instead of the liver. The other 2 were hard on the liver. Since Micah is on CVVHD right now, we should't have to worry about it's effect on his kidneys.

So far, the CVVHD is working well. It has been able to get quite a bit of fluid off of Micah and allowed him to begin breathing better. The kidney dr., though, thinks that he could actually have another 5-10 liters to lose!! Our bone marrow dr. isn't so sure, so we're going to be cautious. The bone marrow dr. mentioned today that we are going to take our time weaning him from both the ventilator and the CVVHD. Until we see some signs that Micah's vasculitis is improving, we can't know that he won't end up back where we started.

Every day, the nurses talk with us about having to add another line in Micah. With all that he's on, it's been impossible to get his meds in on time. Please pray with us that we won't have to add this line. It's just another risk for infection.

As I'm telling you this, I keep thinking about what Micah and I have been reading. Each day, I have been reading Psalms to him. Each day, I am more convinced that God is conquering his enemies, just as he did for David. There have been several times in my reading that David has spoken of near death experiences. Each time, God showed him mercy and kept him alive. Please pray with us for Micah, just as David prayed. Throughout Psalms, David speaks of God's lovingkindness, tender mercy, being his shield, being his healer..... God can be glorified in saving Micah's life.

With love,
Susan

Wednesday, February 1, 2006 8:13 PM CST

Dear Family and Friends,

I saw Micah around lunch time today to tell him good-bye until I can go back up there next Thursday. He looked smaller, almost like just a chubby baby. It was so good to see. They took off 975 ml yesterday in addition to the equal amount that they gave him. You can really see the difference. The Dr. is going to cut down the amount they take off with dialysis so that they do not take it off too fast. They were able to wean a little from the oscillator today. They also plan on doing this very slow this time. Night before last when I stayed with him part of the night when I put my hand to his he wrapped his fingers around mine and if I moved mine he would put two of his fingers out as if to reach for mine. That was wonderful! Last night he opened his eyes for Susan. Most of the time he is very sedated because he fights the oscillator and this makes his gases go down which is not what we want. It is nice when he is able to respond to us though.

Lab work looked a little better this morning.

Today's main different news was that Matthew has a stomach bug. Not a good thing. Please pray that Micah does not get it, that would be terrible and, please pray that Matthew gets well soon and that Susan, Travis or Karen do not get it. Karen is still up there helping them keep Matthew. Tonight she is going to take the first shift staying with Micah and then will go back to the apt. and will keep Matthew tomorrow. We are trying to get Susan and Travis some sleep. It is greatly needed.

Thank you for your prayers and all of your encouragement. It helps so much. Also if the person who cleaned my yard while I was gone reads this I want to thank you very much. It was a nice surprise.

Love,
Linda

Tuesday, January 31, 2006 7:00 PM CST

Hey Everyone! Today is not much different from yesterday. We still have no real answers and still don't feel as though we are getting any better. All of this is pretty discouraging, but one piece of good news is that Micah's dialysis has pulled 478 ml more fluid from him than the meds have put in. If we can keep a record like this going, maybe we'll be able to get some of the fluid off of his body. Our prayer now has to be that the dialysis will either be the answer or lead us to the answer for Micah.

Another concern from today is that there is now blood in Micah's urine and abdominal drainage output (enough that his urine is dark red). The doctors are unsure as to why this is happening. Maybe his platelets are low...Maybe it's because he didn't have his plasma phoresis...maybe an infection...we don't know. He is on high dose antibiotics just in case he is septic and he's on antifungals for his yeast infection. (The yeast infection in his lungs was verified today).

Susan and Travis are so very tired and frustrated. On top of this, there are no answers. They can't even touch their baby without gloves on and haven't been able to hold him since he was put on the ventilator. This has been the hardest on Susan.

Please pray that our family will continue to rely on God for all of our needs. Sometimes, it is so difficult to trust when things are so difficult. We are so thankful for all of you who keep in contact through the site and are praying for us. Please continue to do this.

Love in Christ,
Karen

Monday, January 30, 2006 6:55 PM CST

Dear Family and Friends,

Micah is still on the oscillator but they were able to wean him to 40% oxygen during the night last night. They have not weaned him any more but they are trying to go slow. Hemodialysis was started last night. It is continuous and they say it is easier on babies than the kind where they run a few hours, stop and then do it again the next day. It is called CVVHD. They did not think it would work but it seems to be because he has put out more fluid today than he has been given. He is still very swollen but they want to remove the fluid slowly. He is still draining a little from his abdomen but it has slowed down, very little urine output.

Thank you for the prayers. They are still very much needed and are a very big encouragement.

Love,
Linda

Sunday, January 29, 2006 9:33 PM CST

Hey everybody, tonights update will be a little different because my family has made the mistake of asking me Micah's Uncle to do it. Anyway Micah is still struggeling he is a very strong little boy. They tried to do a special kind of dialysis. This did not work because his blood pressure went up and his heart rate went down.

Now they have decided that they will try to unclog Micah's belly tube. From what I have been told they will flush it with some kind of solution that is meant to dissolve the clog. Please pray that this works we really need to get this fluid off of this boy.

Also please remember my sister, Travis, and Matthew at this time. They are very tired and we are doing as much as we can to help them get some sleep but it really is not enough. They are also frustrated because it is still hard for them to get any answers from the PICU. Though it is better than it was a few days ago. Little Matthew is just struggling with not being able to see his parents as much as he needs to. He also has an unbelievable ability to understand what is happening with his little brother. Thanks for all your prayers. We really appreciate them and thank you for not stopping.

Sincerely,
David Tamblyn

Saturday, January 28, 2006 7:59 AM CST

Susan and Travis are requesting urgent prayer for little Micah. Yesterday Micah seemed to be making some very positive steps, but during the night he began to have serious problems. He had difficulty breathing and the Flemings discovered that he has a yeast infection in his lungs. When his lungs were suctioned, blood came up. One of his catheters needs changing badly, but the ICU doctors/nurses don't know how or won't do it until a bone marrow doctor comes. They weren't able to get a bone marrow doctor to come during the night even though Susan and Travis insisted. In fact, they were asked to leave Micah for 10 minutes because of their insistence.

The needs are very great, but the Provider and Sustainer is much, much greater. Brothers and sisters in Christ, let's intercede for this precious family who is in the rough of the storm and help carry them through. They are so very worn. As Susan's Daddy used to often say (and we've heard it in other places too) , "It's not how you start but how you finish that counts." Let's press on and not give up.

Thanks so much.

Love,
Jeanne

Friday, January 27, 2006 7:07 PM CST

Dear Family and Friends,

Thank you very much for all of the prayers and encouragement you have sent. We can really tell that you have been praying.

Micah is still on the ventilator but is being weaned. They will do this very slowly but so far he is responding well. He is on 35% oxygen and they have the machine set at 15 breaths per minute. He does the rest. He has been maintaining his oxygen saturation at this level. They discontinued one of the meds that was keeping him sedated on the ventilator. He is still very sedated with the others but you can see him try to blink when you talk with him, although his eyes are so swollen I'm not sure he could open them. Today when I took his hand he close his fingers around mine and when I moved my finger he reached with 2 of his fingers to get it back. He has not been doing that. Sometimes when you talk with him he will turn his head. When they do mouth care he moves his tongue to the guaze. I am very thankful for these changes.

Bilirubin is down to 7.9. Other labs were about the same. Kidneys still need to improve their functioning. Please keep praying about this. He is very swollen.

Susan and Travis are exhausted but they did let me stay with Micah this afternoon while they went to the apt. for a nap. Last night they started taking turns staying with him during the night. Please pray for some rest for them.

Once again we thank you for prayers and for you signing the guest book. It helps to encourage. We ask your continued prayers.

Love,
Linda

Thursday, January 26, 2006 8:34 PM CST

Quick update
Today Micah received his mesenchymal cells and platelets. He continued to do well on the ventilator and his bilurubin and LDH levels were down (His bilirubin was 8.6 - much better than last week). The doctors are watching his kidneys and are trying to give him more fluids to increase output.
The Flemings had to give up their room on the transplant unit today due to another patient being admitted. This has the potential of posing an extra hardship on them because they will have to go elsewhere for showers, rest, etc. Also, it will make it more difficult for Matthew to visit. God will provide - perhaps in ways we never expected. Please pray that He would give strength to Susan and Travis' weary minds and bodies and continue to encourage them.
Thank you for your prayers and support.
Love,
Jeanne

Wednesday, January 25, 2006 7:42 PM CST

Dear Family and Friends,

Micah still remains in the PICU. He was changed from the oscillator to a ventilator today and the transition went well. In fact the respiratory therapist told Susan that his settings are fairly low for someone who has just transitioned. His response to us is only a closed eye blink when we talk to him or touch him but he is being sedated so that he does not fight the ventilator.

His bilirubin was down today to 10.6. This is a significant drop. It has not been this low in weeks. This is a very good thing.

He will receive more MSC's (mesenchymal stem cells) tomorrow. The Dr.s don't think it had anything to do with the respiratory problem but it was after receiving them Monday that he stopped breathing. Pray, please. These same cells though may be the ones helping to heal the liver and make his bilirubin go down.

The Dr.s are very hopeful. He has made progress but he has a long way to go.

We thank you for all of your prayers and encouragement. Remember Susan and Travis, they are very tired. Matthew is doing pretty well but he always asks where is Micah and frequently wants his MaMa and Daddy.

Love,
Linda

Tuesday, January 24, 2006 8:46 PM CST

Hi Everyone,

I wanted everyone to have an update so that you will know how to pray for all of us.

Micah has been sedated and on an oscillator since yesterday. (An oscillator has the same purpose as a ventilator, but is much easier on the lungs). He is still in the PICU, but is stable for now. Today, the doctors did a bronchoscopy where they go down into the chest and look at the bronchial tissue. Then they push fluid down into the bronchial openings and vacuum the fluid back out. The returning fluid was cloudy, indicating either an infection or the fact that the mesenchymal cells are showing up in the lungs. They’ve done all of these tests, but haven’t gotten any results back yet. So, they are pumping the little man up with antibiotics just in case it’s an infection. They also put in a groin catheter today in order to have another access. The lines in his chest have begun to cause some problems with pheresis and some of his medicines.

Since yesterday, the situation with Matthew has improved a little. He has been allowed to see Micah for a few, very short visits. Mama got to Durham safely last night and ever since, has been a huge help to the Flemings. (I am so thankful that God has provided Christian co-workers that care about Mama and her family). THANK YOU LORD! She has only been able to see Micah a few times today, but her being there makes it possible for Susan and Travis to both be with Micah.

I have officially withdrawn from Armstrong and will be moving to Durham to help out. I just really felt that God was leading me in that direction. This, along with my job, and my time with Mitchell was very hard to give up. However, I know that God has a plan…a perfect plan for all of us and that we must be obedient to him. I leave tomorrow. Pray for me. I’m not sure I know how to play the mommy role.

That’s pretty much everything for now. We love and appreciate all of our prayer warriors and are so thankful that God has provided you for us.

Love in Christ,
Karen Tamblyn

Monday, January 23, 2006 8:21 PM CST

Dear Friends and Family,
Travis and Susan want all their prayer warriors to know that Micah has been put on a ventilator and is now in the PICU. He stopped breathing today at 11:00 a.m. and had bad spells throughout the day. The doctors don't know the reason why yet. Tomorrow they plan to do more tests.
Matthew has taken all this pretty hard and can't understand why his brother's bed is gone. Please pray that the Lord will comfort him and give him peace. Also, since Micah is in the PICU, Susan and Travis are not allowed to sleep in the room with him. One of them can stay with him as long as they are awake, but once they doze off they have to leave. Their plan is for Susan to stay as long as she can and then to call Travis. Staying up is not as difficult as functioning well the next day. Please pray that the Lord will strengthen them with His strength, give clarity to their weary minds, and uphold them with His mighty hand....
In addition, Susan's mother is traveling tonight in the fog to help with Matthew and any other way needed. She worked all day and has about a 7 hour trip. Please pray that God would grant her a safe trip and refresh her heart and mind by His Spirit as she travels.
The Lord is good. He is Almighty and merciful. He is holy. He has the best plan. Thank you, Father, for being in control.
Thank you for your prayers.
Love,
Jeanne (Susan's sister)

Sunday, January 22, 2006 6:45 PM CST

Micah had a pretty good day in comparison to the past few weeks. After the drs. put him on a continual drip from his abdominal catheter, he was able to drop down to 10.125 kg. (He lost about 2 lbs. overnight) It was almost strange waking up and finding that he actually looked BETTER than the night before. Actually, the night was full of "wake-ups". Micah kept wanting to lick his green toothettes. It's been so long since he's been able to open his mouth without getting sick, that I was more than willing to lose the sleep. He's seemed so much more comfortable without the extra fluid. I'm pleased with the improvement, but I know that this isn't a permanent fix. Please pray with us that God will permanently fix the problem. Micah has leaky vessels and low albumin that cause the fluid retention. The drs. can't figure out the source of the problem and, therefore, can't fix it. This one's up to the One Who Created Micah.

Micah's urine output has stayed steady. It hasn't really increased, but at least we know the kidneys are functioning. So far, he hasn't had dialysis. His lab levels are still elevated, but they are stable. Our days lately are filled with watching his catheter for puddles. We've threatened to get party horns for each time we see a tee-tee puddle.

I was getting pretty drained toward the end of this past week. It feels as if the right to be "mommy" has been taken away sometimes. For about 2 weeks now, I haven't even been allowed to change Micah's diaper. I can't feed him. I can't pick him up. I can't give him a bath by myself. He can't even wear any of his own clothes anymore. For what seems like a very long time, the only sign that I was "mommy" was that I was allowed to stay with him constantly. The Lord showered me with grace today, though. Because of the weight loss, I was able to give Micah a bath...change his clothes...put a new diaper on him...and hold him while I stood up. We even were allowed 5 minutes out in the hall. Travis held the catheter bags, while I carried Micah. It was a bit of a strain on him, but he really seemed to enjoy it. I know we did! Thank you, Father!

I'd like to also mention another little girl here on the unit. Her name is Shreya and she is very sick. She no longer speaks, from lack of energy and possibly depression. Her parents are trying their best to fight for her, but the drs. have been known to be very discouraging in her presence. Please pray that she will begin to grow cells and that her kidneys will begin to work again. She has very loving parents who would obviously do anything for her. They are Hindu. Pray with us that Jesus will fill the void in her heart and heal her precious body.

Still fighting,
Susan

Saturday, January 21, 2006 9:12 PM CST

Dear Family and Friends,

Susan asked me to update for her tonight. It has been a busy day for them but a day that seemed better than some have been.

This morning Micah weighed more than he ever has...11.04kg. He was miserable due to all of the swelling. The Dr. decided instead of draining the abdomen to hook the catheter in his abdomen to a drainage bag and let it drain by gravity. The only problem is that sometimes it gets clogged up and they have to figure a way to get it going again without opening the system because it is a sterile system. Micah is still very swollen but has put out more fluid today than he took in. Urine output was about the same as yesterday. At least it is holding steady. His labs today were about the same as they have been running.

They are having trouble controlling his blood sugar. This is an expected problem with the steroids.

There were some nice changes though. Susan said he opened his eyes several times today with lights on and it didn't seem to bother him as much. They have green toothettes that they do mouth care with and he wanted to lick them today. He seemed to want something wet on his mouth, and it didn't make him sick to have them. He has not wanted his mouth touched with them for 2 wks. They took the blood pressure cuff off his arm except when they were taking it today and tonight he starting reaching his taggie blanket with both hands. He was off the Bi-Pap for about 4 hours today.

Today Susan and Travis were able to hold him out of the bed for the first time since the liver biopsy. Susan said she didn't know if it mattered to Micah if they were holding him while lying in bed with him or in a chair. She said it did her and Travis a lot of good to be able to hold him out of bed.

Today at work I got a call from them. They told me to listen. Micah was cooing. We have not heard him coo in so very long. It was wonderful!

God is good. Today is T 100. The Dr. pointed out that most people are going home on this day. We thank him for these tiny changes though. We pray that Micah will continue to improve and will be healed. Thank you for agreeing with us on this and praying for Micah. All of you are an encouragement to us.

Love,
Linda

Friday, January 20, 2006 6:32 PM CST

Micah's eyes are still swollen shut. We spent most of the day in the dark, waiting for Micah to try and open them. He seems to open them better in the dark, and we're wondering if maybe they are sensitive to the light. The dr. looked at them today, but didn't see anything alarming.

Micah was able to stay off the BiPap for most of the day. We finally put him back on late this afternoon to rest him up so we can take him off again this evening. He struggled a little this morning, but breathing got much easier as the day wore on.

His urine output was better today. It's still low, but gradually increasing. The drs. decided not to do dialysis again today. We'll look at it again in the morning. Thankfully, three of our nurses were trained to do the dialysis today, so we shouldn't have to go to PICU just for that.

The fluid buildup is still a problem. Micah was the biggest yet this morning. After draining throughout the day, though, he's feeling better.

Thankfully, we've been able to see a few baby steps in the right direction. The hard part is that we're never really sure if the improvements will stick. Most of the time, we don't even consider them improvements until they've remained through to the next day. We are so thankful for our baby steps, and praise God for His mercy.

Continueing to pray,
Susan

Thursday, January 19, 2006 9:09 PM CST

Dear Family and Friends,

I talked with Susan a few minutes ago and told her I would let all of you know how things are going. Things aren't really a lot different. Micah's eyes are so swollen he can not usually open them. The one time he did get them open tears just poured from them and he could not keep them open. Tonight his abdominal catheter would not drain. They continued to work with it until they once again have it open. Thank you, Lord.

They did not do dialysis today. They told them they are going to take it day by day. We will see what happens tomorrow. There does seem to be a shifting of his fluids. His legs are not quite as swollen. I'm not sure if this is good or not because they had to put his Bi-Pap on 25-30% oxygen this morning and it is on 25% tonight. This is due to the fluid in his chest.

Matthew is better today. After some Tylenol last night the fever went away and has not returned. Susan said he has been bouncing off the walls today. I think David is learning a lot about taking care of little ones. Susan says he is doing a great job though. He even washed their clothes and cooked them supper. (Yes, I am a proud mother)

Thank you for your prayers and updates to the web site. It helps give Susan and Travis the support they need. You can really tell that people are praying. God is taking care of them and we want to be sure to give Him praise.

Love,
Linda

Wednesday, January 18, 2006 8:22 PM CST

Today was a little more interesting. Micah didn't sleep well last night, because he was quickly retaining more fluid. By 9am, we were having to increase the pressure and oxygen of the BiPap. Throughout the day we had to take more fluid from his abdominal catheter in order to help him breathe. This fluid thing is becoming a real problem. Dr. K came in today and said that the fluid is actually causing more problems than anything else. They are really having to work hard to keep control of it.

We've been doing plasmapheresis every morning for the past 11 days. However, this morning we had to cancel. Micah's electrolytes were all low and the pheresis has the potential to cause seizures if the electrolytes aren't kept under control. We've worked all day to increase his sodium levels, but they are still low. Tonight, the nurse took a sample of his urine to test. If it has too much sodium in it, it could be a sign that the kidneys might not be working right. Pray with us that Micah is not losing sodium in his urine.

At 1:00, Micah received his second dose of MSC therapy. With each treatment, Micah receives 8 million cells per kilo...that's over 80 million cells! All went smoothly. About 3:30, we had a surprise visitor. The president and CEO of Osiris (the maker of the therapy) stopped in to see us. He brought Micah a teddy bear with a silver necklace on it. The necklace was engraved with the word "Hope". He was such a nice man and seem to sincerely care about Micah. It was nice to be able to freely ask questions. When we asked what the success rate has been so far, he said, "100 percent. That's because we've only used it in one other infant so far!" Funny...but not so comforting. He also said that, from his experience, we are at the best hospital there is to have a transplant. He said that if it were his daughter, he would find a way to bring her here. Nice.

My mom went home this afternoon. It was hard to see her go as we've grown to depend on her so much. Thankfully, David is still here until Sunday. We were even more thankful for David when Matthew suddenly got a fever tonight. He'd been droopy all day, but didn't have a fever. By this evening, though, it was up to 101. Off the unit he went. He's not allowed back on the unit until he is symptom-free.

Thanks again for all the prayers,
Susan

Tuesday, January 17, 2006 6:52 PM CST

Dear Family and Friends,

Not so much has changed. All of Micah's labs stayed pretty much in the same range.

It was a little scary waking up this morning. I looked at Micah and discovered that his left eye was completely swollen shut. I could see his eye lashes moving as he tried to see, but the lid was just too swollen. Thankfully, the right eye could open a little. Micah was much heavier today and we've struggled to keep him comfortable. We did take off some of the fluid out of his catheter, but this really didn't change too much.

The drs. are pretty sure that Micah is going to have to begin dialysis. At first, they were saying he'd start tomorrow morning, but none of the nurses on the unit are trained to do peritoneal dialysis. This is the type of catheter that Micah already has. The plan is for him to begin dialysis Thursday, so the nurses have a chance to learn. However, there is a chance that Micah could need the dialysis tomorrow. If this becomes the case, he will have to be moved to the ICU. This will be very difficult, as the ICU doesn't allow parents to stay with their child constantly. Apparently, if the parent doses off...out they go. This could also be hard as my mother has to leave tomorrow because of her work schedule. Thankfully, David is here until Sunday, though. It's a challenge already trying to figure out how to juggle between Matthew and Micah's needs. I fear the ICU may make this even harder.

We are continueing to wean Micah off of his BiPap. Today, he was able to go almost 3 hours before needing to put it back on for a nap. The chest xray from today showed even more improvement. We are pleased that Micah is now definitely ready to come completely off of his support. Hopefully, we will be rid of the BiPap by the end of the week.

Tomorrow, the drs. are planning an unscheduled MSC treatment. The next one was scheduled for Friday, so we are pleased to have the chance to do another one early. There is still no sign of any improvement with the cells, but we are still praying.

That's all I know for now. Thanks so much for keeping us in your prayers. The strain of our situation is causing Travis and me to struggle to be nice at times. Our bodies and emotions are becoming increasingly weary. Matthew is also beginning to show signs of stress. Even though he is sleeping well at night, he seems to always be tired. Please keep us in your prayers...that we will choose our words wisely, that our attitudes will be glorifying to God, that Matthew will have wisdom beyond his years....

We love you,
Susan

Monday, January 16, 2006 6:31 PM CST

Today was a little easier than it has been lately. We have been able to slowly keep weaning Micah off the BiPap. He was able to go for an hour and a half without it several times today.

Some of the labs looked a little better...some only by a decimal point, but we're glad to see it! We are beginning to give Micah extra fluids. This seems strange when he is so swollen, but the dr. seems to think his vessels are dehydrated. This could be the reason his kidneys are acting up. So, in order to save the kidneys we are allowing Micah to GROW. We have doubled the amount of fluids he gets daily. Only about half of it actually reaches the kidneys and the other half leaks into his tissues. This makes him uncomfortable, but his kidneys have proved to still be working. (Thank you, Father!)

The dr. said today that Micah looked better to him than he did Friday. We agree, and are thankful. Our nurse told us that he couldn't say that Micah was getting better, but he could say that he wasn't getting any worse. After all that's happened in the past few weeks, this is GREAT news.

More good news is that Micah is beginning to want to be held again. It isn't easy to actually hold him in our laps, so we've begun letting Micah lie on the bed and just putting our arms around him. This seems to satisfy for now. Micah has also been more alert lately, and seems to watch everything and everyone constantly.

Even though Micah is still very sick, I thought you might like to hear some positive news. He still has a very long way to go, but we are trusting God to pull him through. God is the Great Physician and we are believing that He is using Micah to prove Himself worthy of praise. God uses extreme situations to reveal Himself in mighty ways. Travis and I have had to remember that we dedicated Micah to God, therefore God can use him the way He deems necessary. There have been many times that we have had to re-dedicate Micah. Our fear sometimes causes us to want to take control. However, we know that God's arms are the safest place for Micah to be.

Thank you for your prayers and encouragement. You are pulling us through.

With love,
Susan

Sunday, January 15, 2006 8:06 PM CST

Hi! This is Karen again. Wow! What a day! I am amazed at God's grace in letting us have Micah one more day. He scared us today though...scared us bad! First thing this morning we had about ten people in our room trying to get Micah breathing right. From then on, things just got worse. The doctors said that his Potassium was way too high and that this could damage the heart. Therefore, they did an echocardiogram. The results that came back were not comforting. His heart appeared to be enlarged...quite a bit. However, the cardiologist didn't seem worried yet. They were very worried about the fluid he had retained during the day, his breathing, his electrolyte levels, and the results of his labwork in general.

The new attending physician that just came in this weedend finally came in and admitted that we have a very, very sick baby on our hands. He also said that it would not be ridiculous to really start to worry at this point, but that he felt we might be able to control Micah's symptoms at this time. There were so many people in the room working on Micah that there literally wasn't room for Matthew and me. We spent the day in one of the parent lounges provided on the unit.

Tonight, Micah seems more stable, but today was very discouraging. Susan and Travis are really beginning to show the expected signs of depression and loss. The stress is unbelievable and seems to be unbearable. Your prayers and support are, as always, so appreciated. We are so blessed that God has provided Christian prayer warriors to battle for us during this time. Pray for healing. Pray for peace. Pray for strength. Just pray and pray hard.

In Christ's Arms,
Karen

Saturday, January 14, 2006 7:18 PM CST

Thank you all so much for your faithfulness in prayer for Micah. We are so thankful to you for allowing us to "lean" on you for prayer and encouragement.

This morning started out discouraging again. Micah's bilirubin was up to 16. It's supposed to be around one. His LDH was in the 4000's (supposed to be around 900). His creatinine was at one (0.4 usually) and BUN at 70 (30). This showed that his liver and kidneys were pretty sick. The nurse put a cathetar in this morning to see if he was actually making more urine than he was able to put out. He ended up making a little more urine than we thought he had in the past two days.

We also just learned that Micah's potassium is too high. With all the lasix, diuril and dopamine he's been on, we've actually been concerned about him having low potassium. If it continues to rise, he could be at risk for heart damage. The drs. are trying to stay on top of it and are checking it often.

On a more positive note...Micah has been able to be taken off the BiPap machine for 15 minute increments throughout the day. He did well while he was off, but acted grateful to be put back on. His chest xray looked better, but wasn't quite normal. We'll have to keep him on the machine for a little while longer to make sure his lungs don't try and collapse again. While off of the machine, Micah seemed to thoroughly enjoy being able to rub his tags all over his nose and mouth again. I think that's the most active I've seen him in awhile. He's still pretty weak, but it's nice to see some personality come out.

Tomorrow, my mom and brother are supposed to be coming up to help. We are so thankful to have some family to help with Matthew and errands, and for emotional support.

With love,
Susan

Friday, January 13, 2006 7:13 PM CST

Hello! This is susan's sister, Karen. I am here in North Carolina, because the doctors requested that Susan and Travis have some family here during this difficult time. They want to have the stress of taking care of Matthew taken off of Susan and Travis and have some support here for them.

Micah was a little more alert today than he has been all week. He seems to be in less pain from the surgery and is looking around and reaching for his tags. We finally got a report on a new x-ray from today. The results look a little more positive than what we have been seeing. His lungs seem to be somewhat more inflated. He still has a long journey ahead of him, but there is no sign of fluid in the lungs. This is encouraging.

He had his first session of MSC therapy today and tolerated it well. The room was filled with researchers there to watch Micah's responses to the therapy. He is the third pediatric patient in this study to have ever used the MSC therapy. Micah likes being a pioneer. We won't know if there was any effect for up to seven days.

Please keep praying!!! We are in such critical need of it right now. We believe that God has his hand in all of this, but it's easy to get discouraged. We are so thankful to have friends like all of you who are faithful prayer warriors.

In His Arms,
Karen

Just to add a quick note. Today is Susan's birthday. Micah gave her the best present when he reached up to touch her face today. It has been a long time since he was able to do that.
HAPPY BIRTHDAY SUSAN!!
Linda

Thursday, January 12, 2006 9:52 PM CST

Please keep praying.

Micah is very serious. We are trying the experimental treatment tomorrow. There are no guarantees.

Micah has been breathing using a bipap machine for the past 24 hours. This is in an effort to inflate his lungs. They are trying to collapse and the xrays are unclear as to whether there might be fluid in them.

Tonight, we were reading some material and found that we had not been told exactly how serious stage 4 GVH is. We have been talking with drs. ever since, and are very disappointed in them. We feel that, whether unknowlingly or not, they have not been clear as to how serious he is. Micah is in extreme need of prayers. His little life is on the line right now.

Praying,
Susan

Wednesday, January 11, 2006 7:40 PM CST

Dear Family and Friends,

Today did not start out the best. Susan called us to come this AM because his oxygen sat. dropped to 83%. They try to keep it around 95% or better. Usually you put the blow by oxygen to his face and it comes right up but not today. She had been up with hiim a lot last night. It turns out some of the problem may have been due to pain. He had been weighed and measured and his diaper changed and his little tummy is sore. He was holding his breath. After some fentanyl he relaxed and his oxygen levels came up. He is on an oxygen mask now.

Some of the problem could have also been all of the swelling. His face and hands were very swollen and so was his tummy although it did not look as big as before surgery to me. They put him on a Lasix drip and also removed some fluid from his abdomen. They took off 300cc or about 10 oz. He looks smaller now although he is still swollen. His blood pressure was also high this afternoon but since they took off the fluid it is doing good.

He slept a lot today but has been more awake tonight. But now he is hard asleep and that also makes his oxygen sat go down. One of the nurses gave him a taggie blanket. This is a blanket with different tags sewn all around it. One of Micah's comfort items is the tags of his blanket which he likes to chew. At first he did not seem too interested. he just stared at it. Then later tonight he discovered they were tags and played with it until he went to sleep.

Everyone is still a little nervous. It seems every time things go better then something else goes wrong. The roller coaster is rough. Thank you for your prayers and encouragement.

Linda

Tuesday, January 10, 2006 8:22 PM CST

Micah's day has been uncomfortable. His tummy is sore, he can't move around, he can't be held, hasn't wanted any food or water, hasn't wanted any comfort objects, etc.

Tonight, the drs. decided to drain some fluid off of his tummy. They drained 180cc's in order to help his breathing. It is such an uncommon procedure on this unit that our doctors seemed a little nervous. All went well, though, and Micah is much more comfortable.

After having a chest x-ray, we discovered that part of his left lung was collapsed. Don't worry, it is not as serious as it sounds. They will turn him from side to side and give him albuterol breathing treatments. This is a fairly common problem after surgery, especially when the patient can not be moved much.

Preliminary results of the biopsy suggest that his liver might have mild GvH. Normally, this is treated with drugs to which Micah is very sensitive. So the plan now is to try a very new treatment called MSC (mesenchymal stem cells). Because they are natural, there are no known side effects. What a relief not to have side effects!!!! We will have to use a small amount of drugs that have caused Micah to have kidney problems in order to keep the GvH away for some time. Please keep this in your prayers as we are very nervous about allowing this. We know it is needed but we do not want damage.

We were also told that there was no sign of liver failure as was thought Sat. In our hearts we believe we know why. The Great Physician took care of the problem.

We still have not recovered from the terror that we felt Sat. Travis and I are still wound pretty tight. We have not been able to catch up on our sleep and are sometimes afraid to hope. However, when we get too exhausted to think of words to pray we are encouraged to know that you have blanketed Micah with your prayers. You have stood in the gap for us and bore our burdens. It would have been so much harder without you.

With love,
Susan

Monday, January 9, 2006 7:28 PM CST

Hello Family and Friends,

Today Micah had a liver biopsy. They did the more invasive procedure of making incisions in his abdomen to do the biopsy so if there was bleeding they could stop it. They also put in a catheter to drain fluid off of his abdomen if it starts to compromise his breathing. When they opened his abdomen the fluid came rushing out. He lost over 1 lb during the surgery due to the fluid being removed. He looks like our little baby again. Unfortunately the fluid will return until the problem is corrected and to do that they must find the problem. He did much better through the surgery than the doctors expected. We cannot hold him or change his diaper or move him in any way without a nurse there due to the danger of him starting to bleed from the liver for 48 hours.

Hopefully the biopsy will tell us what the problem is and then they will be able to correct it. They will continue to do the plasmapheresis every day. It does seem to be helping some. The surgeon told them the liver was hard. Usually this means the liver is diseased or not functioning. Hopefully this is due to the elevated bilirubin but we don't know.

Susan and Travis are praying but are struggling with all of the ups and downs. The downs seem to go lower each time. Travis is being allowed to stay at the hospital at night also right now. Normally they only allow one parent to stay at night. No one is saying that Micah is going to be ok. They keep saying that he may be ok if... All the doctors admit they do not know what is wrong and they were even told they had not seen a case like this one with a bone marrow transplant, especially when the cord blood and bone marrow came from such a close relative match. Dr. K has requested family stay until at least Wednesday to be with Susan and Travis during this very critical time.

God has answered prayers though in that he is still with us. The nurse and doctor admitted Sunday that the improvement that was seen was not due to any medical intervention because they did not do anything different. We know! God is the one who did the work. It has given us several chances to share that all the people praying has made a difference. Today Susan asked one of the doctors what she and Travis could do to help Micah. His answer was pray. We told him we were praying and that people all over the country were praying.

We appreciate your prayers and encouragement and ask that you continue to pray. Micah and the rest of the family need it.

Love,
Linda

Sunday, January 8, 2006 3:15 PM CST

We made it through the night. Micah is still very serious, but stable. The drs. are saying that it could go either way, but he's got a chance. Last night, everyone we talked to was basically dooming him. This morning, most people are hopeful. Travis and I are sure that it's your prayers that have made the difference.

Tomorrow, Micah is scheduled for a liver biopsy and abdominal cathetar to drain off fluid. This is a pretty serious surgery because of several reasons. Instead of being a normal laproscopic surgery, the drs. will actually make an incision. This is to prevent internal bleeding. It is also a risk because they will be biopsying a sick liver and have to go through a very swollen tummy. He will have to be watched closely for two days after surgery. This is a little nerve wracking, but compared to last night, we're just glad to have the option.

Some of Micah's labs look a little improved. This isn't always totally reliable, though. Thankfully, Dr. K came by and said that she doesn't believe the kidneys are in severe danger.

The drs. have no medical reasons for these changes. Although we are not near to being out of the woods yet, the drs. have admitted to not having any reason for the changes.

Thank you and we love you,
Susan

Saturday, January 7, 2006 7:15 PM CST

HelloFriends and Family,

We are asking for urgent prayer at this time that God will heal little Micah. Susan called a short time ago and gave us the news that the nurse had said if family wanted to be here it was time for us to start coming. He knew we all lived a long way away. All of this is hard to accept because I could hear him cooing in the background and he has even played today.

There is still hope, it is just that the next few days are very critical. His ammonia level is very high which the nurse told them means his liver is very tired and if it does not get better he could go quickly.

Earlier today they were told he only has 15% kidney function. All they are doing is buying him time so his body can heal. The longer he can survive the longer he has for his body to heal. The organs were damaged by the chemo. They told them if they had to move him to the Ped ICU they should be concerned he might not make it. This would be if his breathing became compromised. So far he only has to use the blow by oxygen and he doesn't have to have it all the time. This was before they knew the ammonia level. Consultations were being made for a surgeon to do a liver biospsy and put in a dialysis line.

The hospital is bending their rule of only one parent staying at night and allowing Travis, Susan and Matthew to stay with Micah tonight.

Thank you for your prayers. You know our God is all powerful and He can still work a miracle.

Love,
Linda

Friday, January 6, 2006 4:08 PM CST

MICAH IS 7 MONTHS OLD TODAY!

Micah still isn't much better, but we're trying new things. Today he's had an x-ray of the abdomen, an ultra-sound, and plasmapheresis. So far, we haven't gotten any news on them. His BUN is up today and if it continues to go up we may have to consider dialysis.

Last night I went and slept at the apartment for the first time without Micah. It has been a month and a half since I was able to sleep without interruption and was surprised at how tired I turned out to be.

I struggled going to sleep last night. As soon as I walked into the apartment, I was flooded with emotion. It didn't seem right to be there without Micah. Everywhere I looked there were signs of our once-healthy little boy. The change in his pictures from just a month ago was pretty scary. I spent most of the night on my knees, begging for God's mercy. I tried hard not to call, afraid of waking him up. Finally, I knew I wasn't going to sleep without checking on him. After I knew he was still o.k., I was able to fall asleep at about 1 a.m. I slept so hard, I didn't even know that some time in the night Matthew came and joined me. I woke up to a sweet, but fierce, kick to the face! Matthew was so understanding all morning as I tried to pull myself from the bed. He laid with me for an hour before insisting on some breakfast. It surprised me how I hadn't even taken the time to realize that I wasn't sleeping.

We ask you to urgently pray for Micah. When talking to the Dr. last night he said "What you are really asking is what is the prognosis? I can't tell you until we know what is wrong."

Thank you for your prayers. As always, your words of encouragment in the guestbook have lifted us up some. You bring so much strength to us.

With love,
Susan

Thursday, January 5, 2006 6:29 PM CST

Things haven't gotten any better. In fact, Micah is now the biggest he has ever been. His tummy measures 60.5 cm.

Tomorrow the drs. are going to try something called plasmapheresis. This is where they take Micah's blood out, clean it off, and put it back in to him. We're hoping that Micah's schistocites-problem is caused by an anti-A antibody in his blood. At some point, Micah has gotten a blood product that had this on it, and it has stayed in his system. Normally, people can handle this and never know it's there. We're hoping that this is the cause of the problem, but the drs. are open about the fact that they are guessing.

We've also had a day filled with specialists coming in and evaluating Micah. Our dr. said today, "the more brains, the better."

Please keep Micah in your prayers. Our whole team of drs. has admited to not knowing what is wrong with him. Every thing they try is just a guess. Micah is very uncomfortable and cannot eat.

Thanks for all you do. Sometimes we feel like the help you give is so much more effective than the drs.

Praying,
Susan

Tuesday, January 3, 2006 6:39 PM CST

This morning started out a little discouraging. Micah's bilirubin was up to 11.7. Instead of becoming lower without the enalapril, it has continued to rise. The dr. is hoping that Micah's liver is just a little slow on filtering out the enalapril. He is going to wait until the end of the week before trying something else. Hopefully, by then Micah's bilirubin will be lower and the schistocites will be fewer. If not, we are in a game of "guess which med might be causing problems." After counting all the meds Micah is on, I discovered that we have 21 meds to consider. I knew he was on alot, but hadn't taken the time to count them until today.

On a brighter note, the music therapist came today. Our whole family really enjoyed it. Matthew was a little shy at first, but hasn't stopped talking about the "music man" since. Micah was leaning toward him the whole time and "singing" right along. It was great seeing how much music really "lifted" the children...and their parents.

Keep the prayers coming. It's hard being back where we started. I'm so thankful Travis is here with us. He's really helped to remind me of God's all-knowing plan.

With love,
Susan

Monday, January 2, 2006 5:38 PM CST

Thank you all so much for your continued prayers. It gives us strength to know that Micah is blanketed in your prayers.

There wasn't much improvment in the schistocytes and jaundice problems today. Micah's bilirubin actually went up to 10.2 this morning. He is definitely more "golden" now.

However, Micah is continueing to improve in the way he acts. He is obviously feeling MUCH better than he has in quite a while. Today, I went to our apartment for a few hours to get some much needed rest. When I returned, Micah gleefully greeted me with arms outstretched and a big, chubby smile. That's the best gift I've had in a LONG time.

Speaking of a long time...I was able to go the apartment today for the first time in over a month. This was my first time outside, my first time driving, my first time sleeping with no interruptions...in a whole month! I wasn't sure I'd be able to find the apartment, but it all came back to me. Thank You, Father, for helping me appreciate things in such a different way. It's so nice to have Micah stable enough for me to have a break.

Update on Matthew...
Matthew's getting more and more handsome every day. He's become such a little man. He's constantly surprising us with new phrases he says, and what an amazing heart God's given him. God has really used this time to start Matthew on the path to being a man after His own heart. He has such a giving attitude and doesn't seem to mind our "different" situation at all.

Please continue to pray that whatever is going on with Micah is caused by the Enalapryl. This is a very easy drug to replace. We are praying for improvement by tomorrow. If Enalapryl hasn't caused Micah's problems, the drs. are back at square one again...clueless.

Thanks so much and we love you all,
Susan

Sunday, January 1, 2006 7:33 PM CST

Happy New Year!!!

Well the new year is starting off better. Micah is playful and looking good. There is a problem though. The schistocytes(spelling?) have returned. These are the fuzzy looking red blood cells. The doctor was researching Micah's old records and looking up side effects of medicines. One of the very rare side effects of Enalapryl, his blood pressure medicine can be this. They took Micah off the Enalapryl and the doctor said if this is it things should improve in 2 days. He said this is very rare but Micah does like to do rare things. Please pray it is a side effect of the medicine and not something they do not know what is the cause. His bilirubin is also high at 9.0. So we have a little yellow baby.

Their computer will not work at all so they are having to use the hospital one and she never got a turn today. So you may continue to hear from family updating the web site for them.

Thank you so much for your prayers. Please continue. We hope all of you have a wonderful new year and that God richly blesses you this year.

Love,
Linda

Friday, December 30, 2005 4:31 PM CST

Micah is still gradually getting better. Yesterday, he even gave us a little smile. It wasn't the open-mouth one he used to give, but he's on his way there.

We did an ultrasound yesterday to look at his gall bladder and liver. It showed that the walls of his gall bladder are even thicker than the last one. The surgeons still don't think we need to do surgery, though. (Yeah!) We checked his liver because his bilirubin has been increasing daily. The ultrasound didn't show any problems, but did reveal that his umbilical vein has reopened. This is the vein that closes after birth. This can sometimes mean high blood pressure in the liver, but this didn't appear to be the case. Dr. K says that the opened vein shouldn't be a problem. There's really no problems that it causes, and no way to really fix it. Hopefully, after all the problems caused by the GVH are fixed, the vein will close back up.

Micah started physical therapy today. He's lost a great deal of the skills he had acquired before he was readmitted into the hospital. I was encouraged because we had already been doing many of the things the therapist was showing us. She also recommended we get Micah involved in occupational therapy. This is to help Micah with fine motor skills. Other than a little reaching, Micah hasn't been wanting to use his arms much. I'm excited about having the chance to help Micah catch up.

Other than that...no news. It's nice to have some boring time. We're praying this upward trend continues.

Susan

Wednesday, December 28, 2005 6:17 PM CST

Look! We have new pictures up! Allison Tripp always does a great job putting these up for us. She's such an inspiration. Her daughter's site is www.caringbridge.org/ga/lydiavail. Also, the black and white picture on the front page was taken by one of our favorite nurses, Andre. It turns out he's quite the accomplished photographer, and has blessed us with many beautiful pictures.

Micah is continueing to gradually improve. No smiles yet, but we're working on it. We can tell he feels better because he doesn't mind being held, and is beginning to play and reach for things. He's still got a long way to go, but he's on the right track.

Things to pray about:
*The increased steroids needed to treat the GVH also causes high blood pressure. A normal blood pressure for a child his age is around 75 over 45. This past week he's gotten as high as 153 over 113. He's on three different blood pressure meds. If he continues to have trouble, he will have to be put on a drip. This will require us to stay in the hospital even longer, and can be hard to wean.

*Micah's bilirubin is elevated, leaving him a little jaundiced. This should clear up as the GVH goes away if the drs. suspicions are correct.

*Micah's albumin is low. This is the protein that has caused him to gain weight throughout the past month. Right now, his weight is slightly elevated, but tolerable.

That's about it. Thanks for the encouragement, and please enjoy the new PICTURES.

Love,
Susan

Tuesday, December 27, 2005 4:24 PM CST

I'm sort of fearful to admit it, but Micah is IMPROVING. It seems like every time I say he's doing better, he takes a step backwards. But...our faith is not in superstition, but in the Creator of Micah's life.

Yesterday, we were able to keep Micah awake for most of the day. He was still pretty groggy and weak, but seemed to enjoy his day much more than normal. We even took him to art, where he watched Travis and Matthew color and make boxes.

Later in the afternoon, my mom and brother came to visit. This made it even easier to keep Micah awake. He seemed to really enjoy new faces to look at.

By last night, he was actually making efforts to be held. It's been so long since he's felt comfortable being held. I just sat and rocked him for what seemed like hours. All through the night, when he would wake up, he'd rub his face up against mine. (So many sweet signs that he's feeling a little better)

Micah will have to begin physical therapy soon. He's lost most of the milestones he'd grown to have. Sometimes, it's even hard for him to lift his head. Hopefully, soon he will feel much better, and can begin rebuilding his muscles.

He's still not eating well. I feel like I've succeeded if he nurses twice a day. Thankfully, he still has his IV nutrition, but the goal is to get rid of that soon.

We've really enjoyed having Mom and David here with us. Tonight, Travis's sister is coming with one of her friends. For so long we couldn't have any visitors. Our visitors still have to take many special precautions, but what a blessing to see family again.

Thanks for keeping up with us,
Susan

Sunday, December 25, 2005 5:10 PM CST

MERRY CHRISTMAS!!!

Even though we are not "home for the holidays", this Christmas has been such a blessing. It's been such a joy to have Travis home with us. He's usually working so hard during the Christmas season to really enjoy his Christmas day off. (I think we're getting spoiled having him with us all the time.)

Today began with somewhat unpleasant news. Micah had a fever of 103. A fever doesn't usually occur with GVH, so our fear is that he could have possibly gotten something from the colonoscopy Friday. Common problems from something like a colonoscopy are pneumonia and staph. Our medical team jumped on it right away...taking blood cultures and starting him on broad spectrum antibiotics. The fever has gone down, but Micah is very weak and tired. Please pray with us that this fever was caused by the GVH and not something else. His little body is fighting so much already.

When Dr. K came in this morning, she brought both Matthew and Micah gifts. It's amazing to think that our dr. could take the time to pick out special gifts for her patients. Matthew got the "Polar Express" DVD and Micah got a crackly-sounding, teething ring-type bear. She also brought each of them a Duke University tobogan (is that spelled correctly?). We've enjoyed both boys' toys.

Matthew also enjoyed opening everyone's presents. The MeFine Foundation arranged for a Drs. office to "adopt" us. They out-did themselves. Once he started, he couldn't seem to stop! By the end of the gifts, we had a HUGE mountain of toys, clothes, boxes, tissue paper and gift wrap. What fun!

Of course, we haven't finished opening all the gifts. We've had so many of you think of us this season and send us gifts! This has to be our biggest Christmas ever! We're trying to take our time opening them all, so when Micah livens up a bit, he'll have some fun too. You are all so sweet to make our Christmas wonderful. Obviously, this Christmas hasn't been ideal. We're in a hospital room, Micah is very sick, we're not with extended family, it's my family's first Christmas without my dad, etc. BUT...the fact that so many of you have spent time thinking of us and actually going to the trouble to send gifts means SO much to us. We couldn't ask for more.

Thank you all so much for reminding us what Christmas is all about. Jesus set the example for us so long ago, and you have reminded us that we are to copy His sacrifical giving.

With joy and thanksgiving,
Susan

Saturday, December 24, 2005 1:38 PM CST

We've already had a pretty eventful day. Prayers are much needed.

Some of the results of Micah's colonoscopy biopsies came back this morning. Dr. K sent her fellow, Dr. Senoli, in to tell us that an ultra sound had been ordered. Apparently, the colonoscopy showed major damage. So far, none of the results have shown any sign of infection. This leaves us thinking of GVH (graft vs. host disease). The Dr. said that if it was GVH, then it was already in stage 4---there are only 4 stages.

Before we can be sure that it is GVH, though, we have to make sure that there's not a clot somewhere depriving the colon of oxygen. This is what the ultra sound was for. We still haven't gotten these results back. Dr. K says that we hope that this really is GVH, because a clot would be much harder to treat.

Thankfully, Dr. K thinks that the GVH is treatable. She's already ordered tons of meds for him. We've been told to expect Micah to become extremely irritable because several of the meds are steroids. The rest of the meds shouldn't have any negative side effects.

Matthew's cold is much better. He is able to come see us today, as long as he wears a mask. He's doing great with the mask so far and is in a great mood.

Thanks so much to everyone who's sent us gifts. You are all so precious to us. Hopefully, as soon as things calm down, I'll be able to report on all the Christmas stories we've already had. What an amazing Christmas!

Please keep Micah in your prayers this Christmas. He is a very sick little boy. We know God's wrapped Micah safely in His arms, and is taking perfect care of him.

Merry Christmas,
Susan

Thursday, December 22, 2005 6:42 PM CST

Dears Family and Friends,

Thank you agan for all of your prayers and words of encouragement. Susan and Travis are still having computer problems so I am updating for them tonight.

Micah is having some problems. He has had GI bleeding the past few days along with nausea and vomiting. He has not been able to eat today. They have scheduled a colonoscopy for tomorrow at 10:00AM with the plan to biopsy some areas looking for GVH (graft vs. host). They have to make sure that is what is wrong before they treat it. They did a sonogram today and suspect he may have an inflammed gallbladder. His tummy is swelling but not like last time. The rest of him is not swollen. Eyes are turning yellow and his bilirubin is up. The surgeons talked with them but plan to try anibiotics before considering surgery. Also they are watching him because he has an umbilical hernia. Susan said Dr. Kurtzburg does not seem very concerned about the hernia. In addition he has thrush.

They are trying to wean him from the Fentanyl and Methodone so they have been giving him Valium and smaller doses of Methodone today. This has kept him very sedated. He hasn't seemed to be in pain but his oxygern levels go down when they give him the Valium.

To top it off Matthew has a cold and bronchitis. Travis is at the apt. with Matthew and Susan in the hospital with Micah. They are separated which is hard on all of them.

We all know God is taking care of little Micah but it sure would be good to see him feeling a lot better and staying that way. Please pray the doctors will know how to treat him. Also that Susan and Travis will feel His loving arms and comfort and encouragement.

With love,
Linda

Tuesday, December 20, 2005 3:09 PM CST

We are still having computer problems, so this will be a short update.

Micah is still gradually improving. It's such a joy to see his eyes again! He is still very weak, but constantly trying to improve. We've been working on getting him sitting again, but he tires quickly. He's eating well. He has been vomiting, but this is normal for this stage in transplant.

Thanks so much for your prayers and encouragement. I have new pictures that I can't wait to show you. Hopefully, we'll get the computer fixed soon.

Talk to you later,
Susan

Sunday, December 18, 2005 7:05 PM CST

We're better!!! Who knows how tomorrow will be, but today Micah has made a vast improvement. He started out the morning at 7:00 am singing his heart out. He sang for about an hour and fell back to sleep. After waking up at noon, he was ready to start trying to sit up again. He hasn't been able to do that for quite some time.

My sister Karen and her fiance Mitchell came to visit today. We haven't seen them since early August, so this was a special occasion. I had been telling Matthew that they were coming all morning. When he saw them, he began giggling and literally squirmed out of my lap. He got so excited and he hasn't stopped since.

This afternoon, we loaded Micah up and all went walking in the hall. It was interesting to say the least. For about an hour, Micah was singing at the top of his lungs, Matthew was laughing and screaming while running down the hallway, Mitchell was running after him, Karen was snapping pictures, Travis was pushing the IV pole, and I was trying to keep up! Tonight, as a special treat, we had pizza delivered to the hospital. That pizza was amazing after not being allowed to have milk for so long. I couldn't seem to make myself stop.

Please keeep Micah in your prayers as this has been such a roller coaster ride. We are afraid of what a new day might bring. We're so thankful for our little singer today. Praise God for that little voice.

Love to all,
Susan

Saturday, December 17, 2005 8:21 PM CST

Dear Family and Friends,

Thank you so much for your prayers and for asking others to pray yesterday. Our prayers were answered as Micah is doing better today. Mostly today he was not using oxygen. He was sleeping most of the day but the doctors told them this is just part of the neurological "thing" he has been doing or it could be that he is just exhausted. They are pretty sure that all of this is a side effect of his medicines he was given for the GVH
(graft verses host) disease. Today the blood levels of the medicine were the same as if he had been given a dose today and he has not had a dose in 1 week. They told them it may take 1-2 weeks to completely clear his system. There is some minor kidney damage but they said in children this age it usually clears.

Dr. Missy the doctor who was on last night went and bought him 2 little Santa ourfits. They took lots of pictures today, even with him asleep Thank you Dr. Missy.

More good news. Micah is not allergic to milk as previously thought and Susan was taken off the no dairy products diet. Micah is nursing well and has been able to keep his milk down the past 2 days.

God is faithful. He is still taking care of our baby. Thank you Jesus.

Susan and Travis' computer is still down and it is difficult for her to get to the one on the floor that parents can use. I printed off the guestbook and have sent it to them so they can continue to be encouraged by your entries. Thank you for all of your encouragement.

Love,
Linda

Friday, December 16, 2005 6:56 PM CST

Dear Friends and Family,

Today has been a rough day for Micah, Susan, Travis and Matthew. As Allison shared his oxygen levels dropped last night and he even stopped breathing for about 30 seconds and started turning blue. About mid-morning, David (Susan's brother) checked with her and she told him Micah was stable. He was on blow by oxygen (which is an oxygen tube about an inch in diameter that blows over his face) and his oxygen levels were good.

They finally had the MRI done about 3:00 this afternoon after a lot of problems due to how things had been scheduled. Fortunately one of Micah's nurses stayed with them and was a big support for Susan and insisted the MRI get done and not be postponed again. The MRI did not show anything except that his brain has been exposed to steroids which it has because Micah is on steroids. The doctor said this was a good thing that they did not find anything.

Tonight when I talked with Susan Micah was sleeping with the blow by oxygen. This is due to the fact he was put under general anesthesia for the MRI. He has been sleeping alot today some of which may be from sedation but some is that he is exhausted from almost no sleep the last 3 days. His nostrils still flare though as he breathes which lets us know he is having to work at it. The repetitive motions with his hands have stopped.

The neurologist is not convinced that Micah was having seizures. He thinks it may be an irritation of the brain that has caused the repetitive movements and neurological problems. The doctors think all of this may be drug related
and the drugs are in the fluid he is retaining. One of the side effects of one of the meds he was on causes dark hair growth on the body and Micah has the hair starting to grow on his face. This shows the medicine is still in his body even though the med was discontinued the end of last week. His weight is down today though to 8.6kg.

Please continue to pray. Susan is exhausted from very little sleep these last 3 days. She stays with him because she is nursing him even though Travis would be very willing to stay. Your prayers and entries in the guest book are a great encouragement.

Love,
Linda (Susan's mother)

Friday, December 16, 2005 9:59 AM CST

Susan still can't get to the computer, so I'm just a friend of the family updating for her.

Micah's oxygen saturation dropped down to 86 percent several times last night sounding the pulse ox alarms. They did a chest x-ray at 2:00AM which looked good, so they don't think the cause is lung related but rather something neurological.

Micah has also been experiencing other concerning neurological symptoms: a neuro scream, hasn't slept for three nights, agitation, sniffing hands, moving head side to side, and possibly a seizure yesterday. Therefore, he had an emergency spinal tap at 7:10AM and is scheduled for an MRI at noon.

Together Praying!
Allison Tripp

Thursday, December 15, 2005 8:49 AM CST

Hi everyone! This is Susan's sister. She has asked me to update everyone. We found out from the doctor this morning that Micah will be having a spinal tap and a CT Scan done today.

Micah has been very irritable, cranky, and fussy the past couple of nights and has been extremely restless. He has continued using the repetitive motions such as smelling his hands. He's also been breathing irregularly throughout the night (although his lungs seem to be fine). In attempts to calm him, the nurses gave him Ativan and Fentanyl, but nothing really seemed to help.

All of this is giving the doctor some concerns that something may be wrong with Micah’s brain. We’re hoping and praying to find nothing. Please be praying with us during this time.

Thank you all so much for all of the prayers, concern, and encouragement. It means the world to all of us.

Wednesday, December 14, 2005 9:22 AM CST

Changes! Micah has begun to lose weight! Since Monday evening, he has lost over 2 lbs. He's losing it so well, that the dr. has taken him off of the edecrin for fear he could lose too much, too fast. This morning he weighed 9.1 kilos, 20 lbs. 2 oz. Much better than the 22lbs. 13oz. on Monday. Maybe soon, he can fit back into his clothes!

When the dr. looked at a blood smear under the microscope, he said there were definitely fewer damaged red cells. This is great news, as (according to his theory) this is what's causing all of Micah's problems. Vocabulary lesson: Schistocites: damaged red blood cells. The dr. was throwing this word around yesterday and no one knew what it meant. Our nurses weren't even sure. Finally, my mom and sister, Karen, found it on the internet.

Micah's albumin is up to 3.1 today. This is the highest it's been in a LONG time. He's been getting infusions repeatedly. Hopefully, we are seeing a permanent turn for the better.

Micah's cyclosporine and FK506 levels are still high. These are the meds that the dr. thinks have caused the schistocites. Micah's been off of both of these since Saturday. Both meds should be completely out of his system by now. The cyclosporine isn't too high and should be further down today, but the FK506 was still at a fairly high level yesterday. For some reason, his liver isn't filtering them out well. So far, though, all of his liver enzymes look good. Hopefully, no problems will result from this.

Yesterday, he received his weekly IVIG (antibodies) and his monthly pentamidine (med for pneumonia). Micah became very restless before I realized that he'd gotten the pentamidine. Thankfully, our nurse realized he was experiencing some side effects and helped him out with some tylenol. After that, he rested most of the day.

However...he did not rest well last night. At about midnight, Micah became a little restless. I assumed he might be hungry and tried to nurse him. He wasn't very happy with this and began panting. He started breathing so fast (registering on the moniter at 120 when normal is 30-45) that I put him down to try and calm him. In order to calm himself, he began sniffing his hands. It was really cute...at first. He kept sniffing each hand back and forth until about 2:30am. This is when I called the nurse in to see if he'd gotten any medicine that might cause a restless side effect again. Nope, none of his meds cause this. The nurse went and asked other nurses and no one could figure out why he was doing this. He kept this up throughout the night. Every time I woke up, Micah was still lying there, sniffing his hands. I even sniffed his hand a few times, but smelled nothing. Weird. Thankfully, he's resting now.

We haven't seen the dr. yet today. I'll try and add what he's says on after he comes in.

Your prayers are so appreciated. We have had some pretty unsettling times lately, but the knowledge of so many prayers being lifted up for Micah gave us confidence. Thank you.

Love to all,
Susan

Monday, December 12, 2005 8:21 PM CST

Not too many changes. We still don't know what's wrong. Micah is the biggest he's been yet, weighing in at 10.3 kilos, 22lbs. 13oz. He is no longer responding to lasix. He's been put on a dopamine drip and edecrin, but doesn't seem to be responding to those either. He's so big now that he cries when we have to change his diaper, because lifting his legs hurts. He would rather sit in one position in the bed all day than be picked up or held. His attitude is better, though. Tonight, he began giving us little smiles. They weren't his big, happy smiles, but we'll take what we can get!

We are still hoping that as the drugs gradually leave his system that Micah will be able to gradually get better. The dr. said that he wasn't sure, but he thought it was possible that today's smear showed a few less damaged cells. Of course, we aren't getting our hopes up yet. There have been so many disappointments, we'd rather celebrate when we're sure he's showing signs of getting better. I asked the dr. today if there was something else we could use to help him lose the fluid (since the edecrin isn't working well). He said the edecrin was the strongest we could use, and that we were out of options. "Out of options" was a hard phrase to hear. The only thing left for us to do now for his weight is to find out the problem and solve it. Easier said than done. At least we have a hope that this whole thing is drug related. It would be harder if the drs. were out of guesses.

I asked the dr. how serious Micah is when he came in this evening. He said that Micah is very serious, however, it's a good sign that all of his vitals are good. In order to explain how serious he thought Micah is, he said "Micah's the 1st or 2nd patient I look at every morning, and the last patient I look at at night." Please keep praying.

Our past 2 nurses have said that they are surprised at how well Micah's vitals are looking. They said that usually when children are this swollen, they are on oxygen by now. Your prayers are working. So far, Micah hasn't had any trouble breathing. He still has a good ways to go, though, so please keep them coming. We've been told to watch he moniters constantly. Tonight, we were told at what numbers to call a nurse, run out in the hall and grab someone, push the emergency button, etc.

Another theory for all of this, is that his blood pressure medicine, enalapril, is causing fluid retention. This is a very rare side effect, but still possible. He's been taken off of it for now. Many of his meds cause high blood pressure, so we've been struggling throughout this process to keep it down. He's done well all day today, but it is trying to creep up tonight. Pray with us that his blood pressure will stay under control.

Micah was allowed to nurse today. The first time I tried, he couldn't figure out where I was. Once he latched on, he began dry heaving. I waited a couple of hours before I tried again. When I did, though, his memory seemed to suddenly came back! Micah and I had such a sweet reunion for awhile. He didn't eat much, but thoroughly enjoyed the closeness. Throughout the day, he would want to nurse, vomit, and come back for more. I'm praying that his stomach will adjust quickly to having milk in it again, and he'll really be able to enjoy.

God is the source of our strength. He is giving us faith that all is well and Micah will grow healthy again soon.

In His love,
Susan

Saturday, December 10, 2005 7:13 PM CST

Today has been such a better day. We weren't sure how it was going to go, because the many lasix that Micah had been given through the night had produced nothing. He is still slow releasing his fluid, but is beginning to give us some.

The fun began when the pit crew from Hendrick Motor Sports came to visit the unit. They have a bone marrow program that helps families during transplant. They had done research on each family before they came, and already knew quite a bit about our family. We had been told that they brought gifts, but assumed they were little souvenir type things for the children. We were surprised when they brought 2 trash bag FULL of wrapped gifts for our family. Apparently, each member of the crew adopts a family and bought our Christmas. Matthew had a blast opening his gifts, and played with the toys throughout the rest of the day. I opened Micah's gifts for him, but he made sure that he was the one that got to play with them! This little guy that hasn't been able to do anything but lay down for the past 2 weeks, suddenly had energy to reach for his toys. Actually, the first time I helped him sit up he vomited, and he got very pale for several minutes. But, after resting for a few minutes, he was ready to go! He's been so much fun all day. He hasn't smiled yet, but we can see it in his eyes.

The crew also brought Travis and I gifts. I've been complaining all week about not being able to eat anything with milk in it. I think I'm going through withdrawel from chocolate! When I opened my gift, I found 4 boxes of Jelly Belly's!! I won't be going without sweets anymore! They also gave Travis and me a gift card to blockbuster and wal-mart.

Micah has been much more alert throughout the day. He's enjoyed playing with his new toys and watching Matthew play with his. He still can't really move well, because he's so heavy. Hopefully soon he'll be able to drop those pounds and really have fun. He has made us a little nervous again today with his heart rate trying to drop. The drs. say that this is because of all the extra weight on his chest.

We have a different attending dr. this week. Dr. Martin is his name and he has a new theory on what might be wrong with Micah. Apparently, Micah's red cells have been showing up a little damaged when examined under a microscope. Dr. Martin thinks that this could be because of the drug used to prevent graft vs. host disease(cyclosporine). So, today Micah was taken off the cyclosporine and put on cellcept. He is hoping that the combination of cellcept and steroids will prevent gvh, but not cause damage to his cells. If this doesn't begin to take care of his problem soon, Micah will have to be put on a machine that filters out all of his damaged plasma. It has a name, but I have no idea how to spell it! Obviously, we don't want to have to do this, so it will be much better if this problem is drug related. If this is not taken care of, Micah could begin to have problems with his kidneys.

Micah will not be allowed to eat tomorrow, like I had been told yesterday. Dr. Martin wants him to wait until Monday to make sure that his stomach doesn't become irritated. Apparently, his new drug (cellcept) can cause stomach irritation, so we want to be able to tell if something is causing his stomach to be upset.

Please pray with us that all of this was actually drug-related and can be easily fixed. We are so ready to go home and play with our active Micah again.

THANKS HENDRICK MOTOR SPORTS FOR OUR FUN DAY!

Susan

Friday, December 9, 2005 8:38 PM CST

Today was little stressful. Micah had to receive platelets, but not blood in the early morning hours to prepare for surgery. He also received an infusion because his fibrinogen was low again. Micah woke up hungry four hours before his endoscopy was scheduled. Thankfully, he was a little easier to distract than Monday night. We were rolled over to the CHC a little before noon and he went into surgery at 12:15, right on time.

Micah was supposed to receive a colonoscopy. After being in the operating room for about 45 minutes a nurse came out and asked permission to also do an endoscopy. The dr. had not seen anything at all wrong with Micah's colon, and wanted to cover all the bases. Of course, we gave our consent and waited for another hour before Micah was put in recovery. The surgeon came to talk with us and showed us pictures that he took of Micah's colon, esophagus, and stomach. He couldn't find anything wrong with any of it.

This is great news. However, we still don't know what's wrong with little Micah. It was a surprise that the surgeon couldn't find any inflammation in Micah's colon, because the CT scan had showed there was inflammation. The surgeon took several biopsies of the colon, but we won't get results for several days. This has caused quite a bit of bleeding in his diaper. It should go away soon if we can keep his platelets at good levels. Our hope is that the reason the dr. couldn't find any problems means that the antibiotics and no-food are working. Micah will remain on only pedialyte for another 24 hours. His white count has jumped from 21 to 14 today, so we're hoping his insides are healing. We will try formula Sunday to see if there is any aggravation caused from something on his stomach. Hopefully, by then he will be on his way to recovery and eating. There is a chance, though, that something could actually be wrong with his small intestine. There's very few ways to look at the small intestine, and those ways are limited.

It's getting harder and harder watching Micah suffer and constantly hearing the drs. say they don't know what's going on. We have been told that they will tell us when it's time to worry, but how can they know if they don't know what's wrong? Micah is six months old and should be active, babbling, and trying new foods. Unfortunately, all he can do now is lay there. He's so big today that we couldn't fit in any clothes on him. All he's worn today is a diaper and a blanket. I miss his smile so much. I pray God will allow Micah to be his smiley self again.

All Micah's done today is sleep. He gave us a little scare this evening when his moniters starting saying that he was experiencing a little apnea. Apparently, the drugs that were used to sedate Micah caused him to rest too well. His heart rate dropped much lower than normal and he would stop breathing periodically. Thankfully, all we had to do was wake him up a little to get him breathing again. Still, this left me a little frazzled.

After saying all of that, I know God's hand is on Micah. He has an amazing plan for his life and I am honored to be a part of it. Thank you so much for you prayers and encouragement in the guest book. Your words bring so much strength to us.

We love you,
Susan

Thursday, December 8, 2005 8:12 PM CST

Well, the drs. thought they had it figured out when they took Micah off breastmilk and said he was allergic to cow's milk. Tues. night, Micah slept much better. He was up alot drinking pedialyte, but only had to have fentanyl once. This was such an improvement that the drs. decided to let Micah start having some diluted formula. The formula is called neocate and, apparently, it is impossible to be allergic to it. Unfortunately, Micah didn't tolerate it well. He began vomiting it yesterday evening. We kept giving it to him, thinking that it was probably his stomach getting used to "food" again. However, about 12:30, Micah woke up in terrible pain. He ended up having to have fentanyl about every hour and a half last night. Around 5a.m., I decided he'd had enough formula and put him back on pedialyte. Since then, he has had no stomach cramps. I'm hoping this means that he is not allergic to milk and that a little more bowel rest will help his colon to heal from whatever infection has set in.

Because Micah's weight is rapidly climbing again (over 19 lbs.), because of his pain, because his white count is over 21 again, and because everyone's pretty clueless as to what is wrong...the drs. have decided on doing an endoscopy tomorrow. There's no guarantee that they'll find what's wrong, but I think we are running out of tests to do. Micah will have to go NPO (without food or drink) beginning at 6a.m. He will be taken to surgery around noon. (Pray for my sanity)

Please keep Micah in your prayers through this. The drs. have said that the risks are a little higher because 1. Micah's a transplant patient and 2. Micah already has inflammation. Micah will be receiving platelets tonight because he only had 67,000. This is actually considered a good number for him usually, but his perimeters have been increased because of the surgery. He will also be receiving blood because his hemoglobin was 9.9. This is also usually considered a good number. His fibrinogen (another clotting factor) has been low several times within the past few weeks. He will be checked for this at 2a.m. and if it is low, he will receive an infusion.

It's hard thinking of Micah going through this. There are so many possible complications. However, we've been told they rarely happen. We know Micah is safe in our Father's hands, though, and nothing escapes His plan.

I almost forgot...Micah has become a whiz at the bottle feeding! He LOVES drinking his pedialyte. It's definitely nice not to have to use the syringe anymore.

Well, that's about all the news for now. I'll let you know how it goes. Thanks for keeping up with us.

We love you all,
Susan

Tuesday, December 6, 2005 9:11 PM CST

HAPPY "HALF-BIRTHDAY" TO MICAH!! Today our precious Micah is six months old. Hard to believe! What amazing joy he's brought to our lives.

Today is T+54. It's hard to believe we've come this far already. Time sure flies.

Micah had an extremely hard night last night. Yesterday, the drs. put him on complete bowel rest. This is in hopes that his bowel simply needs time to heal from whatever it is that's causing the inflammation. His last meal was yesterday at 3:00. I knew last night would be challenging, but had NO idea what our little 6 month old was really capable of! Micah began "asking" to nurse at around 7:00. We tried distracting him in every way possible, but nothing seemed to work. The dr. last night even came in and tried to put him to sleep for me so Micah wouldn't be reminded of his hunger. She was able to settle him down some, but as soon as I came back into the room, all of her hard work came undone. (Still, have you ever heard of a dr. coming in and volunteering to put your child down to sleep for you? Dr. Missy Rayburg is her name. Amazing.)

Micah and I walked the halls for about an hour to no avail. His eyes were closed, but his body wouldn't stop moving.

By the end of the night, Micah had received ativan (a double dose), two doses of fentanyl and benadryl to try and put him to sleep. NONE worked! His eyes were mostly closed throughout the night, but his body WOULD NOT stay still and he was constantly moaning. He was SO hungry! He was trying to suck on everything.

Finally, some time in the night, the dr. decided to let Micah have one ounce of sterile water. Micah's never been one to drink from a bottle and had a hard time getting any of the water. Thankfully, our nurse suggested using a syringe. This really worked. We were able to get him to doze off around 1:50 a.m. But... then blood draws were due at 2 and woke him back up. After fighting him awhile longer, the dr. said he could have two ounces of pedialyte. Thank-you, Lord!! After having something in his little tummy, Micah was finally able to go to sleep at 3:30. Apparently, pedialyte doesn't stay in your tummy very long, though, because at 4:20, he was wanting more. Screaming, wiggling, grunting, moaning, etc. I called Travis at 6:30 (how sweet of me) and asked him to get out of bed and come rescue me. He did. While I was waiting on Travis and Matthew, the day drs. decided that Micah could have as much pedialyte as he wanted. This was great news, because Micah was able to fill his tummy up and conk out. He's slept most of the day, only waking up for more pedialyte.

Thankfully, I was able to go to the apartment and conk out myself for awhile. I came back to the hospital at around 2:30 this afternoon, just in time to talk with the GI drs. about what Micah's plan will be.

The GI people seem to think that Micah could possibly have developed an allergy to my breastmilk. This is a problem since Dr. K wants him on breastmilk. Apparently, though, breastmilk allergy is usually caused by an allergy to cow's milk. So, I have now been put on a no-dairy diet. Do you know how many things have dairy in them? EVERYTHING! It's worth the trouble, though, if we can fix Micah's problem. He hasn't been diagnosed with this yet, and we won't be able to know if this is the case for awhile. We will begin trying to come up with Micah's eating plan tomorrow. I think Micah will be started on a nondairy formula tomorrow. Hopefully, this can satisfy his still hungry tummy. After we watch him with the formula, they are talking about finding a way for me to breastfeed. I hope he is able to quickly get back to nursing. That boy LOVES to nurse. He doesn't understand why I'm not accomidating.

If it turns out that he is not allergic to dairy, we will have to put him through a colonoscopy and endoscopy to try and diagnose the problem. The drs. are trying to wait to do this, though, until some of the inflammation goes down. Apparently, there's more risk involved in an already inflamed colon.

Today, his white count was a little lower (18.3). This is hopefully a sign that the antibiotics are working. His albumin was lower, but not enough to require in infusion. He has begun swelling again, though, so he has been given an extra lasix.

What a supportive husband I have. Travis didn't get much sleep last night either, because Matthew woke him up several times. Thankfully, he still came up here (much earlier than he usually does) and took over for me. I left him here with both boys, which we try never to do. It's very hard keeping a 3 year old happy in a teeny room and juggle the needs of a sick baby. He did it, though. He even encouraged me to stay longer than I'd planned. I'm so thankful for him, and wouldn't want to do it without him.

Well, that's about all. I'll let you know more as we go.

Susan

Monday, December 5, 2005 9:33 AM CST

I apologize for not updating the past few days. I was getting to the point where nothing I wrote was positive, so...."If you can't say something nice, don't say nothin' at all!" I'm feeling a little better now.

Micah, however, is not. His pain seems to be constantly increasing. Last night, he received three fentanyl doses. The dr. was able to come in and hold him through one of his "pain attacks", but was unable to feel anything wrong in his stomach. She ordered an xray of his abdomen, but all came back normal. Right now, he's whimpering through his sleep. This is with the fentanyl dose he just got.

His white count was beginning to go down Sat., but now is back up to 22. This is discouraging because we thought the antibiotics were beginning to help him. He doesn't seem to have any symptoms of gvh, so the drs. have pretty much ruled that out. His white count shows that he probably has some type of infection. Since the dr. didn't feel anything wrong around his colon last night, she ordered a test for his pancrease. Those came back fine also.

I miss Micah's little personality so much. It's becoming harder and harder to watch him so lethargic. I also miss my big boy Matthew. He gets to come see us everyday, but it's not the same.

The dr. told us we could be staying here indefinitely. Until we know what's going on, and Micah greatly improves, we won't be discharged. This was pretty disappointing because I was hoping to spend Christmas together with our little family of four. To try and lift our spirits, Matthew, Travis, and I made a LONG construction paper chain yesterday. We've stretched it across the middle of the room, hanging from the ceiling. We also made a pretty interesting-looking Christmas tree out of construction paper. It's sitting on top of Micah's pulseox.

Thank you all so much for your prayers for Micah and for Anna. I still don't know the result of her test yet, but the prayers are so encouraging.

We love you all,
Susan

Thursday, December 1, 2005 8:09 PM CST

Today Micah had a CT scan and EEG done. The CT came back fine, only showing that he had an inflamed colon (which we already were pretty sure of from his symptoms). The EEG results are not in yet.

Micah's white count is slowly going lower. This evening it was down to 22. He is, however, struggling to keep a healthy temp. It keeps trying to creep up. It was borderline on what the unit considers a fever for a while, but is now coming down some.

He is very uncomfortable. The dr. was afraid that the methadone we had been using to wean him from the fentanyl (narcotic pain reliever) was actually causing some of his sleepiness. He decided to take him off of it completely, leaving him to suffer some withdrawel. This afternoon, Micah began shreaking with pain, so we ended up putting him back on the fentanyl. This feels like we are taking steps backwards, but worth it not to have to see him in so much pain.

Micah's weight was down to 7.88 kilos (17 lbs. 3 oz.) this morning. This means that Micah has lost almost 4 lbs. in a week. We were able to reduce his lasix to only twice a day. Hopefully soon, we will be able to just use it as needed. The dr. also discontinued his dopimine drip. Dopimine is usually used on patients with low blood pressure, and our dr. was afraid this was one of the reasons for Micah struggling with high blood pressure.

With all that seems to be unpleasant with Micah's situation, we are still very thankful. God has protected him through this time and will continue to do so. We are reminded not to take this for granted each time the alarms go off on the unit. Tonight, the alarms went off for a little 2 year old boy named Kaleb. He's in our old room and quit breathing for some time. I've been told that he is stable now. Please keep him in your prayers. Also, please pray that Micah will continue to have an "easy" transplant experience. Each time the alarms go off, we are reminded that with every moment, anything can change. Thankfully, we know Who to trust in, and Who is protecting our precious baby.

Father, please help us never to face such a horrifying experience. Keep Micah's breathing stable and make him strong and healthy, able to live to an old age.

I haven't updated lately on Matthew. He's such an amazing little man. Matthew has been so patient and cooperative through this whole ordeal. He's gotten very good at entertaining himself in our little hospital room and is a delight to MOST everyone he meets. :) He's become quite the little sponge, soaking up every bit of information available. He's so handsome. I miss being able to just sit around and be his mommy.

We miss everyone so much. The thought of home is so sweet. We are looking forward to being able to return with our healthy family of four.

Missing you,
Susan


****Urgent prayer request****
We have a dear sister in Christ who has just been told she could possibly have just a year left to live. Her name is Anna Compton and she has been battling tongue cancer. She is just 21 years old. After a grueling treatment of surgery and radiation, the cancer seems to have returned on her tongue, neck and lungs. The drs. plan to biopsy it tomorrow (Friday) after 12 sometime, just to make sure what they think they've seen is cancer. Please pray with us that the drs. are mistaken, God heals her tonight, etc. God can take that cancer away. Father, please allow the biopsy to come back completely normal. In Jesus' name.

Wednesday, November 30, 2005 11:00 PM CST

Today has been a little strange. This morning started out with Micah's blood pressure skyrocketing. We couldn't figure out why until the nurse realized that she had accidentally given him cyclosporine in place of lasix. Cyclosporine usually requires a 2 hour infusion and Micah received it in 20 minutes. Thankfully, Micah never developed any other side effects from the accident. We've been fighting his blood pressure all day, but it is now more under control.

Micah has also been very sleepy. He actually slept for most of the past 24 hours. His eyes have been red and glossy most of the day and he hasn't wanted to eat. Finally, tonight we realized that this was probably not just a sleepy baby. The dr. came in and spent some time with him, trying to really get a feel for what he was experiencing. She had some tests done on his blood. Tonight, at about 10:15, the nurse came in and told me that his white count had jumped to 30,000. We like it to stay around 10. This usually indicates some type of infection, so he has been put on 2 different antibiotics. We are also trying to get a urine sample for testing. So far, though, the only sign of Micah possibly having an infection is the white count and how sleepy he is. He hasn't developed even a low grade fever yet. Of course, who knows what to expect by morning.

The dr. has also ordered a CT scan and an EEG for in the morning. This is to make sure that there is no extra fluid lurking around that we don't know about.

Other than that, Micah received a blood transfusion this morning because his hemoglobin was down to 7.9. It's been 3 weeks since his last transfusion, so we are encouraged. His albumin was down a little, but still not low enough to require an albumin infusion. This is much better than the daily infusions he was requiring last week. His weight was also down a little today, too. He's so cute with his skinny little legs. It's strange seeing him back to such a little thing again.

Thank you for your prayers and encouragement. The guest book is such a source of strength for us.

With love,
Susan

Tuesday, November 29, 2005 9:21 PM CST

Well, we have finally had some improvement. All in one night Micah managed to lose a whole kilo! This is about 2 lbs. He is still pretty puffy, but on his way to feeling much better.

His albumin was at an acceptable level for the second day in a row. This is fantastic news, as low albumin has been blamed for his swelling.

His bloody diapers aren't so bloody anymore. Today's diapers were only specked with red.

We do have one concern. At 2 this morning, Micah's white count was around 10. This afternoon when they drew labs again, it had jumped to around 18. Such a high white count usually indicates infection. However, the drs. don't believe this is the case because Micah has no other signs of infection. He has no fever and all of the cultures they have taken are still negative. The drs. are blaming the jump on solumedral. This is the steroid Micah has been put on to decrease the inflammation that the possible GVH has caused. Apparently, in rare cases, solumedral can increase white cells. Please pray with us that it truly is the solumedral (or a lab error).

Our prayer is that Micah will easily get over whatever this problem is without having to resort to any more tests. The dr. has said that if he doesn't continue getting better, he will either have to have an endoscopy or a full body CT scan done. He would have to be sedated for both.

The dr. has told us to expect to stay in the hospital until at least Friday, possibly through to next week. As long as we see improvement, I don't think we'll mind. It was hard watching him suffer before he was admitted. I had gotten to where I couldn't sleep, because I was afraid I wouldn't see him if he quit breathing. It is hard, though. I think I tasted some freedom and am itching to get it back. During Oct. I never really minded staying in the hospital too much. But now, I'm completely bored!!

Right now Micah is sleeping peacefully. He hasn't been able to sleep well for about a week now, so we are very thankful.

Thanks for all your prayers. Keep them coming!!

In His love,
Susan

Monday, November 28, 2005 4:39 PM CST

Still no news. Micah's weight was up again today. He's gained back the weight that he lost over the weekend. The drs. have now put Micah on lasix 3 times a day and a dopamine drip. This is merely to treat his symptoms, though. We still don't know what his root problem is.

Micah's albumin was up some today, which is great news. If he can keep it at this level without getting infusions, he will be on his way to recovery. The drs. think his body is making the albumin, but that it is leaking out somewhere faster than he can make it. We don't know the cause of the leaking, but the leaking apparently is the cause of the swelling.

Thankfully, Micah's diapers are not as bloody as they had gotten over the weekend. This, hopefully, means that if there is inflammation in his intestines, it is beginning to calm down. It could also be a result of his platelet levels being kept higher than they have been.

Thank you all so much for your encouragement. It's nice to know there are so many prayers being prayed for Micah.

Love to all,
Susan

Friday, November 25, 2005 10:07 PM CST

Well, we're back in the hospital. The drs. seem to have no idea what Micah's problem is, and so they've decided to admit him for a few days to observe. He was a little bigger this morning when we went into clinic, weighing 20 lbs. 12 oz. and being 55inches around. He's gotten very clingy.

Tonight, when we got to our room, he suddenly broke out in a strange rash and his eyes swelled so much they were almost closed. Benedryl has helped, but we don't know the cause. He hadn't received any new meds at that point.

This afternoon he had an ultra sound done and an xray of his chest and abdomen. Both were normal, except for all the extra fluid.

Please keep Micah in your prayers. He doesn't feel good, crying for the past 3 hours nonstop. He's sleeping now thanks to the benedryl.

We know prayer works. We've seen it already. Please join with us in praying for wisdom for our drs. and health for Micah.

Thanks,
Susan

Wednesday, November 23, 2005 10:05 PM CST

HAPPY THANKSGIVING!!

We have so many things to be thankful for. Our most obvious blessings are that Micah is doing so well and that our little family has been able to stay together. It's been so nice having Travis with us this year. He's usually off work for Thanksgiving day, but having him with us before and after has been an added blessing.

We've also been blessed with so many gifts. First, the Montgomery's had planned on visiting us this week before we were told we couldn't have visitors. Even though it ended up that they couldn't come, the thought was so special to us. Next, a wonderful prayer warrior from Trinity Evangelical Free Church, Asuncion Mathew, cooked us dinner one night last week and also brought us some groceries this week. Then, our new friend Katie, from the best buddy program at Duke, made us dinner Monday night and also a pumkin pie for Thanksgiving. After that, my Aunt Kathy made us a red velvet cake and UPSed it to us. Finally, the MeFine Foundation brought us groceries to make Thanksgiving dinner. We didn't have to buy a thing! We were geared up to celebrate Thanksgiving by appreciating Micah's health, and God showered us with so many unnecessary gifts. Thank you everyone for loving us in this way. It's 11:00 on Wed. night and we just got finished preparing everthing for tomorrow. Everything is ready to just pop into the oven.

We do have to go to clinic, though. We are thankful for clinic, however, because Micah is still having some trouble. Today, he weighed in at 20 lbs. 11oz. He was a little over 16 lbs. two weeks ago. Micah's weight is a definite concern to the drs. as it can cause many complications. So far, he is doing well, and the drs. are working hard to keep it that way. He has now been moved to a daily lasix, twice daily diuril and many of his IV meds have been changed to try and lower the amount of fluid intake he has. The drs. are now beginning to all say that they doubt his main problem is gvh. They now think that it could be a complication with his hydrocortisone dosing. Hydrocortisone is a steroid used to replace the hormone cortisol that Micah's adrenal gland no longer produces well. This is not a side effect of the transplant, but a side effect of having ALD. If the correct dosing can be accomplished, Micah should not have any side effects to suffer. The drs. think that his body was sort of "shocked" by the changes in dosage that he went through during discharge. Instead of weaning his body down, Micah's hydrocortisone was immediately lowered and changed from IV to oral all in one day. His body did not take to this and so three days later he was changed back to IV. All these changes could have caused his body to react in a not-so-nice way. If this is the only problem, it is easily fixed. It still may be a slow recovery, because albumin is a slow growing protein, but it is fixable. Please pray with us that we can fix whatever is Micah's problem, and get his weight down to normal.

Hope everyone has a wonderful Thanksgiving!

Thank you, Father, for Your hedge of protection.

Happy Thanksgiving,
Susan

Monday, November 21, 2005 10:24 PM CST

WE FINALLY HAVE SOME NEW PICTURES UP!! Thanks to Allison we have been able to show you pictures from Micah's transplant day. Most of these were actually taken on transplant day--Oct. 13.

Micah has not improved much, but has not gotten any worse either. He is still pretty swollen, but the drs. are trying to figure out ways to make him more comfortable. Apparently, albumin is a slow growing protein. Micah did not need an infusion again today, meaning that he is probably making his own now. His albumin levels are still lower than normal, but should gradually increase now that the steroids are controlling his stomach irritation. The swelling will continue to gradually go down as the albumin level rises.

Tomorrow is our big clinic day. We are supposed to see Dr. Kurtzberg on Tuesdays. She is a very busy lady, making Tuesdays long somtimes. Tuesdays are also Micah's day to receive IVIG (antibodies). IVIG takes 2 hours to infuse. Plus, we are expecting for Micah to need a platelet transfusion tomorrow. His levels were low today. We are thankful, though, because it has been a week and a half since his last transfusion. This means he is beginning to make some now.

GOOD NEWS: I forgot to tell you last Friday. The test that tells who's cells Micah is growing came in. Micah is now growing 98 percent of MATTHEW'S cells!!! We've been told that 98 percent is about as good as you can get. Yeah!

Thank you, Father, for taking care of our little Micah. What an amazing Thanksgiving we are already enjoying.

Love,
Susan

Sunday, November 20, 2005 10:08 PM CST

Micah has had a better day today. Thanks so much for all your prayers. He is definitely not back to normal, but there has been obvious improvement. The swelling has continued to go down slowly with the diurel, and the bad diapers are becoming more normal. He even gave us a couple of small smiles tonight.

Please continue to pray for him. We miss his active personality so much.

Susan

Saturday, November 19, 2005 10:13 PM CST

This will probably be a quick update. It's already pretty late.

Micah has continued to have a difficult weekend. Thankfully, though, we have not been readmitted yet. So far, it looks like things are under control.

Micah is pretty miserable. He hasn't smiled in about 4 days now. He began swelling some Thurs. By yesterday, he was so big that when we lifted him, he stayed stiff. He was still pretty lethargic and constantly giving us ugly diapers.

The drs. watched him closely. Apparently, the cause of the swelling is low albumin. This is a protein made by the liver. They gave him some albumin and then 2 doses of lasix. By last night, he was still just as big, but his eyes were beginning to look a little better. We ended up staying in clinic for 9 hours. This didn't bother us much, though, because it was obviously necessary.

Today we spent 8 1/2 hours in clinic. He, again, was very swollen. His tummy measured 4 more cm from yesterday and his weight was up to 19 lbs. 11 oz. He's pretty miserable.

Please pray with us that the swelling will go down. He is now on oral diurel, plus he can have more lasix when we go into clinic if need be. Also, our dr. is still not completely convinced that it is gvh. Gvh is still our most probable diagnosis, but it could also be some type of infection. Please pray that all this will get sorted out and we can zone in on the best treatment. We've done tests to see if it's infection, but nothing has come back positive yet. The gvh test is a pretty awful test to do, and isn't always accurate. We've decided not to bother with the test since we can treat for it anyway.

Thanks so much for you prayers.

Susan

Thursday, November 17, 2005 10:21 PM CST

I found out that it was true that Joseph and Bailey had both passed away this week. Joseph was a beautiful little boy, with a sweet outgoing personality. He endured much suffering before his death. He had been inpatient at Duke for approximately 140 days. His kidneys failed him the week we were discharged. Last week, the drs. told his family that the dialysis had not worked and gave him 3-7 days to live. Please feel free to drop words of encouragement to his family. His website is www.caringbridge.org/visit/josephbrown.

Bailey was the other ALD child on the unit. He was an active, seemingly healthy little boy before his transplant. Matthew got to play with him in the waiting room during our pre-transplant workup for a few hours. He loved Micah, constantly saying how he reminded him of his baby sister. He, apparently, got VOD (veno occlusive disease). This can be a side effect of the chemo. Since a new drug has been made to treat it, many of the children can survive now. However, Bailey had one of the worst cases the drs. had seen. If you'd like to encourage Bailey's family, their address is www.caringbridge.org/nh/baileyslife

As for Micah...Micah has had a hard day. He has refused to nurse most of the day. He is swollen, now weighing 18 lbs. 11oz. He has slept most of the day, only waking up for short periods of time. He also has a gvh rash. This isn't much of a problem yet. We have been able to treat it with creams, and it seems to be responding. Micah is also shedding the top layer of his skin. This is a side effect of the busulfan, the first chemo drug he took. Right now, he looks as if he's been rolling in the dirt and I've refused to bathe him. The drs. warned us he would get a dirty tan, but I had no idea how dirty it would look! Now it is beginning to peel off. Right now, he looks like a backwords raccoon. His body is dark and his eyes have white circles around them. His neck is partially dark and partially white.

Seeing Micah like this makes us a little nervous. As you know, Micah is a very active little boy. He hasn't let any of this process get him down. It's scary seeing him so weak. The dr. I saw today said that how sleepy he is might be a side effect of the meds he is on. Please pray with us that it is merely a side effect of the drugs, and not a sign of something else.

It's also hard not being a little nervous when other children we've known have died this week. I look at my baby and pray for God's hedge of protection to surround him. So many things can happen to these children.

Thank you, Father, for such a smooth ride so far. Please continue to bring health to Micah's navel and marrow to his bones.

Love to all,
Susan

Wednesday, November 16, 2005 8:32 PM CST

Well, it's been a week since our last update. We have been staying in clinic for around 7-8 hours everyday lately and I haven't had the time to even pull up the page. So much has happened.

I'll start with last Friday. We were actually forgotten in an examination room. We waited for three hours before anyone realized we hadn't been seen yet. Then, we found out that Micah needed a blood transfusion. Blood transfusions take three hours to infuse, so we weren't too happy. It took an hour for us to be placed in a day-hospital room to receive the blood. Then, Micah had an interesting reaction to the transfusion, which made us even later getting out. Aaaaagh! Micah actually turned tomato red after his transfusion. He looked as if someone had actually painted his skin! He was also pretty swollen. His tummy looked like a baby Buddha. The nurse practitioner was a little alarmed, but ended up letting us go home anyway. We gave him benedryl as soon as we got home and he began losing his new color. Friday clinic visit was a total of 7 hours. The next morning we were a little concerned when one side of his face was still swollen. We rushed in only to end up waiting two hours before anyone even looked at him. Saturday ended up being a 7 1/2 hour day in clinic.

We went in Sunday, dreading another day of waiting. However, clinic on Sunday turned out to only last around 4 hours. We were very excited to experience some day light after we got out. Our excitement quickly subsided when Micah began vomiting. He had taken a very long, hard nap and began vomiting as soon as he woke up. All throughout Sunday night and Monday morning, Micah was vomiting, dry heaving, and having explosive diapers.

Monday, we rushed in only to be forgotten in a room again for four hours. The nurses were very sorry and apologized repeatedly. They told us that if we are ever waiting for longer than 30 minutes to come out and remind them of our presence. Micah had thankfully perked up and was trying to eat some. Once we were seen, the nurse practitioner thought that we might need to give Micah some fluids, just to make sure. We spent another three hours receiving Micah's fluids. Clinic on Monday lasted 8 hours. After the fluids, he got a sudden burst of energy. He was playing and singing. After only an hour, however, he stopped eating again. After another hour, Micah was back to his dry heaves and ugly diapers.

Tuesday: We got there at about 11:30. By this time, we knew Micah needed some fairly immediate attention. He had become extremely weak and very hard to wake up. When we walked in, we kept telling all the nurses we saw that he wasn't doing well. They put us in a day-hospital room pretty quickly. About every ten minutes, either Travis or I went out and reminded them that Micah was needing attention. Once Micah was seen, we were given plenty of attention. He had become lethargic, not even responding when he was picked up. All of his vitals looked good, though, so we weren't in any type of emergency. After watching him and giving him more IV fluids, our dr. concluded that he probably has graft vs. host of the stomach. This can be very serious. Our hope is that we've caught it before it is a huge problem. They are treating it with solumedrol, which is a steroid. It has definitely helped. Today went much better. Micah isn't back to himself yet, but MUCH better from yesterday. He actually gained a whole kilo over night! He now weighs 17 pounds, 15 ounces!

Please be in prayer for us as we fight this gvh. It was pretty scary seeing him like that. We hope we never have to again.

Unfortunately, we still don't have the results from the donor cells test. As soon as I find something out, I'll let you know.

Also, I'm working on getting some new pictures up. My plan was to do it last weekend, but it obviously didn't get done. We have so many I want to share. I hope we can fit them all on here. When I get them up, I'll let you know.

Thanks for your prayers,
Susan

Also, I just learned that two boys that were on the unit with us have died this week. Bailey, another ALD patient, died yesterday. And Joseph, the boy I told you about earlier, died this morning. I don't know any details yet. I just read about it on other websites. I'll let you know more as I find out. Please be in prayer for these families. They are precious people. Matthew played with both of these boys on several occasions. They were both older than Matthew, but still reached out to him. Travis and I are repeatedly reminded of how fragile life is, especially with these children.

Wednesday, November 9, 2005 10:11 PM CST

Just a quick update to say that Micah is still doing well. He's getting so chubby, weighing in at a little over 17 pounds. We were told to expect him to quit growing, but Mr. Micah likes to defy the odds.

We met with our Dr. for the first time in over a month yesterday. She said that Micah is definitely ahead of schedule. She knocked several of his meds down some. This makes things much easier for me! The nurses also drew blood to test to see that he engrafted Matthew's cells and not his own. This is very important. If he engrafted his own, we would have to start all over. We shouldn't be getting those test results back until sometime next week. The Dr. is pretty sure that he has engrafted Matthew's cells, because he has a rash.

Some rough news she gave us was that we must limit Micah's visitors. He is extremely vulnerable to any type of infection now. This is somewhat disappointing, as we were expecting guests for Thanksgiving. We truly appreciate everyone's understanding. We are definitely looking forward to when we can be more normal again.

Micah had to get a platelet transfusion today. This is farely normal, as he cannot produce them himself yet. We are expecting for him to need a blood transfusion tomorrow. We are also trying to wean him from the growth hormone that helps him grow white blood cells. He is doing so well, that they want to start "teaching" his body to make his new cells on its own. This causes his WBC to be much lower than it has been, which is a little unsettling for mom and dad. The drs. don't seem too worried, though. They actually look for them to drop. As soon as his WBC drops down to 2, they will give him more of the growth hormone. Right now, he is at 4.3. This actually isn't a bad count, but much lower than the 12 he had this past weekend.

We're very busy, but still so thankful to be together in the apartment. Matthew woke up a few mornings ago saying, "Mama, what are you doing here?!" What a joy it's been to be a little more stable for Matthew. He is such a trouper.

We miss everyone so much. Thank you all so much for your prayers and encouragement. For those asking about Mason, I put a link at the bottom of the page for you to keep up with him. He's actually doing so well now that they think he could be discharged by early next week!

Love to all,
Susan

Saturday, November 5, 2005 11:04 PM CST

We're at our apartment! It's taken me some time getting back to Micah's site. We've been pretty busy in our crash course on nursing. It seems completely crazy to me the amount of meds this poor child must endure. The IV meds aren't so bad. They take some preparing, but don't really bother Micah. However, the oral ones are awful! He has 7 oral meds that he must take twice daily, hydrocortisone must be taken every 6 hours, and 2 meds that are only once a day. I've been told that he is actually being discharged on very little meds.

It's a huge experience trying to get them all in him. He's become an accomplished spitter! I'll dot a little medicine in his mouth and he'll spray my face with it 5 minutes later! We've tried all the tricks, none really working. He is getting a little better at tolerating them in his mouth, but now his stomach seems to be rejecting them. Our hope is that tomorrow we will be able to make at least some of them IV. He can tolerate some of them, but by the time we are almost done giving them to him, up they come.

We had an interesting experience last night. Micah had been having some unsettling symptoms. We were beginning to fear that he may have caught Matthew's stomach bug from last week. By late last night, something definitely wasn't right. Micah was vomiting repeatedly, without being provoked by the oral meds. We called the fellow at the unit and she told us to come in. They did tons of tests, everything coming out fine. His hemoglobin had dropped down to 7.6, so they ordered some blood for him. After watching him for awhile (actually experiencing his vomiting), they were pretty sure that all of his symptoms were from adrenal insuffiency. This is from him having Addison's disease. He takes an increased dose of hydrocortisone to prevent any problems, but because he often vomits his meds, he was beginning to experience some problems.

By 3am, Micah had received his blood, gotten a huge IV dose of hydrocortisone, and was feeling much better.

Matthew was still awake at 3am. He's always been our little night owl. All the nurses were amazed at how energetic he was. When we got back to the apartment, though, he crashed. He's been very tired throughout today, but still didn't take a nap. By tonight, he was falling asleep as I brushed his teeth.

Travis and I are doing well, too. We are missing home, but are so thankful to finally have our family together again.

Please continue to pray for Micah. He is doing great, but still has quite a journey ahead of him. He's been waking up about every half hour tonight. It's probably experiencing some bone pain, which is easily taken care of with tylenol.

Also, thank you all for your prayers for Joseph. I will update you as I find things out. Now that we're not on the unit, it's a little harder to keep up with him. When I hear something, I'll let you know.

It's time for bed.
Miss everyone,
Susan

Friday, November 4, 2005 7:52 PM CST

Hello Everyone,
Susan asked me to update the web page and let everyone know how things are going. They are all at the apartment together now. Micah was discharged from the hospital on Wednesday. They are so excited to be home together even though it is not Anniston home. When I talked to Susan tonight you could hear an excited Matthew in the background.

The only problem is that Micah developed a fever last night along with vomiting and diarrhea. This is not good because his little body cannot fight infection well right now. They go to the clinic everyday right now so the doctors did all kinds of test. They don't have results yet, but they started him on an antibiotic to be safe. He also needed platelets and so they gave him some. Tomorrow he will receive a blood transfusion, all of which is part of this process. Susan thinks it may be the same virus that Matthew had last week. They tried to keep him away from Micah while he had it but... Please pray that this "bug" will easily go away and not be a catheter infection.

Basically they are doing well although very busy. They have to go to the clinic everyday, they have been learning and giving him his IV meds, his TPN, changing dressings and the like. I told her they will be good nurses by the time they are finished.

She also said to let you know that her Granddaddy Hood came home from the hospital today although he is still very weak. Thank you for your prayers.

Thank you for your prayers for Micah and his family and for the encouragement you send via the guestbook. It not only encourages them (although that is most important) it also encourages the rest of the family.

Love,
Linda Tamblyn

Tuesday, November 1, 2005 10:07 PM CST

Tomorrow's the big day! We have been told that we should be discharged by noon tomorrow. Thankfully, our infusion nurse will come and visit our apartment tomorrow afternoon, Thurs. morning and Thurs. afternoon. It's a little mind-boggling trying to learn how to use all of the IV pumps, draw labs, change dressings, etc.

Our new schedule, as far as we know, will be to basically live at Clinic. Micah will have to go to clinic 7 days a week for awhile. Apparently, there will be many days that clinic will last the entire day. We are thankful, though, to be at this stage of transplant. In some ways, it seems like it's taken forever to get here, and in others it seems like it was yesterday we were just beginning.

Micah suddenly developed a new rash tonight. The dr. looked at it and said that it shouldn't interfere with discharge as long as it continues to get better. He thinks that it could be from the IVIG that he got today or a very late reaction to the ATG. Either way, our prayer is that it quickly heals.

Please keep a little boy here in your prayers. His name is Joseph and he's been here for a very long time. He has been inpatient for over 100 days and still has not engrafted. Most children are looking forward to returning to their permanent homes by day 100. He also is struggling with kidney failure. He will unfortunately have to be on permanent dialysis. His mother has had to give over custody of her daughter in order to be with him here. This child has been sick and in extreme pain for so long. Joseph and his mother are in such an overwhelming situation. Pray for their endurance and that they can some how find some relief.

Also, granddaddy is still in the hospital. Thankfully, he was moved to a regular room this past weekend, but we are still not sure what to expect. He is very weak, but some home-cooking seems to be helping his mood.

Thank you all so much for your prayers. God is showing us so much grace. Micah is flying through transplant so far. We weren't expecting him to be so strong when we were discharged. In fact, Mr. Micah learned to sit up right in the middle of chemo! He has given us smiles at least some each day, even on his hardest. Oh, how God has richly blessed us. He truly is being strength to Micah's navel and marrow to Micah's bones!

We love you,
Susan

Saturday, October 29, 2005 9:01 PM CDT

Micah is still doing well. His WBC today was 10.9. We are very thankful for this because Friday he was up to 12.1 and so the drs. decided to half his growth hormone. They said that it might be possible for him to drop significantly after his growth hormone was halved. Yesterday he went down to 9, so 10.9 is much better.

We are very excited about being discharged. We now have a date for discharge. If all goes well, we will be able to go to our apartment on Wednesday. Yeah! I've been learning how to care for him throughout this week. It's a little scary thinking that he'll be depending on me to meet his needs. They've already taught me how to change his dressing, change the caps on his central line, and draw blood. This week, I should be learning how to give him IV meds and nutrition,and which oral meds should be taken at what time. Thankfully, we are working closely with a Duke infusion nurse. They will even be coming to the apartment several times to help us set things up and make sure we know what we're doing. We'll also be going to Clinic everyday, so hopefully everything will get done correctly.

We have had a challenge in the past couple of days. Apparently, Matthew has caught some sort of stomach bug. We have taken so many precautions and he still got sick! Unfortunately, I haven't been able to see Matthew or Travis since Thursday. Matthew never really acted sick, and never had a fever. However, we decided to keep him away just to be on the safe side. Please pray that he will hurry and get well. It's so hard being away from them. It's also hard getting things done without them. I have to schedule a time with volunteers just to take a shower. Of course, there are no volunteers on the weekends. Today, my wonderful nurse watched Micah several times, while I went and did some laundry. It's much harder doing this alone.

Micah is feeling much better. Now, the hard part is weaning him off of the fentanyl. He didn't take it very long, but it seems he is still having some withdrawel. To prevent this, he is now taking methodone. This is to help the transition from the fentanyl. He is still having some bone pain, but it seems only tylenol helps with that.

Micah has become quite the little charmer. Every time one of the nurses discovers that he is awake, we immediately have company. Micah has discovered that he like the ladies! What am I going to do when we hit the teenage years?!

Thanks for your prayers and encouragement. It's what keeps us going sometimes.

With love,
Susan

By the way, Mason is doing well. He is now back in his room. All is looking very promising.

Wednesday, October 26, 2005 4:22 PM CDT

Well, Micah is doing great. His WBC is 5.9 today and ANC is about 4400. Yesterday was the last of our three days we were waiting on to see if he had engrafted. So now, Micah is officially engrafted. We got more good news this morning. Our nurse came in after she'd gotten off rounds with the drs. and told us that it is very possible that we could be discharged sometime next week! This is a month ahead of schedule! Of course, we can't get our hopes up. Any complication could force us to remain inpatient longer. But, we are thankful to see the end coming.

He's had a rash for about 3 days now. He had it from head to toe and it looked a lot like a bad sunburn. We've treated it with creams and have it pretty much under control. The drs. think that it is a little graft vs. host. This is actually a fairly good sign. We won't be able to test Micah to see if the cells he has grown are Matthew's until he is 30 days post-transplant. We want them to be Matthew's cells or we'd have to start all over. The fact that Micah has a rash shows that he probably has Matthew's cells, because he is having a slight allergic reaction to them. Obviously, if they were his own, he wouldn't be allergic to them.

Granddaddy is still in the ICU. It's not looking very good right now. He hasn't eaten for a week and has a bad case of thrush. Right now, he is too weak for surgery and the surgery that might be possible is rarely done. Please pray that his drs. have wisdom in treating him. He is 82 years old, but we'd love to keep him around alot longer.

Thanks so much for all your prayers. You are all so special to us and we love reading the guest book. What a precious gift to give Micah as he gets older.

Love to all,
Susan

Sunday, October 23, 2005 12:22 AM CDT

Congratulations are in order for my sister! Karen got engaged last night to an amazing young man. I'm not sure when yet, but she will soon be known as Mrs. Mitchell Hudson. Apparently, she was so excited that she was awake at 7:00 this morning admiring the sparkle of her new ring.

We also have news about Granddaddy. After 3 days in the CVICU, he finally has a diagnosis. They did a special kind of CT scan yesterday that showed that he, in fact, does have a disecting aorta. Thankfully, it is not on the verge of bursting yet, so the drs. think they should be able to treat it with medicine, instead of surgery. They are also planning to check and see if he might have a gall stone. He is extremely weak and unable to eat. He also seems to have picked up some sort of virus that has made is throat very sore. Please keep him in your prayers.

Finally, it's Micah's turn. He is such a strong, busy little boy. The nurse woke me up this morning to tell me that he now has a WBC of 1.9! His ANC is 1216! He has to have an ANC of over 500 for three continuous days before the drs. consider him officially engrafted. This is day one. The down side to this is that it brings on intense pain. Poor Micah woke up at 3am with pain that just wouldn't go away. We ended up tripling his pain pump, and doubling the amount of pain medicine he receives when we press his pain button. He also got a mega-dose of tylenol. The tylenol helped, but didn't last long enough. It's effects wore off about 2 hours early. He couldn't have anymore tylenol until 10:30am, so the dr. ordered him some ativan. This immediately sedated him, however, he still woke up about every 10 minutes from pain in his bones. Finally, we were able to give him more tylenol and he has slept well throughout the day. Our nurse for the day told me that he would probably have this extreme pain for several days, so we may keep him mostly sedated throughout this time. I hate to see him sleep all day, but it's much better than watching him stiffen from the pain.

Today is also a special day for Travis. Today is his mother, Dolly's, birthday. He misses her very much, as she passed away 13 years ago. Please remember him and his sisters today. It's nice remembering her, but hard missing her.

Well, I'll go for now. I think I'm getting ready for a nap.

Missing everyone,
Susan

Friday, October 21, 2005 10:44 PM CDT

God is using this experience to totally change my outlook on life, people, Himself, family, my children, etc. Today I witnessed something I've never seen before and hope to never see again. So far, it hasn't turned out as bad as it could have been.

This morning began very well. Micah was alert and feeling much better. He was awake and playing for about 2 hours. The nurses couldn't seem to stay away from his charming little smile. He fell asleep around 11:30.

At noon, things got crazy. Thankfully, none of the craziness involved our little family. About a week and a half ago Matthew was playing and ended up pressing the CODE button. Alarms began sounding and people began running, all to find out that a 3 year old had been exploring. So when the alarms began sounding today my first thought was, "Uh-oh, I wonder who did it this time." I got up to see who it might have been and realized that this time things were not calming down. In the room next to us the staff were literally throwing furniture out the door to make room. Every nurse on the unit was running in and out. Then, I saw the parents of the child. They had been sent to watch from the window. Both crying, but trying desperately to stay calm. This lasted for about 10 minutes. They just stood there, not knowing if their baby would live or die.

I began to shake all over and tears filled my eyes. I prayed and prayed, quoting Scriptures to hopefully help little Mason. Mason survived that hurdle. He is now in PICU, still on a ventilator. That's all the info I can squeeze out of the nurses I've talked to.

I can't imagine being those parents. All day I've struggled with my own emotions from the experience, and yet, they are still fighting for his life.

I'm not worried. I know Who makes the plans, holds tomorrow, and Who's in control. Still, how do I place all the emotions I'm having? Reality hit me right in the stomach today. These children can be completely fine one minute and at death's door the next.

Thank you, God, for choosing me. I couldn't do this without You.

Susan

Friday, October 21, 2005 11:21 AM CDT

Granddaddy is still in the CVICU in Savannah. The drs. are still not sure what is wrong with him. They say that there is definitely something wrong, but can't figure out what it is yet. Please continue to pray that they will correctly diagnose him, and that they will be able to correct the problem. He is in quite a bit of pain, but still in good spirits.

Micah is doing much better. He is also still in quite a bit of pain, but we are able to keep that under control for the most part. We are very excited today because Micah's labs showed that his WBC=0.2. He still doesn't actually have a count yet, but this means that he now officially has some cell growth. We still don't know if the cells are Matthew's or Micah's yet, but it's a positive sign that engraftment has occured. Please pray that the cells growing are Matthew's cells. We don't want them to be Micah's. This would mean that the transplant was unsuccessful.

Micah has a little more energy today. He received both a platelet transfusion and blood transfusion today. The transfusions always seem to make him feel better. He is still sleeping alot, but this is a good sign that cells are growing.

The only problems we are having is that he has some jaundice and high blood pressure. The high blood pressure is caused from the meds that he is on, so this may continue to be problem throughout our time. They are trying to get it under control, but haven't found anything that consistently helps yet. The jaundice just occured in the past day or two. I'm not sure what caused it exactly, but the past chemo treatments and the meds he's on now both can cause problems in the liver. I'm waiting to speak to the dr. about it. We just started him on actogal to get his bilirubin down. Matthew took this when he struggled with jaundice in infancy. It seemed to help then, so maybe we can get Micah's under control with it. The only problem might be that it has to be taken by mouth, and so far, Micah hasn't been able to hold anything down.

Matthew has been having a ball. Everyone here really looks out for him. He loves all the attention. Right now, Travis is taking him to the park at our apartment complex. If he goes in the morning there usually aren't any other children.

I think that's about it for now. Thanks for the prayers.

Susan

Friday, October 21, 2005 11:21 AM CDT

Granddaddy is still in the CVICU in Savannah. The drs. are still not sure what is wrong with him. They say that there is definitely something wrong, but can't figure out what it is yet. Please continue to pray that they will correctly diagnose him, and that they will be able to correct the problem. He is in quite a bit of pain, but still in good spirits.

Micah is doing much better. He is also still in quite a bit of pain, but we are able to keep that under control for the most part. We are very excited today because Micah's labs showed that his WBC=0.2. He still doesn't actually have a count yet, but this means that he now officially has some cell growth. We still don't know if the cells are Matthew's or Micah's yet, but it's a positive sign that engraftment has occured. Please pray that the cells growing are Matthew's cells. We don't want them to be Micah's. This would mean that the transplant was unsuccessful.

Micah has a little more energy today. He received both a platelet transfusion and blood transfusion today. The transfusions always seem to make him feel better. He is still sleeping alot, but this is a good sign that cells are growing.

The only problems we are having is that he has some jaundice and high blood pressure. The high blood pressure is caused from the meds that he is on, so this may continue to be problem throughout our time. They are trying to get it under control, but haven't found anything that consistently helps yet. The jaundice just occured in the past day or two. I'm not sure what caused it exactly, but the past chemo treatments and the meds he's on now both can cause problems in the liver. I'm waiting to speak to the dr. about it. We just started him on actogal to get his bilirubin down. Matthew took this when he struggled with jaundice in infancy. It seemed to help then, so maybe we can get Micah's under control with it. The only problem might be that it has to be taken by mouth, and so far, Micah hasn't been able to hold anything down.

Matthew has been having a ball. Everyone here really looks out for him. He loves all the attention. Right now, Travis is taking him to the park at our apartment complex. If he goes in the morning there usually aren't any other children.

I think that's about it for now. Thanks for the prayers.

Susan

Thursday, October 20, 2005 1:34 PM CDT

EMERGENCY PRAYER REQUEST:
My grandfather has just been flown to Savannah for treatment on his heart. The drs. think he could possibly have a disecting aorta. They are bringing in a specialist just in case he needs emergency surgery. He has been very weak these past months. Please pray that he will have the strength to endure another surgery if necessary.

Wednesday, October 19, 2005 3:50 PM CDT

Rough week so far. Yesterday was actually the worst we've had. Micah woke up at around 3am with a 102 degree fever. This brought on lots of lab work to see if an infection had started. The hope is that the fever came from him engrafting. Patients sometimes get flu-like symtoms when engraftment occurs. His feet and hands are showing some red spots on them. This is sometimes a sign of engraftment, but there is no guarantee. This morning's labs showed that there were 7 cells seen. It's still too early to tell what this means, but it's hopeful.

Yesterday also brought on the nastiness of mucositis. Mucositis is where all of the cells lining the nose, mouth, esophagus, stomach, intestines, etc. are dying. This produces extreme pain, sores and drainage. Micah woke up yesterday with no voice and a little trouble breathing. By about 11:00 yesterday morning, Micah was having major trouble breathing. Watching him struggle for air was pretty scary. The nurses had told me to expect some trouble so I waited some before telling them. Finally, I couldn't stand it any longer and called the nurse in. She listened to his lungs and decided to get the dr. By the time the drs. came in, he was in an almost constant gag and his chest was obviously working extremely hard to find air. This got the drs. into action and by the time Travis and Matthew got here around 1, Micah was breathing much easier. We had to hold Micah all day in order to keep his airways as open as possible, but we were more than willing to oblige. We spent most of the day suctioning his mouth, and we kept a hose to humidify his airways pointed at his face. The drs. put him on an emergency dose of 2 different steroids and also on 2 different antibiotics. All the while, his fever kept trying to climb. It's highest, though, only reached 103.

By last night, Micah was much better. His fever broke and he began to get his voice back. The only bad part to this was that he now has his days and nights mixed up. My great sleeper kept me up to 1:30am. He's been pretty grumpy today and we've had to increase his pain medication, but today's been an obvious improvement.

The dr. came in today and told me that his WBC is at 0.1. When I asked if that meant zero, he said that it usually actually meant 0.1. As long as it's Matthew's cells that are growing in Micah, this is fantastic news. We won't know, though, for maybe 30 days.

Well, that's all the news. We're all holding up pretty good considering we're stuck in a room the size of our bathroom back home. The staff here is wonderful and really strive to look after Micah as if he were there own child. Can't get much better than that.

We miss everyone and thanks again for the guest book.

Susan

Monday, October 17, 2005 11:09 AM CDT

A special HAPPY BIRTHDAY goes to my mother, Linda, today!! She'll probably get me for saying this, but she is 52 years old today. Please remember her today. She is such a strong lady, but it's days like today that she really misses my dad. He went HOME 3 months ago this past Friday.

Micah is not feeling very well anymore. He is vomiting frequently and is much weaker than last week. His cry has gone down to a mousey squeak. This is mostly due to becoming horse from the mucositis. His pain level is quickly rising. We were pushing the button on his pain medicine pump about every half hour last night. The nurses tell me the dr. will probably increase his dose or go ahead and put him on morphine. The dr. hasn't come in yet today.

He got his first platelet transfusion this morning. This went well. He will probably be getting these frequently during our time here. We were expecting to give him a blood transfusion also, but his hemoglobin went up from 8.1 to 8.2. He gets a transfusion at 8.

Thanks for keeping up with us. I'll try to update more later. I haven't had much free time to give more details.

Talk to you later,
Susan

Friday, October 14, 2005 3:22 PM CDT

Oh, how your encouraging words in the guest book pull us through sometimes. Yesterday was such an emotionally draining day, I wasn't sure how to even feel by last night. I turned on the computer and began reading the guest book. It's amazing how God can use words to renew physical strength. You are all so precious to us.

Yesterday went a little different than expected. It was EXTREMELY busy, but God was obviously in the whole thing. We had been told that there was a good possibility that the cord blood that we had saved from Matthew's birth was no longer any good. Our plan was to give Micah a bone marrow transplant using Matthew's marrow and then supplement with the cord blood if it turned out to be useable. Well, surprise, surprise! God made those cells good even without them being preserved correctly! The nurse stuck her head in our door at around 10:30 and said, "The lab just called and we're going to be using the cord blood." The plan quickly changed. Everything suddenly flew into overdrive. Matthew was supposed to be in pre-op by 11:30 to harvest his marrow. However, now that the cord blood had been thawed, it could only survive for a certain amount of time without being transplanted. So, the lab rushed the blood into our room and we immediately began transplanting Micah. We got permission to be at pre-op with Matthew at 12. All the while, Matthew was going nuts from hunger! He hadn't be able to eat anything since midnight Wed. night and had nothing to drink since 9 yesterday morning. So while Micah was being given his cord blood, Matthew was being entertained by anyone available. Thankfully, our child life specialist was available to shower Matthew with new toys.

At 12, Micah wasn't quite done with the cord blood. We decided to stay and just be a little late to pre-op. Thankfully, we finished around 12:30 and ran over to the Children's Health Center to start with Matthew. We made it by 1 and thankfully found out that the harvest had been pushed back until 2.

They let both Travis and me go into pre-op with Matthew. I think the highlight of the day was when they gave Matthew his "cocktail" that makes him relax before surgery. They said it would take about 10 minutes to take effect. At 10 minutes there was no sign that Matthew had taken anything. After 12 minutes, we asked Matthew how he felt. He stared ahead, began falling back and smiled the freakiest smile I've ever seen on him! From that point on, we had some pretty hilarious conversations with him. He would look at us and start laughing for no reason and look around the room like it was spinning. We had no problems getting him to put the gas mask on. This apparently can be a problem with some children. The precedure only took about 30-45 minutes and he was done. From there, Travis ran up to be with Micah as he started his bone marrow transplant and I stayed with Matthew in recovery.

Matthew took FOREVER to wake up. If you know Matthew, you know that he loves to sleep during the day. He was having the best sleep and I couldn't seem to wake him for anything. He finally woke up enough for them to discharge him and we were on our way to be with Micah. Unfortunately, they didn't give me a wheelchair for Matthew. I ended up having to carry him all the way from the CHC to our room in the hospital. My arms are still very sore. By the time I made it to the room, I could barely hold up little Micah! We finally finished all our transplants at around 5:30. Whew!

Micah is doing fairly well. The doctors are all pleased with how he is doing. He seems to be right where they want him. We have been told that pretty soon things will get much harder. The dr. on call told us to expect him to be on a Morphine drip by Monday. I guess I was in denial some, because I hadn't realized that he would be in that much pain. I knew it was painful, but not morphine painful.

Even though the worst isn't supposed to begin until Monday, Micah is already very unhappy. He gets so weak sometimes. His stomach is very upset and he vomits frequently. Today we started the Fentanyl. This is the infant form of Morphine. He's not on the drip yet, though. Our hopes are high that maybe his side effects will not be as bad as they could be. He went through ATG like a trouper. He didn't have any fevers or rashes with it. There was some vomiting, but apparently this is small compared to most children.

Thank you all so much for your prayers. I wish I could let you know how much you all mean to us, but there just aren't words.

I'll try to keep you updated. It's hard to find time because Micah likes to be held constantly.

With love,
Susan

Thursday, October 13, 2005 4:56 PM CDT

Praise be to God!!! Today was transplant day. God answered our prayers in that the cord blood was good. They found that there were live stem cells in it so it was infused about 12:00 pm. Micah tolerated it well except that his blood pressure went up. They are giving him medicine for this and it will be temporary. Matthew went to surgery about 2:00pm it sure was hard to keep him without food or liquids until then. He did well, has drank some apple juice now, and is asleep again. They were able to get it all from one place instead of two. Micah is currently recieving his brother's bone marrow.

Thank you for your prayers and please keep praying. They tell us the next two weeks will be when Micah is the sickest and in the most pain. Also please pray that Matthew's cells will ingraft into Micah with minimal complications and that Susan and Travis will be able to get some rest.

Susan will update as soon as she has time.

Linda and David ( I'm Susan's brother)

Thursday, October 13, 2005 4:56 PM CDT

Praise be to God!!! Today was transplant day. God answered our prayers in that the cord blood was good. They found that there were live stem cells in it so it was infused about 12:00 pm. Micah tolerated it well except that his blood pressure went up. They are giving him medicine for this and it will be temporary. Matthew went to surgery about 2:00pm it sure was hard to keep him without food or liquids until then. He did well, has drank some apple juice now, and is asleep again. They were able to get it all from one place instead of two. Micah is currently recieving his brother's bone marrow.

Thank you for your prayers and please keep praying. They tell us the next two weeks will be when Micah is the sickest and in the most pain. Also please pray that Matthew's cells will ingraft into Micah with minimal complications and that Susan and Travis will be able to get some rest.

Susan will update as soon as she has time.

Linda and David ( I'm Susan's brother)

Saturday, October 8, 2005 9:33 PM CDT

Never before has it been so clear to me that this experience of ours is a matter of survival. I find myself constantly quoting Prov. 3:8 to Micah, even whispering it in his ear when people are around. It is my prayer that God's Word will be marrow to Micah's bones while he doesn't have any of his own.

Before we came here my main prayer was that Micah would not have any bad side effects from the transplant. While this is still my prayer, I now realize that Micah is truly in a fight for his little life.

It's as if this unit is in another world. This is a place where children act as if they are 90 years old. I walk out of our room and see a boy about the age of 9 or 10 years who is so weak he shakes while trying to stay standed. Here, children are cheered for walking down a short hallway. I went to art with Matthew yesterday. The conversation went something like, "Joseph, are you coming to art tomorrow?" Joseph replied, "Maybe, if I feel up to it." How sad to see children so weak they can't even guarantee they'll feel like sitting in a chair and coloring.

It was hard hearing one of the doctors this week say to us, "We're giving him lethal doses here." Lethal? I have struggled with that word quite a bit.

Don't worry. We are still doing well. Micah is right where the doctors want him to be. He is still giving us smiles every now and then. They don't come as often as before, but that's mostly because the meds make him groggy. This week has definitely been a reality check, though. It's extra hard at night, when I suddenly am alone with my thoughts. This is when I find myself quoting as much Scripture as I can remember. I sometimes have a hard time falling to sleep, even though my eyes are red from lack of sleep.

Oh, how God has been my strength. I thank Him so much for Prov. 3:8. He's given me comfort in knowing that He will protect my baby, Micah. I know God has a purpose in having us go through this experience. I've already learned enough in this first week to last me a lifetime. What a gracious God we have!

I better go to bed. Sleep runs scarce around here.

Miss everyone so much,
Susan

Friday, October 7, 2005 6:00 PM CDT

Today went a little slower. Still very busy, but a little slower. We didn't have any chemo to do today, so it was much easier on mom (no problems with trying to feed him at certain times). We had one little adventure, though. Micah was sitting in Travis's lap, when Travis said, "Look at his arms. That's not right." It wasn't right. It turns out that Travis, the ever so observant dad that he is, was actually catching Micah having a seizure. We were able to get the seizure stopped before it ever really got bad. It was definitely enough to send our heads spinning, but the drs. weren't too impressed. They gave him a little Ativan and sent him floating. He was pretty high for about 45 min. and then slept for about 3 hours. This made time for me to go make buttons with both boys' pictures in them to wear. Travis is a proud papa, sporting his boys' buttons.

Well, things are beginning to get crazy again. I'll talk to you later.
Susan

Thursday, October 6, 2005 8:32 PM CDT

Hey everyone. Just a quick note to say everyone is doing well. Micah is exactly where the drs. want him. He had his first blood transfusion at 2a.m. this morning. We will be stopping the busulfan at 4 in the morning because his levels have shown that he has had enough. This leaves tomorrow as sort of a day of rest. Thank you all for the encouragement. I'll add more detail when I find the time.

Love to all,
Susan

Wednesday, October 5, 2005 8:02 PM CDT

Hello Everyone,

Susan asked me to let you know how things are going. She has had trouble today with her computer going off while she tried to journal. She was able to get the schedule on the site though for everyone.

Micah started chemotherapy early yesterday morning. She said that you can tell that he does not feel well and he is a little cranky and unusally clingy. He is not eating well anymore. He wants to nurse but then he will not keep nursing. They say this is because the chemo makes the taste of things change. They also told them he may not be eating anything by next week. He also has developed a diaper rash which the nurses have told them is due to the chemo. Susan said he did not have it this morning but by tonight he did. He cries every time his diaper is changed. His hemoglobin is down but still in the lower limits of normal for his age. The Dr. told them he may have to have a blood transfusion by the end of the week. She said this is because the medicines keep him from making new blood cells and since they have to draw blood to find out how he is doing it depletes the supply and so must be replaced.

Susan and Travis are very tired. They have had very little sleep and of course emotionally this is very tiring. Matthew took a nap this afternoon which may help. But then he cried when it was time for him and Travis to go back to the apt. Of course this is hard on all of them. At least though they have allowed Matthew to visit. Susan sounded much better this afternoon compared to the last 2 days. Travis sounds good also.

Please keep praying. So far Micah has not had any seizures that this first round can cause. Of course they are giving him Dilantin to prevent them. We are thankful it is working. He still has a good strong cry, I hear him almost every time I talk to them. I am thankful it is still a strong cry. Pray for Susan, Travis and Matthew also. Guestbook entries encourage them. God is faithful. We continue to trust Him. Romans 8:28 tells us "And we know that all things work together for good to those who love God, to those who are the called according to His purpose." Some way God is going to work all of this out for good.

Thanks for your prayers,
Linda T.

Sunday, October 2, 2005 1:27 PM CDT

Hello Everyone,
Thank you for the prayers and guestbook entries. These really help encourage Susan and Travis. Susan says that reading the guest book entries helps to increase their endurance level. Since they have not had computer access lately due to lack of a phone line I have been reading them the entries when I talk with her on her cell phone.

Prayers and entries become even more important this week. They are to be at the hospital at 6:00 AM in the morning. Surgery is scheduled for 7:30AM. Micah will have his central lines put in. For those of you who do not know what these are they are catheters which are inserted in major veins of the chest with the end extending out of the skin. They replace IV lines. Necessary and very helpful but also can be a source of infection to set in. One of his parents will be allowed to stay with him until he goes to sleep and then he will be taken to the OR. The other must wait in the waiting room or in their case with Matthew who is not allowed in the waiting room. The hospital said that if Matthew is still asleep (which is very possible since he normally sleeps late) they may make an exception and allow him in the waiting room. As any of you who have had a child have surgery, you know that this is a very stressful time for Mama and Daddy. After surgery Micah will be admitted to a room and Susan will stay with him. Travis and Matthew will be allowed to visit but Matthew's visits will have to be limited to very short visits. There is only supposed to be the caregiver (one of his parents) and another visitor in the room at any time. Matthew is the only child who be allowed to visit at all.

Tuesday starts chemotherapy. We all need your prayers as this can be very dangerous. One of the medicines in particular can cause the heart muscle to disintegrate. It only happens to about 1 in 10,000 patients. Also it is a time when Micah becomes very susceptible to any infection and they must be on guard for anyone who visits with any sign of any illness, even symptoms of allergies. However God is in control and like Susan reminded me the other day, Micah belongs to God. We have to trust Him to take care of Micah. Also pray for Matthew during this time. He is only 3 and it is hard for him to understand what is going on. He did not handle his parents being gone well when Micah was born and we pray things will go better this time. They have been talking with him and playing games to help him understand but are not sure how much he really understands.

Susan and Travis sound ok. They are homesick but seem to be handling it well. They seem to be hanging on to their faith in God and His care.

Thanks again for praying,
Linda T.

Wednesday, September 28, 2005 7:46 AM CDT

Good Morning Everyone,

Susan and Travis still do not have their phone line set up. But it is in the works. They have been very busy getting everything ready in the new apt and getting ready for next week. Micah is to be admitted Mon, Oct 3. He will have his central lines put in that day. Chemotherapy starts Tues.

Here is their address:
Apt 727
4225 Larchmont Road
Durham, NC 27707

Thank you for all of the help with furniture. There were so many offers. We all really appreciate it. Also thank you for your prayers and support. Please continue.

Until next time,
Linda T

Sunday, September 25, 2005 8:00 PM CDT

Susan asked me to let all of you know that she will update the website as soon as they get a phone line in the new apartment. She also wanted me to let everyone know that tomorrow,Mon. Sept 26 would have been her Daddy's 57th birthday. They sound really good. I could hear the boys in the background playing. Last weekend I was able to visit them and they all looked good also. We had a great time and I had a wonderful time spoiling grandbabies.
Thanks for all of your prayers and for the guestbook entries. They encourage all of us.
Until next time,
Linda T.

Thursday, September 22, 2005 9:50 PM CDT

Oh, how we LOVE the guestbook. Sometimes our days seem to be too overwhelming. Then we read your encouraging words and it seems a burden is lifted from our shoulders and we can breathe a little easier.

It seems now that the Ronald MacDonald House stuff may not be working out as easily as we'd hoped. We were at the place they store the furniture when our social worker called. We told her what we were doing and she immediately said, "Oh, no, I don't think you're going to be able to use that." Apparently, we can't use any upholstered furniture that has been stored. After furniture as been stored, spores that have grown in it will fly out everytime you sit on it. This could be fatal for Micah after his transplant. Kinda scary.

It was a little frustrating for us. It seems that even after so many education sessions, we still don't know enough to protect our precious Micah. I'm not sure how we are going to completely furnish the place, but God is still providing. Tom Brack and John McLeod came over today and brought some things they had collected for us. We now have dishes, pots/pans, a lamp, end table, towels, some sheets, and probably more that I haven't gone through yet. We ended up buying a mattress and box springs. Right now they are on the floor, but at least we know they're clean. Tom and John were so helpful. They even kept the boys so Travis could take me out for a quick scoop of Baskin Robins ice cream---some much needed time for us.

I had a pretty interesting experience today while I was trying to clean the dishes before putting them in the cabinets. Did you know that you can't use regular dishwashing liquid in the dish washer? I didn't. I hadn't brought any dishwasher detergent to the new apartment yet, but didn't want to waste time going back to get some. So, I thought I'd just put a dot of dish liquid in both sections of the dishwasher. I turned it on and left the room. I realized after some time that I wasn't hearing Matthew. This is usually a dangerous sign. I called out, "Matthew, what are you doing?" He replied, "Playing with bubbles." Bubbles? I walked into the kitchen to find bubbles EVERWHERE! Needless to say, we all spent quite a bit of time cleaning up my mess. Lesson learned!

Not much happened at the doctor today. Mostly all we did was learn about Addison's and get a prescription for Micah's hydracortizone.

Time for bed.

Talk to you later,
Susan

Wednesday, September 21, 2005 10:21 PM CDT

Well, it looks like God has done it again. We had a need and He is meeting it. I wrote in our last entry that we had need of furnishings for our new apartment. We have been so blessed by people getting in touch with us to help. We have some friends who may be coming tomorrow to help us move in. They have also collected quite a bit from their church. Tonight, we also got a call from someone who knew me when I was a little girl. She now lives in NC and knew someone who works at Ronald MacDonald House. Apparently, RMH might be able to furnish the apartment for us. How amazing is our God?! We should have more details on that tomorrow.

Yesterday, Micah went to the Center for Development and Learning with Dr. Escolar. It was so much fun. Micah had so many different kinds of specialists come in and play with him. Everyone that played with him or watched from behind the mirror all kept commenting on how advanced he is. What a proud mom I am! Dr. Escolar was a delight to talk with, and really seemed to genuinely care about her patients. She actually started crying telling me about some past patients. We'll be getting to see her every three months for the first year and once a year afer that.

Today, Matthew had the rest of his blood work drawn. We were somewhat nervous about it since last week was so traumatic. When we first got there, we had to take him into the room he had been in last week to put his EMLA cream on. EMLA cream numbs the area they stick the needle into a little. As soon as he saw the chair we had to sit in, he started screaming. This convinced the nurses that we were going to need to do things a little different. They brought in the child life specialist to work with him. She worked with him for about an hour and a half before any blood was drawn. When it was time to draw the blood, Priscilla (our favorite nurse from last week) let Travis hold Matthew chest to chest and she drew the blood from behind Travis. Matthew fussed some, but I'm pretty sure it was just because he was getting so much attention. He was a special boy. To draw his blood today, Matthew had five people all around him showering him with praise. We were all singing songs, blowing pinwheels, rubbing his back...you get the idea. We definitely didn't need to bring toys up here. Everywhere we go, Mr. Matthew is given a new surprise.

We had our consenting session tonight. It was a little tough, not so pleasant to hear all the possible side effects. We feel confident, though, that God has sent us here. We don't think there is anywhere better to be for what we have to go through.

Tomorrow is our meeting with the endocrinologist (how do you spell that?). We are going to him to find out how to deal with the Addison's disease. I'm looking forward to this because I've had trouble in the past finding anything about Addison's.

Thanks for the prayers. We are so encouraged by the guest book.
Love to all,
Susan

Monday, September 19, 2005 9:27 PM CDT

Whew! Today was a little overwhelming. We started out trying to find a new apartment. The sooner the better. The one we've been staying in has some major cleanliness issues; not a place Micah can come back to when he can't be exposed to germs. We found a new place, signed the lease and had the keys all before 1:00.

At 1:45 we were scheduled to have our education session and get a tour of the hospital. Instead, we had our meeting with Dr. Kurtzberg-which was supposed to be at 5. It's always exciting to get to talk with the doctor. She's known world-wide and, as everyone at Duke says, she knows everything. She's actually going to be in Singapore all next week. She went over all the tests that have come back in from last week. Everything looks great, except for two things.
1. Micah has a virus that showed up in his stool culture. This is not a bad virus, but unfortunately will postpone treatment a full week. We don't want anything flaring back up when he has no white blood cells to fight back with. This means that he won't get his central line put in until Oct. 3. He will be admitted into the hospital this same day and begin chemo on the 4th. This makes transplant day Oct. 13.
2. Somewhat unsettling knews: Micah already has Addison's disease. This usually shows up in ALD patients, but the youngest anyone's ever heard of it has been in a 15 month old. As far as Dr. Kurtzberg knows, Micah is the youngest known Addison's baby. This means Micah will have to begin taking hormone replacements. Thankfully we found this out before any bad consequences occurred.

As soon as I get the official new schedule, I'll be sure to post it. Tomorrow, we go to the Center for Development and Learning. Everyone tells me Dr. Escolar is wonderful. She is very thorough, so it will probably take most of the day. I'll let you know how it goes.

After our meeting with Dr. Kurtzberg, we began our education session. We went until 5:45 and decided to resume the rest on Wednesday. There's so much to learn, it sometimes seems impossible. What did get through our thick heads is that Micah's white blood cell count is going to be knocked down to zero, forcing us to keep him in almost complete isolation. Any visitors we have will have to be asked a series of questions. No one is allowed to come in contact with Micah if they, or anyone they've been around, has had any symptoms of any possible sickness or any vaccinations using live viruses within the past 72 hours. How is that possible? We may just have to ask everyone to gown up and wear masks and gloves before seeing him. I'm sure we'll learn more, but right now it seems impossible to keep him completely protected.

If anyone nearby has any old furniture, linens, kitchen stuff, vacuums/brooms, etc. they don't mind us borrowing, we are in need of it. We were told not to bring any with us to Duke because we would have a furnished apartment. Since we've had to move, however, none of this is provided. Our new apartment has floors, walls, and light bulbs.

We love and miss everyone,
Susan

Friday, September 16, 2005 10:14 PM CDT

Hello everyone this is Travis,
Sorry that it has taken so long to journal, but we have been extremely busy this week. On wednesday, Micah had his brainstem audio-evoked response and visual evoked reponse test done. He also had his EEG, a recording of the brain waves test, completed at the same time. On thursday, Micah had his dreaded MRI done. This was also the first time that he had to be sadated. It was very difficult to watch him fall asleep in my arms unnaturally. But we made it through. Friday was a very busy day. Micah still was a little drugged up, his eyes were a little puffy because of the chlora hydrate that they used to sedate him. The nerve conduction studies went really well, with little to no pain as he slept in my arms. This is basically a test of the nerves from the knee to the feet, because the leukodystrophies usually begin showing symptoms at the furthest point from the brain. He also had 2 heart studies done, an echocardiogram and an EKG. Everything looks fine so far. Thankfully, the first week is over. Maybe we can rest this weekend, especially Micah. Next week we'll have more entense tests preparing for Friday's central line surgery and the next Monday's hospital admission. Please pray for us especially this next coming week as we get closer to starting the transplant process.

We love and thank you all for your prayers and support.
In His love,
Travis
Make sure you look at the new pictures!

Tuesday, September 13, 2005 9:15 PM CDT

Today was very busy. We got it off to a bad start by waking up at 7, which just happened to be the time we had planned on leaving. Thankfully, we had planned to get there 30 minutes early. We made a wrong turn on the way, leading us back on the freeway, but still made it only 5 minutes late! I had plenty of practice rushing to make appointments when I was in college.

Once there, we waited 2 hours in the waiting room. This made us late for our next appointment, so our day had to be reorganized. We have a wonderful coordinator, and she was able to get things arranged so that we didn’t miss any appointments. We did end up eating lunch at 2, but at least we got some lunch.

Matthew actually had a pretty traumatic day. Because we are going to have to harvest Matthew’s bone marrow, he had to get tons of blood work done. They had to get around 20 tubes of blood on him. Because he had to give so much blood, 2 of his veins burst. They ended up getting some out of both arms and his hand. The nurse finally gave up and refused to take any more from him, so we’re going to have to get the rest done next week. Travis was a little upset about it because it was the first time he’s ever had to hold Matthew down. I was in the next room having to listen to my baby screaming, while getting Micah ready to have the same thing done (not the most enjoyable experience). Matthew was pretty scared from it all. When it was all over, he kept his arms crossed over his chest and wouldn’t let us put him down for about 3 hours. This changed only when he finally fell asleep. We spoke with our social worker about it, and she plans to get the child life specialist to work with him. The child life specialist is supposed to familiarize him with medical equipment by letting him play with some of it and explaining its function. Hopefully, this will keep him from having a fear of needles.

Micah did extremely well getting his blood drawn. We had a wonderful nurse named Priscilla. Priscilla sang and made all kinds of noises the whole time he was in her room. Before she stuck him, she held his little hands, bowed her head and prayed. Micah was so distracted he actually began to smile while the blood was being taken. What a blessing! Thank you, Lord, for Priscilla. When it was all over, Priscilla kept saying, “Oh, thank you, Jesus. Thank you, Jesus!” What a bright spot after Matthew’s experience. Micah was pretty tired after it. They said that according to his weight, the most blood he should have drawn was 30cc. They ended up having to take 35cc. This was the bare minimum and had to be approved. Hopefully they got enough and won’t have to have any more.

Micah had his first eye doctor appointment this afternoon. The doctor was impressed with his visual development and said that there was no neurological damage yet. There wasn’t supposed to be, but they aren’t used to testing ald babies this young. Actually, Micah will be the youngest ald baby ever transplanted. Maybe we’ll make the medical journals?!

Well, we’re pretty tired. I think I’ll start getting us to bed.

Susan

Monday, September 12, 2005 7:34 PM CDT

Today went pretty well. We were pleasantly surprised to find that everyone we came in contact with here at Duke was very nice. Everyone we had meetings with were all so giving and made sure we felt comfortable with everything. It was obvious these people work with hurting people everyday and they knew how to make things seem less scary.

We have been very impressed with our doctor, Dr. Kurtzberg. We were already impressed from phone and email conversations we’d had with her, but she was even better in person. She is very patient and caring in the way she deals with her families. I don’t know how she does it. She takes time to make sure we understand everything, answers questions, waits patiently while we try and think of new questions, and hasn’t left us waiting (yet). I’m sure this will continue. I’ve heard great things from past patients.

We are having one unpleasant problem. It looks as though Matthew’s cord blood may have been processed incorrectly. They tested one tube and it never grew any cells. Now they are testing another one, hoping the first was a mistake. When they spoke with Viacord (the company used to store the cord blood), Viacord said that the whole bag could have been stored wrong. Unfortunately, there’s no way to know if the rest of the blood is o.k. until two weeks after it is thawed--which happens on the day of transplant. Obviously, this is too late to use. As of right now, the plan is to have Matthew harvest some bone marrow and use it to supplement the cord blood. This is somewhat disappointing because cord blood is the best to use. Bone marrow has more disadvantages, but will work if the cord blood ends up being useless. I think the hardest part of this is that we have spent thousands saving this cord blood and it could be useless. Matthew will have to suffer through mild surgery because someone didn’t do their job correctly. Our prayer is that on Thursday, the results that come in will say that the cells in the cord blood are growing exactly as they are supposed to.

Tomorrow both boys will have lots of blood work drawn. Thankfully, Duke has given us EMLA to use, a cream that numbs the area before the needle sticks them. Then, they are scheduled for a nasal washing to check for any viruses. After that, Micah gets his Crying Vital Capacities checked. Boy, am I looking forward to that one! Afterward, we meet with our social worker and, then, Micah gets his eye exam. Sounds pretty hectic. I’ll let you know how everything goes.

Thanks for all the prayers and phone calls. The guest book is such an encouragement.

Love to all,
Susan

Saturday, September 10, 2005 9:30 PM CDT

Well, we are finally here! We’ve worked for so long to get everything in order it was beginning to seem as if it would never really come. In some ways we are thankful to go ahead and get started. We’ve had so much time to dread it. It’s almost a relief to be here.

God blessed us with a great trip. Other than the normal grumpiness a family gets from lack of sleep and riding in a car for two days, we are doing pretty well. Last night we stayed in our first bed and breakfast. It was a great experience. The couple that owned it were Christians and very gifted in hospitality. We got along with them so well, we ended up staying up until 1:30 a.m. The encouragement and fellowship we enjoyed was well worth the loss of sleep.

Since we haven’t had the chance to come here and visit ahead of time, we weren’t real sure what type of living conditions we might be getting into. Thankfully, God has blessed us in this area too. We don’t know where we’ll be living after these first two weeks, but for now things are pretty nice. The Ronald McDonald House was full, so Duke has agreed to pay for our first two weeks in an apartment. What a gift! The apartment is fully furnished with two bedrooms and two bathrooms. It’s much nicer than I imagined. Right now it still feels like a hotel, but will get easier once everything is unpacked.

Thanks so much everyone for all the prayers. They are definitely needed. Overall, we are handling things o.k. so far. Matthew is really enjoying having Daddy with us so much. I think Daddy is just as thankful. They’ve really begun to have some major man-time. I fear the teenage years. I might just get lost in all the testosterone! What a blessing to be mother to boys.

We love you all. Thanks for the encouragement in the guest book.

Susan

Thursday, September 8, 2005 2:44 PM CDT

Hi Everyone,

I am Linda Tamblyn, also known as Susan's Mama or as Matthew and Micah's MaMon. They are a very busy family today as tomorrow is the day they leave for Durham, N.C.
They are thankful to everyone who has made this time possible, to all of you who gave very generous donations, to the ones who gave time as well as financial help in setting up benefits in the Anniston area, in Susan's hometown of Swainsboro and the surrounding towns and in her sister Jeanne's home of Macon. Also to friends of her sister Karen in Savannah who gave. God has really been good to us. Actually the whole family is very thankful.

This has been a rough week for them. Susan has had mastitis for the 3rd or 4th time since Micah was born. Matthew has been sick also this week and of course there were all of the hundreds of things to do when you are leaving home for 6 months.

Susan has given me a schedule to share with everyone that will start Monday Sept 12, the beginning of evaluation.

Monday 9/12
9:30 AM Meet with the Nurse Practitioner. Both boys will be examined.
11:00 AM Meet with Dr. Kurtzberg to discuss the transplant.
12:45 PM Lunch
2:00 PM Meet with Insurance Representative


Tuesday 9/13
8:00 AM Micah has pre treatment blood work and Matthew has Donor labs drawn. Then there is a respiratory viral battery done which is a nasal washing.
10:00 AM Micah has a crying vital capacity done. (I don't think it will be too hard to get him to cry after the earlier part of this day)
11:00 AM Meet with the Social Worker
2:00 PM Eye Exam

Wednesday 9/14
8:30AM Evoke potential Study - brain stem and visual evoke response
10:30 EEG

Thursday 9/15
8:45 AM Micah has to be NPO (nothing to eat or drink for 4 hrs.) for a MRI. He will be sedated for this.

Friday 9/16
8:00 AM Nerve Conduction Studies
10:00 AM Forms for Heart Sudies
11:00 AM Echocardiogram and EKG (Sometime today he has to be NPO also but I am not sure when it starts)

Weekend they have to rest. I think they will need it.

Monday 9/19
1:45 PM Education Session with Nurse Coordinator
5:00 PM Meet with Dr. Kurtzberg

Tuesday 9/20
8:15 AM Developmental Evaluation

Wednesday 9/21
6:00 PM Consenting Session

Thursday 9/22
9:00 AM Appointment for pre-op screening and meet with anesthesia for central line placement.

Friday 9/23
OR Central line placement. Will have 2 lines a single lumen line and a double lumen line.

After this if there is a bed available and there is expected to be Micah will be admitted Monday 9/26. Please pray for them because this will be a hard day made even harder by the fact that it was Susan's Daddy's birthday.
Then Chemotherapy will begin on Tuesday 9/27 for 8 days.

Wednesday, 10/5
If more cells are needed than Matthew's umbilical cord supplied then Matthew will be scheduled for pre-op for bone marrow aspiration. Please pray this will not be needed.

Thursday 10/6 is tentative Transplant Day.

We appreciate all of your prayers. Please sign the guest book so Travis and Susan can be encouraged.

Linda

Sunday, September 4, 2005 10:34 PM CDT

God did it! We were told it couldn't be done, but nothing is impossible. God has provided us with the down payment that was required by Duke. Eight weeks ago, we were told that if we did not have $100,000 by the time of Micah's evaluation, that they would refuse treatment. We were able to talk them into extending that time, but we knew that the money would eventually still be needed.

Thanks to God's wonderful body of believers, the money has been provided. I spoke with three different fundraising groups when we found out about the down payment. All of them told me that, from their experience, it would be impossible to raise $100,000 in nine weeks. We would have to move his evaluation date back. With the guidance of the elders in our church, we decided not to use the fundraisers and trust God to provide the money through His people. Well, God did it--and with a week to spare!!

We have so many thank you's to send out. Our hearts are overwhelmed by everyone's generosity, hard work and support.

A special thanks goes to Hannah, Rebecca, Simon, Micah, James, Sarah, Jonathon, Laurel, and Anna Clare. These are the youth at Redeemer Baptist Church. They felt a burden for a family they did not know and have already raised $1200. They are living 1 Timothy 4:12. Thank you for being examples.

We have a schedule now for our first two weeks in N.C. This is the evaluation period. It's getting late now, though, so I'll put it up next time.

Until then,
Susan

Saturday, September 3, 2005 7:56 AM CDT

Hey Everyone,

Just wanted to wish Travis a HAPPY BIRTHDAY!

Today he is a WHOPPING 31 years old!!!

Love you, Trav!
Susan

Friday, August 26, 2005 9:55 PM CDT

We’ve had so much going on lately. Getting ready to leave home for six months can be quite a chore! Thankfully, some of the phone calls that were keeping me from accomplishing anything are beginning to calm down.

We had Micah’s dedication service last Sunday. It was a lot of fun having all the family together. With so many people in one place, there was lots of confusion (which Matthew just loved!). The boys were beautiful. Aunt Jeanne made Micah’s outfit. It was a handsome little white suit, with vest and bow tie. None of Sunday’s pictures really turned out very well, but I’ll try to get some so you can see Jeanne’s handy work. Big boy Matthew wore a little suit, provided by his Grandmother Fleming. They LOOKED so sweet together, however…..their actions were less than handsome. Micah was a normal baby, crying here and there, but nothing too distracting. Matthew, on the other hand, revealed to everyone in the congregation how “well trained” he is. He wanted to go down to the nursery and preceded to let everyone know how mad he was that he had to stay. Thankfully, the dedication part of the service was at the beginning. God used this time to catch my attention. I have been so busy preparing for the transplant; Matthew has had to pretty much fend for himself. Not only did he have the normal new baby experience, but he also had to deal with a mommy who was very distracted with moving details, financial panic, and the death of her father. I had been warned that he might act out. Here it was, right in front of everyone. Monday, I decided things had to change. We really focused on training this week, and much to my joy, Matthew has gone back to being his delightful little self. I have a new prayer now: that God will remind me to train consistently, no matter the circumstances. Matthew not only needs training, but longs for training.

We’ve been so blessed by so many people. Duke had told us that we had to pay $100,000 down before they would treat Micah. If we didn’t get the money, they would actually refuse to treat him. Obviously, we didn’t have that kind of money lying around. God is providing, though. We don’t have it all, but it’s on its way. So many people have donated and are working tirelessly to help us. How humbling it is to know that people we’ve never met are sacrificing time and money for our benefit. God has taught our family so much through this experience. If you have not received a thank you note from us, know that it is not from lack of thankfulness, but lack of time. Your gift has not been overlooked. Our hearts are overwhelmed by the sacrifices made for our family.

Some people have asked me to put an address down where donations can be made. Right now, the best place to send donations is our church. Any checks should be made out to Grace Fellowship, but please add Micah’s name to the “For” blank. The address is:
Grace Fellowship Community Church
P.O. Box 8042
Anniston, AL 36202

For those of you who are wondering what the plan of action is now:
We will be leaving September 9 for N.C. It’s approximately a 10 hour drive, so we’ll cut the trip into two parts. We think it’ll be easier on the boys that way. Hopefully, we will have a place to stay when we arrive Saturday night (9/10). We’re still not sure about where we are going to be living.

Our first appointment is Monday, September 12. We’re not sure exactly what each day holds, but this will begin our evaluation time. During the next two weeks, Micah will be tested for everything possible. This is to prevent bad reactions to the chemo.

Once the evaluation is complete and all looks well, Micah will begin his chemotherapy. He will be admitted into the hospital and will stay for approximately 2 months. Please pray for him during this time. It sounds extremely painful, plus he will be away from home and routine.

After the chemo is complete, he will have his transplant. This will only take one day, probably just a few hours. It actually is just like getting a blood transfusion.

After the transplant, we will wait until Micah’s white blood cell count reaches a certain level. When his WBC count is to a certain level, we get to become outpatient. All outpatient really means, though, is that we no longer sleep at the hospital. It sounds like almost all day every day will be spent with doctors. They say to expect our outpatient stay to last around 4 months.

At this point, we will be watching Micah’s white blood cell count constantly. Once they reach a certain level, we will be allowed to come back home to good ole Alabama. Of course, then, we will be in isolation for a certain amount of time. We will also be going back and forth to the doctor at least every other day in the beginning. We are looking forward to this time, though, because it means the end is drawing near. We will be home again and can hopefully get both boys back on a routine.

Well, that’s the plan for now. I’m sure it will change as we go. I’ll try to keep you posted.

Talk to you later,
Susan

Sunday, July 31, 2005 3:52 PM CDT

GOOD NEWS!!

We've been waiting for a very long time to see if we could use Matthew's cord blood to help Micah. We had saved it when he was born in hopes of using it to help any future children (of our's or my sisters' children) overcome ALD. Thursday, I called up to Duke to see if Matthew's HLA typing had come in yet. We had Micah's way back at the end of June, but the lab had gotten busy and hadn't been able to get to Matthew's. I really wasn't expecting for them to have it in, but I was wrong. The nurse pulled it right up. It took about 15 minutes for her to read, but when she finally called me back she said, "IT LOOKS LIKE MATTHEW'S A MATCH! IN FACT, I THINK HE'S A 6 OF 6 MATCH!" Of course, we are waiting for the physician to verify it, but surely she can't be too far off. Praise God from whom all blessings flow. The doctor had given us only a 25 percent chance that Matthew could be a match. In fact, she pretty much prepared us to hear that he wasn't. So, this is an amazing thrill for everyone in our family.

As long as everything goes well, our big boy Matthew will be able to say one day that he saved little Micah's life. Cool, huh?

The reason this is such good news is because it bumps our 90 percent success rate up to a 95. Because it's from a sibling, the blood should engraft easier into Micah. This prevents complications with the dreaded graft vs. host disease. It could still happen, but it lowers the risk.

Well, that's the good news right now. We've got lots of not-so-nice stuff going on, but I think I'll leave you with the good stuff.

Blessings flowing,
Susan

Sunday, July 17, 2005 9:10 PM CDT

The funeral went great. Daddy had told Mama exactly what he wanted done back in November. The gospel was shared and we even had an invitation. Everyone was so uplifting about how dedicated Daddy was to living for Christ.

So many stories have been shared with us since the funeral about the marks that Daddy has left on people's lives. What an honor it is to be the daughter of such an honorable man. I pray that when my time comes that my reputation will be as glorifying to God.

Everyone was so sensitive and compassionate about Daddy's death, while offering prayers and encouragement for Micah. Donations were made to Micah's treatment in lieu of flowers. We have been so humbled by everyone's desire to help take care of our family.

Please remember to keep Mama in your prayers. She's handled the whole thing so well, but she's also lost a very dear part of herself.

Make sure you look at the new picture. It's our last family photo with Daddy. We made it on July 3. I'm working on adding some more.

Thank you so much for all your support,
Susan

Friday, July 15, 2005 8:56 PM CDT

Thank you, Father! Daddy is finally free from suffering. God allowed him to go to Heaven Thursday, July 14, at 4:35 p.m. He was blessed with an easy death. What a blessing it was that we had been able to go home to see him so soon before he passed. I will always remember how he responded to Micah. There was no doubt that Daddy loved his children, even when he could barely communicate.

We had the viewing tonight. It went very well and we were able to see lots of old friends. Tomorrow is the funeral. It will be at Hawhammock Baptist Church in Swainsboro at 2:00.

Everyone seems to be handling it well. We are all relieved that his suffering has finally ended. Thank you all so much for your prayers.

We love you all,
Susan

Tuesday, July 5, 2005 5:33 PM CDT

Whew! My head is spinning! All this insurance stuff is complicated, aggravating, pointless, etc. It’s one of those things I am SO thankful for, and yet, do NOT want to ever have to deal with. We’ve had a little trouble with them lately because they do not want to pay for the entire costs of the transplant. We’ve tried SSI, Medicaid, Disability—all of which have turned us down (so far). I haven’t given up though. I’m planning on hounding these people until they help me somehow. Thankfully, they have all been very pleasant to speak with so far.

We were able to go down and visit my family in Georgia this past weekend. Travis was able to get Friday and Monday off of work, which made for a nice vacation. It was a great visit. Micah was able to meet his PaPa for the first time, along with his great-grandparents and great-Aunt Kathy. So many special memories were made. Of course, my mom and siblings were all there to make sure Matthew was good and rotten before we left and that Micah would no longer sleep without someone holding him—but “isn’t that what they’re there for?”

It’s amazing to me that the Lord has blessed my family enough, so that my grandparents could live long enough to meet my second child. It actually became quite difficult to get him out of their arms! It was also very special to me to watch my Aunt Kathy with Micah. She’s always been like a second mother to me and watching her with my two children is something I want to hold in my memory. What was completely amazing, though, was watching my dad. It seems like it’s been SO long since he was able to communicate well and respond like we know he wants to. The first two days were as expected with him. We’d show him Micah and he’d just lay there. The last two days, however, were completely unexpected. It was Sunday morning and my mom was holding Micah up for Daddy to see. He didn’t really respond, so she took Micah to me so he could go ahead and nurse. After a few minutes, though, Daddy started trying to speak. My sister, Karen, was in the room and asked him what he needed. He kept trying and was finally able to get out, “Ba-ba-ba-ba…” A little unsure, Karen said, “You mean the baby?” Daddy said, “Yeah!” Karen rushed in to tell me and we got Micah in there as fast as we could. We laid Micah in Daddy’s arms and told him to try and hold him. It wasn’t perfect, but Daddy was able to lay both arms down to receive his grandchild! He gave Micah a kiss on the head and then it was over. For the rest of the day, Daddy wasn’t able to communicate much more. The next exciting moment was Monday when it was time for goodbye. I put Micah up to Daddy’s face and told him we had to leave. Daddy slowly leaned forward and kissed Micah on the head. I asked him if he wanted to hold Micah, and even though Daddy couldn’t answer, he slowly lifted his arms. After a few minutes, he said his favorite phrase, “I love ya!” It was so amazing to see Daddy with Micah. Even though Daddy can’t tell us what he knows all the time, he was able to give us all an assurance that he knows and loves his grandson.

Hope everyone is doing well. We appreciate you all so much, and the guestbook entries are so calming. Thank you for you prayers and support. We’ll get some different pictures up soon. Keep watching for them.

In His love,
Susan

Monday, June 27, 2005 10:13 PM CDT

GOOD NEWS!!!!
My older sister, Jeanne, and her husband, Eric, just found out they are pregnant again! Their daughter, Elizabeth, will be a year old June 9, so they’ll get to be fairly close in age. The new little one is expected to arrive sometime around Feb. 20. Our family is being showered with little blessings! Pray with us that this little one will be healthy and free from ALD.

We also have some not-so-good news. We had been told back in April that our insurance would probably cover all of Micah’s medical costs. They couldn’t guarantee it, however, because he had not been born yet, the diagnosis had not been confirmed, and he had not been pre-certified. Well, today we were told that they will not cover it completely. There is actually quite a bit that they will not cover. My next step was to apply for SSI benefits. But when I applied, I found out that we don’t qualify financially. Tomorrow morning I’m going to try and apply for Medicaid. This won’t be as good as SSI because it’s hard to cross state boundaries with it, but the financial person at Duke said that it has been done. Our prayer is that we can qualify for Medicaid, so that finances won’t have to be such a concern while we are at Duke.

If anyone has had some experience in this area and has some ideas for me to look into, I’d love to hear them. Thanks.

I’ll be keeping in touch,
Susan

Wednesday, June 22, 2005 4:53 PM CDT

Well, we got the results of the confirmation test yesterday morning and, unfortunately, they confirmed that Micah does have ALD. Our next step now is to find a match for Micah and our prayer is that Matthew will be that match. The doctor has said he has a 25% chance of being a match. Right now, they are testing Micah’s cord blood to see what his HLA type is, and then we’ll see what Matthew’s is. We are also praying that they will be able to test Matthew’s cord blood instead of drawing the blood directly from him. Our pediatrician has said that it’s a fairly large amount of blood that’s needed.

I’ve been looking at my beautiful baby boy for about an hour now. He seems so perfect; it’s hard to imagine something so horrible could be wrong with him. My emotions want to reject the diagnosis and insist that everyone just act as if nothing’s happening. I wish it were that simple. Thinking of all that this year is going to involve is terrifying and yet, I know without a doubt that God has His perfect plan in mind. In fact, at the same time I’m wanting to reject the diagnosis, I’m also wanting to say thank-you to God for blessing us with the opportunity to glorify Him in such a special way.

It’s strange the things I think of when I think about what Micah’s journey will involve. Of course, I think about his safety and making sure he gets through the transplant o.k. But I also think about how hard it’s going to be to allow them to put him to sleep for all the tests before the transplant. Some of the tests are very painful (like the spinal tap) and I definitely don’t want him awake during it, but I can’t imagine letting someone sedate my child! I also think about how this could delay his development temporarily. You’d think that I’d just be thankful that the delays would only be temporary, but I don’t want them at all! And how do you continuously let someone give your child something that seemingly makes him sick (chemo)? I know I am going to want to fight against the chemo if it makes Micah sick. It just doesn’t seem natural.

Also, how is this going to affect Matthew? Today, we had to go get Micah’s blood drawn to test his bilirubin levels (jaundice). He, of course, was crying alot and this began to upset Matthew. Matthew finally grabbed the table Micah was lying on and said, “No, don’t touch baby! Don’t touch baby!” How do you explain to a three year old that making Micah sick is actually going to make him better?

I know all the answers to these questions; it’s just hard to convince my emotions of them sometimes. My God is sufficient for me. He will supply all my needs. He will give Travis, Matthew, Micah and me the strength to endure. I’m not just saying that either. I truly believe it. That’s what helps me to finally stop crying, stop having my pity party and start preparing my family for our six month “vacation”. God has blessed my life, my family so richly.

Someone said to me right before I had Micah, “How can you look forward to this? I’d be wanting him to stay right where he is for as long as I can.” Well, I’m just so happy to have him that all the problems don’t really compare. Yes, I sometimes fear how hard this next year might be, but not enough to wish him away. I had some people mention abortion to me after we got the results of the amniocentesis, but how can you give up your child so easily? In my mind, just because he was still in the womb didn’t change the fact that he was my baby and I had to take care of him. If I’d gotten the diagnosis a few years later, I wouldn’t have even thought of ending his life. No—this is my child, whom I love very much, and nothing or no one is going to harm him.

God planned for Micah to be here. He planned for Micah to be exactly who he is—sickness and all. He planned for him to have to endure a bone marrow transplant. I believe He planned for Micah to have a successful transplant and grow up normally. I am so thankful God has given us the option of transplant. So many ALD families haven’t had that option and have had to watch their sons deteriorate and die. God has shown us mercy, and the pity I temporarily feel for myself and my family is really sin. It’s when I am refusing to acknowledge that I know we are taken care of, and that God has already used this situation to bless us and glorify Himself.

Well, thank you for letting me be so open. We have received so much support from everyone that I wanted you all to know exactly what we were going through, and that you are so special to us. We are so thankful for your prayers and encouragement. It makes all the difference on those hard days.

Love you all,
Susan

Friday, June 17, 2005 10:37 PM CDT

Well, we have now been home a little over a week. Hospital stays definitely make you thankful for home. Even when you’re up every two hours throughout the night, it’s always nice to be able to crash into your own bed.

The past almost two weeks have been wonderful! We went into the hospital at 12 a.m. on June 6 and immediately started the meds for induction. Throughout the night all went smoothly, and the only struggle we really had was wondering how Matthew was doing spending the night away from us for the first time. (We later found out he’d stayed up most of the night, finally falling asleep from a middle-of-the-night car ride.) Around 8:30a.m. the doctor came in and broke my water and everything seemed to fall right into place from there. By 11:23 a.m. and after only 7 or 8 pushes, Mr. Micah Joshua was lying beautifully on my chest. He looks so much like his daddy and brother to me.

Recovery has also been great. My first delivery had been a difficult one and I was not looking forward to this one. However, God showed me mercy and has given me a fairly easy recovery. My biggest struggle this time has just been the lack of sleep from night feedings.

Micah is an excellent nurser. He loves to eat! Our pediatrician has been so surprised at his weight gain and made the comment that I must have cream instead of milk!

We are so thankful for all of your prayers. Please continue to pray as we are awaiting the results of Micah’s confirmation test. We are supposed to be getting the results any day now. We are also waiting for the results of Micah’s HLA typing. As soon as we get those results, Matthew will have his HLA typing done. Our prayer is that they are a match so that Matthew’s cord blood can be used in the transplant. The doctor has said that Matthew has a 25% chance of being a match for Micah.

You are all such a blessing to us and your prayers and comments in the guest book are such an encouragement. Oh, and make sure you check out the photo album. We’ve finally gotten some pictures put up. Thanks again to Allison!

Love you all,
Susan

Wednesday, June 8, 2005 8:43 PM CDT

Hi everyone,
This is MaMon, otherwise known as Susan’s Mama. We have exciting news to share. God blessed Susan with an easier delivery this time and a wonderful beautiful baby boy. Micah Joshua Fleming arrived Monday June 6, 2005 at 11:23 AM. He weighed 7 lbs. 5 oz. and is 201/2 inches long. When they called me they told me he looked just like Travis and Matthew. When his Aunt Karen e-mailed me pictures I thought he looked just like Matthew did when he was born. I took the pictures to the hospital for Susan’s grandparents to see them and her Granddaddy thought I had brought some pictures of Matthew at first. Now that I am here visiting them and have actually seen him I’m not so sure who he looks like except his nose is from his Daddy. Susan, Travis, Matthew and Micah came home this afternoon and are doing well. Pictures to follow as soon as possible.

Thursday, June 2, 2005 3:31 PM CDT

Friday, June 3, 2005 8:45 AM CDT
URGENT PRAYER REQUEST:
Marvin Hood, Susan's grandfather has had a heart attack this morning. Please pray that God will heal his heart. Right now they are trying to get him stable enough to send to Savannah. Also pray for the safety of the family as they prepare to travel to be with him.
***1:50 p.m.--Granddaddy is doing much better. He is now in a room in Savannah and is talking more like himself. His EKG is back to more normal levels and his heart has quit attacking. The plan right now is to keep him through the weekend and then do a cardiac cath. on Monday. The meds they used to get him stable thinned his blood out too much to do it today.

Thank you all so much for your prayers. Please continue to remember him. He's still got alot of fighting to do, but he's always been known as a fighter.
Love you all,
Susan

Hey everyone!
Well, we were hoping our next update would be saying that baby Micah had arrived. However, he apparently is enjoying his comfy stay with Mommy.

As of Wednesday the 1st, mom was dilated to a 2 and 75% effaced. All seems well with Micah, good heart rate. The problem may come with the size of his head. Big brother, Matthew, was born with a rather large noggin, and mom had a hard time delivering him. He was born with the help of forceps. In order to hopefully avoid this problem again, it looks like we may have to induce. According to an ultra sound done last week, his head is already a little large. Unless Mr. Micah decides to come sometime this weekend, we will go into the hospital at midnight on Monday morning and begin the induction.

Please pray for mom and baby that all goes smoothly with the labor and delivery. Our preference, of course, was to let things progress naturally. But it looks like we might have to help things along to prevent surgery. We would also appreciate your prayers for Dad and Matthew. Dad has been so supportive already and will probably be very tired by the end of this experience. Matthew is planning his first night away from Mommy and Daddy, and we, parents, are a little nervous.

Thank you all so much for your support. The encouragement you’ve shown us through the guestbook has been unbelievably uplifting. God’s used it to give us strength and keep us excited about His plan.

We love you all,
Susan

Saturday, May 21, 2005 10:41 PM CDT

Hey everyone! This is our first journal entry on our Micah webpage! We are so excited to have this option available to our family. A special thanks to Allison Tripp for informing us of caringbridge and for being so willing to set it up for us. Her encouragement through our experience with Micah has been priceless.

I think the best place to start would be to let everyone know Micah’s already detailed history. Sit tight, it might take awhile!

I’ll begin with 1997. It was actually much earlier than this, but I’ve got to start somewhere. This was the year my older cousin, Thomas, past away. It was mysterious. The doctors tried everything and still remained puzzled. A few months later, my dad decided it was time to get his mysterious symptoms seen about. After much testing and travel, he was finally diagnosed. It was adrenoleukodystrophy (ALD), a disease much like MS, but still very different. ALD is an enzyme deficiency that causes the white matter of the brain (myelin) to deteriorate. This can cause any number of problems: vision, hearing, speaking loss, immobility, eventually a vegetative state before death. In children, this usually progresses quickly, about 2 years from diagnosis. The adult onset form (AMN) usually progresses 8-10 years from diagnosis. From there, we were told that Thomas and his brothers Oscar and Jonathan also had this dreaded disease. (Oscar had past away many years earlier, with no diagnosis)

As you can imagine this was tragic for the family, but we were very thankful to have a diagnosis. When we asked how we could treat it, we were told it didn’t look very good. My dad had no options and Jonathan had only one. Jonathan was able to receive a bone marrow transplant, but was just given a 50% chance of success. Thankfully, he made it through and is, by the grace of God, mostly healthy. We are so thankful God took care of him.

So apparently, this thing was genetic. So what’s going to happen to my dad’s four children? Well, we were told we’d be fine. The unfortunate side is that all three of his daughters are automatic carriers. However, PRAISE THE LORD, our one brother is free and clear!

Now, I’ll skip to 2001. This is the year we got married. What sweet memories. God blessed us so much that year. In fact, about 6 months into our first year together, we found out we were going to have a little blessing. This was very exciting for both of our families. However, we all knew what could happen. We had a 50% chance of having a healthy child or a 50% chance of having an ALD child. A girl with the gene would only be a carrier, a boy would suffer the same sickness my father and cousins had suffered. Though this should have been very scary, it seemed God laid a certain amount of peace on us and each member of our family. We all knew that He would be glorified no matter what.

Turned out, at our sonogram appointment, we were going to have a boy. Matthew, we decided would be his name. It means “gift of God”. No matter what the result of our future tests, we had decided that he was our little gift from God and nothing could change that. (It’s also my father and grandfather’s name)

At about 20 weeks gestation, we went to have the test done to see if our little gift would have ALD or not. After waiting a LONG 6 weeks, the results were in. Our wonderful OB, who’d prayed with us through the whole process, brought me into his office and with a warm smile on his face, told me that we were going to have a healthy baby boy. Oh, the praises that went to Jesus that day! Our precious Matthew was born in July of 2002 and mesmerized the whole family. He became known as our little miracle.

Now, I’ll skip to this past September. This was when I found out I was pregnant again. Oops! God has wonderful ways of letting us know it’s time to have another baby! After we got over the shock, we were ecstatic. Now, Matthew would have someone to play with, and another baby in the house is always welcome. But, we knew the possibilities. So, we prayed and waited. However, this time our prayers were somewhat different than the time before. With Matthew, we prayed for a healthy child. This time, we prayed for a healthy child, but more importantly, that God would be glorified through our new little one. We knew God had a perfect plan already set out for it and we did not want to interfere whatsoever, even if this meant facing a horribly dreadful disease.

It was time to find out the baby’s gender in January. We were hoping for a girl, just so the process would be made somewhat easier. Even if a girl has the ALD gene, she is just a carrier. She’s not supposed to be effected as much. If we had a boy, we’d have to go through the testing and then the waiting again. But, fortunately, God has His plan and we trust Him completely in that. We were told that we were going to have another boy. After many fearful tears, the excitement began to grow. Matthew would now have little buddy. How priceless!

We went to have the test done that same week. After waiting about 5 weeks, it was time for our results. We had prayed and prayed, knowing that no matter what the results, we knew God would be glorified. It was a Friday afternoon that the call came and, yes, our new son carried the ALD gene. What did this mean? Surely, there were more options now than 8 years ago. “Sorry, there’s nothing,” we were told by the genetic counselor. This didn’t sit well with us. We knew that we should at least have the same option as my cousin, Jonathan, had earlier. So we contacted some doctors at the Kennedy Krieger Institute. They told us that we did have an option. They recommended we put our son on a very low fat diet and give him Lorenzo’s Oil. This, they believed, would slow the process down. (The movie Lorenzo’s Oil is a great way to see what ALD is all about) They recommended a yearly MRI to watch for signs that the disease was beginning to set in. As soon as changes were seen on the MRI, they would recommend a bone marrow transplant.

At least this was an option, but I wanted my son to be as normal as possible. Such a restrictive diet did not seem healthy to me. Plus, I’d seen how quickly this disease could set in. By the time the bone marrow transplant was ordered, my child could’ve already lost his sight, ability to walk and speak, and who knows what else! We kept looking.

By that next Monday, God had blessed us again! Three days after someone told us we couldn’t do anything for our son, we were told that we had an opportunity to take care of it in his first year, hopefully leading to a normal life thereafter. This person is Dr. Joanne Kurtzberg of Duke University. She is the director of the Pediatric Stem Cell Transplant Program at Duke and has been so wonderful to work with. She is considered a pioneer in her work with umbilical cord stem cells and has helped so many children already. From her experience with ALD and other rare genetic diseases, she was able to give us a 90% chance of success with a stem cell transplant. This would be done in the baby’s first year of life and, if all goes well, could allow him to live a perfectly normal child and adulthood. Praise God from whom all blessings flow!

Although this was and is very scary, we are so thankful to have the chance to give our little Micah, as he’s been named, a chance to be as much as he can be. We are looking forward to watching him grow up and live a long and full life. Thank you, Father. We don’t deserve Your grace, yet You provide it anyway.

Micah Joshua is due to be born June 8, 2005. However, mommy would NOT mind if he decided to come earlier! I can’t wait to see his face. By the way, Micah means “Who is like God?” and Joshua means “The Lord is my salvation.” We think that should get him off to a good start.

As of the plan:
Micah will be born soon—free of any complications.
We will send his cord blood to Duke to get all the necessary testing done. This will include a confirmation test. Although we’ve already had him tested before birth, there is a 2% chance that the test could have been wrong. We know God can EXPLODE a 2%! However, if God chooses not to, we will continue to plan for the transplant. Around August or September, we will temporarily move to Durham, N.C. to begin a 6 month stay. This will include 2 months of chemo and the remaining time will be outpatient recovery time. We should be able to come back home to good ole Alabama after this period of time and hopefully finish Micah’s recovery here. After about a year of germ-free living, Micah should be well on his way to normalcy.

We appreciate all prayers and love encouraging comments in the guest book. Thank you for visiting Micah’s page. We’ll try to keep you posted as the next few years unfold.

In His love,
Travis, Susan, Matthew and Micah

Friday, May 20, 2005 12:09 AM CDT

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