History

Wednesday, May 15, 2013 3:03 PM CDT

*** from May, 2013 ***

Dear friends and family,

On Friday, May 17, 2013, Olivia would have been eleven years old. It’s so hard to imagine. In one sense it seems like just yesterday she was here with us, but a moment later it feels like a lifetime ago that we were able to hold her in our arms. We would give almost anything to be able to hug her one last time. We miss her every single day. Sometimes it hits me out of nowhere, but always she’s never far from the forefront of my thoughts. Most times I feel a sense of peace when I think of Olivia, but occasionally I feel an overwhelming sense of guilt that maybe we didn’t do enough to make her comfortable, pain free, happy or not bored. But she was a strong little girl who fought hard and lived much longer that any of us expected. And now we’re comforted knowing that she is no longer in pain. Our faith plays a huge part in our sense of peace, as does the incredible support we continue to receive from you, our family and friends. Olivia has touched so many people and to this day we meet people who never even met her but have an understanding of how special she was. Will & Carter remember Olivia very well; they remember helping with her feeding tube, suctioning her, rubbing her arms when she was having muscle spasms. When they talk about our family, they always include their sister Olivia, saying “well, she’s in Heaven now’ in a matter-of-fact sort of way. It never really gets any easier, just different. The boys are just finishing kindergarten and are doing very well, although they each have their moments when they get quiet and tell me they’re thinking of Olivia. I see her whenever they give us that big silly smile that six year olds are so good at, especially Will who looks so much like Olivia. With every hug from the boys I think of Olivia and send love up to her.

Almost weekly we are introduced to families who have just had a child diagnosed with mld, and each time it’s a heartbreaking reminder of those first few months. Helplessly watching your child regress from a “normal” toddler to a painful life where she can’t even smile or say “love you”. In a matter of months. And it’s terminal. It is so devastating; in many ways worse than when Olivia finally gave up her fight and passed away. The support the MLD Foundation gives to mld families is so incredibly important. And they tirelessly work with many institutions and organizations that are searching for a cure. They have an overwhelming, never-ending job and we feel so strongly about the work the foundation does, we continue to support the foundation and ask that you consider doing the same.

Of course we will never forget our angel Olivia and we want you to keep her in your thoughts, too. She continues to be such a huge, important part of our lives and we are incredibly thankful for the eight and a half years we had with her. We are so proud to be her parents, and are so proud of the fight that she fought.

Thank you as always for your love and support.
Christine & Eric

Sunday, January 2, 2011 11:47 PM CST

Hello and Happy New Year,

I hope everyone enjoyed the holidays. As we enter 2011, our family is beginning a new journey; although our beautiful Olivia is no longer with us, we feel her in our hearts and know that she is at peace. We hold on tightly to this knowledge as we face our future. The routine will be different, lots of getting used to the new “normal”, but we feel a sense of peacefulness and relief that Olivia’s struggles are over. We miss her terribly. But we learn from her grace and strength and move forward, one day (or minute) at a time. It helps to remember that there was no difficultly for Olivia at the end; she was not sick or in the hospital with another round of pneumonia. She had very quiet, sleepy days leading up to her passing, and when she died, she simply slipped away without any struggle at all. She was at home in her bed (her favorite place to be), with her family around her. After preparing for this for over six years, and considering Olivia’s patterns of getting sick, we thought we’d have some sense of when it would happen. Our hope was that we’d be at Ryan House, but as always, Olivia did everything in her own way. And we are so grateful. It happened just the way it was supposed to.

Our holidays were as good as could be expected. My family came in from Michigan and we enjoyed our time together. The memorial service for Olivia was absolutely beautiful; a celebration of Olivia, and it reflected her in every way. It was positive, warm, and full of beautiful music and Christmas lights – just like Olivia would’ve loved. There were over 200 people there...What a tribute to Olivia and the lives that she touched. We had friends fly in for the service from Portland, Denver, Chicago, Baltimore, Grand Rapids, even Australia! It truly was an amazing day.

We appreciate all of the support we’ve received from everyone. We are so blessed to have such wonderful family and friends. You all helped us through this journey more than you know.

From the bulletin at Olivia’s Celebration…

Dear friends and family,

What can we begin to say about our sweet Olivia? She was strong, funny, patient, courageous, calm, a fighter, a blessing. The lessons we learned from her are infinite and her strength hard to imagine. She brought us closer together as a family, made friendships stronger and touched hearts around the world. For over six years she fought battles that we cannot begin to understand. Yet she had a peacefulness and strength in her that was inexhaustible.

We’d like to thank our family for the love and support that helped us through this journey; for the compassion you showed Olivia, and your “never give up” attitude. To our friends, who have become our second family, for always being there for us no matter what the circumstances were; for laughing with us when we needed to laugh, and crying with us when we needed to cry. And to Olivia’s Team – our doctors, therapists and teachers who helped to make Olivia’s life happier and more comfortable. You all are the reason she did as well as she did for eight and-a-half years. A special thank you to Nurse Fran and Nurse Linda, who very quickly grew to love Olivia as much as we do, and took care of her as though she was one of their own kids…you two will always be part of our family.

Words cannot express the peace and gratitude we feel for the privilege and honor of being Olivia’s parents. And we cling to the knowledge that she is indeed in a better place, running with butterfly wings in Heaven.

In God’s love,
Christine & Eric

What is you only comfort in life and in death?

That I am not my own, but belong-
body and soul,
in life and in death-
To my faithful Savior Jesus Christ.

The Heidelberg Catechism, Lord’s Day 1

Friday, December 10, 2010 9:30 PM CST

Olivia passed away this morning, December 10th, in her bed at home with her family by her side. She died very peacefully and without any struggle. While we are so saddened by the loss of our sweet Olivia, we take great comfort that she is now pain-free and running with butterfly wings in heaven.

With love and gratitude,
Christine & Eric

Saturday, December 4, 2010 8:12 PM CST

Hello friends and family!

Season’s greetings to you! I hope this finds everyone happy and healthy and looking forward to the holiday festivities as we are. The last journal entry was way back in May, after Olivia returned home from one of many stays at Phoenix Children’s. We made the decision to put her on hospice care at that time, because we learned that her lungs had reached a point where they are not able to work effectively any longer. That being said, Olivia has had a fantastic six months since she’s been on hospice, other than a few random bad days that were quite manageable. She never ceases to amaze us, and clearly she is not ready to give up just yet! Overall I think she does sleep more than she used to, but when she is awake she is very alert and seems to understand everything that’s going on around her. She’s in third grade; three times a week her teachers come to our house for school, and when she’s awake for them, she does hand-over-hand art projects and listens to stories as she’s always done. Sometimes she sleeps through “class” but her teachers are always understanding of that! Olivia is also receiving music, physical and occupational therapies weekly, all of which help to keep her relaxed and her muscles moving. Both Nurse Linda and Nurse Fran are still here three days a week each, which of course is a huge benefit to all of us. Not only do they take great care of Olivia, it allows us to get out of the house and do lots of things with Will and Carter that we wouldn’t otherwise have the opportunity to do. I’ve been able to take on some design jobs lately, which is really good “therapy” for me.

The boys are four years old now, and they are as sweet and BUSY as ever! Their love and compassion for their big sister continues to grow, and as they have since they were little, they want to help take care of her as much as possible. Whether it’s suctioning Olivia (yes, they actually know how to do that very well!) or just move her equipment from the family room to her bedroom, they help out. They never really question why Olivia can’t talk or walk or smile; Carter and Will accept her just the way she is and always say she is the best big sister in the world.

Since Olivia has done well the last number of months, we’ve been able to get away on some mini-trips, including a weekend in Chicago for Eric and me, a camping trip with the boys up in the mountains, and a weekend back in Michigan for me to celebrate my parents’ fiftieth wedding anniversary. We couldn’t have done all this without Ryan House (if you haven’t already, check out their website (www.ryanhouse.org) to see what an amazing place it is!), and we spent a couple weekends there with all five of us. It’s such a fun place for the boys as well as Olivia.

In a couple weeks my Mom and Dad and my bother and his wife will be here to celebrate Christmas. This will be our ninth Christmas with Olivia; our seventh since she’s been diagnosed, and we are absolutely thrilled to have Olivia with us for another holiday. I truly feel blessed that she has done so well, and that Carter and Will have had the opportunity to be with their sister for much longer than I ever anticipated. We are grateful from the bottom of our hearts.

Thank you as always for your support. Please keep the prayers and well-wishes coming…They help!

Happy Holidays,
Christine & Eric

Sunday, May 30, 2010 9:29 PM CDT

Hello,

Olivia came home from the hospital last Thursday afternoon and has been doing well and staying very comfortable. Unfortunately there have been some new developments that have put us on a new path in Olivia’s journey. This recent hospitalization was not caused by any infection (the last number of times she’s been in the PICU it was because of pneumonia); rather, it was more of what her doctors called mechanical – meaning her lungs are reaching the point where they’re not able to do their job any longer. We were able to wean her off the vent and get her lungs cleared quite a bit (the respiratory therapists at Phoenix Children’s are amazing) to where she could come home, but since these episodes will continue to happen, Olivia is now at home with hospice care. We cannot continue to reintubate and put her on a vent when her lungs are continually giving out, so we’re going to keep her as comfortable as possible, and when she does take another turn for the worse we won’t take her to the hospital. At this point she is doing very well at home. Her numbers are great and when she does have a harder time breathing, we put her on her bipap machine which definitely helps. So we hope and pray that she will continue to do well and be comfortable for a long time. Knowing Olivia and the fighter that she is, hopefully this will be the case. When the time does come and she really starts struggling, our hope is that we’re able to get her to Ryan House (they are also a hospice facility). We don’t have any idea what the future holds or when it will happen, so now more than ever we are taking one day at a time and enjoying every minute with Olivia.

Thank you for all of your support. We always tell Olivia that she’s got people around the world praying for her and sending her lots of good wishes. In her heart I know she appreciates it as much as we do.

Christine & Eric

Tuesday, May 25, 2010 6:37 PM CDT

Hello friends,

Olivia was successfully extubated yesterday (Monday) afternoon, a day after we had anticipated, and is doing relatively well. Her breathing became a bit more labored last night and today, but we’re hoping this is temporary and maybe a result of just coming off the vent for five days. She is on the high-flow oxygen delivery system (vapo-therm), and like before, the goal is to get her weaned off of it and back to her usual five liters of oxygen. Once this happens, we can go home. The doctors opted not to lower the settings today to give her more of a chance to rest. Despite rapid breathing, she is comfortable, alert, and getting some sleep. So we continue to take one day at a time and hope that she remains comfortable and is able to go home soon.

Thanks for your continuing support!
Christine & Eric

Saturday, May 22, 2010 1:46 PM CDT

Hello!

Olivia is doing better since being intubated and put on a vent this past Wednesday. If she continues to have a good day and night, she will most likely be extubated sometime tomorrow. She has been sleeping a lot and hopefully getting her strength back, and she seems very comfortable. We’re keeping our fingers crossed that everything goes smoothly as it did last month, and maybe Olivia can be back home sometime next week. Uncle Mark and Aunt Kathy (my brother and his wife from Grand Rapids) come into town next weekend, so we need to be back home to enjoy their visit!

Not much else at this point to report…I’ll keep the journal updated, hopefully with good news tomorrow. Please keep Miss Olivia in your thoughts and prayers, and as always, we appreciate your support! Thanks again to everyone who was involved in Olivia’s Walk…it’s hard to believe that was just a week ago today. But it was a great success and I know Olivia enjoyed it as much as we did. She is a lucky girl to have so many wonderful people in her life!

Thanks again,
Christine & Eric

Thursday, May 20, 2010 9:03 PM CDT

Hello all,

The good news is that Olivia’s Walk was a huge success – our biggest crowd yet, and Olivia was there to enjoy the day and celebrate her eighth birthday! It’s hard to believe she’s eight! The bad news is that she’s back in Phoenix Children’s Hospital, intubated and on a vent. After a great day on Saturday, she went downhill that evening (so typical of Olivia: she keeps it together and actually does well when something big like Olivia’s Walk is happening!), and we tried to handle it at home as best we could. Plus we really wanted for her not to be in the hospital on her actual birthday, which was Monday. But by late Tuesday night/early Wednesday morning it was apparent that her breathing was really labored, the fevers weren’t going away and we knew we had to take her in. It seems that it is the same recurring pneumonia, and like last month, she was not exchanging any air and her carbon dioxide levels were dangerously high. So by 11:30 last night, she was intubated and put on a vent. Fortunately, she is very comfortable and not struggling with the tube at all; in fact she has been sound asleep all day. It’s great to see her so comfortable and quiet, since she hadn’t really slept soundly since Saturday night. The game plan is to eventually wean her off the vent like we did last month, but for now we are letting her rest and get some strength back.

I’ll keep the journal updated daily. Please keep Olivia in your thoughts and prayers. She is such a fighter…we hope she still has some fight left in her! Thanks to all of you who participated in Olivia’s Walk and helped make it a huge success. It’s always so overwhelming and inspiring to see so many supporters of Olivia! Whether you were there in person or in spirit, thank you!!

Christine & Eric

Friday, April 30, 2010 4:56 PM CDT

Hello friends and family-

Olivia is doing great, and we’re going home from the hospital this afternoon! She’s back to “normal” and I’m sure very anxious to get back to her own bed in her own room. And to see her little brothers, of course! It’s been quite a journey since we came in last Tuesday. It’s hard to believe the day we came in she could not even breathe on her own…She is such a fighter, and not ready to give up yet. Thank you for all of you support over the last ten days. I am always amazed at the outpouring love and prayers and positive thoughts for Miss Olivia. We are so fortunate and blessed! Please continue to keep her in your thoughts and prayers, that she stays healthy and strong. Hope to see you at Olivia’s Walk!

Christine & Eric

Thursday, April 29, 2010 3:25 PM CDT

Hello,

I am happy to report that Olivia is doing very well: she was completely weaned off the vapo-therm yesterday afternoon, and is doing great on 5 liters of oxygen (which is what she receives continuously at home). Today is her last day of the two antibiotics she’s been receiving to treat the pneumonia, and they are cutting back respiratory therapy treatments and starting her regular feeding schedule back up. If she continues to do well, we might be able to go home tomorrow! Who would’ve thought she’d be doing this well less than a week after being intubated and on a vent?? Olivia really is amazing, and such a fighter. I will let you know when we find out in the morning from her doctors if we’re going home. I think she’ll be ready; I certainly am, and Will and Carter are really anxious to have Mommy and O back home. This has been really hard on them, but they’re trying to be tough little guys. We can’t wait to see them!

Please keep Olivia in your thoughts and prayers – obviously it helps! Thank you for all of your support, and we look forward to seeing you at Olivia’s Walk in a couple weeks…we have lots to celebrate this year, and we hope you’ll join us!

Thank you,
Christine & Eric

Monday, April 26, 2010 11:26 PM CDT

Hello friends,

Olivia is continuing to do quite well following her extubation and removal from the vent on Saturday. (She was admitted last week Tuesday with recurring pneumonia. Because she was unable to breathe strongly enough on her own and carbon dioxide was building up, she had to be intubated and put on a vent to help her breathe.) She is still on the high-flow oxygen delivery system (vapo-therm), and the doctors are very slowly weaning her down. Even though she’s doing relatively well, they do not want to rush it, since she’s been much sicker than usual (the last thing we want is to go home only to end up back in the emergency room in a couple weeks). Overall she has been resting well and staying comfortable, although this morning she was a little agitated (nothing out of the ordinary)…maybe she misses her brothers and wants to get back home! She calmed down this afternoon and took a nice long nap, and now it looks like we’re going to have another good night. She is still receiving antibiotics to treat the pneumonia, as well as aggressive respiratory therapy. As she gets stronger and closer to her “normal”, we’ll start thinking about going home. The doctors aren’t even talking about that yet, but we’ll get there…we need to get our sweet girl all better for Olivia’s Walk and her big eighth birthday celebration!

Thanks as always for all of your support. It is so encouraging to know that so many people are pulling for Olivia. Please continue to keep her in your thoughts and prayers – I know it helps!

Sincerely,
Christine & Eric

Saturday, April 24, 2010 6:00 PM CDT

Hello,

I am happy to report that Olivia was successfully extubated a couple of hours ago and is doing very well. (She was admitted Tuesday with a recurring pneumonia; because she was unable to breathe strongly enough on her own and carbon dioxide was building up, she had to be intubated and put on a vent to help her breathe.) The doctors had weaned her dependency on the vent down significantly - to where she was doing almost all of the work herself, and so the extubation and removal off the vent wasn’t too big of a change for her. We thought she would need breathing assistance from a bipap, but because she’s done so well, they put her on the high-flow oxygen delivery system that she is usually on when hospitalized with pneumonia. If over the next day or so this isn’t enough support for her, she will go onto bipap…but hopefully that won’t be necessary, and we’ll be able to begin weaning her down off the vapo-therm. As she has been the last few days, Olivia is resting very comfortably, is as alert and aware as ever, and is now breathing “big-girl breaths” (as one of her doctors calls it). So at this point the game plan is to continue treating the pneumonia with antibiotics and respiratory therapy, and wean her down off the vapo-therm until she’s back to (or at least close to) her baseline.

Olivia absolutely amazes us with her stamina and her ability to fight. We are truly blessed! She is such a strong little girl and I don’t think she’s ready to give up just yet.

Thank you for all of your support over the past few days. I know keeping her in your thoughts and prayers has helped immensely. Please continue to do so - for Olivia to continue to gain strength and remain comfortable and rested. I’ll update the journal soon.

Thanks again,
Christine

Friday, April 23, 2010 0:12 AM CDT

Hello friends,

Olivia is still in the PICU at Phoenix Children’s Hospital; we arrived Tuesday morning and Olivia was admitted with the recurring pneumonia she’s been dealing with since November. Because she was unable to breathe strongly enough on her own and carbon dioxide was building up, she had to be intubated and put on a vent to help her breathe. While that was all very unexpected and overwhelming, she has improved significantly, and the intubation and vent have made it easier for the doctors and respiratory therapists to treat the pneumonia. The goal is to continue weaning the amount of support she’s receiving from the vent (she’s gone down significantly already) until the doctors feel she’s got enough strength to be extubated. If additional support is needed, she can receive it from bipap. Everyone is hopeful that she will do very well, based on her improvement since Tuesday afternoon. If she continues to improve the way she has been, they will most likely extubated on Saturday or Sunday. I will update the journal soon; please continue to keep our little fighter in your thoughts and prayers. She honestly never ceases to amaze us with her strength and determination. She’s resting well, very comfortable, and paying attention to everything going on around her as she always does. She truly is an amazing girl!

Thank you for all of your support.
Christine & Eric

Wednesday, April 21, 2010 10:14 AM CDT

Hi friends,

I’m so sorry to say that Olivia has been admitted back into the PICU at Phoenix Children’s Hospital; we came in yesterday (Tuesday) morning after a really tough day and night on Monday. It was the usual issues caused by the pneumonia she’s been fighting all winter, but when none of our tricks worked we knew it was time to come in. For the first time since we’ve been dealing with this pneumonia (actually, ever), Olivia’s blood gas was extremely elevated, meaning she wasn’t breathing enough on her own to get the carbon dioxide out of her system. After unsuccessfully trying a few ways to stimulate her breathing and elevate her oxygen level, her doctors strongly recommended intubating her, and we agreed. After intubation, she was placed on a ventilator, which is doing much of her breathing for her. At this point, the goal is to treat the pneumonia and over the next few days wean her down on the vent, until hopefully she has enough strength to go off the vent completely. We have different options for when that happens, including giving her additional support if needed from her bipap machine. These are all decisions that Eric and I will be making in the next few days, and while these decisions do need to be made, we are also being encouraged by the doctors not to get caught up in what might happen: we are taking one day at a time, and one issue at a time. Right now the issue is to keep Olivia as comfortable as possible and treat her pneumonia. After an extremely overwhelming day yesterday, I believe the next few days will be status quo, and I will update the journal regularly to keep you all informed. Please more than ever keep Olivia in your thoughts and prayers!

Thanks,
Christine

Friday, March 26, 2010 5:48 PM CDT

Hello!

My apologies for not writing since January. As you might guess, we have been really busy here at the Hoffmann home, but we are all doing well and most importantly, we’ve been able to keep Olivia out of the hospital for two months. She is doing relatively well; she’s had a couple of flare-ups but nothing that can’t be handled with antibiotics and extra respiratory treatments. She had been in the hospital three times from November through January with a recurring pneumonia, and I’m quite sure the infection is still in her lungs (to a lesser degree) – it seems that once you get a severe pneumonia, it’s hard even for a healthy person to bounce back quickly, let alone someone with a compromised immune system like Olivia. We’ve added a lot to our routine, including more medications given through a nebulizer and treatments with her smart vest – a machine that literally shakes her to keep the fluid in her chest loose. All of this adds about an hour and a half to both our morning and evening routine; now more than ever there just aren’t enough hours in a day. But the results are worth it!

Olivia continues to have a busy schedule with school and various therapies. However, we have cut back on the number of sessions she receives, since more time needs to go to her respiratory care – and she’s been a lot sleepier lately (the treatments wipe her out). When she’s awake she still seems to enjoy her teachers and therapists, and even if she’s sleeping her physical and occupational therapists can really give her a good workout. We are so grateful to have a fantastic team who take such good care of Olivia.

We’ve been enjoying our annual March visit with my Mom & Dad, who’ve escaped the Midwest winter and are soaking up lots of AZ sunshine and warm weather. Olivia has been enjoying Pop’s piano music as always, and visibly relaxes when Nan and Pop are close by. The other day we were able to avoid giving her valium (which she takes for agitation) by having Pop calmly and quietly talk to her for five minutes or so. There is never any doubt in our minds that Olivia knows who is around her and what’s going on, and that proved it once again!

Will and Carter are doing great; they are so helpful and caring and aware of their big sister. They have started to realize that she is special: she will always require lots of extra care and will never play or talk with them, but they say she talks to them “with her heart”. Their empathy and understanding amazes us every day.

Hope you are all well, and I promise I will try to be more diligent in keeping up this journal. Thank you as always for all of your support and love. We are truly blessed!

Sincerely,
Christine & Eric

Friday, January 15, 2010 1:01 PM CST

Hello friends and family!

We’re going home this afternoon, after almost going yesterday. Late in the day, her breathing became much more labored, and she acted as she does right before getting really sick. So to be safe, her doctors decided to keep her in for one more night, just in case. She eventually calmed down through the night, and so-far this morning she’s been doing quite well. The plan is to go home later this afternoon, and continue antibiotics and respiratory therapy there. Olivia is by no means “over” the pneumonia, but she’s doing better and with good care at home, hopefully she’ll be back to normal within a week or so.

Of course we cannot wait to get home, and I’m so anxious to see Carter and Will. And Olivia always seems to improve once she’s home and in her own bed; hopefully that will be the case this time, too.

Thank you for all of you encouraging thoughts and words throughout the past week. The phone calls, emails, and guestbook entries really help and are very much appreciated! We are so blessed to receive the support that we do. I tell Olivia about everyone who is praying for her and sending positive thoughts her way, and I know she appreciates it as much as we do!

Thanks again,
Christine & Eric

Wednesday, January 13, 2010 11:05 PM CST

Hello!

Good news – if all continues to go well tonight and tomorrow morning, Olivia will be able to go home tomorrow afternoon! We’ve been in the PICU at Phoenix Children’s since Sunday with pneumonia (again). But fortunately she’s done very well this time, and I think we caught it early. She definitely has not been as sick as she was in December, and we’ve been at her baseline oxygen and feedings since yesterday morning. We’ll continue antibiotics at home (different and hopefully more effective than what we had before), and of course aggressive respiratory therapy. We have our work cut out for us when we get home: we absolutely do not want to be back here anytime soon!

We cannot wait to get home and see Will and Carter. They’ve been such good sports about Mommy and Olivia not being around (and we were just here for ten days less than four weeks ago!). They understand that we’re at the hospital to help Olivia feel better, but I know we’ll all be happy when we’re together again.

I’ll keep the journal updated with Olivia’s progress. Keep your fingers crossed that we do indeed get to go home tomorrow. Thank you as always for your encouragement and support. We couldn’t get through this without our family and friends, and we truly appreciate you all.

Sincerely,
Christine & Eric

Monday, January 11, 2010 7:35 PM CST

Happy New Year!

Hope you enjoyed the Holidays. We had a wonderful Christmas; everyone (most importantly Olivia) stayed healthy, and we had a great time with my family from Michigan. Will and Carter really enjoyed Christmas – now that they’re three, they really get the whole idea of Santa and all that fun stuff. They continue to be so helpful and caring toward their big sister, and they always want to help take care of her. It’s very sweet! We are very thankful to have spent another Christmas with Olivia – that was the best gift we could have received.

Olivia came home from the hospital on December 15th, and thanks to really aggressive respiratory therapy that we continued at home, she stayed healthy through the Holidays. Unfortunately, the pneumonia came back and she was admitted back into the PICU at Phoenix Children’s Hospital yesterday. We are hopeful that we caught it early enough to treat quickly. Olivia is receiving i.v. meds and almost constant respiratory therapy, and she really is doing well – much better than yesterday when we came in. She’s been sleeping a lot today and when she is awake, she seems alert and comfortable.

I will update the journal regularly. As always, we appreciate your support, especially during times like this. Please keep her in your thoughts and prayers that she has the strength to get through this, and quickly.

Thank you,
Christine & Eric

Monday, December 14, 2009 11:09 PM CST

Hello-

I am so happy to report that Olivia is doing very well, and it looks like we’ll be going home tomorrow (Tuesday) afternoon! After being here in the PICU since last Sunday, she and I are very excited to get back home. She has been on the standard amount and delivery of oxygen she receives at home since early this morning, and is tolerating it very well. The doctors want to watch her over 24 hours and as long as there are no complications, they will let us go. We will continue i.v. antibiotics at home through Saturday; we’ll also continue to be aggressive with her respiratory therapy – we do not want to end up back here anytime soon! She definitely looks like herself again and has been resting very comfortably.

Thankfully, we’ll be home just in time for Nan and Pop’s (my Mom and Dad from Michigan) arrival this Friday for the Holidays. It’s always so much fun to have them here, and of course they are such a big help with all three kids. Uncle Mark and Aunt Kathy arrive from Grand Rapids next Wednesday, just in time for Christmas. We are so thankful that Olivia has made it through another battle with pneumonia. I always say it, but it is so true: she is a fighter and does not want to give up! It is a blessing that we will spend another Christmas with our Olivia, and for that we are very, very grateful.

Thank you for all of the words of encouragement that you’ve been sending our way. Eric and I are reminded of how blessed we all are by the love and support of so many friends and family. Olivia is such a lucky girl to be surrounded by so many wonderful people, and we really appreciate all of you!

Sincerely,
Christine & Eric

Sunday, December 13, 2009 10:17 AM CST

Hello!

I’m happy to report Olivia has been doing much better over the last couple of days, and we’re seeing definite improvement in her numbers as well as her daily x-rays. We are still weaning her slowly off of her high-flow oxygen support; the goal is to get her back down to what she requires at home. The doctors are doing this very slowly, but so-far she has been tolerating it. Also, by now her antibiotics have taken full effect and she is responding well to those as well. She’s been resting comfortably and getting lots of sleep (actually she’s been sleeping a lot during the days and awake for much of the night!). We’re so happy to see her looking like herself again and not agitated like she had been. I am actually catching up on my sleep, too, which has been wonderful. It’s much easier to get a good night’s sleep when I know there is a nurse keeping a close eye on her, not to mention the respiratory therapists who work on her regularly.

I am very much looking forward to spending the entire day today at home with Will and Carter - I haven’t seen them since last Sunday! Eric has been holding down the fort at home this past week (and doing a great job!), but today he will stay here in the PICU with Olivia so I can take a break. Carter and Will have been so understanding and sweet about Olivia being in the hospital. Every day they ask their Dad if she’s getting better – and Will demonstrates how he is going to kiss her when she gets home. They are great little brothers!

I will keep the journal updated with Olivia’s progress. Please continue to keep her in your thoughts and prayers…I know it helps.

Thanks,
Christine & Eric

Friday, December 11, 2009 11:12 PM CST

Hi everyone,

Hello from the PICU where Olivia has been since Sunday evening fighting pneumonia. Today was not as great as yesterday was; Olivia woke up this morning with an elevated heart rate and lower oxygen sats, labored breathing and a fever. But getting well is a process that’s going to take time, and we can’t expect it to go quickly. I had gotten very hopeful after the really great day we had yesterday, and our rough morning was a reminder that this will take time and patience! Olivia improved this afternoon and is now resting comfortably again. And her x-ray from early this morning showed slight improvement from yesterday’s, which is encouraging. We’re continuing aggressive respiratory therapy and antibiotics, as well as oxygen support. Everyone here at Phoenix Children’s has been so helpful and supportive, and Olivia is getting excellent care.

Thank you for all of your support and words of encouragement throughout this week. Please continue keeping her in your thoughts and prayers; as always we really appreciate all of your support!

Christine & Eric

Thursday, December 10, 2009 11:21 PM CST

Hello!

I am very happy to report that Olivia has had a very good day today. Her x-ray early this morning showed improvement from yesterday’s, and her numbers have been very good. In fact, even on a good day or night at home we don’t usually see her heart rate this low for an extended period of time. So hopefully we’ve turned the corner and she’ll continue to improve. Olivia is still on a lot of oxygen support (which she’ll need to be weaned from before we can go home), and the doctors are in no hurry to wean her too quickly, and that’s fine with us. We of course want her to be as healthy as possible so we do not end up back here! Olivia is such a fighter, and she’s had a rough time the past number of days - it’s very nice and a relief to see her resting so well.

I will keep you updated. And as always, thank you for your support and encouragement. It gives us all strength, and we really appreciate it!

Christine & Eric

Wednesday, December 9, 2009 11:08 PM CST

Hello family and friends-

Greetings from the hospital. As you probably know, Olivia was admitted into the PICU Sunday with pneumonia, and we’re hoping the i.v. antibiotics and intensive respiratory therapy she’s receiving will help turn things around quickly. Unfortunately she had a hard time last night and this morning, after doing quite well Monday and yesterday. She was not as bad as she was before we came into the hospital, but her breathing became more labored and she had a harder time keeping oxygen levels up and her heart rate down. Also, her chest x-ray from this morning actually looked a bit worse than Sunday’s. But she started improving late-morning today, and has been doing well since. This confirms that this is going to be a slow process and we cannot wean her too quickly from the support she’s receiving. Her pulmonologist added an additional antibiotic today just in case we’re not covering everything she’s fighting (we’re waiting for lab results on a couple of tests). Hopefully she will continue to improve and get stronger each day.

Please continue to keep Olivia in your thoughts and prayers. We really appreciate your support!!

Thank you,
Christine & Eric

Tuesday, December 8, 2009 9:28 PM CST

Hello!

I am happy to report that Olivia is doing better since being admitted to Phoenix Children’s on Sunday with pneumonia. As I said in yesterday’s journal entry, she turned the corner early yesterday (Monday) morning, and since then has been sleeping most all of the time, and showing improvement with her heart rate and oxygen levels. She’s been receiving i.v. antibiotics and aggressive respiratory therapy and is responding well to both. The goal is to get her back to her baseline oxygen intake and to clear out as much of the junk in her lungs as possible. We’re taking it day by day, and the doctors are in no rush to move things along too quickly. We do not want to be back here in another month!

We are amazed at the outpouring of support we’ve received. I’ve been telling Olivia about all of the emails, phone call messages, texts and guestbook entries we receive, and I am sure she appreciates it as much as Eric and I do. We all are really blessed by your support, and I know for a fact it makes a difference.

Thank you!
Christine & Eric

Monday, December 7, 2009 4:38 PM CST

Hi everyone,

Unfortunately Olivia is back in the PICU at Phoenix Children’s with pneumonia. We came into the emergency room yesterday (Sunday) afternoon, after about 48 hours of Olivia having an elevated heart rate and difficulty keeping her oxygen levels up. We did all we could at home, but by yesterday morning she was clearly in distress and it was time to take her in. Tests and a chest x-ray showed pneumonia, and also an e-coli infection which we had learned about earlier in the week. So we’re dealing with almost the same situation we were in about a month ago. We had a really rough night last night and couldn’t get Olivia stabilized, but by this morning, with the help of a high-flow oxygen machine, she began to calm down, her heart rate came down and oxygen levels came up. As of now (Monday afternoon), she’s resting very comfortably – the first time she has since Friday afternoon. She is receiving i.v. antibiotics and aggressive respiratory therapy.

Olivia is such a fighter. We’re hoping and praying she has the strength to get past this quickly (it’s concerning that she was fighting pneumonia just a month ago; plus the additional challenge of the e-coli infection). But as you know she is a tough little girl who always amazes us.

I will update the journal daily. Please keep Olivia in your thoughts and prayers – it truly makes a difference!

Thanks,
Christine & Eric

Thursday, November 19, 2009 11:46 PM CST

Hello-

As you’ve probably guessed from the lack of updated journal entries (no time!), Olivia is home from the hospital! We came home Sunday, November 8th, after being in the PICU for five days with pneumonia. We are back into the crazy-busy routine without a minute to spare – thank goodness I was able to get some extra sleep in the hospital. Olivia has been doing much better and as always she does so well when we get home because she’s so happy to be here! I think she has recovered so quickly because we caught the infection quite early, and of course everyone at Phoenix Children’s was wonderful. Now we hope and pray that she will stay healthy through the rest of the season.

As soon as I’ve got more time I will update the journal, but I at least wanted to let everyone know that Olivia is doing much better. And to say thank you for all the support you all continue to give us. We are so blessed!

Thanks,
Christine & Eric

Friday, November 6, 2009 7:43 PM CST

Hello!

I’m happy to report that Olivia, who has been in the hospital with pneumonia since Tuesday evening, is doing much better! Today (Friday) her doctors saw an improvement in her morning x-ray, and they think the medications and aggressive respiratory therapy treatments are making a difference. And thankfully she’s still showing no sign of H1N1 or RSV. We are still in the PICU which is excellent because she has a private room (less likely to catch germs) and she has her own nurse. Plus she’s been receiving a special oxygen delivery system that they only use in the PICU. The goal is to wean her off this oxygen and back on to regular oxygen like she receives at home, and make sure she can tolerate regular feedings - then I think we’ll be able to go home. We’ll still have to give her i.v. antibiotics at home, but we can certainly handle that. We can’t wait to be out of here; although I must say, I’ve gotten more sleep here than I have at home in years. It’s really nice knowing someone else is keeping a close eye on Olivia so I don’t have to (and no little boys getting up during the night or at the crack of dawn!). So it sounds like we’ll be back home by Sunday, unless something changes. I am looking forward to seeing Will and Carter – they are handling this really well, but I think they’ll be happy when we’re all together again and back into the normal routine. My sister has been so helpful taking care of them, and fortunately Eric was able to take some time off of work this week to be with the boys and spend time with Olivia in the hospital.

I will keep the journal updated. Please continue to keep Olivia in your thoughts and prayers. She is so blessed to receive so much support from all of you…we all are! And it truly makes a difference. Thank you!!

Christine & Eric

P.S. In case you didn’t read the last journal entry, here is an excerpt regarding Will and Carter’s third birthday. Holy Batmobile, Batman!

“We had a great visit with Nan and Pop (my Mom and Dad from Michigan) in October to celebrate the boys’ birthday. I think we all would agree that the highlight of their birthday weekend was a visit from Batman and the REAL Batmobile! Through friends from church we met the Keller family, who has made it their mission to help special kids. Check out their website www.gothamcitymotors.com to find out more about this absolutely amazing family and what they are doing to bring happiness to the young citizens of Gotham City! And don’t miss the Bat-Blog, where there is a blog about and pictures of their visit with Olivia and her brothers. It wasn’t feasible for Olivia to go for a ride in the Batmobile, but I think she got a kick out of the whole experience, including hanging out with Batman. Of all the Hoffmann boys, I believe Eric was the most thrilled, because HE drove Will and Carter in the Batmobile! Way to go, Bat-daddy!”

Wednesday, November 4, 2009 11:25 PM CST

Hello!

Greetings from the long-lost Hoffmann family! It has been months and months since I’ve written - thank you to my sister for updating our journal in August. The last months have been so incredibly busy; there just aren’t enough hours in the day! Overall Olivia has done very well through the summer and fall (except for one infection in September that we were able to treat at home with medication through her i.v. port). However, Olivia has been admitted into the PICU at Phoenix Children’s Hospital Tuesday evening with pneumonia. But she is doing quite well, and has been resting comfortably all day. She is receiving i.v. antibiotics and respiratory therapy, and hopefully will be able to go home soon. It’s really helpful that she’s in the PICU because she has a private room and her own nurse - hopefully she won’t catch anything else while we’re here. Thankfully she tested negative for H1N1 and RSV. So she is only fighting pneumonia, and I think we caught it early enough and she’ll recover quickly. I’ll the journal up to date to let you all know how she’s doing.

Will and Carter are now three years old, and as non-stop as ever. I have to admit I’m glad they are out of their terrible two’s (times two!) – they definitely kept us on our toes. I think the past nine months were even more challenging than when the boys were newborn...at least I got more sleep when they were babies! It seemed like every night all summer I was up late with Olivia and then up at the crack of dawn with Will and Carter. And are two-years-olds ever busy! If only we adults could have some of that energy…

We had a great visit with Nan and Pop (my Mom and Dad from Michigan) in October to celebrate the boys’ birthday. I think we all would agree that the highlight of their birthday weekend was a visit from Batman and the REAL Batmobile! Through friends from church we met the Keller family, who has made it their mission to help special kids. Check out their website - www.gothamcitymotors.com - to find out more about this absolutely amazing family and what they are doing to bring happiness to the young citizens of Gotham City! And don’t miss the Bat-Blog, where there is a blog about and pictures of their visit with Olivia and her brothers. It wasn’t feasible for Olivia to go for a ride in the Batmobile, but I think she got a kick out of the whole experience, including hanging out with Batman. Of all the Hoffmann boys, I believe Eric was the most thrilled, because HE drove Will and Carter in the Batmobile! Way to go, Bat-daddy!

Thank you as always for your continuing support. Please especially keep Olivia in your thoughts and prayers as she recovers. We truly appreciate it.

Sincerely,
Christine & Eric

Friday, August 28, 2009 9:57 PM CDT

Hello!

This is Katie, Olivia’s aunt, writing with an update on Olivia. I’m doing this for Christine because it is just too hard for her lately to find the time and energy to write. Carter and Will are indeed in their “terrible twos,” and Olivia’s been keeping her mom up at night pretty late. But more on that later.

First of all, the third annual Olivia’s Walk on May 17 was a huge success! We had our biggest turnout yet and raised lots of much-needed funds for the MLD Foundation. Thanks to all of you who participated! It means a lot to Olivia and all of us to know that such a great system of friends and family are supporting the family and MLD research. And it was a really special way to celebrate Olivia’s seventh birthday. Thank you.

Although Olivia has been holding her own in many ways, she has been struggling over the past few months with increased congestion. This requires a lot of manual suctioning of her airway. Nighttime has been especially difficult, and Christine has been sitting with her frequently until well past midnight. We think she’s got a virus now, and she should be starting a new antibiotic this weekend. Hopefully this will help her out and lead to more peaceful nights. We are especially glad there have been no hospital stays or even ER visits for a long time; Christine and Eric and her wonderful nurses, Linda and Fran, have been able to keep Olivia comfortable at home, which is always the goal. She’s even been in the pool a few times this summer, which we know she enjoys.

School has started again for Olivia (second grade!), and she’s busy each day with her same teachers from last school year. She also has vision and occupational therapy through the school district each week. And the state provides regular music and physical therapy, so Olivia has lots of activity and stimulation each week.

Carter and Will are busy, busy, busy! They are typical two-year-olds, which means lots of activity and unbelievable amounts of energy. The boys go to a great preschool program at Scottsdale United Methodist Church three times a week, and really love it there. Their vocabulary is growing by the week and they’re a lot of fun to talk with. And they’re very sweet and gentle with their sister, “O.” But their day starts at about 6 a.m., and afternoon naps are sometimes short or even skipped, which means a really long day for their tired mom! (So you might be getting more updates on Olivia from me....)

We’re all looking forward to a visit starting next weekend with Uncle Mark and Aunt Kathy (our brother and sister-in-law), and the boys are already watching the sky for their airplane! And we can see that Olivia really reacts when she hears about her uncle and aunt coming. In October, Nan and Pop (our mom and dad) will be here to help us all celebrate the boys’ third birthdays.

Thank you again for all your support and participation in Olivia’s journey. It means more to Christine and Eric than words can say.

Love from Olivia’s aunt,
Katie Vinger

Monday, May 4, 2009 1:01 AM CDT

Hello family and friends!

We hope this finds you all doing well and enjoying some beautiful Spring weather. It’s hard to believe it’s already May, and Olivia’s seventh birthday is just around the corner – the 17th! We are thrilled beyond words that our little angel has made it this far, and we feel so fortunate to be celebrating another birthday with sweet Olivia.

We’re all (hopefully) back on the road to recovery after a long stretch of illnesses. Shortly after I wrote the last journal entry, Will and Carter were diagnosed with bronchitis and double ear infections. Of course Olivia struggled with an infection as well, and we put her on yet another round of antibiotics. All three kids were healthy for a week or so, and then we got hit with another round of double ear infections, and Olivia began spiking high fevers on a daily basis. After another round of meds, which we just finished up a few days ago, everyone appears to be healthy. Hopefully we will stay that way! Of course the good news is that we’ve been able to keep Olivia out of the E.R. and from being admitted into the hospital, thanks to the wonderful care of her doctors and Fran and Linda, her nurses here at home. Through all of this we’ve kept up her schedule as much as possible, and she still brightens up when her teachers and therapists come over. Even if she’s feeling lousy, she relaxes and seems to really enjoy her lesson or therapy session… I’m sure it’s a welcomed distraction for her! Soon “school” will be done for the summer, but we’ll continue on with physical therapy twice a week (with one session per week in the pool, if Olivia feels up to it) and music therapy once a week. And hopefully we’ll be able to plan some field trips (like to the Children’s Museum) as long as Olivia is healthy enough.

In just a week Nan and Pop will be here from Michigan to help us celebrate Olivia’s birthday, and we can’t wait! Olivia love their visits – Pop plays the piano just for her, and Nan always has her morning coffee in Olivia’s room…quality quiet time before those crazy little brothers get going! And of course I love to have my parents here because of all the extra help they give. Carter and Will are sweet little boys who love their big sister, but they are definitely two-year-olds who keep us on our toes. Never a dull moment at our house! It’s exhausting, but we’re so grateful for our children – they each are such a blessing.

We’re looking forward to the Third Annual Olivia’s Walk, which is happening on Saturday, May 16th. We sincerely hope as many of you as possible will join us that morning to celebrate Olivia’s big day, and raise money for the MLD Foundation and Olivia’s Fund. We’re thrilled that Olivia is turning seven, and to celebrate it with lots of our friends will make it even more memorable…how special it will be for Olivia most of all!

Thank you for all of your support. We are so blessed to have the family and friends that we do, and we are grateful. Please continue to pray for Olivia to have more good days, and keep the positive thoughts coming her way.

Christine & Eric

Wednesday, March 11, 2009 0:00 AM CDT

Hello everyone!

Greetings from the Hoffmanns – hope you are all well! Olivia has been down a rough road the last month, but thankfully she’s doing better and at least for now we’re out of the woods. Beginning a few weeks ago, she suddenly began having a difficult time keeping her airway open, even with the assistance of a nasal trumpet (a tube that goes in her nose; it keeps her tongue from falling back and makes suctioning much easier). We increased the use of her bipap machine (this gently forces air into her lungs when she inhales), and for a number of days it appeared as if she was only going to be able to keep her airway open if she was on bipap. This quickly opened the discussion of a tracheostomy, but after meeting with her pulmonologist and discussing the pros and cons, we decided to put that on the back-burner for now. After a week or so she improved, and while she cannot go even a short time without either her trumpet or bipap, she is no longer in the critical phase she had been. We were worried that things were going to be much worse, but once again Olivia has amazed us with her strength and stamina! On top of all this, she has gotten another infection that just won’t stay away. She’s been off anti-biotics for a few weeks, but we’re going to start another round since she’s started with more congestion and fevers in the last couple of days. We’re not surprised, given that Will, Carter and I are all fighting the same thing. I am surprised that I’ve been able to stay healthy up until now, but given my lack of sleep, it finally caught up with me! And the boys just can’t shake it…I feel like our family alone is keeping the tissue industry afloat!

Despite the constant runny noses, Carter and Will are as busy as ever, and living up to those “terrible twos” expectations. They are sweet, kind-hearted little boys (and use their manners without prompting – yea!) but they are definitely figuring out with they can and cannot get away with. And their sleep schedule has been changing…they’re experimenting with new wake-up times; for a while they decided that their day should begin at 5:45am. Thankfully this did not last long! Naptime is a challenge since they’ve figured out they can indeed get out of their cribs without bumping their heads (as Mommy always warned), but once they do fall asleep, they sleep for hours. Thank goodness for naptime! Between getting Olivia settled in for the night (which frequently isn’t until 11:30 or 12am) and waking up early with the boys, Eric and I have been exhausted. But it’s always such a joy to watch Carter and Will interact with their sister…the first thing they do in the morning is go into Olivia’s room and say Hi. And they are very involved in her care; they insist on suctioning her, filling up her feeding tube bag, and positioning her using every pillow and stuffed animal in sight (“me do it” is a favorite phrase of both). Yes, constant supervision is required! They’re still enjoying school immensely, as is Olivia. We’re keeping up her schedule as much as possible, and even on her bad days she seems to enjoy visits from her various teachers and therapists. We are so grateful to have great people involved with Olivia who really do their best to make her comfortable and happy.

I’m happy to announce that the Third Annual Olivia’s Walk will be held on May 16th at Tempe Town Lake (same as last year). This is the day before Olivia’s seventh birthday (7 years old!!!), and it would mean so much to us and especially Olivia to have as many of you there as possible to help us celebrate her big day. So please mark it on your calendar, and join us for a just couple hours that Saturday morning. Eric and I feel so blessed to have the love and support of so many people, and to have all of you together showing your support to Olivia would mean the world to us all!

Thank you for continuing to keep Olivia in you thoughts and prayers.
Sincerely,
Christine & Eric

Wednesday, January 28, 2009 6:31 PM CST

Hello friends and family!

Hope the New Year is finding you all happy and healthy. We had a wonderful Christmas week with our family (Nan & Pop and Uncle Mark & Aunt Kathy came in from Michigan), and as always Olivia enjoyed everyone’s company. She was, of course, bright-eyed every time Pop played Christmas carols on the piano for her. With the holidays behind us, we’re back into the routine and keeping as busy as ever. We’ve been fighting never-ending illnesses, but we’re doing our best to keep Olivia from making a trip to the E.R., or worse – be admitted into the hospital. She’s not been herself since well before the holidays, and we’ve been through four rounds of various antibiotics. She’ll be o.k. for a week or so, but then she inevitably goes downhill again. We’re not going to try any more antibiotics; if things get really bad we’ll go to the hospital. But so far we’ve been able to handle everything at home, and since it’s RSV season (and she always gets worse when she’s admitted) we’ll do everything we can here. Even her doctors recommend this. It’s a constant battle to do what’s best for Olivia, but along with our nurses’ help we’re keeping her as comfortable as possible. It is always a possibility that this current condition is Olivia’s new “normal”, in which case we will figure out how best to handle it and move forward…one day at a time! Carter and Will have also been sick for a long time; they are fighting reoccurring ear infections that we’re hoping have just about run their course (fingers crossed). Eric and I have stayed healthy, which is quite amazing given the lack of sleep we’ve been getting lately! But we’ll get through it, and every day we are so grateful for everyone on Olivia’s team who helps keep her as comfortable as possible and out of the hospital.

We’re keeping up Olivia’s schedule as much as we can, so her days are busy with physical therapy, music therapy, in-home school, and services that the school district offers (vision, speech, and occupational therapies). There are certainly days when Olivia sleeps right through her sessions, but most of the time she pulls it together and pays close attention to what’s happening. All of her teachers and therapists are so fantastic and patient with her and she seems to really enjoy the attention and stimulation. Will and Carter are in school as well (actually day care, but they like to call it “school”!), for three hours three days a week. They just love it, and it gives me a little much-needed break. The boys are growing like mad and talking a mile a minute. They definitely keep us on our toes with their two-year-old behavior, but they really are great little guys and they have so much compassion for their big sister. They always talk to Olivia, show her their toys, read to her and give her lots of hugs and kisses – without even being asked! They are so adorable with her, and have been such a blessing to all of us.

Thank you so much for keeping Olivia in your thoughts and prayers. As always we appreciate your support! You all help make this journey easier, and we are so grateful.

Sincerely,
Christine & Eric

Thursday, December 18, 2008 4:29 PM CST

Hello-

Happy Holidays to you all! I hope everyone is enjoying the season. We’re almost all ready for the big day, and counting down the hours until our family arrives from Michigan. Of course, Will and Carter think that Santa will be here as soon as Nan and Pop and Uncle Mark and Aunt Kathy get off the airplane. It’s been so much fun watching them get totally into Santa and Rudolph and all those great things that make Christmas-time so wonderful for kids! And most importantly we are so happy to be able to spend another Christmas with Olivia. She’s been hanging in there; after her third round of antibiotics she seems to be a bit healthier. Thank goodness no E.R. or hospital visits so-far. The boys are getting over another round of ear infections, but it certainly hasn’t slowed them down one bit! If only we could all have the energy of a two-year-old...

Olivia continues to enjoy school, and it always amazes all of us how she is able to pull herself together for her teachers. She can be having a lousy day, and even with a hefty dose of valium in her system, she’ll perk right up and follow what’s going on. She’s done some wonderful hand-over-hand art projects, and on her really good days it seems like she’s even able to control her own movement – ever so slightly, but we’re thrilled! If something she’s interested in is out of her line of sight, she’ll look around for it until it’s placed in front of her. This doesn’t happen every time, but it lets us know she is indeed getting something out of school. Also, we have a new music therapist whose main instrument is the harp. Olivia just melted the first time she heard it, it was so beautiful! Miss Kathryn laid the harp on Olivia’s table so she could feel the vibrations, and she even plucked a few strings with her teacher’s help. We’re so happy she has such wonderful people and activities to fill her days.

We’d like each and every one of you to know how much we appreciate your love and support. Especially around this time of year we are reminded how much our family and friends mean to us. Eric and I feel so blessed by the kindness and generosity that’s shown to us, and most importantly we are so happy to be spending another Christmas with our angel Olivia.

Merry Christmas!
Christine & Eric

Tuesday, November 18, 2008 2:08 PM CST

Hello friends and family!

Wow – I believe this is the longest I’ve taken to update our journal! We have been going non-stop here at the Hoffmann house, and sitting down at the computer for any length of time has been difficult lately. We’ve been fighting a flu virus that we’ve only recently gotten over, and unfortunately Olivia has been struggling with some kind of bug that I think has finally run its course. Fortunately we’ve avoided going into the E.R., but it’s been a very close call a few times. Hopefully she’s out of the woods now! The boys have gotten back to normal and are just as busy as ever. They are in school for a few hours three days a week which has been a life-saver for me…I can actually get caught-up on laundry (at least for a day or two!). And I don’t know what we’d do without Olivia’s two nurses. Fran and Linda are so amazing, and have really helped to keep her out of the hospital. It’s such a relief for me to have their help. We are really blessed by everyone who is a part of Olivia’s team. She has such wonderful teachers and therapists who all really love her and are genuinely concerned about making her life as comfortable and fulfilling as possible.

We’ve had a busy couple of months, including a visit from Nan & Pop to help celebrate the boys’ second birthday in October. And in the beginning of November, Nan and my Aunt Jeanne (Gigi, as all the kids call her) came for a week-long visit, and we celebrated Election Day as well as Aunt Jeanne’s birthday. Carter and Will have grown as attached to Gigi as Olivia…She’s always been one of Olivia’s favorite people, and when she was a toddler playing on her toy telephone, Auntie Gigi was always the person Olivia was calling. It was really special to have her here with us. And now of course we’re looking forward to the family spending Christmas in AZ. In just over four weeks Nan & Pop and Uncle Mark & Aunt Kathy will be here – it does not seem possible that the holidays are that close! The weather here is so warm (still in the mid 80’s!), it feels like it’s only the end of October. I don’t know where the time goes.

I promise I won’t wait so long to update the journal next time! I know everyone is so busy, especially this time of year, yet we continue to receive email, phone calls, and guestbook entries that remind us we are always in the hearts of friends and family. Again, we are truly blessed!

I hope you all enjoy Thanksgiving, as we all have so much to be thankful for. Take care and God Bless!

Christine & Eric

Wednesday, September 10, 2008 7:37 PM CDT

Hello-

Greetings from the Hoffmanns! We’ve been busy around our house - Olivia is back into her school routine, which is even busier than last year! She’s been fighting what feels like a never-ending cold since she was hospitalized for viral pneumonia at the beginning of July, but I think she’s finally near the end of it. The amount of congestion she’s producing has definitely increased, but I think this is going to be her new baseline. We’re suctioning a lot more frequently, and as always Olivia handles it like a trooper. The boys have been passing around a cold, and now Will is fighting an ear infection, but so far Olivia hasn’t gotten any worse. And she’s as alert as ever, paying attention to everything going on around her…especially when she’s in school! Olivia (who’s in first grade this year!) has school four afternoons a week (two with Miss Bari and two with Miss Danelle). She also has weekly visits with the school’s vision teacher, and with the physical and occupational therapists. In addition, she is continuing music therapy as well as physical therapy twice a week. Such a busy girl! But I think she really enjoys the activity, and any kind of positive stimulation we can give her is helpful. She has a great team of teachers, therapists and nurses who really care about Olivia and making her days more enjoyable. We are so thankful for all of them.

Will and Carter are doing great, and growing by leaps and bounds. I’ve forgotten how quickly vocabulary develops at this age! They’ve got new words every day, just like Olivia did when she was almost two. The boys really enjoyed their airplane trip to Nan and Pop’s in Michigan last month (and they were actually quite good on the plane…I was more stressed than they were!). We had a wonderful week with beautiful weather at my uncle’s cottage on Lake Michigan, and we were able to see lots of family. Also, my brother and his wife were just here for a week. We had a great time with them, and Will and Carter are still taking about Uncle Mark and Aunt Kathy. They still love to spend time hanging out with their big sister, reading books to her and putting on musical puppet shows. It’s so sweet watching them interact with her…and she almost always brightens up when they’re around!

Hope you are all enjoying this busy time of year. Thanks as always for your support. We appreciate you keeping Olivia in your thoughts and prayers!

Sincerely,
Christine & Eric

Tuesday, July 29, 2008 12:42 AM CDT

Hello everyone!

Hope you are all doing well. Here it is almost August – where does the time go? Olivia has been home from the hospital for just over two weeks, and slowly but surely I think she’s getting back to “normal”. She was hospitalized in the PICU for pneumonia and breathing difficulties, but we were able to come home after only four days. I think we caught it early enough and were able to get her through it with really aggressive respiratory treatments. Since we’ve been home she continues to battle lots of additional congestion, most likely because she’s still getting over the infection (hopefully she’ll return to her baseline, and this won’t be how she is from now in…). Without any immune system, it takes her much longer to recover. And I brought a cold home from the hospital, which of course Carter and Will picked up, so Olivia was affected by that, too. But we’re looking forward to her getting past this…she’s been so congested and much sleepier than usual. We’ll all be happier when she’s a little brighter and awake more often!

Other that dealing with all of the sickness around here, we’re doing well. The boys are wonderful with Olivia, and their newest thing is climbing up on her bed and reading books to her. They are so sweet and it always amazes me that they are so gentle with their big sister. It’s like they’ve always known that Olivia needs to be treated in a special way. And Olivia does respond to them most of the time…she opens her eyes and tries to look at them. It’s just beautiful!

I am looking forward to a five-day trip to Michigan with Will and Carter in August. We can’t wait to get out of the heat, see family and friends back home and hopefully enjoy some beautiful weather at our relatives’ cottage on Lake Michigan! Eric will stay home with Olivia; she’ll be in good hands with Daddy and with her nurses. And she’ll be back in school! She starts first grade in a couple of weeks, and we’re so happy that both her kindergarten teachers will be back this year. They are so good with Olivia and we’re really looking forward to getting Olivia back into the school routine. I’m sure she is, too.

As always, thanks for keeping Olivia in your thoughts and prayers, especially while she was in the hospital. Your support keeps us going and helps us get through this journey. We are so fortunate to have such caring people in our lives!

Thank you again,
Christine & Eric

Friday, July 11, 2008 3:20 PM CDT

Hello friends and family-

After spending the last few days in the PICU at Phoenix Children’s Hospital, it looks as if Olivia might be able to go home this afternoon! She has continued to recover from the lung infection; I think because we caught it early enough and were very aggressive with respiratory therapy treatments. It looks like it’s a viral pneumonia, not aspiration pneumonia. That’s good news because it means all of our suctioning and respiratory care at home is keeping her secretions out of her lungs…one of our on-going battles. She has also been struggling with more episodes of her airway becoming blocked. It got to the point where she had to be on her Bi-Pap machine continuously, and the doctors were concerned that she would not be able to keep her airway open on her own. That would have forced us into making a decision on a tracheostomy right away, but fortunately we took her off the machine yesterday morning and she hasn’t been on it since! Apparently she depended on it more because she was struggling with the infection. So we’re able to go back home today and hopefully return to our routine of using the Bi-Pap only when necessary. We still have to make the trach decision sooner rather than later, because this will inevitably happen again, but at least we have a little more time.

We’re anxious to get back home and see Will and Carter. It’s been since Tuesday afternoon, and I can’t wait! They’ve been having a good time at Aunt Kate’s house, but I bet they’ll be happy to be home and see “O” again.

I’ll keep you posted on how she does after we get home and settled back in. Thank you so very much for all of the support and prayers while we’ve been in the hospital. It helps to see all those words of encouragement and know that so many people are pulling for Olivia!

Thanks again,
Christine & Eric

Thursday, July 10, 2008 0:24 AM CDT

Hi everyone!

Unfortunately I’m writing this entry from Phoenix Children’s Hospital, where Olivia was admitted yesterday evening. We came in after Olivia had a really rough day of congestion that looked infected and lots of episodes of airway restriction. Usually we can get her out of those situations with position changes, or if they continue, her Bi-Pap machine (it assists her breathing by pushing air in and out, keeping her airway open). When our usual tricks weren’t working, we decided to take her in. A chest x-ray showed pneumonia, but nothing too severe, and she has already shown lots of improvement since we started antibiotics 24 hours ago. And the comforting thing is that she seems like she’s feeling ok.
She hasn’t had a temp and hasn’t been agitated like she usually is when she’s really sick. So at least she’s resting comfortably. The big question seems to be what to do about her airway closure. The doctors have her on continuous Bi-Pap; hopefully she needs it constantly only because she’s fighting an infection. Our goal is (once she’s over this illness) to only use the Bi-Pap at night and occasionally during the day. It’s not a machine that can be used 24-7. Tomorrow (if she continues to do well with fighting the pneumonia) we’re going to start cutting back the strength and usage and see how she tolerates it. We’ll take it slow, because we won’t really know how she does without it until she’s really over her infection. If it doesn’t look like she’ll be able to keep her airway open on her own, Eric and I will have to decide if we want her to have a tracheostomy or not. It’s a decision we’ll have to make eventually, but it might be sooner rather than later. Hopefully she transitions off the Bi-Pap smoothly which will buy us a little more time to make our decision.

Other than this latest development, we’ve been having a good, relatively normal summer. Olivia has really been enjoying the pool, and since Carter and Will also love to swim (they’re already jumping off the diving board!), we’ve been spending a lot of time in the pool. Those little guys are just amazing, and their vocabulary increases almost daily! The keep us laughing, that’s for sure. It’s hard to be away from them while I stay in the hospital with Olivia, but they are in very good hands and having a great time at my sister’s house (it's like a second home to them). We’re so lucky to have lots of help!

Thanks for keeping Olivia in your thoughts and prayers. Your support is appreciated and truly helps us get through this!

Christine & Eric

Wednesday, June 4, 2008 1:22 AM CDT

Hello everyone!

Hope this finds you all well and enjoying the beginning of summer! We’re doing well, and Olivia is hanging in there and staying relatively healthy. She had a great sixth birthday celebration, and we’re thankful that so many of you helped make it very memorable! Olivia’s Walk was a huge success; it was bigger than we expected, and we raised lots of money for the MLD Foundation and Olivia’s Fund. It was really a special morning, and the best part for me was seeing everyone gather around Olivia and sing “Happy Birthday”. We’re grateful to everyone who participated in the Walk, either by being there or donating, and we’re very thankful to the folks who volunteered and helped make it run so smoothly. Sometimes people comment to me that I always seem so upbeat and positive despite all that we are dealing with. And I can honestly say that seeing all of those people at Olivia’s Walk (lots of friend and family, as well as plenty of people who we didn’t know!) really helps to boost our spirits and give us the strength and encouragement that help us keep going and have a positive attitude. It truly was an amazing event, and we can’t wait to do it again next May!

We’re getting into our summer routine, and while it’s a bit quieter than the school year, we’ll keep Olivia busy and as happy as possible. We’ve got therapy twice a week (and the pool is almost warm enough!) as well as Music Therapy. And Will and Carter definitely keep us busy; hopefully Olivia enjoys the liveliness that they bring into our world! Those boys are really amazing, and it’s so fun to watch them communicate more and more with their big sister. They’ve begun to call her “O”, and one of the first things they do every morning is go into her room to say Hi, give her a kiss, or maybe show her something they think she might like (frequently it’s a shoe or a kleenex, but their intentions are good!). It’s busy around here, but we’re enjoying every moment (or at least trying to!). We are so blessed with our three beautiful children!

Thank you again to all of you for continuing to keep Olivia in your thoughts and prayers. We really appreciate your support!

Christine and Eric

Thursday, May 15, 2008 0:25 AM CDT

Hello friends and family!

Wow, are we ever excited about Olivia’s sixth birthday! It’s this Saturday, and we’re so proud of our big girl. We’re in the midst of a week-long celebration; the highlight being the Second Annual Olivia’s Walk on Saturday. Nan and Pop arrived from Grand Rapids this morning, and Uncle Mark and Aunt Kathy will be here Friday morning. We’ve got lots of activities planned, and so-far Olivia seems to be enjoying it all! In addition to celebrating her birthday, Olivia is graduating from kindergarten (she passed with flying colors!), so we’re having a graduation party for her with her teachers. Miss Bari and Miss Danelle have been absolutely wonderful with Olivia, and thankfully they’re both coming back next year to be her first grade teachers. But we’re not taking it too easy this summer; we’re planning some extra-curricular fieldtrips with Miss Bari, and Olivia has started Music Therapy once a week. She’s helped her music teacher strum her guitar and play a hand-drum! She really seems to enjoy it. And we have a new physical therapist for the summer (Melissa is on maternity leave), and soon the pool will be warm enough for therapy in the water. Hopefully she’ll like that as much as she has in the past.

Overall Olivia’s health continues to be about the same. Congestion and her airway periodically closing up are the daily issues we deal with, but we’re still hanging in there and have avoided any major illnesses lately. And of course she receives quality care from her two fantastic nurses who go above and beyond when it comes to taking care of Olivia! It is absolutely wonderful and such a relief to me having reliable, capable nurses helping out. For the most part we have help six days a week, and it truly helps take some of the load off of us.

Thanks as always for all of your support. It is so encouraging to know that so many people are pulling for Olivia. We are so blessed to have this amazing little angel be a part of our family…she truly is a gift! Happy Birthday, Olivia!

Sincerely,
Christine & Eric

Friday, April 4, 2008 1:16 AM CDT

Hello everyone,

Greetings from the busy Hoffmann household! We are doing well, and staying relatively healthy. We had a great visit with my parents last month, and the boys really bonded with Nan and Pop over the three weeks they were here. And of course Olivia really enjoyed their visit, too. She spent lots of time with Pop at the piano. Now we’re counting down the weeks until their visit in May, along with Uncle Mark and Aunt Kathy. They’ll all be in town to help us celebrate Olivia’s sixth birthday! We are so thrilled and proud of her…six years old is a big milestone! She is such an amazing little girl.

Olivia has remained relatively healthy the past few months. We‘re still dealing with the congestion on a daily basis, and our newest hurdle is Olivia’s airway periodically becoming restricted. We’re usually able to open it by changing her position, but more and more often (mostly during the night) we’re depending on the BiPap machine which helps her breathe. I think we’re moving into the next phase of her journey, but as long as we can deal with these situations without having to consider a trach just yet, we’re happy. As always, she handles everything in such a brave, graceful way, and we learn a lot from her every day.

Olivia absolutely loves her kindergarten days, and she always amazes us by pulling herself together for school, even when she’s had a lousy day. She’s beginning to receive a few more services through the school district, such as a weekly visit from the school’s vision specialist, who will work with Olivia to try and improve her tracking abilities. Ultimately our goal is to have Olivia be able to clearly make choices by looking at a particular object (as in, “look at the book if you’d like to read, or the cd if you’d like to listen to music”). Some days it seems like she’s able to do this; other days it’s a struggle. We’ll also have regular visits with the school’s speech therapist to work these same types of goals. We’re also arranging for a Music Therapist to meet with Olivia on a weekly basis. I’m not exactly sure what that will be like, but I know if it has to do with music, Olivia will enjoy it!

Carter and Will are almost a year-and-a-half, and they are busy, busy, busy! It’s just amazing how they’re personalities are developing (and are very different from each other!). Will is very meticulous; everything must be in its place, and if you don’t have your shoes on, he will find them, bring them to you, and stand next to you until you put them on. He studies people and situations before he gets involved, and once he does, he gives you all his love and attention. Carter just jumps into any situation feet-first, and is more than happy to give a total stranger a hug and kiss. They are so adorable together, and fortunately haven’t started much sibling rivalry yet. And of course they love their big sister, and frequently give her lots of hugs and pats on her hands and head. It’s so sweet!

Thank you for all of your continuing support. Please keep Olivia in your thoughts and prayers, especially for comfortable, pain-free days. We are so blessed to have such a great support system, and every day we appreciate our family and friends!

Christine & Eric

Monday, February 25, 2008 4:14 PM CST

Hello friends!

Hope this finds everyone doing well and surviving the winter. We’ve had some unusually cold and rainy days here in Arizona the past couple of months, and we’re really looking forward to warmer weather so we can get out of the house and soak up some sunshine! Of course, along with crummy weather comes sickness, and we’ve had our fair share here. Will and Carter have been passing a cold/ear infection back and forth for a couple of weeks, but finally it seems like we’re nearing the end of that. Fortunately Olivia has not gotten any of their illnesses, but we were in the emergency room with her one evening last week; she had a urinary tract infection which was causing her heart rate and temperature to sky-rocket. It was a blessing that it wasn’t anything more serious…we were able to come home that night and she’s getting a strong antibiotic to treat it. We definitely need to stay out of the hospital, this time of year especially. RSV season is in full-swing and Olivia just doesn’t have the immune system to fight off all the germs floating around the hospital. Keep your fingers crossed that she continues to stay relatively healthy, especially through the next couple of months!

Olivia is continuing her routine of physical therapy twice a week, and kindergarten here at home four days a week. She just loves school, and we are so blessed to have two wonderful teachers who do so well with Olivia. Unfortunately our nursing schedule has been quite erratic…just before the holidays, Nurse Sue (who was with us for over two years!) moved away, and since then we’ve been trying to find nurses to fill the schedule. At this point I do need help five full days a week, but because of a nursing shortage it’s been hard to find help. We have one nurse who is helping out as much as possible (she’s only supposed to be here one day a week, but has been picking up more shifts as her schedule allows), and hopefully soon we’ll find one or two more to fill in the gaps. Nurse Linda has been just wonderful to have on Olivia’s “team”, and I really think Olivia loves when Nurse Linda takes care of her. They read books, listen to music and watch movies together…all that fun stuff that mommy doesn’t have much time for! The days when I don’t have help are really busy, and can be very challenging especially if Olivia isn’t doing well. The boys really are good little guys, but they are 16 months old now, and super busy, as most toddlers are! And lately it’s been a little more difficult since they’ve been so under-the-weather. Here’s the great news…my Mom and Dad are arriving this Wednesday, and they’ll be here for three weeks! They aren’t staying with us the whole time, but they will be a huge help taking care of Will and Carter. Thank goodness for grandparents! We really are looking forward to their visit, and I know Olivia is excited to see them again. Long walks outside, Pop playing the piano for her...all those wonderful things that Olivia loves!

Thank you for all of your continuing support. Even though I don’t have time to update this journal nearly as often as I’d like, I do check the guestbook frequently and it’s always so nice to read the kind words of encouragement from all of you! Your thoughts and prayers are always appreciated.

Sincerely,
Christine & Eric

Tuesday, January 8, 2008 1:52 AM CST

Hello and Happy New Year!

Greetings and best wishes from the Hoffmanns for a wonderful 2008! We survived the Holidays beautifully and hope you all did as well! And here we are starting another year with our amazing Olivia…we are so grateful. We really had a wonderful week with my family visiting over Christmas, and I think Olivia enjoyed it too. Of course, her favorite was when Pop played Christmas carols on the piano for her. My parents commented a number of times how much more alert Olivia was, and how she seemed to be paying much more attention to everything that was going on. That’s a good sign that her new anti-seizure medication is indeed less sedating. We are very encouraged by that!

Overall Olivia’s health has been about the same. We still fight the congestion every day, and some days are better than others. Occasionally she can produce a good cough, but more often that not she struggles to get the congestion out, and it really takes its toll on her. But she’s always such a fighter, and rarely gets upset. And we know she can still let us know when something bothers her…the other day, Carter got a little too excited while giving her a hug and pulled on a bunch of her hair. She definitely let out a good cry! Those pesky little brothers! But they really do love her and are (usually) very aware of the need to be gentle around her. They spontaneously give her kisses and hugs, and it’s the cutest thing. Will and Carter are growing like mad, and are the busiest little guys! They keep me on my feet from morning ‘til bedtime, and by then I’m wiped out! Thank goodness we have a nurse to help with Olivia five days a week…that has been such a blessing.

Now that the holidays are over we’re getting back into the routine…Olivia has Kindergarten four days a week (an hour each day in our home) as well as therapy twice a week. She still loves “going to school”, and she has been doing the most wonderful art projects (with Miss Bari’s help). We’re so happy to have beautiful artwork to proudly display on the fridge! With her other teacher, Miss Danelle, Olivia focuses more on occupational therapy, and we continue to be encouraged by the slight movements that she appears to be making on her own. Olivia was evaluated by the Assisted Technology team, but unfortunately decided to nap during their visit. But they took our word for it, and are putting together some things for Olivia that she can manipulate on her own (or at least try to). We continue to be cautiously optimistic!

Again we hope you all had a great Holiday. I meant to send out greeting cards as always, but I couldn’t quite get my act together! We had the picture taken (it’s posted on the website), but that’s as far as I got…there just aren’t enough hours in the day! Please know that we truly appreciate all of the support and encouragement we receive. The Christmas season reminded us again of how blessed we are to have such an amazing family. That hold true for all of our friends as well. I honestly don’t know how we would get through this journey without all of you. Thank you!

Christine & Eric

Tuesday, December 4, 2007 1:49 AM CST

Happy Holidays!

Hope you are all doing well and enjoying the season. We had a wonderful Thanksgiving here at our house, spending the day with family and some close friends. And now we’re into Christmas full-swing! It’s exceptionally warm here in Arizona, but we’re getting into the spirit even so. Olivia’s holiday social calendar is very full, and we’re looking forward to her enjoying her upcoming events! This week, Olivia’s sitter is taking her to Build-a-Bear Workshop, and they are also having a “sleepover” this Friday night (Eric’s company holiday party is out-of-town in Prescott, overnight, so Chrissie will spend the night with Olivia). And one night next week we will visit a railroad park, decked out as Santa’s Christmas village, for our school district’s event for kids with special needs. We’ve got a few other happenings planned as well; we’re keeping our fingers crossed that Olivia has lots of good days so she can be a part of it all. And my family arrives on the 20th for a week. We can’t wait to see Nan and Pop and Uncle Mark and Aunt Kathy, and celebrate Christmas with the whole family!

Olivia has been holding her own lately. Her biggest issue is still congestion; it gives her such a hard time and sometimes we struggle for hours to try and get one good cough to clear her, at least temporarily. And all that agitation leads to gagging, vomiting, posturing, etc. But it’s always so amazing to us how much of a little trooper she is through all of it. She rarely cries-usually only when we are moving her. We’re adding more medical equipment that will hopefully help (including a machine that will create a cough for her!), and continuing with physical therapy twice a week. Soon Olivia will have a soft brace that she will wear during the day to help straighten out her spine. As many children with leukodystrophies do, she has a severely curved spine that, if left untreated, could eventually constrict her lungs. Please keep praying for good days that are calm and as pain-free as possible for Olivia…she deserves them!

Our big kindergartener now has “school” four days a week, and we think she’s really happy about that! Miss Bari comes for two days, and focuses on the academics (they are just wrapping up a big ABC project), and our new teacher Miss Danelle comes the other two days, and focuses more on physical aspects. Last week, on the first day that Miss Danelle was here, Olivia seemed to make some voluntary controlled movement (with Danelle holding her arm in place, Olivia pressed down on a button that made the toy light up and play music). That is a huge thing for Olivia and we never expected that she might still be able to do something like this! What’s really exciting are the possibilities for communication through a yes/no board or something like that. Bari has arranged for the school district’s Assisted Technology department to meet with us so see if there is some device that might work for Olivia. Wouldn’t that be amazing if we can find a way for her to communicate? We are being cautiously optimistic!

Carter and Will are absolutely fantastic. They are so aware of Olivia, and even at the mention of her name they blow kisses to her. It is so sweet, and to see them snuggle with her is priceless. She seems to love it, too. Those boys keep us so busy; now they are walking quite well and are into everything. There is never a dull moment around here! One huge blessing that has helped me tremendously is the addition of nursing hours…Nurse Sue is now here Monday through Friday from 8 to 5! Even so, there never seem to be enough hours in the day. But we’re totally enjoying all three kids, and we’re so thankful every day for the great energy that Will and Carter give to our family, especially Olivia.

Thanks as always for your continuing support. We hope for healthy and happy holidays for Olivia and all of you as well. God bless!

Christine & Eric

Tuesday, October 16, 2007 4:24 PM CDT

Hello friends,

So sorry for the delay in updating the journal, but it seems like the days keep getting busier and busier! Will and Carter turn one on Thursday (!!!), and they certainly are acting their age. They are into everything, all over the place, and just about walking. They are as happy as ever, and still have those wonderful, laid-back personalities that we are so thankful for. Lately they’ve become even more aware of Olivia, and love to blow her kisses and give her hugs. Sometimes they get a little too excited and pull her hair, but they’re learning about being gentle with her, and it’s the sweetest thing to see them go up to her and pat her hand or foot. She loves it! We can’t wait for my Mom and Dad’s arrival on their birthday to help us celebrate. They haven’t been here since Olivia’s birthday in May, so we are long overdue for a visit. I know Olivia is really looking forward to seeing them, too...She holds her breath and closes her eyes whenever we talk about Nan and Pop coming on the airplane. We’ll have a great birthday weekend!

Olivia has slowly been getting back to normal since we’ve been home from the hospital. We had a visit with her pulmonologist last week, and he told us that she is most likely still getting over the flu (it takes her longer since she has no immune system), and that’s why she has so much more congestion than she has in the past. We definitely have been using oxygen and suction far more than we ever have, but hopefully that will decrease as she continues to get better. Recently we’ve had more good days than bad, and we’re cautiously optimistic that this will continue. Thank you again for all of the support that we received while we were in the hospital.

Kindergarten continues to be one of Olivia’s favorite activities, and it’s amazing how she can pull herself together, even in the middle of a difficult day, and have a great session with Miss Bari. They’re working through the alphabet and numbers, and Olivia really seems to pay attention, respond to her teacher, and thoroughly enjoy it. We’re also continuing physical therapy with Melissa, and we’ve been able to get Olivia on to her tummy for up to an hour. This is really a big thing for her; in the past it’s been quite painful for her to be in this position (it’s beneficial for her lungs and breathing). Even though p.t. isn’t Olivia’s favorite thing, she doesn’t cry nearly as much as she used to, and she loves to see Melissa. And we have a new friend on Olivia’s team…we’ve hired a pre-med ASU student to take care of Olivia on various evenings and weekends, which will give Eric and me a chance to get out more. We’re really excited for Chrissie to get to know Olivia, and we’re sure that Olivia will enjoy being with her. We know she’s going to be great because not only is she very qualified, she’s from Grand Rapids! Small world!

Speaking of getting out, we’ve been able to take advantage of our gorgeous weather and Olivia’s good days lately. This past weekend we had a picnic with some of our friends at a park with a train, and Olivia (in her Dad’s arms) was able to go for a ride on it! She even gave him a smile; something we hadn’t seen in a long time. And the weekend before that we got together with the gang to see our good friend Molly who was visiting from G.R. Two big outings with all three of our children…a huge treat for me and Eric as well as the kids!

Thank you again for all of your support. We are so blessed to have the family and friends that we do, and we are really grateful. Please continue to pray for Olivia to have more good days, and keep the positive thoughts coming her way!

Eric & Christine

Friday, September 14, 2007 12:38 AM CDT

Hi everyone,

We’re home!! Olivia came home from the hospital on Wednesday night, and she’s been resting comfortably in her own bed. Since the primary issue was the flu, and the only way to treat that is with lots of rest and hydration, the doctors agreed with us that the best place for her to be is out of the hospital. Plus she’s very contagious, and she always seems to get even sicker when she’s there. We’re continuing to treat the urinary tract infection with antibiotics, but by now it has most likely cleared up. They are not saying for sure that she does or does not have pneumonia; most likely the congestion in the lungs is a result of the flu. Olivia has basically been sleeping since we got home, and occasionally spikes a temperature, but these were both things the doctors told us would happen until she’s really out of the woods. Hopefully she’ll be back to normal soon. We’ve got a new machine (called a BiPap) that is helping her breathe easier at night by using a force of air to open up her lungs more than she’s able to. So far it’s working well, and she doesn’t have to work so hard to breathe. She’ll continue to use this every night, and eventually as things get worse she’ll be on it more frequently. I know I say this all the time, but Olivia really is such a brave little girl…even with this big mask over her face all night, she doesn’t act as if she minds. Such a brave little girl!

Now Will and Carter are both under the weather, and most likely they have Olivia’s flu. So we really have our hand full here getting Olivia back to normal and taking care of two sick little boys. At least Eric and I are still feeling good…Never a dull moment at the Hoffmann House!

We had a really great visit with my brother Mark and his wife Kathy last week. Even with Olivia not feeling well, I know she really enjoyed having them here. She was admitted into the hospital the day before they flew back home to Grand Rapids, so fortunately she did not miss too much of their visit. And as always, Uncle Mark and Aunt Kathy were such a huge help with taking care of all three kids. It is always such a treat when they visit, and we’re looking forward to their next AZ trip at Christmas.

I really can’t say thank you enough for all of the support we’ve received over the past week. The emails and guest book entries really cheered us up while sitting in the hospital. We appreciate all the prayers and positive thoughts. Please keep them coming…we want Olivia back to normal as soon as possible!

Thanks again,
Christine & Eric

Tuesday, September 11, 2007 11:17 PM CDT

Hello!
This is Katie, Christine's sister, writing with today's update. Olivia was diagnosed today with influenza. This, along with the urinary tract infection, explains her temperature and heart rate fluctuations. Since the flu is viral in nature, the course of treatment will be continued fluids and rest. To help clear the congestion in her lungs, Olivia has been having CPT three times a day, which involves percussive chest and back thumping. In addition, she has really benefited from a breathing device that opens her lung sacs and makes it easier for her to get deeper breaths. The doctors have already ordered one for her to use at home, which is great news. Olivia has been sleeping most of the time, and has been having good nights as well. Also, she's not having gastrointestinal issues this time around, and is tolerating her regular feeding schedule very well. Because of the extremely infectious nature of the flu Olivia has, she's been moved out of the pediatric intensive care unit and into isolation, so unfortunately she can't have any visitors. However, Christine and Eric remain in good spirits and are hopeful Olivia will be able to go home soon. Thanks to everyone for your prayers and concern - Christine will post a new message very soon with updates.

Sunday, September 9, 2007 10:59 PM CDT

Hello,

Unfortunately I’m writing this entry from Phoenix Children’s Hospital, where Olivia was admitted yesterday with pneumonia and a urinary track infection. She had been fighting a head cold the last couple of weeks, and we thought she was out of the woods. We took her into the E.R. because her temperature and heart rate had been up, and we were hoping for something manageable that wouldn’t require admission. But the chest x-ray showed lots of junk in her lungs, and so here we are in the Pediatric Intensive Care Unit. Olivia actually had a really good night, and was even off oxygen for some of it, and we kept her fever down. Her x-ray early this morning showed that she’s a bit clearer; still full of stuff, but better that it was yesterday afternoon. They were talking about moving her out of PICU, but she had an episode this afternoon where her oxygen levels dropped quite low and her temp went up. We got it under control, but because of that, she’ll stay where she is a bit longer. That’s fine with us, because in the PICU we have our own nurse and a private room…much quieter and she’s less likely to be exposed to other infections. The treatment plan is heavy antibiotics and respitory therapy, and hopefully we’ll get this licked soon. Olivia has been surprisingly quiet and comfortable; not at all agitated, seizuring or vomiting. We’re thankful for that. And we’re in such good hands here at PCH…everyone just loves Olivia and takes extra-special care of her!

On a happier note, Olivia began Kindergarten a couple weeks ago, and she absolutely loves it. Her teacher comes to the house two times a week, and they work on all sorts of great things like learning the alphabet and numbers. Even when Olivia is having a tough day, she pulls it together for school, and hasn’t missed one day yet…she’s just amazing.

Will and Carter are doing fantastic. Despite the awfulness of teething and all that goes with it, they continue to be such happy little guys with wonderful, warm personalities. Actually, I guess they’re not really so little anymore…they are getting really close to walking! They are such a blessing and seeing those smiling faces is the best thing in the world.

Thank you for all of your support and prayers, especially while we’re dealing with this sickness. We’re hoping and praying for a quick recovery and that Olivia stays comfortable and as pain-free as possible. I will update this journal as frequently as possible, so please keep checking back for news. Again, we really appreciate your support.

Sincerely,
Christine & Eric

Wednesday, July 18, 2007 3:22 PM CDT

Greetings!

Hello from the Hoffmann family. Hope everyone is happy and healthy. We are doing well and trying our best to keep cool in the AZ heat! It’s amazing that it is already mid-July…doesn’t it go fast?!

Olivia is hanging in there, and we are cautiously optimistic that we have found a new medicine that is helping her out a bit. We’re trying a different anti-seizure med that seems to be keeping her agitation episodes under control. What we thought were seizures are most likely major muscle spasms that take over her whole body (sort of like a huge, painful charlie horse, I’m guessing). We had been giving her a lot more valium in recent months, but in the past two weeks with this new med, we’ve been able to cut the valium way back. If she continues to do well, we will slowly wean her off Phenobarb while increasing the Keppra. Our other hope is that she will be more alert than she currently is (Phenobarb is really sedating), while being comfortable and as pain-free as possible. Of course this doesn’t do anything to help her congestion, which is an on-going problem, but at least when she has huge coughing and gagging/vomiting spells, it doesn’t trigger seizures and spasms nearly as much. We’re keeping our fingers crossed.

To beat the heat we’ve been taking the whole family in our pool as much as we can. Will and Carter just love it, and Olivia seems to enjoy it also. She usually gets really relaxed and we’re able to do some good stretching and movement that we can’t otherwise do. And we’re still doing pool therapy with Melissa, and then Olivia gets a really major workout! Other than going in the pool, we’re hanging out as much as possible in-doors to stay out of the heat. Olivia’s body has a hard time regulating its temperature, so it’s just easier and more comfortable for her if we minimize her exposure to the warm temps. But before we know it, we’ll be outside for walks again!

Carter and I had a great visit to Michigan last month, and we were able to see lots of family and enjoy the beautiful weather. Carter went swimming in Lake Michigan for the first time, and of course he loved it! I’m going back to Grand Rapids in September with my sister, and we’ll take both boys with us on that trip. And I was also able to get away recently to Vegas for our friends’ wedding, which was so much fun. I might not leave the house for days on end, but when I do, I certainly make up for lost time!

Thank you to everyone for your continuing support and encouragement. Please continue to pray for Olivia’s comfort and for as many “good days” as possible. We appreciate everything you all do for our family.

Take care,
Christine & Eric

Saturday, June 16, 2007 3:17 PM CDT

Hello family and friends,

Happy summer! We’re definitely feeling the heat here in Arizona…thank goodness for air conditioning and swimming pools! Hope you are all doing well and enjoying this wonderful time of year.

We’d like to extend a big, huge THANK YOU to everyone who helped to make Olivia’s Walk a big success! It was so great to see so many familiar faces as well as lots of new friends. The highlight for me was everyone gathering after the Walk to sing “Happy Birthday” to Olivia…we still talk about that and her eyes always brighten up. It certainly was a fantastic morning, and we raised lots of money for the MLD Foundation and Olivia’s Fund. And we were so happy to have Dean and Teryn Suhr, the founders of the MLD Foundation, join us from their home in Portland, OR. It was such a pleasure to get to know them over the weekend. That was the first time we’ve met another MLD family, and it was really good for us to be able to share and learn from people who are also going through this journey. It was such a positive weekend, and at this point we’re planning on making Olivia’s Walk an annual event. So we’ll see you all again next May!

As I mentioned, Olivia had a birthday and is now a big five-year-old! And is she ever getting big! She definitely is getting taller (she takes after her Dad!) and her doctors are very happy with her weight. She looks really healthy, and of course is such a beautiful girl! She continues to have more difficult days due to the congestion which triggers the seizure activity (which aggravates the vomiting…it’s a vicious cycle!). Even though we’ve had some close calls, we’ve been able to keep her out of the hospital and get things under control at home within a few hours of each episode. She still has good days, and lately she’s been sleeping a lot more when she is feeling good. That’s ok; as long as she’s comfortable and relaxed, we’re all happy. We’ve begun pool therapy again, and Olivia seems to enjoy it like she has in the past. It really helps to loosen her up and get some good stretching. Olivia has “summer vacation” until the beginning of August, so our wonderful days with her teacher Miss Evalyn are unfortunately over! And we were really sad to hear that Miss Evalyn is retiring. She was so wonderful with Olivia, and we will really miss her.

Will and Carter are just wonderful, and they are growing by leaps and bounds! They are both crawling and “talking” up a storm. They have such easy-going, laid-back personalities, just like Olivia, and they are such a pleasure! We are so thankful that they are such happy little guys, especially when Olivia needs extra attention. Even though they are so easy, they are busy, like most 8-month-olds, and so we’ve hired a family friend who’s in high-school to help me out a couple days a week. Kate is wonderful to have around with the boys, especially when Olivia is having a bad day. And Olivia’s nurse Sue comes twice a week, so with the extra help, my load is lightening up a bit. Our three kids definitely keep us going non-stop…but we love every minute of it!

I am heading back to Grand Rapids with one of the boys for a long weekend, and we’re looking forward to seeing family and enjoying some cooler weather. We’ll spend a couple days at Lake Michigan, which is my most favorite place to be in the summer. Olivia and one of the boys will stay home in the very capable hands of Daddy, and have an entire weekend of Daddy-time. This usually involves him building a “fort” in Olivia’s room where they watch movies and sleep in their sleeping bags. She loves it!

Thanks again to everyone who participated in Olivia’s Walk, including everyone who sent donations. We were again reminded of all the people who support and love Olivia. We are so blessed to have so many great people surrounding and supporting us. We couldn’t do this without you!

Christine & Eric

Tuesday, May 8, 2007 5:56 PM CDT

Hello!

Hope this finds everyone doing well and enjoying Spring! Hard to believe we’re this far into May…time goes so fast! I’m so happy to say that Olivia’s fifth birthday is just around the corner, on May 17th! What a milestone! We are so thrilled that she has made it this far, and we’re looking forward to a big celebration. She never ceases to amaze us; even as the days get more difficult, she is so patient and rarely cries or seems upset. This little girl has taught us so much about peace, patience, and endurance in her five years. She truly is amazing.

Hopefully you’ve all heard about our upcoming fundraiser, Olivia’s Walk. It’s a 5k walk/run that will raise money for Olivia’s Fund as well as the MLD Foundation. They continue to do wonderful things for the MLD community, including support for families and promoting research for treatments and a possible cure. This is such important work, and we want to do whatever we can to help them. It is so critical that a cure is found so other children, adults and their families do not have to go through this awful journey. Please consider joining us for the Walk; it’s coming up on Sunday, May 20th, and you can find all the details and a registration form by clicking on the link above. If you can’t be with us that day, please consider giving a donation (go to the same link to do this). Anything you can do is greatly appreciated! We’re really excited about this event, and we chose this date to tie it in with Olivia’s birthday.

Olivia continues to have more and more difficult days. Her congestion keeps getting worse, which triggers seizures because of coughing and gagging. Because we’ve made ourselves become experts on taking care of her at home, we’ve fortunately been able to avoid going into the hospital. We continue working with her doctors to try to alleviate the congestion, but we’ve had no luck so far. I’m sure it’s probably the natural progression of MLD, but we’re not going to give up just yet! It’s so important to find anything we can do to make her more comfortable.

We are continuing physical therapy, and soon we’ll be able to start pool therapy. Olivia always enjoyed this and gets really relaxed in the pool, so we’re hoping she benefits from it again this year. And Olivia is still “going to school” two days a week. Miss Evelyn comes to our house and works with Olivia on all sorts of great things. They listen to music, read books, have science lessons, and do crafts. We have the most wonderful pictures and projects that Olivia, with Miss Evelyn’s help, has colored, written, cut and/or glued. I never thought I would have such beautiful artwork! I know Olivia really enjoys her time with her teacher, and it’s amazing how, even if she’s having a challenging day, she always seems to pull herself together for school. She really is something else.

We’re looking forward to another visit from Nan and Pop; they’ll be here next week to help us celebrate Olivia’s birthday and participate in the Walk. We hope to see you at Olivia’s Walk...please join all of us, including Olivia, for a great cause!

Thank you as always for your ongoing support. We appreciate the words of encouragement and generosity that we continue to receive. We are so fortunate to be surrounded by the most wonderful friends and family.

Sincerely, Eric & Christine

Monday, April 2, 2007 8:36 PM CDT

Hello everyone!

Happy spring from Arizona, where it’s getting warmer by the day. We had a really busy March with visitors. My parents were here for two weeks, during which we had some important events. On the 18th, Will and Carter were baptized at our church. Many of our friends and family were there, and most importantly, Olivia was able to be right up in front with the boys. She was a big part of the service, and seemed to really enjoy what was going on. It had been well over two years since Olivia had been to church, so that morning was really special for everyone. During Mom and Dad’s trip here, Olivia got to go on several walks with her Pop, and he also played the piano for her. Also, we spent time with Great-Aunt Betty and Uncle John, and Great-Aunt Annette. They made a side trip to Phoenix before joining us in Las Vegas for Uncle Mark’s wedding. Olivia stayed home with her nurse, Sue, while the rest of us flew to Vegas. Now “Aunt” Kathy is officially Aunt Kathy!

Olivia recently started homebound schooling with a teacher from our local school district. Miss Evelyn comes to the house two days a week for an hour each time. The first time she was here, she taught Olivia a “science” lesson on birds and birdsongs. She also reads books to Olivia, plays music, and does some light occupational therapy. Olivia really enjoys “going to school.” Overall, we still have more good days, but the challenging ones are increasing due to more seizure activity and congestion. We’re guessing that we have shifted into another phase, in which Olivia is struggling more with her symptoms. We haven’t had to take her to the hospital yet; we’re still able to manage her discomfort at home, which is always a good thing. Despite these really difficult days, Olivia still is so patient and serene, and she rarely even cries.

Will and Carter are changing and growing so fast, it’s hard to keep up! They’re eating solid food now and like to spend time in their activity centers. Soon they’ll be sitting up by themselves and crawling. They’re already able to roll from tummy to back and back to tummy. They’re both very happy babies, and always laugh when they see their big sister. We are lucky to have such content little ones – it makes things easier, especially when Olivia is having a challenging day.

As always, we are so thankful for your thoughts and prayers. Even though we have our tough days, we feel we’re never alone in this. Happy Easter and enjoy the spring.

Sincerely,
Christine & Eric

Monday, February 26, 2007 4:29 PM CST

Hello all!

Hope this finds everyone doing well. Hard to believe it’s almost March! We are keeping as busy as ever at the Hoffmann house, and Will and Carter are growing like crazy. Olivia is doing pretty good, although her congestion is still an ongoing battle that seems to be getting worse. It is definitely the one thing that causes the most agitation and discomfort for her, and it’s frustrating because we (including her doctors) cannot find a source for any relief. Eventually she will need a tracheotomy, but we’re hoping to put that off as long as possible. Her seizure activity has also increased, but we’re keeping that under control as much as we can with Valium. Despite all of these challenges, Olivia does still seem to be really aware of what’s going on around her, and she seems to pay attention to her brothers frequently. They are four months old now, and they are such happy babies, just like Olivia was. They smile, talk, and laugh all the time, and they love to hang out with their big sister. They always smile really big when they see her, which is so heartwarming. Just this morning, Will was cuddled up in bed with Olivia, and had a long conversation with her mixed in with lots of smiles. Of course I couldn’t understand a thing, but Olivia really seemed to get it, and I think she enjoyed it as much as Will!

This time of year in Arizona means lots of visitors, and we’ve already enjoyed some wonderful weekends with family visiting from freezing-cold Michigan. My Mom and Aunt Jeanne were here at the beginning of the month, and our cousin Liz was here a couple of weeks ago. Everyone is always so amazed at how good Olivia looks, and of course at how big the boys are getting! In a couple of weeks my parents will be here for their annual March visit, and while they’re here we’ll be going to Vegas for my brother’s wedding. Should be loads of fun! Olivia will stay home with her nurse, who is so wonderful to her and really helps us out a lot. In April we’ve got a few different groups of friends visiting, and before we know it, it will be May and time to celebrate Olivia’s fifth birthday!

We are so thankful to everyone for the continuing support, and we truly appreciate all of the prayers and well-wishes. We are so thankful for our family and friends…you all help to make this journey easier. And we are so blessed with our new sons. It is an answer to prayers that they are here to get to know and enjoy Olivia, and that she has gotten to know them. It’s what we’ve always hoped for, and we are so thankful!

Sincerely,
Christine & Eric

Tuesday, January 9, 2007 1:15 PM CST

Happy New Year!

Whew! We just had the best time at Christmas with my parents, my brother and his fiancée all visiting from Michigan. They were here for a week and we spent a lot of time just being with Olivia and holding the babies. I appreciated all the helping hands! Although Olivia was a little under the weather, she really seemed to enjoy all the activity and familiar faces and voices. As always, she loved to listen to her Pop play Christmas carols on the piano.

Christmas morning was such a treat because while we were exchanging gifts, Olivia was sitting on her daddy’s lap and “helped” open gifts. Then, she started grinning from ear to ear, something we hardly ever get to see. It was really fun to have everyone there to enjoy the moment.

This past week, Olivia seems to be in much better health than she was during most of December. Her ear and bladder infections have cleared up, and her respiratory congestion seems to be much less than it was. Overall, there has been more seizure activity, which was much more frequent while she was sick last month. The seizures are probably something we’ll be seeing more often now, but we’ve been using Valium more regularly and that seems to keep them under control. We hope we continue to have more good days than bad!

The boys are doing great. They’re both growing like mad, and in the past couple of weeks their personalities are really starting to come out. They smile and laugh a lot, and also try to “talk” as much as possible. While they still keep me constantly busy, they are sleeping longer at night so I’m getting more rest and feel more energetic. My bacterial infection is now gone, and I feel healthy again… really exhausted, but healthy.

We really appreciated all the cards and well wishes we received over the holidays. As always, we are thankful for the prayers and support that help us get through this. Best wishes to you for a great 2007.

Christine & Eric

Monday, December 4, 2006 1:35 PM CST

Happy Holidays!

Hope this finds everyone doing well and enjoying the Holiday season. It’s hard to believe we’re into December already! Things have been really, really busy here (I’ve tried updating this journal at least four times!), and I’ve discovered that having twins is NOT for the faint of heart! People I know with twins experience warned me that it would be hectic, but I had no idea how true that would prove to be. The boys are absolutely wonderful, they are growing like mad, and we’re totally enjoying watching their little personalities develop. Will looks so much like Olivia when she was an infant, and Carter is definitely a mini-Eric. They still have not figured out that night-time is for sleeping, but hopefully that will change soon. The newest phase that they are going through is wanting to be held all the time, and boy, will they let you know it if they’re not happy. Unfortunately, with Olivia requiring lots of attention, they’re having to learn about patience and waiting their turn. It’s heartbreaking when you can’t pick them up and give them what they want immediately, but that’s how it goes. We have Olivia help by “holding” a baby whenever possible, and she seems to enjoy that. Every once in a while we’ll see a smile when she’s with them, and that’s so wonderful.

Olivia and the rest of us have been a bit under the weather, and I have had the worst time getting rid of a bad bacterial infection that I’ve had since shortly after the boys were born. About a week after we came home from the hospital, I came down with what I thought was the flu, and after a week of not feeling better, my c-section scar became very infected. Antibiotics didn’t take care of it, so my doctor actually admitted me into the hospital for two days and nights for i.v. treatment! It was really difficult to be away from Olivia and the boys (they were three weeks old). Thankfully my mom was still in town, and between her, Eric, and my sister, all the children were well taken care of. The following week, I caught a bad cold from Eric, and since I’m getting no sleep and my immune system is down, the bacterial infection came back into my scar. Now we’re trying a different, stronger antibiotic and if this doesn’t work, I’ll go back into the hospital. Unfortunately, Olivia and the boys are fighting the same cold Eric and I had, but it seems like the boys are on the mend. Olivia has been having a tough time with it, and her congestion is really making her miserable. We saw her pulmonologist a couple weeks ago, and we’re trying a new breathing treatment to help alleviate her coughing (which always ends up with vomiting). Hopefully it’ll make a difference, at least maybe a little. She’s still having a new kind of seizure, and we see more of it when she’s not feeling well, but her neurologist does not want to change her meds just yet. A couple weeks ago we actually spent a night with Olivia in the E.R.; it turns out she had a bladder infection which led to a high fever, which increased her seizure activity. We thankfully did not have to be admitted, which is great since she always seems to get sicker when she’s there. She is over the bladder infection, but she’s still fighting the congestion that we think is from a cold. She’s such a little trooper, with the patience of a saint!

We’re anxiously awaiting the arrival of my family for a week at Christmas…my Mom and Dad will be here as well as my brother Mark and future sister-in-law Kathy (lots of extra hands to hold babies and change diapers…yea!!). Olivia is enjoying her very own little Christmas tree in her big-girl room, and the first time she saw it, she smiled one of her biggest smiles…it was beautiful!

Thanks as always for all of the support you give us. We really appreciate the thoughtfulness everyone has shown Eric and me, Olivia and the boys. It is wonderful to know that we are surrounded by so much love! Everyone has been so generous with their support and we truly appreciate it.

Sincerely,
Christine & Eric

Friday, November 3, 2006 1:13 PM CST

Hello everyone!

Greetings from the busy Hoffmann household! We are all doing quite well here and adjusting to the very different routine now that Carter and Will have joined us! The boys are two weeks and two days old, and they have been very content, easy-going babies so far. They eat frequently, which keeps me very busy, and of course they sleep a lot. Olivia seems to enjoy her brothers, and she helps us out by holding one or two at a time, which she and the boys like. Carter especially is a cuddler, and if I’m busy with Will she really does help by holding him close so he isn’t fussy. The other morning I was getting ready to feed one of the boys, and he was crying loudly, and Olivia actually started her sad cry (different from her cry when she’s in pain). As soon as he heard her crying he stopped, and I showed Olivia that he was really o.k. and that settled her down. I took that as an indication that she is definitely in tune with her brothers and concerned about them. She is quite something!

Olivia for the most part is having good days, although her congestion has been worse lately which has caused more vomiting and discomfort for her. We’re thinking she might have allergies, or maybe a cold; most likely we will not be able to know. We are going to see her pulmonologist next week to see if there is anything we can do to clear it up a bit. We’ve been down this road before, however, and there is usually nothing we can do that we aren’t already doing. But we’ll see…Also, Olivia has recently been having a new type of seizure that we hadn’t seen before, so we will check with her neurologist to see if it’s time to switch her seizure meds. Hopefully that will take care of it. She is still very alert and seems to be enjoying all of the activity that her new brothers have brought, and of course she loves having her Nan around. My Mother is here for three weeks to help, and my Dad will be here next week for a visit. Olivia’s eyes get big when we tell her that her Pop will be here soon!

Thank you for all of the well-wishes that you’ve been sending our way. Everybody has been so thoughtful and generous, and again Eric and I are reminded of how blessed we are by the love and support of so many friends and family. Olivia is such a lucky girl to be surrounded by so many wonderful people, and we really appreciate all of you!

With love,
Eric, Christine,
Olivia, Carter & Will
xoxox

Thursday, October 19, 2006 3:18 PM CDT

Hi, everyone! This is Olivia writing (with the help of my aunt Katie) to tell you all about my new baby brothers! My mom and dad went to the hospital yesterday so the babies could come, and I got to go there this morning to meet them. It was so fun that I couldn't help smiling! The babies' names are John Carter and William Elliott, and we call them Carter and Will. Carter was 6 lbs., 2 oz., 19 in. long, and was born at 1:58 p.m. Will was 5 lbs., 9 oz., 19 in. long, and was born at 1:59 p.m. Today I got to hold both of them and Daddy took a lot of pictures. Mommy will share them with you on my website when she and the babies come home this weekend. Carter and Will are so little and cute, and they make funny little sounds. They're also kind of wiggly! Mommy said the babies had a good first night and they like to eat. Mommy's also really happy that they came out of her tummy and she feels great. I can't wait until we're all at home together. My nan is coming on the airplane from Michigan on Monday and will stay with us for three weeks. My pop will be coming a little later on, and he will play the piano for me and my brothers! I'm so happy to be a big sister now.
Love,
Olivia

Saturday, September 9, 2006 2:44 AM CDT

Hi family and friends!

Hope this finds you all doing well. Olivia has been home from her last hospital visit for just over three weeks, and overall she’s done very well. Her breathing has definitely improved, and up until this past Sunday, she had gone almost two weeks without vomiting!! Not sure what, if any, the connection is with the tonsillectomy, but was that ever a great relief! I honestly cannot remember that last time we went that long without throwing up. She has been really comfortable and relaxed, and seems to be very aware of what’s going on around her. Unfortunately this week we’ve had some not-so-great days; we suspect that she might even be fighting a little bug. Today was a tough day, but hopefully we‘ll get everything under control and back to “normal” as quickly as possible. This week my brother Mark and his fiancée Kathy are in town, and we’ve been enjoying our visit with them. Aunt Kathy has been a really big help with Olivia, and I’m sure Olivia appreciates having them both around! She even had a smile or two for them, which is always wonderful to see.

We are plugging right along with this pregnancy; in fact, the c-section is scheduled for Tuesday, October 24th. Only six and-a-half weeks to go! Fortunately the pregnancy has continued to be uneventful, and we’re really hoping and praying these two little ones do not decide to make their arrival earlier than expected! They are both moving around like crazy…I don’t think they ever rest. I’m still feeling good, other than being extremely tired all the time lately. The heat probably isn’t helping, but it will be cooling down soon, I hope. Keep you eye on these journal entries…we’ll have my sister post any big news, and I’ll put up photos of Olivia and her new siblings on her picture page. She’ll be such a great big sister!

Thanks to all of you for your support, and for keeping Olivia in your thoughts and prayers especially while we were in the hospital. We really appreciate all the notes, e-mails, and phone calls we continue to receive. They make this journey a bit easier! And please remember that although we are unable to know who makes donations to Olivia’s Fund, we truly appreciate your thoughtfulness and generosity. We are so blessed with such wonderful people in our lives.

Sincerely,
Eric & Christine

Saturday, August 19, 2006 0:39 AM CDT

Hello everyone!

We finally came home on Wednesday afternoon, and are we ever happy to be here! Olivia definitely knows she is home, and she’s even given us a couple of smiles. She loves here new “big girl” bed…much better than the hospital! She has done very well since we’ve been home, but we are still not up to her regular feeding routine during the day. But I suppose that is to be expected, since her schedule was disrupted for ten days. We’ll get her back to normal soon.

As I mentioned in an earlier entry, we do now have oxygen for her here at home. But as I suspected, it doesn’t look like we’ll need to use it very often. I think she just had a hard time shortly after the tonsillectomy; that’s to be expected since her throat was so swollen from the surgery. Her breathing is so much better now, and she does not struggle to breathe at all anymore. Thank goodness…that was awful!

Now that we’re well on the way to a full recovery, we hope it lasts until after the twins’ arrival. Only nine and a half weeks to go, and hopefully it will continue to be smooth sailing! We can’t wait to see Olivia the big sister with those little babies. What a blessing.

Thank you so very much for all of the support you gave us over the last two weeks. All of the encouraging words certainly helped, and we appreciate all of your thoughtfulness.

Thanks again!
Eric & Christine

Monday, August 14, 2006 7:25 PM CDT

Hello all,

I hate to say it, but we are still in the hospital! Olivia’s vomiting was under control and we were successfully increasing her feeds, but then late yesterday (Sunday) afternoon, she started the frequent vomiting once again. We got it under control after a few hours with medication, but then they did not resume feedings for six hours (early this morning). And they were started up at a much slower rate and at half-strength, so we’ve had a bit of a set-back. But the good news is that Olivia did well through the night and so-far today, and as before, we are slowly increasing her feeds so that the doctors know she can tolerate them before she goes home. I have given up asking or speculating when that might be…Every time I think we’re getting close, things change. So we have to stay patient and take one day at a time!

I’ll keep everyone posted. Please keep her in your prayers, and thank you as always for all of your support!

Sincerely,
Christine & Eric

Saturday, August 12, 2006 9:38 PM CDT

Hi everyone,

Well, we are still here in the hospital as of Saturday evening, but Olivia has definitely turned around and is doing much better. Yesterday morning she had an x-ray taken to help the doctors figure out why she was constantly vomiting and retching, and it showed that her stomach was very swollen, and the opening from the stomach to the rest of the g.i. track was close to swollen shut. Anything that was in her tummy couldn’t move through, so it came up instead. There could be a number of causes for this, and unless the vomiting stopped, the doctors were planning on performing an upper g.i. today (very painful on her recovering throat!), biopsy the stomach, and possibly replace her feeding tube with a different type that would allow food to bypass her stomach (this would involve another surgery). Fortunately, the vomiting stopped late Friday afternoon, and it appears as if the problem is correcting itself. This is a huge relief! Now we are slowing increasing her feeds until they are confident she can handle her regular schedule. I highly doubt we’ll be able to go home tomorrow; I’m guessing it will be Monday, and that’s only if everything continues to go well.

Olivia looks great and is not in any pain, except for when she coughs (it’s hard on her throat). And her breathing is MUCH better…she does not struggle at all. So I think the tonsillectomy was a success!

We are waiting patiently to go home, and we’re both taking advantage of being here to catch up on our rest. Only ten weeks to go until the twins’ arrival!

Thank you for continuing to keep Olivia in your thoughts and prayers. We know they make a difference! Your support truly helps us get through difficult times like this.

Thanks again.

Eric & Christine

Thursday, August 10, 2006 6:58 PM CDT

Hello!

Greetings from Phoenix Children’s Hospital! It’s Thursday afternoon, and I’m sorry to say we are still here! Olivia’s tonsillectomy and adenoid removal on Monday afternoon went very well, and hopefully we will see a major improvement in her breathing. We need to give it a couple of weeks while everything heals, but her e.n.t. doctor/surgeon is optimistic. The tonsils were quite large, which means chances are good that we’ll have lots of improvement. Unfortunately, Olivia is having a difficult time with vomiting (frequently it has blood in it), and her doctors are trying to figure out what’s causing this. They are running tests and keeping a close eye on her to determine what’s going on; she might even have an ulcer that’s causing these problems. They are holding back on feedings until the vomiting gets under control, and they will only discharge us after she is holds down her food for at least twelve hours. So…I think we’ll be here for a while longer!

Olivia also has had a difficult time keeping her oxygen saturation level up, and we do not know if this is a temporary thing due to the surgery (anesthesia, throat irritation, etc.), or if this is how she always is. So as a precaution, we will go home with an oxygen tank. Hopefully we’ll only have to use it while she is sleeping, and if we’re really lucky, after she heals from this surgery we won’t have to use it at all. But the need for an oxygen tank is an inevitable part of the progression of MLD, so maybe this will be permanent.

Despite these setbacks, Olivia is resting very comfortably, and getting lots of sleep. She doesn’t seem to be in a lot of pain at all, and of course she is getting wonderful care form all of her doctors and nurses here at the hospital!

Thank you for all of your prayers throughout this week. Please continue keeping her in your thoughts and prayers; as always we really appreciate all of your support!

Christine & Eric

Saturday, August 5, 2006 0:43 AM CDT

Hi everyone!

Sorry for the delay in writing this journal entry, but things have been awfully busy here at the Hoffmann house! We are getting ready to go to Phoenix Children’s Hospital on Monday for a tonsillectomy and adenoid removal, which will hopefully relieve a lot of the breathing difficulties Olivia has been having. We had visited her pulmonologist at the end of June who sent us to an ear, nose and throat specialist. He determined that her tonsils are quite enlarged, and he’s confident that she’ll be much better off without them. Normally this is an out-patient surgery, but given Olivia’s condition, she will be in the hospital for at least a couple of days. The e.n.t. doctor also thinks this might reduce some of the saliva production, which pools in the back of her throat and leads to vomiting. But if it doesn’t, the next step would be to remove four of the five salivary glands. He doesn’t want to do this procedure until it’s absolutely necessary. It’s good to know we have options!

We’ve been to a few other doctors in the last number of weeks, and found out from the ophthalmologist that Olivia can only see light and dark. We were a little surprised and disappointed by this news, because it really seems like she can see at least a little, especially when she is relaxed and not in pain. On a more positive note, the neurosurgeon and orthopedist that we met with in June determined that Olivia would benefit from botox treatment in her ankles, which would release her feet from the pointed position they are always in. They will have to put her under anesthesia since it requires extreme precision and many shots, but unfortunately they cannot do it at the same time as her tonsillectomy. So we are putting that procedure on the back-burner for now, since it is more important that we get her breathing cleared up first.

Other than the difficulties with her tonsils, Olivia continues to have more good days than bad, and she seems to be relatively pain-free. We have increased the medication that she takes to reduce her stiffness, and it really seems to be helping. She is accomplishing things during physical therapy that she hasn’t been able to do in over a year! We are so thankful that she’s comfortable, and we are hoping it lasts. It certainly is making this pregnancy easier, and we only have eleven and-a-half weeks left! It’s going so fast, and these little peanuts will be here before we know it. Olivia will make such a great big sister!

Thank you as always for your support. Please especially keep Olivia in your prayers next week, that we have a successful surgery and a quick recovery.

Sincerely,
Eric & Christine

Saturday, August 5, 2006 0:43 AM CDT

Monday, June 26, 2006 1:57 AM CDT

Hello!

Hope this finds everyone well and enjoying the summer! We are doing quite well, and Olivia seems to be feeling good. In fact, we have been getting quite a few smiles out of her lately, which is so wonderful. We never know what is going to trigger them, and frequently we’ll try and try, with no results. Then sometimes, almost out of the blue, she’ll give us a grin, occasionally with a little vocal noise that is probably her way of laughing. It’s been really encouraging because this is the most responsive she has been in a long time, and it gives us hope that she really does understand what’s going on around her. Plus, we hope it’s a sign that she is relatively comfortable and pain-free. Olivia still vomits on a daily basis, usually because of congestion in her throat and upper chest that she can’t move away herself, but she rarely get upset despite vomiting all the time. She has so much patience!

Olivia has a few doctors’ appointments in the next couple of weeks…This week we are going to see one of her neurologists and a neurosurgeon to find out if her ankles, which are turned in and always point down like a ballerina, are permanently fused that way. If they aren’t, the neurosurgeon could possibly give her botox shots in her ankles to loosen them up. This would be more comfortable for her, and we might be able to put her in a standing positioner with the help of our physical therapist. Getting her in a standing position would be good for her vestibular system, her lungs, and her eyesight (if she has any left). Olivia will also see an ophthalmologist later this week to determine how much eyesight she has. And she has an appointment with her pulmonologist. Lately her breathing has been more labored, even though her nose isn’t plugged up. We’re hoping it’s something treatable, like a sinus problem, and not an issue with her lungs. Keep your fingers crossed that we get some good news and can take some steps to improve Olivia’s situation.

I can’t believe how quickly time is going, and I’m happy to report that I am over half-way through my pregnancy! So far it has gone very smooth, and I’m feeling good and not as tired as I had been. Olivia and I still try to get as much rest as possible, and unless we’re out in the pool, we stay indoors with the air conditioning on full-blast. The heat has been exhausting, but we’ll get through it!

We had a great visit with my Dad over Father’s Day weekend, and I know Olivia loves having her Pop here. He played the piano for her (always one of her favorite things), and we spent time floating in the pool, which seems to make her really relaxed. He was the last of our visitors until the weather cools down a little. Our next guests will be Olivia’s Uncle Mark and his fiancée Kathy in September.

Thank you as always for the support you all continue to give us. We really are so blessed to have such wonderful people in our lives!

Sincerely,
Eric & Christine

Friday, May 26, 2006 0:21 AM CDT

Hello family and friends,

Greetings from sunny Scottsdale! Thank you to everyone for helping to make Olivia’s fourth birthday so special. We received lots of phone calls, e-mails, and cards; it really was quite an event! She made it through a difficult year, and we are so proud of her. She continues to be such a little trooper and so courageous. I am positive she knew it was her birthday because, on the morning of her “big day” (with Mommy singing Happy Birthday over and over), Olivia gave me a bunch of smiles! It was the best gift ever! Surprisingly, she had lots of smiles for us the following few days. We haven’t seen any recently, but we’re thankful for the ones we got!

We had a wonderful visit this past weekend with two of my aunts from Michigan (my Dad’s oldest and youngest sisters). We were able to be outdoors and enjoy the pool…even Olivia went “swimming” in her new raft. She liked it so much and was so relaxed, she fell asleep in it! I have a feeling we’ll be getting lots of use out of our pool this summer! We started water therapy again, and Olivia continues to benefit from her weekly therapy sessions with Melissa. It’s not always her favorite thing to do, but she definitely tolerates it more than she used to!

Other than pink eye and an ear infection a couple of weeks ago (they both went away quickly with antibiotics), Olivia has been very healthy. And she has many more good days than bad, which makes us all happy. Hopefully we’ll have an uneventful summer with no illnesses! I am feeling better (I’m about seventeen weeks along), although I continue to be really tired all the time. I’m trying to get as much rest as possible, because I know things will get really crazy around here when these babies arrive! We can’t wait, though, and I’m sure Olivia is looking forward to being a big sister.

Thanks again for helping us celebrate Olivia’s fourth birthday. We appreciate all of your continuing support. Your thoughts and prayers really do make a difference, and we are so blessed to have the family and friends that we do.

Christine & Eric

Friday, May 5, 2006 5:10 PM CDT

Hello everyone!

Hope this finds you all well. We are doing great, and Olivia seems to be feeling good. For a week or so after she came home from the hospital (for pneumonia), she was having a difficult time with excessive vomiting. The doctor thinks that it was just taking a while for everything to get back to “normal”, and I think he was right…for the last week she has been doing very well. In fact, she has been vomiting less than ever before! Who knows why, but we’re enjoying it while it lasts, as I’m sure she is!

Here is some big news in our lives…Olivia is going to be a big sister!! To twins!!! The most wonderful thing is that, thanks to preimplantation genetic diagnosis and IVF, we know for sure that neither baby will have MLD. Isn’t that exciting?! We are so thrilled and really looking forward to the big changes coming up! I am just over three months pregnant, and other that the typical nausea and tiredness, I feel pretty good. We are not going to find out if they are boys or girls or one of each (we didn’t know with Olivia, either). The babies will arrive via scheduled c-section sometime in the third week of October, if all goes as planned. It’s going to be a long, hot summer, but it will be well worth it! I like to think that Olivia understands that she’s going to be a big sister; her eyes get big whenever we talk about it and sometimes she even seems to try to look at my tummy. She was always crazy about babies, and I can’t wait to see her with her own little siblings!

It’s hard to believe it’s almost Mother’s Day, and we’re looking forward to a visit from my Mom over that weekend. It will also be an early birthday treat for Olivia…her fourth birthday is on May 17th. Can you believe she’s going to be four?! So much has happened to her in four short years, and she continues to be such a little angel through all of it.

Thanks for all of your support, especially all of the prayers for Olivia while she was fighting pneumonia. As I always say, we really could not get through this if it wasn’t for all of you!

Eric & Christine

Friday, April 21, 2006 0:39 AM CDT

Hello friends and family,

We’re home! Olivia came home from the hospital late on Tuesday night, and we’re so thankful to be here! Fortunately the pneumonia responded to the antibiotics and didn’t turn into anything more serious. Yesterday (Wednesday) was not the greatest day; she vomited a lot because of a bad cough caused by the pneumonia, but today went better. Hopefully she’ll be back to her old self soon. Now that we’ve seen first-hand what her vomiting and reflux can do (she got sick because of aspirating), we are even more worried about all the coughing and vomiting she does so frequently. But we’ve got some new things to try (different formula and meds), and hopefully they will help.

Even though we were in the hospital, we had a great visit with our good friends Kelly and Chad from Oregon. Kelly is the designer who worked with the MLD Foundation to design postage stamps (and they all have butterflies…Olivia’s favorite!). If you haven’t ordered yours yet, be sure to do so by clicking on the above link. They are beautiful stamps and they’ll help to spread the word about MLD!

Thanks to everyone for all of your support, especially while Olivia was in the hospital. We are so blessed to have such caring family and friends. We truly appreciate all of your thoughtfulness.

Sincerely,
Eric & Christine

Tuesday, April 18, 2006 1:37 PM CDT

Hello everyone!

I’m happy to write that Olivia has been doing very well, and hopefully we will be able to go home this evening! The pneumonia seems to be responding to the antibiotic…she hasn’t had any fevers, she went off oxygen this morning, and she’s been tolerating her feeds. If we get through today without any vomiting, they will release her tonight. We are so happy, and I know she will be thrilled to be home again! She usually does not like being in the hospital at all, and lets us know by being very agitated, but this during this visit she really has done well and stayed relaxed. Definitely makes it easier for all of us! Please keep your fingers crossed that we have a good day and are home soon.

We’ll keep you posted. Hopefully I’ll write another entry tomorrow from home, not the hospital. Thank you for all of your prayers. I know they help!

Christine & Eric

Saturday, April 15, 2006 1:55 AM CDT

Hello friends and family!

I hate to say this, but unfortunately I’m writing this journal entry from Phoenix Children’s Hospital. Olivia was admitted yesterday (Thursday) morning, after a long day on Wednesday of vomiting followed with bad seizures and high temperatures. We went to the emergency room hoping that the doctors could get everything under control without having to admit her, but a chest x-ray showed that Olivia has pneumonia in her right lung. The doctors’ best guess is that she got it after aspirating while vomiting so much on Wednesday. Of course she was admitted and is now on a ten-day course of antibiotics. Our goals are to keep her temperature under control, tolerate feedings (we will start feeds back up tomorrow), and get her off oxygen. If we can do all these and she seems well, they will let us go home and continue the antibiotics there. I believe if all this happens, our best-case scenario will be to get out beginning- to mid-week. But we’ve learned never to plan on anything when it comes to hospital stays! Today we had a very good day, and Olivia spent most of it catching up on her sleep. A couple times her temp started to go up, but a dose of Tylenol took care of it quickly. We’re so thankful we made it through the winter without having to be here (it’s been six months!), and like I always say, it’s awful to be in the hospital…but if we must be, we’re thankful to be at Phoenix Children’s! All of her doctors and nurses are so wonderful, and they‘ve taken a special liking to Olivia. This definitely makes it easier!

On a happier note, we had a great visit with Olivia’s gastroenterologist on Monday. He actually told us that Olivia was gaining too much weight, and we need to cut back her calorie intake! We never thought we would hear that, especially after she had lost so much weight last winter before she got her feeding tube. More good news was that we have a game plan to change a few medications and her liquid nutrition to try and stop the frequent vomiting. As he said, she is a perfect candidate for reflux, but hopefully with these changes we can get it more under control. This pneumonia goes to show how critical it is that we try to cut back the reflux and vomiting.

We had a wonderful visit with my Mom and Dad, and thankfully Olivia seemed to feel quite well for their whole visit. She definitely likes to have them around!

Please keep Olivia in your thoughts and prayers, especially over the next few days as she fights the pneumonia. She doesn’t have much of an immune system to do it on her own, so we’re hoping and praying that good care and medication will do the trick! As always, thank you for all of your continuing support.

Sincerely,
Eric & Christine

P.S. Thank you to everyone who helped out with Olivia’s Neighborhood Garage Sale! It was a HUGE success!! We appreciate all of the donations, as well as all the help so many of you gave us. It really was fun!

Friday, March 10, 2006 11:48 PM CST

Hi everyone!

It’s been way too long since our last journal entry, but things have been so busy around here! We are all doing well, and other than a chest cold that Olivia has been fighting (thankfully, it hasn’t turned into pneumonia!), she has been doing pretty good. We consider ourselves very lucky that this is the first “bug” she has caught all season…there have been so many going around! She’s been on antibiotics for a week now and she is definitely improving. We still deal with vomiting daily (and recently even more frequently because of all the coughing this cold has caused her), but Olivia is such a trooper and handles it like such a big girl!

We’re looking forward to our visit with Olivia’s Nan and Pop (my Mom and Dad) from Michigan next week. Olivia’s eyes get big whenever I reminder her that they will be here soon, so I know she’s aware of what’s coming up. Hopefully we’ll have lots of warm, sunny weather for them, and maybe we can even get in the pool (heated, of course!). We haven’t been able to do pool therapy since before the holidays because it’s been too chilly. But we’re still having therapy twice a week and Olivia is doing very well with it. She continues to tolerate more movement than she ever has. We know it’s not her favorite thing to do, but it sure is good for her to keep those muscles and joints moving!

Thank you to everyone who participated in the photography fundraiser in February! It was a big success, and everyone I’ve talked to was thrilled with Barbara’s amazing talent and the pictures they received! Speaking of fundraising…If you haven’t ordered your MLD Foundation postage stamps yet, please click on the link above to place your order! It’s a new link, and now it is even easier to order. This is a great way to support the MLD Foundation and spread awareness about MLD. Plus, they are beautiful stamps with butterflies incorporated into the design, thanks to our friend Kelly Quashnie who designed them! Butterflies have always been one of Olivia’s favorite things (she called them “aw-flies”). So these stamps are extra-special to us, and we really want to encourage you to order some!

As always, we appreciate all of the ways that you continue to support us. We value your prayers, words of encouragement, and all the kindness that we receive on a daily basis. It really does help to give us strength to get through this incredibly difficult journey

Thank you!
Christine & Eric

Friday, February 10, 2006 0:29 AM CST

Hello family and friends!

Hope this finds you all well. We are still doing quite well, and Olivia continues to have more good days than bad. She still vomits on a daily basis, but she is such a little trooper, and most times it doesn’t seem to even bother her. Most often it is caused by congestion in her throat and chest that she can’t get rid of...We’ve realized this is just par for the course when you have a neurological disorder and are tube-fed. But as I said, it helps a lot that Olivia doesn’t get upset! She continues to be quite alert for long periods of time during the day, and sometimes it seems that her vision is very good. Other times, especially if she’s in pain or upset, she doesn’t appear to be seeing anything at all, so we’re thankful that at least sometimes she can see! We think that she still enjoys the books we read to her, her movies (“The Sound of Music” was always a favorite), and her cd’s. It’s so frustrating that she cannot communicate at all with us, so we hope that we’re keeping her entertained and occupied, and most importantly, happy. Physical Therapy definitely is not one of her favorite things to do, but she continues to really benefit from it, and she is still doing things that we hadn’t seen in months and months. We’re so thankful for all the wonderful things that Melissa our therapist does for Olivia, and we’re also happy to have Olivia’s nurse Sue be a part of the “team”. She is a big help, and gives us much-needed breaks during the week!

We had a wonderful visit with my Mom, Olivia’s Nan, this past weekend. Nan had to soak up as much sunshine as possible before she went back to that Michigan winter, so we spent a lot of time out on the patio enjoying our unseasonably warm weather. Olivia really seemed to like it…although I think she would be happy being anywhere with her Nan!

That’s all for now. Please continue to keep us in your prayers, and know how much we appreciate everything you all do for us. As I’ve said so many times before, I do not know how we would get through this without the support we receive from all the amazing people who surround us!

Christine & Eric

Sunday, January 22, 2006 11:00 PM CST

Hello!

We’re so happy to report that Olivia has been doing very well lately! Thank you for all of your thoughts and prayers…I know they play a big part in keeping her healthy and giving all of us the strength we need to get through each day.

A couple of weeks ago we had an appointment with Olivia’s G.I. doctor, and we were thrilled to find out that she weighs 31 pounds! Compared to last January, when her feeding tube was put in, that is really fantastic! And she has been doing really well in physical therapy; she is more flexible than she has been in over a year. Her new carseat is working out really well, and we’re getting lots of use out of it both in the house and in the car. It‘s been much easier to get around in the car, and she seems to like sitting in it a lot more than lying down across the backseat. Much safer, too! We’re not sure why she has been doing so much better lately…it could be that we finally have the right balance in her medications and/or food intake, or it could simply be her body going through different phases of this awful disorder. Whatever it is, we are just happy to have so many good days with her, and of course we hope and pray that this lasts for a really long time!

I’d like to send a big THANK YOU to Bob and Stacy Wilcox for hosting a garage sale to benefit Olivia this past weekend, and thank you, too, to everyone who donated items and helped work the sale. It sounds like it was very successful, and everyone enjoyed it. Olivia and I were able to be there for a couple hours on Friday morning, and it was so nice to see the great turnout. We have such wonderful friends!

We’re really excited about the next event coming up…”For the Love of Olivia” is a fundraiser that’s being put together by a friend from our church, Paula Kehoe. You and your family can schedule a photo session with award-winning photographer Barbara Stitzer, and 100% of the money raised goes to Olivia’s Fund! All of the details are posted above, including how to schedule your appointment and a link to examples of Barbara’s work.

Thanks again for all of the support that you continue to give us. We are so grateful for the amazing people in our lives, and we could not get through this without the support system that we are so blessed to have!

Christine & Eric

Sunday, January 22, 2006 0:04 AM CST

Hello!

We’re so happy to report that Olivia has been doing very well lately! Thank you for all of your thoughts and prayers…I know they play a big part in keeping her healthy and giving all of us the strength we need to get through each day.

A couple of weeks ago we had an appointment with Olivia’s G.I. doctor, and we were thrilled to find out that she weighs 31 pounds! Compared to last January, when her feeding tube was put in, that is really fantastic! And she has been doing really well in physical therapy; she is more flexible than she has been in over a year. Her new carseat is working out really well, and we’re getting lots of use out of it both in the house and in the car. It‘s been much easier to get around in the car, and she seems to like sitting in it a lot more than lying down across the backseat. Much safer, too! We’re not sure why she has been doing so much better lately…it could be that we finally have the right balance in her medications and/or food intake, or it could simply be her body going through different phases of this awful disorder. Whatever it is, we are just happy to have so many good days with her, and of course we hope and pray that this lasts for a really long time!

I’d like to send a big THANK YOU to Bob and Stacy Wilcox for hosting a garage sale to benefit Olivia this past weekend, and thank you, too, to everyone who donated items and helped work the sale. It sounds like it was very successful, and everyone enjoyed it. Olivia and I were able to be there for a couple hours on Friday morning, and it was so nice to see the great turnout. We have such wonderful friends!

We’re really excited about the next event coming up…”For the Love of Olivia” is a fundraiser that’s being put together by a friend from our church, Paula Kehoe. You and your family can schedule a photo session with award-winning photographer Barbara Stitzer, and 100f the money raised goes to Olivia’s Fund! Within the next day or so, we’ll have a link posted above with more information, including examples of Barbara’s work and how to schedule your appointment.

Thanks again for all of the support that you continue to give us. We are so grateful for the amazing people in our lives, and we could not get through this without the support system that we are so blessed to have!

Christine & Eric

Saturday, December 31, 2005 3:11 PM CST

Hello and Happy New Year!

Hope this finds you all well and healthy. We had such a great Christmas, and overall, Olivia did very well through our busy holiday week. We had a wonderful visit with our family, and the Michigan folks really enjoyed the sunny, mid-70’s weather on Christmas Day! Definitely a first for my family…opening presents outdoors! Olivia loved having all of her family around; she even gave us a couple of smiles. I think her favorite times were when we all sang Christmas carols. She sure does love to hear her Pop play the piano! Now that everyone has gone back home, we’re getting back into our routine. Olivia (and all of us!) stayed relatively healthy throughout the craziness of the holidays, and hopefully we’ll all stay that way as we go into the new year!

When I look back over this past year, I am amazed at all of the changes we’ve gone through. Overall, I am thrilled with how Olivia is doing, considering that last year at this time, her condition was still so new to us and we had no idea how she would do. As I’ve said, and will continue to say, we are so fortunate to receive all of the support that we do from our friends, family, and even people we haven’t met. It means so much to us, and I truly do not know how we would get through this without it. Let’s hope and pray for the best in 2006!

Again, Happy New Year!
Sincerely,
Eric & Christine

Friday, December 16, 2005 0:17 AM CST

Hello!

Happy Holidays to everyone! We hope you are enjoying the season. It’s hard to believe that Christmas is almost here, isn’t it?! Olivia has been doing very well lately, and it really seems like she is more aware and responsive to what’s happening around her. It’s so encouraging to us, since we haven’t seen this for months and months! She has been smiling (very subtle, but smiling nonetheless), especially when she looks at the Christmas tree or when we’re singing carols, and she tries to follow voices as we move around her. A great new addition to Olivia’s equipment is a carseat for special needs kids, and she is so comfortable in it that we keep it in the house for her to use as much as possible. We haven’t tried it in the car yet, but I know it will make car rides much easier and hopefully more pleasant for Olivia (up until now, she would lay in the backseat with a harness strapping her in). It has been so nice to have her sitting upright, and I really think that has helped her responsiveness because she can see more and probably feel like she is more involved. It also improves her posture which helps to keep her lungs clear and breathing easier. In addition, she has been a lot more flexible recently, and we’ve been able to get really good movement and stretching during physical therapy. We haven’t gone in the pool the last few weeks because it is too cold outside. We just can’t risk her catching something! Overall we are thrilled with how she’s been doing and we hope and pray this lasts for a while!

We’re all anxiously awaiting our family’s arrival for Christmas. Olivia’s Nan gets here tomorrow, and Pop, Aunt Gigi, and Uncle Mark come in on Monday. We truly hope she stays healthy and continues to do well throughout next week so she can really enjoy her company.

We are so thankful to all of you for helping us, in so many different ways, make it through this past year. We are fortunate to be surrounded by so much love and concern for Olivia. She is an amazing little girl with an unbelievable amount of strength and patience, and we are so blessed that she is a part of our life.

Happy Holidays!
Sincerely,
Christine & Eric

Monday, December 5, 2005 8:52 PM CST

Hi everyone,

I am so happy to report that Olivia’s surgery went very well! The procedure itself (a permanent i.v. port was placed just below her left collarbone under her skin) was very quick, and we spent a few hours in the recovery room (longer than a healthy patient would, because the doctor wanted to be sure that she was coming out of the anesthesia o.k.). So we were home by 7:30 Thursday evening, and Olivia did fine throughout the night and the next day. Fortunately, she didn’t have any kind of bad reaction to the anesthesia like she did when her g-tube was put in last January. Really the only problem that we’ve been dealing with is her increased congestion. Thankfully it hasn’t gone into her lungs, and we’re hoping it’s just a little cold. We are keeping her in the house and away from all the sickness that is going around this time of year, and hopefully it will pass soon.

We are really looking forward to my family’s visit for the Holidays, and Olivia eyes widen every time we remind her that Nan, Pop, Uncle Mark and her great-aunt Gigi will be here soon. She also has been enjoying the Christmas tree, and we spend lots of time in the living room where she really seems to like looking at all the lights and colors. Like her Mom, Olivia has always loved this time of year!

Thank you for keeping us in your thoughts and prayers. All of the support we have received has been so incredible, and we continue to be amazed by the love, kindness, and generosity of our family and friends.

Eric & Christine

Monday, November 28, 2005 2:06 PM CST

Hi everyone,

Happy (belated) Thanksgiving! Hope you all enjoyed it as much as we did! We had a great day with some of our family and friends, and Olivia did quite well. She even sat at the dinner table (in her stroller), and Daddy gave her a few small tastes of mashed potatoes and yams, which she seemed to enjoy. It really was a wonderful day! Now we’ve got our home decorated for Christmas, and we’re looking forward to spending the Holidays here in Arizona (the first time we won’t go home to Michigan for Christmas!). Isn’t it amazing how fast the year has gone?!

I am happy to report that Olivia will have a permanent i.v. port put in on Thursday afternoon. This is outpatient surgery and the doctor expects that we will be home after just a few hours. They do have to use general anesthesia, which Olivia does not do well with, but hopefully it will go smoothly. Normally this procedure is done at an outpatient clinic, but we will have it done at Phoenix Children’s Hospital just in case of complications. It will make life so much easier to have this port; we will be able to give her fluids and meds at home whenever she gets into her bad vomiting cycles, and avoid going to the hospital. Please keep her in your thoughts on Thursday and pray for a quick recovery.

Thank you for all of your support. As I have said so many times before, we would not be able to get through all of this without the strength we receive from you. Your visits, calls, e-mails, and letters mean so much to us, and we are so thankful!

Sincerely,
Christine & Eric

Thursday, November 17, 2005 7:08 PM CST

Hi everyone,

Olivia is doing o.k. this week, after a very rough weekend. Last week she had thrown-up a few times, but nothing too serious, and then on Saturday afternoon, she took a bad turn. By the evening she was very dehydrated, but fortunately she never got a high temperature or bad seizures. We should have gone to the e.r., but we were determined to keep her home. We got a hold of two of her doctors and with the right medications, we were able to stop the vomiting and slowly get her re-hydrated. By Monday she was much better, and we were even able to have pool therapy on Wednesday. Today she has had a hard time keeping anything down, but hopefully this is just a temporary thing. Unfortunately, last weekend had been exactly four weeks since the last time we were in the hospital, which confirms our fear that this is going to happen on a very regular basis. The good thing is tomorrow we meet with the surgeon who put in her g-tube to discuss placing a permanent i.v. port. With our nurse’s help, we’ll be able to give Olivia i.v. fluids and meds, and keep her at home.

We’re looking forward to Thanksgiving next week, and spending the day with family and friends. Hopefully by then Olivia will be completely back to “normal”, but as always, we’ll take one day at a time!

Thank you for the support you all continue to give us. We couldn’t get through this without you, and we truly appreciate you keeping us in your thoughts and prayers. All of the calls, e-mails, cards, and visits help us get through every day!

Eric & Christine

Thursday, November 3, 2005 11:49 PM CST

Hello!

Hope you are all doing well. We are hanging in there, and Olivia continues to have relatively good days, which we are so thankful for. Tonight I read to her some of her favorite books, and it sure did seem like she was looking right at the pictures! Our guess is that when she’s feeling ok, she can see (at least general shapes and figures), but when she’s not doing so well (especially when we’re in the hospital) she doesn’t see a thing. But fortunately the last few weeks have been good, and we pray it continues. Having nursing care has been so wonderful! Sue is just great and Olivia seems to like her as well. It’s so nice for me to be able to get out during the week, and Eric and I have been able to spend some evenings out together, which is so nice! And Olivia continues to benefit from physical therapy (twice a week); although it’s definitely not her favorite thing to do, it is so good for her. It really loosens up her muscle tone and helps clear her lungs. It is hard work, but the results are worth it!

We had a very good Halloween, and Olivia looked adorable in her “I love my Mummy” t-shirt and cat ears! We spent the evening on our front porch, with Olivia lying in her stroller, giving out lots of candy and visiting with neighbors. Olivia really seemed to enjoy looking at our Halloween lights and listening to all those kids.

Please continue to keep us in your thoughts and prayers. Keep hoping for more good days like we’ve been having! Thank you for all of your support.

God bless,
Christine & Eric

Tuesday, October 25, 2005 1:28 PM CDT

Hi everyone!

First of all, a great big THANK YOU to everyone who was involved with Olivia’s fund raiser held this past Saturday at the VFW. It was a huge success, and a very significant amount of money was raised for Olivia’s Fund! And we had such a great time doing it! We’re constantly hearing how everyone had a fantastic evening, and some folks have commented that it’s been years since the VFW has seen a party like that! We were there until 2:00 in the morning (!!!), and lots of the VFW members were right there with us until the very end. The auction and raffle items were amazing, especially the gift baskets! Thank you to everyone who helped put it all together, especially our good friend Linda Keyes. What an amazing night, and what an amazing group of friends, both old and new, that we have!

Olivia has been doing quite well, and lately we’ve definitely had more good days than bad. She seems to be quite alert and aware of what’s going on around her. In fact, while we were getting ready to leave on Saturday night, she was quite upset (her cry was not an “in pain” cry, but a sad cry), and she would not let go of her Nan’s hand. She seemed to know that we were leaving her, and was letting us know that she didn’t like it! She did fine, though, and had a nice evening with her babysitter Shari, who takes very good care of her. We’re hoping the good days continue, but we’re still working on a new game plan on handling her next bad spell. We know it can start any time, and we want to be prepared and avoid the hospital. We’ve got our nurse now, and she is working out very well! It’s such a relief to me and Eric, knowing we’ve got extra help from such a capable and nice person. Olivia seems to like Sue, too! We had a great visit with Olivia’s Nan and Pop, and we’re so thankful that she was doing so well during their visit. And it was so nice to have my Mom and Dad be a part of the big event last Saturday.

Thanks to everyone for all of your continued support. We are so blessed with our friends and family!

Eric & Christine

Monday, October 17, 2005 1:55 AM CDT

Hello!

I’m happy to report that we were able to come home from the hospital today! We are so glad to be here, and Olivia is significantly more comfortable and relaxed in her own house and her own bed. Her doctors were unable to say exactly what caused this latest episode, and we all came to the conclusion that this will most likely continue to occur more and more frequently as she regresses. So what we’re going to try to do is figure out the best way to handle this at home and avoid more hospitalizations if possible. We will begin looking in to in-home care, hospice, etc., and see what kind of options we have that will keep Olivia comfortable, which is our top priority. I have a feeling this is going to be a tough road, but with all of the concerned and very qualified people around us, hopefully we can make the right decisions.

Olivia’s nursing care begins tomorrow, and not a minute too soon! Especially with her getting sick more frequently, it will be great to have a nurse here at home to help us. We also resume pool therapy this Wednesday, and we’ll continue regular therapy on Mondays. We can’t wait for my parents’ visit this weekend, as well as the Benefit for Olivia at the VFW this Saturday night. Just in case you didn’t catch this in the last entries…

“We are thrilled about the party to benefit Olivia that the VFW is hosting. They are an amazing bunch of people who have gotten to know about Olivia through our neighbor and good friend Linda Keyes. They have already done some great things to raise money for Olivia’s Fund, but this event is really going to be something big. Olivia has found a special place in all of their hearts, and they are in turn doing some wonderful things to make this a really special night. Some of the folks have been making really cool themed gift baskets (wine & cheese, spa day, etc.), and our friend Art has made beautiful “Olivia’s Hope” candles. These plus a number of other great things will be part of a raffle, and they are also going to have various games, and dancing hosted by a talented D.J. Please join us if you can! We’d love to see you all there.”

Thank you as always for keeping us in your thoughts and prayers. I know I say this frequently, but it’s so true: we would not be able to get through this without all of the support we receive from all of you.

See you Saturday night!
God bless,
Eric & Christine

Saturday, October 15, 2005 1:04 AM CDT

Hi friends and family,

I hate to say it, but we’re in the hospital again! We came to the E.R. yesterday (Thursday) morning, and were admitted in the afternoon. It’s the usual routine…Olivia starts throwing up, eventually gets dehydrated, her temperature goes up and seizure activity increases significantly. The good news is she’s doing much better already; we’re hoping to resume a slow feed tomorrow (Saturday), and if she tolerates it, go home the day after. But I’ve learned not to plan on anything…it seems like we’re always here for much longer than anticipated! We are working with Olivia’s doctors to figure out why this continues to happen. It’s become a very regular pattern (we’ve now been in the hospital every month since June except for July) and we need to break this cycle soon. Even though we love Phoenix Children’s Hospital, and everyone here is wonderful, we want to be home!

We have a big week coming up next week (another reason to get out of here!)…finally, our nursing care is in place and we meet our nurse on Monday! She’ll help us out for up to fifteen hours a week, and I can’t tell you how much I’m looking forward to this! Even though most of the time I’ll probably be home while she’s there, it will be so nice to have an extra set of hands to help with Olivia. And Eric and I will finally be able to do some things together. I can’t remember the last time we were able to run an errand or two together, let alone go out to dinner and a movie! We’re also looking forward to resuming pool therapy with Melissa, Olivia’s therapist. We’ve found a community pool that’s close to home, heated, and doesn’t mind us taking up a lane for therapy. Melissa has noticed a difference in Olivia’s muscle tightness since we’ve taken a couple weeks off from the water, so I’m sure Olivia will feel better once we get started again. And of course we’re looking forward to a visit from Nan and Pop next Thursday! Hopefully we’ll be “back to normal” by then.

And we can’t wait for the big event at the VFW next Saturday night. As I wrote in the last journal entry…

“We are thrilled about the party to benefit Olivia that the VFW is hosting. They are an amazing bunch of people who have gotten to know about Olivia through our neighbor and good friend Linda Keyes. They have already done some great things to raise money for Olivia’s Fund, but this event is really going to be something big. Olivia has found a special place in all of their hearts, and they are in turn doing some wonderful things to make this a really special night. Some of the folks have been making really cool themed gift baskets (wine & cheese, spa day, etc.), and our friend Art has made beautiful “Olivia’s Hope” candles. These plus a number of other great things will be part of a raffle, and they are also going to have various games, and dancing hosted by a talented D.J. Please join us if you can! We’d love to see you all there.”

Please keep Olivia in your thoughts and prayers, and hope for a quick recovery.

Thanks as always for your support.
Eric & Christine

Saturday, October 8, 2005 7:47 PM CDT

Hello everyone,

Hope this finds you all doing well and enjoying the fall season. We are doing quite well since we’ve been home from the hospital (three weeks this coming Sunday); actually up until last night and this afternoon, Olivia hadn’t thrown-up at all. And we think she did these last two times only because of excess saliva that she cannot get rid of, not anything more. Other than that, she is doing pretty good! We’re continuing therapy twice a week, and we’re trying to find a heated pool (a hard thing to find in AZ!) so we can continue pool therapy. She’s getting too big to move around in a hot tub like we did last season! One really exciting development is that in the last couple of weeks, we believe we’ve actually seen Olivia smile! This hasn’t happened since last April! That is so encouraging, and it really makes us believe that she does indeed know what’s going on around her.

We had a wonderful visit with my brother Mark and his friend Kathy, including a great party for the Michigan State/U of M football game. Olivia was very disappointed, of course, that her team lost, but as her mother always says, it’s tough being a Spartan;) And we had a wonderful surprise that day…one of my best friends from high school flew into town with his wife and daughter from Chicago, and we were able to spend a fantastic day on Sunday with them! Now we are looking forward to my parents’ visit in two weeks.

We are also thrilled about the party to benefit Olivia that the VFW is hosting. They are an amazing bunch of people who have gotten to know about Olivia through our neighbor and good friend Linda Keyes. They have already done some great things to raise money for Olivia’s Fund, but this event is really going to be something big. Olivia has found a special place in all of their hearts, and they are in turn doing some wonderful things to make this a really special night. Some of the folks have been making really cool themed gift baskets (wine & cheese, spa day, etc.), and our friend Art has made beautiful “Olivia’s Hope” candles. These plus a number of other great things will be part of a raffle, and they are also going to have various games, and dancing hosted by a talented D.J. Please join us if you can! We’d love to see you all there.

Thanks as always for your continuing support. Please keep Olivia in your thoughts and prayers; that she continues to have good days and is able to be comfortable.

Sincerely,
Eric & Christine

Sunday, September 25, 2005 11:26 PM CDT

Hello!

I’m happy to report that we’re home from the hospital! What a relief! We are so thankful that this visit was only five days long, instead of sixteen days like our visit in August. Olivia seems to be doing really well; in fact, she turned the corner on Friday, but they wanted to keep us in through today to make sure her feedings were back on track. She had some sort of virus (she is so susceptible to everything!), and all of the doctors agreed that this had nothing to do with her diseased gall bladder. That’s really good news. Hopefully we won’t have to face the gall bladder issue for a long time.

Olivia’s Uncle Mark (my brother from Michigan) and his friend Kathy have come into town for a visit this week…another reason we’re happy not to be in the hospital! We’re looking forward to spending time with them, and enjoying some cooler Arizona temperatures.

Thanks to you all for your support, and especially for all of the calls, e-mails, and visits while we were in the hospital. We couldn’t get through this without our amazing family and friends!

Christine & Eric

Saturday, September 24, 2005 10:40 PM CDT

Hello, this is Christine's sister, Katie, writing with Saturday's update. Olivia did very well again today, and the doctors continue to increase her feeding rate in anticipation of sending her home soon. Today Olivia's uncle Mark came to visit her, and we all took a long walk together around the hospital and the outside playground, with Olivia in her red wagon.

No vomiting, no diarrhea, no temperature, good color, good feedings = let's go home again soon! Please check back for updates.

Friday, September 23, 2005 10:12 PM CDT

Hello! This is Katie, Christine's sister, writing with Friday's update. Olivia started a very slow feed today (about 10 ml/hour) at about noon and has been doing great! No vomiting since noon yesterday, no diarrhea, and her temperature is normal. She's resting comfortably, and the hope is that the rate of feeding can be increased and then the Hoffmanns can all head home very soon.

Please check back for updates, and keep those thoughts and prayers coming! Thank you.

Thursday, September 22, 2005 11:13 PM CDT

Hello, this is Katie, Christine's sister, writing with Thursday's update. Olivia had another restful day in the hospital, with good doses of phenobarbitol and valium which helps bring much-needed sleep. Although Olivia vomited a couple of times early in the day, she did not produce nearly as much blood as earlier. The doctors think the blood means Olivia has a small tear in her stomach which is bleeding due to the repeated vomiting. Fortunately, the tear will heal itself. Meanwhile, Olivia's temperature and diarrhea episodes are under control -- the doctors are quite sure she's fighting another virus and have ruled out an ulcer or a urinary tract infection. Also, they think this illness is not related to the diseased gallbladder, because Olivia's liver enzymes are normal. Tomorrow Olivia's regular gastroenterologist is scheduled to examine her, and may start a slow feeding if she has a good night tonight. As before, if she can tolerate the feeding for a good period of time, she'll be able to go home. Christine and Eric hope this will be the case, because Olivia's uncle Mark and his friend Kathy are arriving this weekend from Michigan for a visit!

Thank you for your continued thoughts and prayers, and please check back for updates.

Wednesday, September 21, 2005 10:37 PM CDT

Hello, it's Christine's sister, Katie, writing with the latest news on Olivia. After doing so well at home the last few weeks, Olivia is at Phoenix Children's Hospital again, struggling with what may be another virus. It's surprising how quickly things can change: on Monday this week Olivia had a great checkup with her gastroenterologist, but by yesterday she couldn't keep anything down. All day Tuesday she continued to vomit, became dehydrated, and had an elevated temperature. By early Wednesday morning, when she began vomiting some blood, Christine and Eric took her to the hospital. Olivia's neurologist and GI doctor both saw her this morning, and started her on an antibiotic after tests showed an elevated white blood cell count. The good news is that the vomiting has stopped for now, Tylenol is keeping the temperature down, and Olivia had a very restful day today, unlike the last hospital stay when it took her a while to settle down. Next steps will include results from a chest X-ray taken today, a urinary test, stomach fluids test, and additional blood tests. Olivia's neurologist wants to investigate the fairly severe seizures that were going on this morning, which were probably brought on by the vomiting and possibly other factors. For now, Olivia is resting comfortably and is able to get plenty of sleep.

Christine and Eric are optimistic that this episode will pass quickly, and, as always, appreciate your thoughts and prayers at this time. Please check back for updates!

Sunday, September 11, 2005 11:50 PM CDT

Hi all,

We’ve been home from the hospital for over a week, and Olivia continues to do very well, thank goodness! She seems quite comfortable, and we have increased her feedings so that she is back to where she was before our hospital visit. She’s definitely gaining back some of the weight she’d lost, and so far we haven’t had any problems with throwing-up. That’s incredible for her! We’re looking forward to getting our nursing care in place soon (we’ve been approved for sixty hours a month, provided by the state). That’s going to be a big help for me, and it will be so nice for Eric and me to get out of the house together for a change! We’re also looking forward to some cooler temperatures (along with everyone else in Arizona!) so Olivia and I can start up our walks in the stroller again. Even though it feels like this heat has been endless, it is hard to believe that it’s already mid-September. What a year it’s been.

Thanks for all of your support. Please continue to keep Olivia in your thoughts and prayers. We hope and pray she continues to do well. Knowing things can change so quickly, we are thankful for every good day that we have!

Sincerely,
Christine & Eric

Tuesday, September 6, 2005 12:45 AM CDT

Hello everyone!

We are so happy to be home from the hospital! Olivia has been doing really well since we got home this past Thursday afternoon, and I think we’ve both finally caught up on our rest. I was afraid that Olivia would have regressed, being that sick for so long, but we think she is about the same as before we went into the hospital. The only thing we need to work on is getting some weight back on her…fourteen days of no food really took its toll! But the color is back in her cheeks, and she seems as happy as me to be back home again. The timing worked out perfectly, because my Mom flew in from Grand Rapids on Thursday morning, so she was able to help us get settled in at home, and was as always a huge help in taking care of Olivia. Olivia knew that her Nan was here, and I’m sure that was very comforting for her. She went home yesterday morning, but will be back for another visit with my Dad in six weeks.

Thanks to everyone for all of the support you gave us. We couldn’t have made it without you and all of your prayers! And a big thank you to my sister Katie for keeping everyone up-to-date with her daily journal entries. I was in no shape to do that every day, so I really appreciate Kate taking over for us.

Thanks again,
Christine & Eric

Thursday, September 1, 2005 10:48 PM CDT

Hello! This is Christine's sister, Katie, writing with Thursday's update. Great news!! Olivia was released from Phoenix Children's Hospital late this afternoon and is so happy to be home again! Her mom and dad are relieved and happy, too. Olivia's cough is still there, but much better than it was, and she's keeping her food down fairly well. As soon as she settled down on her comfy table in the family room you could see her relax, and she's been peacefully sleeping for the past several hours. Please continue to pray that she keeps improving and getting stronger in the days ahead.

Christine and Eric thank all of you for your prayers and good thoughts during this long, tough time in the hospital. As always, knowing so many friends and family are supporting Olivia, Christine, and Eric makes this easier to bear. Thank you!

Wednesday, August 31, 2005 11:07 PM CDT

Hello! This is Christine's sister, Katie, with Wednesday's update. Last night (Tuesday) was kind of rough: Olivia coughed a lot and ended up vomiting, so today she was tired and slept quite a bit. The feeding is going fine (up to about 1.5 ounces per hour). Her chest congestion continues to lighten up, and she has not had to go back on the oxygen machine - good news. The doctors did not talk today about going home, so we're still being patient. Olivia's Nan is coming tomorrow from Michigan, and she brightens up when she hears about that!

Please continue to remember Christine, Eric, and Olivia in your thoughts and prayers, and check back for updates.

Tuesday, August 30, 2005 10:51 PM CDT

Hello, this is Katie, Christine's sister, writing with an "all-good-news" update for Tuesday. Olivia's lung congestion continues to improve, and the doctors are doing chest physiotherapy and deep suctioning now only as needed (instead of every three hours as before). Also, they took her off the supplemental oxygen machine this morning, and need to see how well she does without it for 24 hours (she's well on her way already). Her feeding is also going well and she's up to about an ounce per hour. Also, Olivia hasn't vomited at all since Sunday! We're hopeful that within the next couple of days Olivia will get the "green light" to head home. She and her mom are very anxious to sleep in their own beds again!

Please keep those thoughts and prayers coming, and check back for updates. Thank you!

Tuesday, August 30, 2005 10:51 PM CDT

Hello, this is Katie, Christine's sister, writing with an "all-good-news" update for Monday. Olivia's lung congestion continues to improve, and the doctors are doing chest physiotherapy and deep suctioning now only as needed (instead of every three hours as before). Also, they took her off the supplemental oxygen machine this morning, and need to see how well she does without it for 24 hours (she's well on her way already). Her feeding is also going well and she's up to about an ounce per hour. Also, Olivia hasn't vomited at all since Sunday! We're hopeful that within the next couple of days Olivia will get the "green light" to head home. She and her mom are very anxious to sleep in their own beds again!

Please keep those thoughts and prayers coming, and check back for updates. Thank you!

Sunday, August 28, 2005 10:49 PM CDT

Hello, this is Christine's sister Katie writing with Sunday's update. Today the doctors think Olivia is starting to improve, as her lungs seem to be clearing somewhat. She still is congested, and the coughing that results continues to lead to vomiting. However, a very slow tube feeding (1/3 oz. per hour) was started today, which should help Olivia gain some strength. Tomorrow her regular pulmonary doctor will examine her lungs and breathing, and may order some additional tests to research the ongoing coughing. However, today Olivia rested comfortably and we hope she will have another day of improvement tomorrow.

Christine, Eric and Olivia thank you for your emails, balloons, and flowers: they couldn't get through this without all of your support. Please check back for updates.

Saturday, August 27, 2005 11:09 PM CDT

Hello, this is Katie, Christine's sister, writing with an update for Saturday. This morning Olivia had another chest X-ray, which showed again she does not have pneumonia or any signs of asthma and is not "any worse." Due to her continued coughing, chest physiotherapy (chest "pounding" and suctioning to loosen phlegm and improve breathing) has been increased to every three hours (from every four). This therapy has been helping Olivia breathe much better and removes a lot of mucous. Her vomiting continues off and on, but nevertheless the hope is that tomorrow she can begin a very slow feeding. The doctors hope she will turn the corner very soon: one day at a time!

Christine and Eric remain in good spirits, and appreciate all your thoughts and prayers. Thank you!

Friday, August 26, 2005 9:46 PM CDT

Hello, this is Christine's sister, Katie, with Friday's update. Due to her coughing, Olivia is vomiting more often and so she still has not started her tube feeding again. Her chest remains very congested, but the doctors continue to say it's a cold, although they're watching her very closely. The good news is that a nasal swab test done today came back negative, meaning she does not have an infection. Also, Olivia's muscle spasms are under control and she is resting comfortably when she's not coughing. Hopefully, she'll start turning the corner soon!

Thanks for your prayers and thoughts - Christine and Eric appreciate them! Check back for updates.

Thursday, August 25, 2005 10:47 PM CDT

Hello! This is Katie, Christine's sister, with Thursday's update. Olivia had another restful day today, but unfortunately had a bad coughing spell in the late afternoon that caused her to vomit, so the feeding needs to wait at least another 12-15 hours. Once she can get through 24 hours of feeding with no vomiting and good blood test results, it may be safe to come home. Olivia still is very congested in her chest, so we hope the prednisone starts clearing that up soon.

Thank you for your concern - it helps to have everyone pulling for Olivia! Keep those good thoughts coming, and check back for updates.

Wednesday, August 24, 2005 11:43 PM CDT

Hello, this is Katie, Christine's sister, writing with Wednesday's update. Olivia slept quite a bit today, but is still coughing frequently when awake. The doctors started her on prednisone to clear her lungs, and will need to get the coughing under control before they feel comfortable resuming the feeding. The plan is that after 24 hours of successful feeding and good blood tests, Olivia will be able to go home. One day at a time!

Thank you for your thoughts and prayers, and please check back for updates.

Tuesday, August 23, 2005 8:44 PM CDT

Hello, this is Katie, Christine's sister, writing with Tuesday's update. Today Olivia has been coughing a lot more, so another chest X-ray was done. So far she has not developed pneumonia, but is battling a chest cold, a tough thing for a kid with MLD. Until the congestion greatly decreases and the risk of pneumonia has passed, Olivia will have to stay in the hospital. Her continuous feeding was stopped for the day because the coughing caused her to vomit, but this turned out OK, as her breathing was easier after that. Overall, the good news is Olivia is resting comfortably between her coughing spells and has not had a high temperature for several days.

As always, Christine and Eric thank you for your thoughts and prayers. Please check back for updates!

Monday, August 22, 2005 10:41 PM CDT

Hello! This is Christine’s sister, Katie, with Monday’s update. After nearly a week, Olivia started a feeding through her stomach tube today, and so far is tolerating it well. She’s getting a very slow, continuous feed of Pedialyte and Nutrin Jr. (liquid nutrition), about one ounce per hour. In addition to monitoring her food tolerance, the doctors are still concerned about the apparent congestion in her lungs. Today a respiratory specialist showed Christine and Eric how to turn Olivia on her side and gently thump her back to help loosen the congestion. It’s still wait-and-see as far as when Olivia will be able to come home, but hopefully soon, if the feeding continues to go well and her lungs start to clear up.

Please check back for more updates – thank you for your thoughts and prayers.

Sunday, August 21, 2005 10:50 PM CDT

Hello! This is Katie, Christine’s sister, writing with Sunday’s update. Olivia had a very quiet day today, resting comfortably. The doctors think she probably does not have pneumonia, but they still haven’t ruled it out. When Olivia coughs (which is not very frequently), it sounds unusual and rather deep, so we’re still not sure what that is. On another front, tomorrow morning comes the big test: the doctors will try a feeding and see if Olivia can keep it down. If she can, and does well over the following 24 hours or so, it may be safe at that point to let her come home. The gallbladder issue is still being researched, and certainly nothing would be done until Olivia is stronger. Christine and Eric are relaxed and confident, and want you to know they’re doing well.

Great news on Olivia’s hikers, Ryan and Dan: they reached Flagstaff at about 12:30 p.m. today! They had a great time over the past ten days, and are excited and proud that they were able to accomplish this feat for Olivia and MLD research. It’s not too late to get involved: see the information above on how you can contribute.

Many thanks for your prayers and good thoughts – keep them coming!

Saturday, August 20, 2005 11:58 PM CDT

Hello! This is Christine's sister, Katie, again with a quick update for Saturday. Due to Olivia’s increased coughing and congestion, she had a chest X-ray this morning to see if she might have pneumonia. The X-ray result was inconclusive, but the doctors are running new blood tests and we should have more information by tomorrow. Although Olivia had an elevated temperature this morning (102), by this afternoon she was resting comfortably again and was able to sleep. Now the doctors are not convinced Olivia’s illness this week is entirely due to her gallbladder, but that the virus she is fighting may be mostly to blame. At any rate, decisions about what to do about the gallbladder will need to wait until Olivia is healthier again.

We hope to have an update on the hikers for you soon. Meanwhile, thanks for your continued thoughts and prayers!

Friday, August 19, 2005 9:17 PM CDT

Hello! This is Katie, Christine’s sister, filling in again with an update on Olivia. She slept well last night (Thursday), and today she was much calmer and able to rest comfortably. We’re all thankful for this, as she was so exhausted from the past several days of agitation. However, last night’s ultrasound test showed that Olivia’s gallbladder is very enlarged and full of “sludge,” and Olivia’s team of doctors agree that this is very likely the cause of her illness this week. MLD patients often develop diseased gallbladders, so this is not unusual. The doctors are now researching possible next steps, and Christine and Eric hope to have some options to consider within the next day or so.

Ryan and Dan are doing great on their Hike for Olivia, and are well ahead of schedule at this point. As of Thursday morning, they were about 50 miles outside of Flagstaff and hope to arrive there two days early. Aside from sore feet and mosquito bites, they’re in good spirits and are having a great time. If you would like to get involved in this fundraiser for Olivia and MLD research, please see the information elsewhere on this web page.

Again, thank you for your thoughts and prayers at this tough time for Olivia. Please check back for updates!

Thursday, August 18, 2005 11:49 PM CDT

Hello! This is Christine’s sister, Katie, writing, because Christine and Eric are at Phoenix Children’s Hospital this week with Olivia.

Starting Tuesday, Olivia couldn’t keep any food down and seemed to have flu-like symptoms. Because of the vomiting and possible dehydration, Christine and Eric took her to the hospital Tuesday evening and she was admitted early Wednesday morning. Although IV fluids and pain medication were started right away, over the past two days she has been very agitated and has been unable to sleep. An early blood test showed an elevated white blood cell count, which indicates some kind of viral infection, but fortunately Olivia has not been running a high temperature.

This evening (Thursday) Olivia seemed much calmer and restful and hopes are high that she will keep some food down starting tomorrow. If that is the case, she may be able to come home by some time Saturday.

As always, Christine and Eric appreciate your thoughts and prayers for Olivia. Please also remember Ryan and Dan on their “Hike for Olivia” from Scottsdale to Flagstaff.

Sunday, August 14, 2005 10:38 PM CDT

Hi everyone!

I’m happy to report that the hikers, Ryan Vink and Dan Hazy, are doing great. T.J. Keyes heard from them this morning (Sunday) and they were near Sunset Point. The weather has been cooperating, and T.J. said they sounded like they were in very good spirits. Thank you for keeping Ryan and Dan in your thoughts and prayers, and please continue to do so as the hike continues.

Thanks to everyone who came to Salty Senorita for the Kick-off party this past Wednesday. It was a great night, and I know Dan and Ryan appreciated all of the support and words of encouragement. It always means so much to Eric and me to see so many of our friends and family together at these events, having a good time and showing their love and support for Olivia. We had a good turn-out on Thursday morning (even though it was so early!), and it was quite something to see those two with their 50 pound backpacks take off down the street as the sun was coming up. Even Olivia was outside to wish Dan and Ryan well, in her own Olivia way! Coincidentally, we received the diagnosis on Aug. 11 of last year, and Dan and Ryan began their hike on this past Aug.11…amazing how things like that happen!

Olivia continues to have relatively good days, and we hope this continues. Her eyesight comes and goes, but more often than not, she does seem able to see at least shapes and figures in front of her. She still sleeps well through the night, which is great for all of us!

Thanks again for all of your support. If you haven’t done so already, you can still donate or pledge to support the hikers, or order your official Hike for Olivia t-shirt (in the next day or so we will update this webpage with info on how to order the t-shirts). We appreciate all you’ve done and continue to do to help!

Eric & Christine

Wednesday, August 10, 2005 5:44 PM CDT

Hello!

Thanks to all for the support you continue to give us, and thank you to everyone who has been so generous in their support of the Hike for Olivia event! The response we have been receiving is overwhelming. We are so excited about the big Kick-off Party tonight at Salty Senorita, and we hope to see lots of you there! Tomorrow morning should be exciting as well; although it’s quite early in the morning, (5:00am!!) we’re hoping for a big turn-out to wish Dan and Ryan well and send them off with a bang. Please join us if you can to show them your support. Basha’s is providing coffee, juice, pop, water, doughnuts, and danishes, and we’re tentatively planning on Scottsdale’s Mayor Manross to be here as well. We’re also hoping for coverage from Channel 12 News. So please join us bright and early (be here by 5:00am) to cheer these guys on!

Olivia is doing quite well. In fact, we’ve had over a full week of nothing but very good days. This is so encouraging, and we hope it continues. I like to think that we’ve finally found the right timing and balance of food and medication, and that Olivia has stabilized for the time being. But as always, we just have to take one day at a time and hope for the best!

Thanks again to everyone for your support. I’ll let you all know within the next couple days how everything goes with the Kick-off events, and we’ll keep you posted on how the hikers are doing throughout the next two weeks. Please keep them in your thoughts and prayers as they take on this incredible adventure!

Sincerely,
Christine & Eric

Wednesday, July 20, 2005 1:44 PM CDT

Hello!

Thank you to everyone who has purchased Olivia’s Recipe Book! We are getting such good feedback about the book, and we still have plenty available. So if you haven’t done so yet, please order yours soon! One person I forgot to mention in the last journal entry is Marie Briganti-Peterson, who went above and beyond in the help she gave recruiting recipes. Thanks, Marie!

We are really excited about the newest fundraising event that has just been announced: a Hike for Olivia! You can read about it and find out how you can help above. We are so impressed with these guys and their dedication to this undertaking, especially considering that they will be hiking during the hottest month of the year! T.J. Keyes, the “brains” behind the event, has also been amazing in his drive to make this as successful as possible. We’ll keep you posted on the details as we get closer to the big day. We’re expecting lots of media coverage, which we really need to make as many people as possible aware of MLD and the need to fund research for a cure.

Olivia is doing relatively well. She continues to have more good days than bad, which of course we are thankful for. Last week we met with our gastroenterologist’s nurse practitioner and nutritionist, and overall they were happy with how she is doing. Her weight gain has been steady, despite the fact that every few days she has a day when she can’t keep anything down. Fortunately this usually only lasts for twenty-four hours or so, but what makes it really challenging is that she can’t keep her meds in, which creates more pain. The nurse said this is not totally unusual for kids with feeding tubes, and since her weight gain has been steady, we shouldn’t worry too much about it. One positive thing that has been happening lately is Olivia seems able to see more often. We’re not sure why, and she doesn’t always appear to be seeing, but we sure do make the most of it while we can!

We always appreciate all of you support. Please keep in mind that if you make a donation to Olivia’s Fund, the bank will not let us know who has donated. So even though we cannot thank you personally for your contribution, we appreciate what you’ve done! And the visits, cards, e-mails, and phone calls help so much. I’ve said this many times before: We could not get through this without the support we receive from all of you.

Sincerely,
Eric & Christine

Wednesday, June 22, 2005 3:39 PM CDT

Hello family and friends!

Greetings from sunny and extremely warm Scottsdale, Arizona! Thank goodness for our swimming pool, which allows us to be outside and get some fresh air. Olivia has been enjoying it too, and continues to do well with her pool therapy.

Since we got out of the hospital two weeks ago, she has done better than ever, except for a couple days this past weekend when she had a hard time keeping her food down. But we think that has passed, and she is able to take in almost 30 ounces of Pediasure a day, which for her is fantastic! Olivia’s Pop was just here for a visit, and he commented a number of times on how full her cheeks have gotten. We love to hear that! We had a great visit with Pop, and I can confidently say that Olivia’s favorite part was when he played the piano for her while she sat in her beanbag chair next to him. And one night, Olivia just couldn’t fall asleep (she wasn’t in any pain that we could see), so Pop sat with her for almost two hours during the middle of the night until she finally drifted off. Personally, I believe she didn’t want to miss a second with him!

We’re so excited about Olivia’s Recipe Book! Eric’s aunts, Becky Dellow and Betty Aguilera, as well as Betty’s daughters, Teresa and Katy, did such an amazing job putting it together. We are so grateful to them as well as to everyone who contributed recipes. If you’d like to order a book, the details are above on the webpage. Thanks again to everyone who helped make it such a great cookbook!

As always, your continuing support means so much to us, and helps give us the strength we need to get through the day. We appreciate you keeping us in your thoughts and especially in your prayers. Thank you!

Eric & Christine

Wednesday, June 8, 2005 0:03 AM CDT

Hi everyone!

We’re happy to report that Olivia is doing quite well after spending this past weekend at Phoenix Children’s Hospital. She started with the flu last Thursday morning, and by Friday night things had gone from bad to worse, so her doctors sent us to the emergency room. By Saturday morning they had admitted us and hooked her up to an I.V. because she was so dehydrated. We thought things were under control, but after we got settled in our room, her temperature spiked to 107 (!!!). Thank goodness we were at the hospital! They got it back down quickly, and did a spinal tap to check for meningitis. Fortunately it came back negative, as did all of the tests they did for the most common viruses. By Saturday night her temp was normal, and we had the vomiting under control. They did keep us in the hospital until Monday night, just to make sure everything was working as it should, and she could keep her food down. Unfortunately through all of this, Eric was also really sick with a bad virus. This confirmed the doctors’ suspicion that she had a virus and nothing more. We don’t know specifically which one, but the good news is she’s over it, and we’re back at home feeling much better!

We received both the continuous feed pump and the bath chair, and they are definitely helping to make the daily routine a little easier! With the pump, she’s fed throughout the night, which gives her a good amount of food at a slow pace, so she’s more likely to keep it down. And bath time is actually almost enjoyable again! Once she’s in her chair and comfortable, she’s quite relaxed, and we keep her in as long as we can with lots of steam (good for her lungs). We’re still having physical therapy two times a week, and now we can have pool therapy in our own pool because it’s finally warm enough (this Michigan girl has turned into a wimp…I can only be in the pool if it’s above 82!). She definitely still benefits from therapy, and we’re glad to have our therapist Melissa part of the “team”.

Thanks as always for your prayers. We appreciate everything that you all do for us. We couldn’t get through this without your support!

Christine & Eric

Thursday, May 19, 2005 5:34 PM CDT

Hello!

Thanks to everyone who helped make Olivia’s third birthday such a special day! I believe she understood that it was her birthday, and that she enjoyed the day as much as we did. We sang “Happy Birthday” to her a bunch of times because it has been one of her favorite songs. Last year she made us sing it to her until we were blue in the face, so we did it again this year with the hope that she liked hearing it as much as before. We received so many cards, gifts and phone calls, and we really appreciate it!

Olivia seems to be feeling ok, although in the last few days we’re having a problem again with her not being able to keep her food down. This makes us nervous, not to mention how awful it must make her feel. But we deal with it and try to keep her as hydrated as possible. Hopefully soon we’ll get through the bureaucracy and get a continuous feed pump (it’ll feed her over a number of hours while she’s sleeping), and that will hopefully solve that problem. We’re also waiting for a special bathing chair to arrive, and that will make bath time a much better experience, we hope! One definitely learns patience while dealing with insurance and an unusual situation like Olivia’s.

We had a “routine” visit with Olivia’s neurologist last week (he is the one who handles her the closest), and he confirmed what we suspected, that she can only see shadows. Her hearing is just fine, though (and should continue to be), and she definitely likes to hear our voices. She listens to music and even her favorite TV shows, and she seems to still enjoy that a lot. Even though we’re having difficulties always keeping the food down, Olivia has gained five pounds since the g-tube was put in (January), and Dr. Bernes was very happy with that. And she keeps getting taller and taller, just like her Dad! The doctor mentioned again how surprised he is at the speed of her regression, although hopefully now we have plateaued for a while. Time will tell!

Thanks again for your continuing support. This is such a challenging thing we’re going through, but all of you help to make it a little more bearable with all the different ways you help us. We are so thankful!

Sincerely,
Eric & Christine…
And Lil’ Olivia, who’s now a big three-year-old;)

Sunday, May 8, 2005 9:21 PM CDT

Hello everyone!

Olivia is doing relatively well, and after a few days of heavier-than-usual congestion earlier this week, she seems to be back to “normal”. We visited her doctor, and thankfully her lungs were clear, although she did have a slight ear infection. Nothing that can’t be helped with antibiotics…

We’re having a very nice visit with Nan, and last week we had a great time with Uncle Mark. Olivia seems to know when she has visitors, and she always perks up when she hears Nan’s voice. She even turns her head when she hears Nan talk to try and see her!
Later this week our dear friend Kelly is coming out from Portland to help us celebrate Olivia’s birthday, and we’re all looking forward to that. Olivia will be three on Tuesday the 17th. It’s hard to believe how fast time goes!

Olivia has been making good progress with her physical therapy lately, which is very encouraging. Melissa is able to get a lot of movement in the hot tub, which is very good for her lungs. And this past Thursday, Olivia actually sat up in her carseat, which she hasn’t done since last fall! She looked like such a big girl! We are so thankful when we have such good sessions like that one.

We appreciate all of you keeping us in your thoughts and prayers. It means so much to us knowing that there are so many people who are thinking about and supporting Olivia!

Eric & Christine

Tuesday, April 12, 2005 6:59 PM CDT

Hello family and friends,

I have to start by saying how much we appreciate the support we continue to receive from all of you. The calls, visits, and e-mails help us get through every day. It helps so much knowing that there are so many people praying for Olivia, and I know that is what is giving us the strength to deal with this. We also continue to experience the kindness and generosity of people we’ve never met, which is so amazing! As a friend said so well recently, there are “hidden blessings” through this experience, which I thought was such a great way to put it.

Olivia is quite a bit calmer since taking the Phenobarbital, and she spends a lot more time dozing throughout the day. The spasms have definitely decreased, so she is in less pain which makes us very happy. We’ve been taking advantage of this (and our beautiful weather!) by putting Olivia in her stroller and walking to some of our favorite neighborhood restaurants. It’s been great to take her out and feel somewhat like a “normal” family again! We are still having physical therapy once a week, and during it we work on stretching and getting some movement (Olivia is typically very stiff and her muscles tight). We’ve also recently begun weekly water therapy, and she has responded well to this. Very encouraging! It is so nice to see her bending those knees and elbows! We are still struggling to figure out the right balance of food and timing with her feeding tube. Frequently she has a hard time keeping even a small amount of her Pediasure down, and an even harder time with the meds. So the next step we are looking into is a pump that would drip the food in over an eight hour period during the night. Hopefully this will help. Yet another one of the hurdles we run into…just when we think we have something figured out, a new challenge appears. Never a dull moment!

We’re looking forward to another round of visitors coming up soon. Uncle Mark (my brother from Michigan) will be here for a week, and then Olivia’s Nan comes for a long weekend to help us celebrate Mother’s Day. After that our dear friend Kelly from Portland will be here for Olivia’s birthday. Yes, her third birthday is coming up in just a few weeks! It’s hard to believe how much has happened to Olivia in the past year, but we’re thankful that we’ve made it this far, and we appreciate every day we have with her.

Thank you again for all of your support. We appreciate you keeping us in your thoughts and prayers. And thank you for all of the donations made to Olivia’s Fund…the generosity is overwhelming!

Christine & Eric

Monday, March 21, 2005 8:29 PM CST

Hello!

We cannot say Thank you enough to all of you who were a part of the Bowl for Hope event this past Saturday night! It was an amazing evening! We are still so overwhelmed by how successful the whole thing was, and how incredible all of you are. Not only are we blessed with the most wonderful friends and family, we are so amazed by the generosity and kindness of people we don’t even know! Olivia has touched so many people, and it was such a great feeling to see that entire bowling alley filled with people who want to help her and support the cause of finding a cure. A really huge, heartfelt THANK YOU to everyone at Spark Design for all their hard work to make this event so successful and fun! You are all so talented and generous, and we appreciate all of the time and energy you devoted to make it so enjoyable and run so smooth.

Olivia has begun to take Phenobarbital because she has recently started to have small seizures, which usually lead to painful muscle spasms. This is making her even more sleepy and “out of it”, but it’s worth it to keep her calm and comfortable. In a selfish way, it’s hard to lose the little amount of interaction we had with her, but it is definitely in her best interest, and that’s what is important. Also, her eyesight is almost completely gone, although we think occasionally she can see shadows, and light and dark. Her hearing is still very good (and should continue to be), and she does seem to respond to familiar voices. My Mom and Dad are still here from Michigan (they return on Tuesday), and Olivia loves to listen to their voices, and to hear Pop play her favorite songs on the piano (Do Re Me and Twinkle Twinkle Little Star). We have had a great visit with them, and we’re so happy that they were able to be here for the bowling event. We also had a surprise visit from our dear friend Marie Briganti who now lives in Michigan with her family. Rik & Lisa flew Marie out so she could be here for the big weekend, and it was such a wonderful surprise (we hadn’t seen her since ’99!). Our friends never cease to amaze us!

Thank you again to all of you for your continuing support. Please keep us in your prayers. We couldn’t do this without you!

Christine & Eric

Tuesday, March 8, 2005 11:46 PM CST

Hi everyone,

Thanks to everyone who watched the Channel 3 broadcast this past Sunday, covering the upcoming Spark of Hope bowling event benefiting Olivia and MLD research. We’re so happy to get the word out about this great event, and let people know about Olivia’s story, MLD and the need to promote research for a cure. Hopefully we will be able to set up a link to the segment on this web page so everyone can see it. I’ll keep you posted.

We’re happy to report that Olivia’s Nan & Pop (my Mom & Dad) arrived in sunny Arizona this afternoon, just in time to escape more snow in Michigan. Olivia let us know in her own way that she was very happy to see them, and we’re looking forward to spending lots of time with them. Pop already played the piano for her, and took her for a walk…two of her favorite things to do!

Olivia is doing well for the most part with her feeding tube and keeps gaining weight. It’s amazing how much healthier she looks. Even her skin tone is better, and her cheeks are almost rosy again. She’s got to be much happier having a full tummy! We’re still trying to do our best to keep Olivia as comfortable and calm as possible, and some days are quite good, others are difficult. On a really bad day, Olivia can cry for hours and hours. Fortunately, this doesn’t happen too often! But we treasure all of our time we have with her, especially when she gives us that beautiful and rare smile.

Thank you again for all of your support. I’ve said this before and I will continue to say it…we COULD NOT get through this without all of the help we continue to receive from all of you. We are so blessed to have the incredible support system that we do.

Christine & Eric

Don't forget...Spark of Hope-Benefiting Olivia wristbands are now available! Please visit http://sparkofhope.org

Wednesday, March 2, 2005 11:23 PM CST

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Please tune in to the 5:00pm news on Channel 3 (KTVK) this Sunday evening (March 6)! They are doing a story on the Spark of Hope Benefit, Olivia and MLD! This is a fantastic way to get the word out about this great event, and educate the public about MLD. Please check it out and spread the word. Thanks!

Now Available: "Spark of Hope - Benefiting Olivia" wristbands
Please go to: http://sparkofhope.org

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

Hello!

First of all, thank you to everyone who sent Valentine’s Day cards and gifts to Olivia! We hung as many cards as we could on the stand that holds her feeding tube, so she can look at them frequently. Thanks, too, for all of the other cards, e-mails, and phone calls. The support and encouragement we continue to receive from all of you is unbelievable!

We are also so appreciative of all the work everyone at Spark Design is doing in preparation for the Spark of Hope bowling event to benefit Olivia and MLD research (please check out the link below for more information). It’s going to be a great evening, and we are so thankful to everyone who is donating items and services for the silent auction and raffle.

Olivia continues to do well with her feeding tube overall, although we’ve had a few bumps in the road lately…She’s throwing up more than she should, so we’re experimenting with how much and how often we feed her, in hopes that we will find the right combination. And she’s had a reaction to the medicine the doctor used to “burn” off some extra skin tissue around the g-tube, so she’s lying on her back more than usual so there’s no pressure on her tummy. But we’re confident this will clear up soon. We are still really enjoying walks in the stroller, although lately it’s been too rainy to be outside (feels like Michigan!). Hopefully we’ll have warm weather and sunshine for Nan and Pop’s visit in less than two weeks. Olivia is looking forward to that.

Thank you again for your support. Please remember that we are unable to know who donates to Olivia’s Fund, so we cannot thank you individually, but please know that we appreciate your generosity!

Eric & Christine

Thursday, February 24, 2005 6:04 PM CST

Hello!

First of all, thank you to everyone who sent Valentine’s Day cards and gifts to Olivia! We hung as many cards as we could on the stand that holds her feeding tube, so she can look at them frequently. Thanks, too, for all of the other cards, e-mails, and phone calls. The support and encouragement we continue to receive from all of you is unbelievable!

We are also so appreciative of all the work everyone at Spark Design is doing in preparation for the Spark of Hope bowling event to benefit Olivia and MLD research (please check out the link above for more information). It’s going to be a great evening, and we are so thankful to everyone who is donating items and services for the silent auction and raffle.

Olivia continues to do well with her feeding tube overall, although we’ve had a few bumps in the road lately…She’s throwing up more than she should, so we’re experimenting with how much and how often we feed her, in hopes that we will find the right combination. And she’s had a reaction to the medicine the doctor used to “burn” off some extra skin tissue around the g-tube, so she’s lying on her back more than usual to reduce the pressure on her tummy. But we’re confident this will clear up soon. We are still really enjoying walks in the stroller, although lately it’s been too rainy to be outside (feels like Michigan!). Hopefully we’ll have warm weather and sunshine for Nan and Pop’s visit in less than two weeks. Olivia is looking forward to that.

Thank you again for your support. Please remember that we are unable to know who donates to Olivia’s Fund, so we cannot thank you individually, but please know that we appreciate your generosity!

Christine & Eric

Friday, February 11, 2005 0:18 AM CST

Hello family and friends,

Olivia continues to do very well with her feeding tube; in fact, we saw the surgeon for a follow-up visit this past Tuesday, and Olivia had gained four pounds! We are so thrilled, and it has removed so much stress for Eric and me. Not to mention how good Olivia must be feeling! Even her skin-tone looks great.

Despite having a full tummy, Olivia does still struggle with pain, although it’s hard to pinpoint where and what’s causing it. She seems to be agitated much more frequently, and it’s becoming more challenging to keep her calm. Also, her vision seems to be declining. It seems as if she cannot see far away, and sometimes even up close she has a hard time focusing. She’s happiest when we are nose-to-nose with her, and actually, so are we!

Regardless, we make the best of each day and continue to put one foot in front of the other. Please keep us in your thoughts and prayers, and as always, thanks to each and every one of you for your support!

Eric & Christine

Thursday, February 3, 2005 4:00 PM CST

Hi everyone!

Thanks to all of you for all of the kind notes, e-mails, and phone calls we’ve been receiving over the past week. It’s so good to know that so many people are thinking about us and especially Olivia.

She is doing really well, and continues to gain weight every day! We are so thrilled with her progress, and it is such a relief to us. The stress of worrying about feeding her and getting all her meds in is gone, and we are so happy. Olivia has been able to lay on her back (until last week that was way too uncomfortable for her) which makes access to the feeding tube even easier. And she is tolerating, even enjoying lying in her stroller, so we’ve been able to take walks outside and get some fresh air. Good for both Olivia AND me! Yesterday we went on an outing to a friend’s house for the morning, and Olivia did really well. Overall she is so much more comfortable, which means we’ll be able to do a lot more than we have been!

Thanks again for all of your support. We couldn’t get through this without it!

Christine & Eric

Wednesday, January 26, 2005 1:12 PM CST

Hello!

On Monday, Olivia did very well during her surgery to place her new feeding tube. The procedure itself went fine; but Olivia struggled with pain and spasms while she was waking up in the recovery room. The doctors sent us home Monday afternoon, and as soon as we walked in the door and put her on her table, we could tell she was relieved to be back in familiar surroundings. Tuesday we began using the tube – Olivia’s volunteer nursing staff (Christine, Carol – Olivia’s grandma, and Katie – Olivia’s aunt) managed to figure out how to administer both medicine and liquid food through the tube. Also, yesterday afternoon we followed up with one of the surgeons, who told us everything is looking good. We meet with the gastroenterologist tomorrow to talk more specifically about nutritional needs, etc. We have been so impressed with all of our doctors and nurses, and appreciate their understanding of our particular insurance needs. It looks like Olivia is responding very well to the tube: so far no vomiting or diarrhea. We think it may be a few days yet before the anesthesia is fully out of her system; we’ve had some increased crying spells because of bad spasms, and she may be hallucinating at times. Hopefully this will stop soon.

Thank you very, very much for all of your prayers and support overt the last few days. We’ll keep you updated on the progress, and hopefully soon we’ll see an increase in Olivia’s weight and strength!

Thanks again,
Eric & Christine

Saturday, January 22, 2005 4:57 PM CST

Hello all,

Thank goodness, it looks like we will be having surgery on Monday to place Olivia’s feeding tube! What a relief! We’ll go into Phoenix Children’s Hospital Monday morning, surgery will be in the afternoon, and we’ll stay in until Tuesday afternoon. We’re really looking forward to this; it’s going to make Olivia much more comfortable, and take a lot of stress away from us!

My mother comes into town tomorrow morning for a visit and to help out this week. We can’t wait to see her. I got a lot of smiles from Olivia this morning when I told her Nan would be here soon!

We just want to say THANK YOU again to everyone who has donated to Olivia’s Fund and to all of you who have participated in fundraising events to benefit Olivia. We could not have this surgery on Monday without all of the help you have given us (her insurance is not in place yet, so we are paying for the procedure out-of-pocket), and we appreciate it so much. The kindness we’ve experienced is overwhelming, especially when people we don’t even know help out. Here’s a great example…when we came home from the hospital this past Thursday (Olivia had to have some tests done, which she handled quite well), we received in the mail a note from the Blackberry Rangers 4-H Club in Hinckley, IL, with a sizable donation to Olivia’s Fund! The timing was absolutely perfect, because we had just written a (large!) check out to the hospital to pay for those tests, and were feeling quite discouraged about the lack of insurance. Thank you, Blackberry Rangers 4-H Club, for brightening our day and raising money for Olivia! Aren’t people amazing?!?

Please keep us in your thoughts and prayers, especially on Monday and Tuesday. We’ll be in touch next week to let you know how it all went. And don’t forget to tune into ABC’s Extreme Makeover-Home Edition this Sunday night, where they will make over the home of a young woman with Krabbes Leukodystrophy (similar to MLD). This is going to be a great way to make the public more aware of leukodystrophies.

Thank you for all of you support!

Christine & Eric

Thursday, January 20, 2005 1:02 PM CST

Hello!

First a big THANK YOU to Brian DeVries and Tom Wolf who ran the P.F. Chang’s marathon, and raised a significant amount of money for Olivia’s Fund. The dedication, time and training that these guys put into this event is unbelievable! We were all at the race to cheer them on, and it was so overwhelming to see them, knowing they were doing it to help Olivia. It was truly amazing! Please check out each of their links below to read what they had to say about the experience. Thanks again, Tom and Brian!!

We’re getting closer to having a feeding tube placed, however yesterday we ran into a dilemma with insurance coverage. We are scheduled to go into the hospital next Monday the 24th to have the surgery, however, if her state-funded insurance goes through, we will have to postpone the surgery and “start over” with new doctors who work with the state program (our private insurance will not cover her). We cannot wait much longer to have this done, so we of course are hoping that the government works at its usual slow pace. The down side is that once she does have this coverage, they do not cover surgical procedures and hospitalizations retro-actively, so we will be paying for this entire thing out-of-pocket. At this point, we are totally willing to do that, because she needs the feeding tube so badly. And thanks to all of you, Olivia’s Fund will be able to cover it! We can’t thank each of you who have donated personally (the bank does not let us know who has donated), but please know how much we appreciate your generosity! And thank you, too, to everyone who has worked on all the various fundraisers and events to raise money. Without you, we could not do this! Please hope and pray with us that we are able to have the surgery next Monday. We’ll keep you posted…

This afternoon we’re heading to Phoenix Children’s Hospital to have a chest x-ray and a swallowing test (to see how much fluid goes into her lungs), and an upper g.i. (in preparation for surgery). And all during nap-time! Hopefully Olivia will be a little trooper and get through it all smoothly.

We will keep you informed regarding the surgery, and please keep us in you thoughts and prayers especially over the next few days.

Thanks again for ALL of you support!
Christine & Eric

P.S. Please check out ABC's Extreme Makeover- Home Edition this Sunday night...they are "making over" the home of a young woman with Krabbes Leukodystrophy (very similar to MLD). We need to get the public more familiar with the leukodystrophies, and this is a great way to do it!

Monday, January 3, 2005 11:08 PM CST

Hello and Happy New Year!

Hope this finds you all well as we begin another year. We hope 2005 brings us happy times with Olivia, and of course we always hope for a miracle! In the mean time, we'll enjoy every day with her and treasure every smile.

We had a great time in Michigan, and Olivia seemed to really like being at Nan and Pop's. She especially loved hearing Pop play the piano just for her! We definitely had a great Christmas, but as always, it's nice when the Holidays are over and we get back into a more normal routine. That seems to be especially important to Olivia.

Regarding Olivia's health, she has been getting more spastic lately, which means more pain. We're doing our best to keep it under control with medication. Next month (hopefully sooner if we can) we're meeting with a gastroenterologist to start the process for a feeding tube. That will make Olivia a lot more comfortable, and make our lives easier, too! She is still able to eat and drink, but it's such a long process, and she does not get as much as she should. It will also be a lot easier to give her the meds. I think she'll be much happier, and hopefully have more energy and strength, too. Olivia's physical therapist still comes once a week, and helps with positioning to keep her joints loosened and her lungs clear.

As always, thank you for your continuing support. It's what helps us get through each day. And that's the only way we can do it...one day at a time!

Eric & Christine

Thursday, December 23, 2004 3:11 PM CST

Happy Holidays to you from Michigan! Olivia, Eric and I arrived in (chilly!) Grand Rapids last night, and we are so happy to be here. We’re looking forward to seeing lots of family and friends and having a white Christmas. Olivia is all settled in at Nan and Pop’s, and even has her own comfy table close to the fireplace and a Christmas display that Pop and Nan made just for her. Thanks to Keith Van Kooten who made a platform to raise her table so she can see even better.

Olivia had a very special visit from Santa Claus this past Tuesday, courtesy of two of Santa’s elves, Linda and Tricia Keyes (the best neighbors ever!). He took time out of his busy schedule to drop in at our house and deliver a big teddy bear. Olivia really seemed to enjoy it! It was so nice of Santa to come see us.

Thank you all for your continuing support. As we get close to the end of this year and think about all we’ve gone through in the past six months, we are reminded how important our family and friends really are to us.

Merry Christmas to you all! We hope you enjoy the Holiday!

Christine & Eric

Monday, December 6, 2004 6:36 PM CST

Hello!

Hope you are all enjoying the holiday season, and a belated "Happy Thanksgiving" to you! We are especially thankful this year for all of you, our friends and family. All of the thoughts and prayers, e-mails and cards, phone calls and visits that we continually receive help to make this journey a little easier.

We had a great Thanksgiving here at our house with Eric's Mom, Dad and brother, my sister Katie and her family, my cousin Betsy and her family, and our dear friends Rik and Lisa. Olivia slept through dinner, but she definitely had her fill of turkey and all the fixin's after her nap! It was a really nice day. Eric and I wrapped up a great Holiday weekend with a trip out of town to a golf resort with some of the gang, and Olivia stayed with our friends Alysse and Dan and their son. Olivia reportedly received lots of hugs and kisses from little Tyler, which she loved! This past weekend the three of us headed up to our friend's cabin in snowy Flagstaff and had a great time getting into the Christmas spirit! Olivia can travel quite comfortably in her new restraint system (it allows her to lay on her tummy in the back seat), which is a huge relief to us.

Lately Olivia seems to be getting more uncomfortable and more spastic, but hopefully we will be able to get this under control with medication. It's frustrating because she cannot communicate anything to us, but we're doing our best to figure out her needs and keep her as comfortable as possible. We met with a pediatric pulmonary specialist this past week, and she detected some possible asthma, so we've begun daily breathing treatments which will hopefully help. The doctor also ordered a chest x-ray and swallowing test. The main goal is to prevent as much as we can (including food and saliva) from going into her lungs which promotes pneumonia. So far this season she hasn't caught any colds and we pray that she doesn't!

We're really looking forward to going to Grand Rapids for Christmas, and Olivia brightens up when we tell her we'll see Nan and Pop soon. We're doing our best to make this an exceptionally special Christmas for her, and she's already been enjoying all the lights on the tree and throughout the house.

We appreciate your continuing support. Thank you, too, to those of you who have donated to Olivia's Fund. The bank does not let us know who has made deposits, so we cannot thank you personally, but please know how much we appreciate your generousity.

Enjoy this holiday season!
Christine & Eric

Sunday, November 14, 2004 9:42 PM CST

Hello!

We have been so busy enjoying all of our company from Michigan, it's been hard to keep up on the journal! We had a nice visit with my brother Mark from Grand Rapids. He was here for Halloween, and Olivia had fun trick-or-treating with him and her cousins. She looked so cute in her black and orange, and did very well being pulled in her wagon while the other kids collected candy. Check out the pictures! After Mark was here, my Aunt Jeanne DeBorst and cousin Liz VanderHeide came for a long weekend, which was loads of fun. Olivia had a great time with "Gi-gi"! Currently my Mom is visiting, and as always, we love to be with Nan.

Olivia's condition is about the same. We saw her neurologist this week, and he recommended that we see a pediatric pulmonary specialist who will teach us some techniques to keep fluids out of Olivia's chest (we MUST avoid her getting sick, especially pneumonia). Other than that, we will continue doing everything else as we have been. Olivia's therapist visits once a week and helps us with stretching techniques and positioning. This week she'll help us figure out our new Tumble Forms system, which will help us position Olivia in lots of different ways, and hopefully allow her to sit up to eat (right now we feed her as she is lying on her tummy). Thank you so much to my old college friend Al Kreitl who helped us get the tumble forms system at a significantly reduced price!!

As always, thank you to everyone for all of your continued support. The generousity and love and concern of all of our family and friends is so amazing, and gives us the strength to get through one day at a time.

Eric & Christine

Wednesday, October 20, 2004 0:51 AM CDT

Hello friends and family!

First a big THANK YOU to Kevin & Nance Walz for putting together their very successful garage sale, and to Ruben for hosting it at his place! And thanks, too, to everyone who worked the sale and to those who donated their stuff. I'm sorry we weren't able to stop by, but from what I've heard, everybody who participated had a great time!

We also appreciate Rik & Lisa holding a raffle to benefit Olivia at the recent Riki Tiki Party, and Kelly & Chad donating the money they made at their garage sale in Portland, Oregon. And of course we want to say thanks to everyone who has been contributing to Olivia's Fund. We've recently used some of the money towards medical bills, and we also plan to purchase a tumble forms system that will allow us to position Olivia in lots of different ways (insurance will most likely not cover the cost). Again, thanks to everyone who has contributed!

Olivia continues to be quite a happy little girl, despite the fact that she is regressing more quickly than we were expecting. She is no longer able to be in any other position other than on her tummy or stretched out in Mom or Dad's arms, and she is not talking at all anymore. We saw our neurologist recently, and he was also surprised at the speed of her regression. He has started us on an alternate to Vioxx, and she's also taking something to help slow down the spasms. So we are able to keep her relatively comfortable, and we still get lots of smiles and laughs which we treasure dearly.

We've been enjoying lots of visits from friends and family, and even though Olivia can't participate with other kids, she loves being around them. We had a great visit with my Mom and Dad from Michigan, and now we're looking forward to seeing Uncle Mark (my brother, also from Grand Rapids). And it was so nice to see so many relatives at the Haro Family picnic this past Saturday!

Thanks as always for your continued prayers and support. We really could not get through this if it wasn't for all of you!

Eric & Christine

Thursday, October 7, 2004 3:37 PM CDT

Thank you to everyone who came to Furio last night and helped to make it a great evening! It was so nice to see so many friends and family, and I hope eveyone enjoyed themselves as much as we did. Thanks, too, to Iain Findlay and Jennifer Davison for putting the event together. We appreciate everything you did to help make it so successful!

Olivia has had a good week so far. We had our first physical therapy session this Tuesday (we'll have weekly sessions at our house). Soon we'll begin occupational therapy as well. Our "team" is even discussing the possibility of Horse Therapy for Olivia! Wouldn't that be fun!

Olivia's Nan & Pop arrive from Grand Rapids this evening for a week-long visit; we're all looking forward seeing them.

Thanks as always for your continued support. We couldn't get through this without all of you!

Christine & Eric

Saturday, October 2, 2004 1:51 AM CDT

Olivia had a very busy week enjoying visits with lots of friends and family! Grandma and Aunt Bernice came up with an ingenius way of making her red wagon very comfortable (Olivia's best position is flat on her tummy), so now we'll be able to go for walks and enjoy our beautiful weather! We're looking forward to a visit next week from Nan & Pop (my parents, Dick & Carol Gootjes from Grand Rapids, MI). As usual, Olivia gives her biggest smiles to her cousin Alex, who always knows how to make her laugh.

We can't wait to see lots of you next week Wednesday at Furio! It should be a great evening, and even if you can't make it for dinner, please stop by for a drink!

Thanks as always for the support you continuously send. We are so blessed with an amazing circle of family and friends!

Christine & Eric

Saturday, September 25, 2004 6:38 PM CDT

Today we visited the Garage Sale held at Kym Hamman's home...what an incredible success! THANK YOU to everyone who donated items, and to everyone who worked (top salesperson recognition definitely goes to Noelle...who else could sell a muffin for $8?!?). Thanks, too, to Kym for hosting it. As I've said before, what great family and friends we have!

We appreciate your continuing support!
Christine & Eric

Tuesday, September 21, 2004 11:47 PM CDT

WOW! Thanks to everyone who has visited Olivia's web page! It is truly amazing to us that we are so blessed with such wonderful and caring family and friends! Thank you for your continuing thoughts and prayers and words of encouragement. Thanks, too, to everyone who has donated to Olivia's Fund. We really appreciate it!
We received word from the specialists at the University of Minnesota (we spent three days visiting them a few weeks ago) that they do not recommend a bone marrow transplant. We expected to hear this, but nonetheless, it is discouraging because that is the only treatment available at this time. But we must remain hopeful that something else comes along, and continue to keep Olivia as comfortable and happy as possible. As those of you who have recently seen Olivia know, keeping her happy is an easy task...she's just as cheery and full of hugs and kisses as ever!

Thursday, September 16, 2004 3:24 PM CDT

Thanks for checking out Olivia's new website! We'll have more information on it soon. Olivia's doing great - she's still just as happy and smiley as ever, and is enjoying going to "school" with Mommy! Olivia and I are attending a Moms and Twos class once a week at a nearby church. She loves spending time with the other kids. Keep checking back for more updates, and thanks for your continued prayers and support.

Monday, September 13, 2004 11:23 PM CDT

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