History

Wednesday, February 8, 2006 2:53 PM CST

Hi everyone,

I had my surgery on January 27th. Everything went fine. There is nothing really wrong with my lung medically. The doctor says the entrance to that branch of my lung is smaller than it should be. Other than that my lung looks really good. She did do a culture to see if anything has been growing in there. She seems to think it may be a birth defect, she said she wasn't sure if MTM could be the cause or not. I did have to have one testicle taken out. They said it was deformed and should come out. The other one was put in place with no problems. Boy was I sore for a few days. Mawmaw was laughing at the faces and sounds I was making. She said she had never seen me act like that before. Guess I was never in pain before. Well, I'm back to my usual self now. Hopefully, I can go back to school next week. Mawmaw has to go to a meeting at school first to get things back on track for me.

I would like everyone to keep my new friend, Oliver and his family in their prays and thoughts. Oliver and his family are having a hard time right now and need all our prays. Also keep little Archie's family in your prayers too. Archie pasted away recently and I know they are really missing him.

Hope everyone else is doing good.

Love,
Kyle

Wednesday, January 18, 2006 9:14 PM CST

It's hard to believe this year has just started and this month is already half over.

Even though Kyle still has a colapsed lower right lung it has been a good month so far. The lung seems to be bothering me and the doctors more than Kyle. He continues to improve in strength. He is learning to go from his power chair to his gait trainer by himself. He is scheduled for surgery on the 27th of this month for a broncioscope (not sure if spelled right). They are going to see what is causing the lung to stay colapsed and take out whatever it is. It is suppose to be in and out surgery unless there are complications with his breathing after the surgery.

Connor came home from the hospital. Kyle is very happy about that. He has to tell everyone the baby is home.

Well that is all for tonight. Will let you know how things go next week.

Love,
Darlene and Kyle

Saturday, December 31, 2005 9:40 PM CST

Well, It's been awhile since we've updated Kyle's site. So I think its only right that I do it tonight since it is the last day of the year.

Well, the end of September we met our new friends, Jacqueline and Robert from Holland. Kayla and Kyle just loved both of them. They talked about them for days. Jacqueline and Robert's son, Ingo, past away because the doctors where they live didn't know how to care for a child with MTM. It made us very sad.

Then in October, we found out Kyle had a colapsed right lung. He had no signs of it. The only way we found out was with an x-ray we had taken for scoliosis (which we have done every year to make sure his spine is straight). On October 11th, Kyle's little brother, Connor was born. He is so tiny and cute. Kyle just loves him. For Halloween, Kyle was a Bum. He was so cute. He enjoyed going trick or treating with the other kids. You should have seen him, when we came to a house with a deck or something he couldn't get to the door with he would sit in his chair and holler "hay me" and point to himself. He insisted on carrying his own candy bag (even though he doesn't eat it). He even stayed with the other kids the whole time we were out. Oh, our nurse quit on us this month. Now it's just me and Kyle again.

Then came November, it started out ok. Kyle still has a colapsed lung. Still not showing any symptoms. Doing his usual stuff. Then on the 15th his lung started sounding junky. We took him to the ER. He was so funny there, he didn't want to sit on the table so they let him stay in his chair. Everytime the doctor would turn his back to Kyle to talk to us he would try to get out the door. The x-rays showed his lung was still colapsed and he had pneumonia on top of it. He stayed 2 days in the hospital. He came home with a colapsed lung and fluid still. Four days later Connor ended up in the hospital. Poor little guy is still there. We have now put him in home schooling until we get his lung straight. Thanksgiving was quite. We spent it with family. Still no nursing.

December has come and almost gone already. Were did it go. Time sure flys when your having fun. We thought Kyle's lung was getting better. He is down on his oxygen .50 liters instead of .75 liters. He is more active.
But the x-rays say different. Things are still the same. The doctors are talking about going in and manually taking the fluid off and doing a scope to see why the lung is colapsed. December 15th Kyle turned 4 years old. Way to go Kyle!!!! We had a party for him. He loved opening the presents. He wanted to open more. I had a hard time keeping him from opening the presents under the tree. Connor had his g-tube and nissen surgery on the 21st. We had Christmas here at our house this year. The kids got to play with their toys until everyone else got here. Kyle had a ball opening presents. He didn't care whose they were as long as he got to open them. He woke up this morning with a runny nose. Kayla had a cold, so I'm sure he is getting it now. Still no nursing. The nursing company has promised me we will have nursing for the New Year.

As I end this very lengthy update of the past few months, I would like to THANK YOU all for listening to me rant and rave over everything this year. To our new friends, WELCOME TO THE FAMILY. I know I haven't had the chance to do it these past few months.

This year has been full of ups and downs, joys and sorrows. I want to wish each and everyone of you a HAPPY NEW YEAR. MAY 2006 BRING YOU HAPPINESS AND GOOD HEALTH!!

GOD BLESS,

Love,
Darlene and Kyle

Saturday, September 17, 2005 9:45 AM CDT

Hello all,

I have a new teacher this year. She is great with all the kids in my class. I think this will be a very good year for me. She is very good at teaching and not afraid of me or my equipment. She is very patient with me and helps me to try new things. She even understands the things I say that most people don't. I thought only mawmaw could do that. She gives me limits too, just like the other kids. I've been in time-out 2 times already for not listening. Everyone at school can't believe how big I got over the summer.

The humidity has been really bad here. My allergies are unbelievable. My eyes and nose are always red and running. I wish the weather would get better so I can be outside more again.

Well, hope everyone is doing good. We've got to go, Kayla has soccer soon.

Love,
Kyle
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September 3, 2005

Hi everyone,

Can you believe it's September already. Were has summer gone. We have kept Kyle so busy that the summer just flew by. He's had a great summer. Between all the therapies, the pool and camping trips I'm exhausted, but Kyle keeps going just like the battery bunny.

School started this past monday. Kyle was a little upset the first couple of days. He didn't want me to leave him.
He has a new teacher and P/T at school, so that was expected. He did better on Thursday and Friday. He loves riding the school bus.

We are keeping his schedule at the hospital the same, 4 days of P/T and O/T in the morning and school in the afternoon. He has 2 1/2 hour sessions of P/T at school each week. His speech and O/T at school are to start this coming week. Hopefully it will be the same as last year.

Hope everyone is doing good.

Take care,

Darlene and Kyle

Thursday, August 25, 2005 4:41 PM CDT

Hi

Yesterday, we saw The Wiggles in concert. It was a great show. We got to meet all 4 of them in person. They are really great guys. They asked all kinds of questions about Kyle and even let him touch their faces. Kyle was loving every minute of it. During the show Murray came down off the stage and asked Kyle how he was enjoying the show. At the end of the show they waved bye and said, " Hope you had a good time Kyle, see you next time."

Well, school starts next week. Kyle's nurse will be here this week and start full time next week. Kyle will be going to therapy in the mornings 4 days a week and school in the afternoons 4 days a week. He has a pretty busy schedule.

Hope everyone is doing good. Talk to you later.

Love, Kyle and Darlene

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Monday, August 1, 2005

Hi All,

Well, it's August! The summer is almost over. Time to get ready to go back to school. School starts in 28 days for us.

I've been doing really good this summer. Getting bigger and stronger. Going all over the house by myself.

We went camping this past weekend. I had a really good time. Went on my first boat ride. I loved it until they decided to go faster to pull the kneeboard. I didn't like all the waves coming in. I got my own Scooby-Doo fishing rod. I didn't catch anything though. Kayla got a little fish. We went to the pool again. I like going to the pool. My favorite is kicking water on everyone. Especially, Kayla and Mawmaw.

Hope everyone is doing good.

Love, Kyle and Darlene

Saturday, July 16, 2005 8:21 AM CDT

_Hi everyone,

July is half over already. Things have been good here. I'm over the chicken pox. It really wasn't all that bad. I had a mild case. Back to all my usual stuff. The weather has been really HOT!! The humidity is unbelievable. Mawmaw has me in the house most of the time. She says it's too HOT for me outside. I try to get out whenever I can. Dad takes me out on the deck when he goes out.

We went camping again last weekend in the mountains(Luray, VA). It was nice there. Not too hot. I'm starting to get the hang of this and liking it. Do you think I can talk them into going every weekend?

Dad is doing better. He is not having all the pain in his leg anymore. His headaches are gone and he is acting alot better. He lets me do things mawmaw won't.

Well, that's it for now. Hope everyone is doing good.

Love, Kyle and Darlene

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July 3, 2005

Hi everyone,

Well, it's July already. Ready for all the fire works.

I now have the chicken pox. Of all things! Way to start the new month. The good and the bad of it is, I have a mild case which is good but I can get them again which is bad.

Overall things have been going good. I've been doing good in therapy. I'm up to 10 hours off the vent each day now.

Dad (granddad) had his surgery last Wednesday. Everything went good, except now he is having trouble with the nerve in his leg. But the doctor said that is to be expected since all the pressure is off the nerve now. It will take him a few weeks to get back to normal.

Hope everyone has a good 4th of July.

Love,
Kyle and Darlene

Friday, June 24, 2005 10:00 PM

Well, I've finally found time to update.

Last weekend we went camping. We had a great time. Kyle and Kayla loved every minute. Kyle wanted to stay outside the whole time. Neither of them wanted to leave. Kyle kept signing "1 more day" when I told them we were going home. Kyle got to get in the pool, play minature golf, play in the sand, playground, etc. He was showing everyone how he can do a wheelie in his chair. Everyone would stop and talk to him. He loved all the attention.

This week we started our new schedule for P/T and O/T. 4 times a week, 1 hour each. He really did great. They worked on crawling and sitting/standing on his knees, scooting across the floor and getting out of his chair. They want to get as much weight bearing as possible in each session. He did great except for holding his head up. If only his head wasn't so heavy.

This weekend is our weekend together without any of the other kids. Kayla has gone to Ocean City and Bryan is with his dad. My daughter (Kelly) is working all weekend. So it's just Kyle, Dad (that's what he calls his granddad) and me.

I finally got new pictures put on. I figured out what I was doing wrong.

Please sign Kyle's guestbook. He likes to hear what everyone writes.

Love,

Darlene and Kyle

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Thursday, June 16, 2005

Hi everyone,

Well, school is offically over for the summer. Yesterday was Kyle's last offical day until next year. He will still go 1 day a week, more like a play group than anything. Kyle got an award for being the most improved in the class. He starts his 4 days aweek therapies at the hospital next week. Wednesday was our last day with our nurse until he goes back to school.

Things have been very good for Kyle these past few weeks. He is off the vent 8 hours a day now. He goes anywhere and everywhere in his chairs.

He loves going outstide, but it's been really hot here the past couple weeks. So we only get to stay out for 1/2 hour a couple times a day.

Hope everyone is doing good. Please keep our little friend Javad in your prayers. He is having surgery today.

Love, Kyle and Darlene

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Saturday, June 4,2005

Wow, it's June already! Boy how time flys! We have 2 weeks left in school. Then Kyle starts his summer routine.

We went to the MDA Clinic and my nutritionist on Thursday.
Everything went well. They were surprised at how big he has gotten. The doctors at the MDA Clinic were very happy at how well he can get around with his Wheelchair. She wants him to be able to pull himself up into it when we go back in September. I think he has alot of work to do to be able to do that by then. He trys but his weight is to much for him. He needs to get a little stronger first. His nutritionist left his feedings as they are. She said she would change them after the summer unless he seems to be hungry all the time. She doesn't want him gaining to much weight over the summer.

His allergy's are getting better. We changed his medicine to Zyrtec. I think he had been on the Claritin so long that it wasn't working anymore. Other than that Kyle has been healthy.

We have planned a camping trip for the weekend of the 17th - 19th.

Please keep our little friends, Javad and Liam in your prayers as they are in the hospital.

I will try and update photos as soon as I can figure out how to do it.

Tuesday, May 24, 2005 5:03 PM CDT

Hi everyone,

Things have been slow around here lately. Not much going on. School has been good. I only have 3 and 1/2 weeks of school left. Boy how time has flown.

Mawmaw's back is better. Boy do I like that. I get extra hugs and kisses since she wasn't able to do it for 10 days. I'm loving every minute.

Mawmaw wants to take us to the beach soon but, Pop has to have surgery on his neck, so we have to wait and find out when that is first.

My friend Javad is in the hospital. Please give him extra prayers to get well soon.

Love,
Kyle and Darlene

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Friday, May 13, 2005

Hi all,

Things have been a little out of sort for me this week. Pop found out he has a ruptured disk in his neck. That's what all his problems have been from. He has to have surgery, soon we hope. I've been showing my bad side this week because I'm not happy. Mawmaw hurt her back on Tuesday, so she hasn't been able to pick me up. I'm not liking that. I like her to hold me, hug and snuggle.

Things have been going good at school. I had an IEP meeting Thursday for the summer. I'm only going to school 1 day a week this summer. School cutbacks!!! They don't have the staff for a full week of school for our class. The good thing is they are going to put me in a regular preschool class 1/2 the time and a special class the other 1/2. So I get to spend time with regular kids who can teach me what I want to learn, not ones that scream, howler, and kick all the time. I don't like that, I keep my hands over my ears most of the time.

We are going to increase all my therapies at the hospital so I don't get lazy over the summer. Mawmaw is trying to get me a Migician stander, so I can push myself around, stand and sit when I want.

I went to the dentist today for the first time. I didn't like that either. People poking and looking in my mouth wasn't fun. They say I have too many teeth for my small mouth. They are going to put me to sleep, so they can clean and xray my teeth to see which ones they can pull so my mouth isn't so crowded. They are going to pull them at the same time. Get it all over at the same time. That's what I like. Then I will have to get xrays every 4 years to make sure my adult teeth come in straight. I already have my 4 year molers and my 6 year molers are coming in. Does that surprise anyone?

Hope things are going good with everyone. We are glad to hear Liam is doing great.

Love, Kyle and Darlene
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Friday, May 6, 2005

Hi everyone,

The test results are back. I'm getting a baby brother. Yes, he will also have X-linked Centronuclear Myopathy. Things are a little stressed around here, but still good.

School is going good. Therapy has been great. I can scoot everywhere,in and out of my chair. They are trying to get me to pull myself up into my chair. That's a little hard, but I'm trying.

That's about it for now.

Please keep my little brother to be in your prayers.

Love
Kyle and Darlene

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Monday, May 2, 2005

Hi all,

It's another month. Things are still going great. Today, I had p/t and o/t at the hospital. I rode the tricycle again. This time without the vent, just on my trach collar. I went the same distance as before.

My allergies have been worse. The weather can't make its mind up. One day it is cold and rainy the next it is hot and the pollen count is up. I will be glad when it stays warm.

I'm still growing. Mawmaw keeps saying she can't figure out why. Nothing has changed in my feedings. I'm up to 45 lbs. and 43 inches. The doctors can't figure it out either.

I helped plant some plants today. I was ok as long as the dirt was dry but don't like it wet. I like keeping my hands clean. I like pulling the flowers off too. They are so pretty, I just have to hold them.

Pop's been sick again. Really bad headaches and blurred vision, seeing things, numbness in hands and feet. Doctors are testing him for everything. I like it when he is home. I get to sit in his lap and watch TV. Mawmaw says we are couch potatoes.

Hope everything is good with everyone. Please leave me a note in my guestbook. I like reading them.

Love, Kyle and Darlene

Wednesday, April 27, 2005 4:24 PM CDT

Hi everyone,

Things are still going good. Monday we went to the Cole Brothers Circus. We all had a great time. I loved everything except the clowns. My cousin, Bryan didn't like the clowns either. It was ok with 1 or 2 clowns, but when they all got together it was scarey. We got to see Spiderman and The Hulk. Spiderman attacked the BAD CLOWNS, that part I liked. There was a human slinky and a human octopus. That was great too!! Kayla liked the cat act. Thoughes cats could really climb and jump.

Monday at therapy, I rode the tricycle again. I really like going around the hospital. You can meet all kinds of people. Some even give me treats for doing such a good job. Today, I played with the swing. They had me crawling in it. I didn't like it at first, but after I found out what they wanted me to do, I started likeing it. The best part was pushing myself around in circles.

School has been going good. Think they got the idea I'm going to come no matter what. We only have 7 more weeks. I can handle that.

The weather has been good, so I've been outside alot. Between my chairs and my tricycle, I'm keeping mawmaw very busy.

Hope everyone is doing great.

Please keep little Liam in your prayers. We haven't heard anything new about his condition. We hope he is doing good. As mawmaw says, no news is good news.

Take care,
Kyle and Darlene

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Friday, April 22,2005

Hi,

Well this has been a very good week for Kyle. He did great in school all week and excellant at therapy. Some of the school issues have been resolved, but there are still some that have to be cleared up.

Nursing is still a problem. I found out yesterday when I went to school with Kyle (the nurse was out sick) that the nurses do not take him out of his power chair. They do not take him out for recess. He stays in his chair for 8:00 am to 12:00 pm when he gets home from school. He is suppose to be put in a regular chair when they have class so he is at the same level as the other kids or sit on a blanket when they sit on the floor(Kyle is allergic to the carpet in class due to the glue having latex in it). When they have recess he is to go in the rocking dinosaur they have put on the playground or the one swing they have.
The only time he is to be in his chair is to/from school on the bus, during library (to get around better), when they go to another classroom and during p/t with his chair.

He has another IEP meeting coming up in May. I hope to have all issues cleared up by then.

Hope everyone is great.

Love,
Kyle and Darlene

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Wednesday, April 20,2005

Hi All,

Kyle had a great day at P/T and O/T today. He got to ride the tricycle. He started out pushing it by foot for about 30 feet and kicking over some cones on the way. Then he started pedalling and went another 100 feet with only stopping 3 times. We were all surprised. Usually he will start and stop after 5 feet. I thought he would have been tired after all that, but he would not take a nap after we got home, he wanted to keep playing and of all things kicking the ball with his feet. Thoughs legs got a workout today. He finally fell asleep at 8:30 pm.

Hope everyone is doing good.

Love Kyle and Darlene

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Saturday, April 16, 2005

Hello,

We forgot to mention that Kayla and Kyle are getting a little brother or sister in October. We will update more when we find out which it is.
Take care,

Darlene and Kyle
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Friday, April 15, 2005

Hi All,

Sorry we haven't written lately. We've been really busy trying to get things straight at school and with the nurses.

We had to let the new nurse go. She just wasn't cutting it. I left her with Kyle while I took his sister and my husband to the doctors. When I got home it was time for her to leave. She met me at the driveway, left Kyle with my daughter. She said, Kyle had a good day except he kept setting the vent off as usual. When I got in the house, he was signing help and pulled the vent lines off. The lines were full of secretions (about 6 inches down each line). I saw RED. Called the nursing company and told them I didn't want her back. Well, we have a new new nurse. She has been here for 5 days now. Not happy with her either. She says she knows how to work Kyle's vent, but everytime it goes off, she doesn't know how to turn it off. I don't think she has had much experience with an active patient. She doesn't like our schedule (school then therapy). She says it doesn't leave time for her to do her paperwork. She's a paper/form maniac. Watches his vent like a hawk. I want someone who watches the child unless the vent goes off. I don't care what the vent says when he is ok. Kyle is active, doesn't keep still very much, likes to move from place to place. She can't trouble shoot the alarms when he sets them off by moving so much. Compares him to her other patients in the past. I keep telling her no two patients are alike. Kyle is a typical 3 year old except his muscles don't work right. I think she will have to go too. Sorry for rambling on.

School, that is another subject I could go on and on about. Went to school last Friday with Kyle. Nothing has changed, the school nurse talked to me about their concerns. I told her Kyle was to be treated just like the other kids or things would have to change with them too. I was not changing anything we do with him. If they were scared of him just say so. He wasn't contagious. They weren't going to catch anything from him. He is more cooperative then the other kids in his class. He was more likely to catch something from them then they from him. Other than that, Kyle is doing great in school. He trys to paticapate in all the activities they do and does just as good as the others.

Kyle is doing great in therapies. He is getting stronger everyday. I can see him improving in everything he does.
In p/t and o/t they are trying to get him to push himself up in a crawl position. They had him hanging in a hamick today and he loved it. Hands and knees on floor with just a little weight. Next time they will increase the weight bearring.

We go back to the allergist on Monday. We will find out exactly what he is allergic too. Hopefully, this will clear up all the congestion he gets on some days. No more running nose or red eyes would be great.

Well, that's about it for now. Hope everyone is doing good. Please leave Kyle a note in his guestbook. He loves to hear from everyone.

Love,

Darlene and Kyle

Saturday, March 26, 2005 7:26 AM EST

We want to wish everyone a HAPPY EASTER! Hope the Easter Bunny is good to everyone!

Kyle is doing great! Getting stronger each day.

He only had one day of school last week, due to spring break. Things are still the same, the are keeping him seperate from the other kids, which is why he is there in the first place.

He is still having trouble with his new nurse. He doesn't completely ignore her anymore, but still giving her a hard time. I've made him stay in his room with her for several hours alone, left them alone at home for half the day, told him he couldn't go outside unless he was nice, etc. I don't know what else to do!

His p/t and o/t went great this week. They are teaching him how to get in and out of his manual chair. He has undoing the seatbelt down pat. He knows how to get out very well now. He even comes out of his power chair when he wants. That was really scary the first time, I was afraid he was going to hurt himself. It's alot higher than his manual chair. He came out of the seat onto the footrest then flopped on the floor, had a strange look on his face, looked at me then fell over laughing. He is such a character!

His granddad is sick with double pneumonia. Please keep him in your prayers. It's been really hard trying to keep Kyle away from his granddad as he likes to sit in his lap at night and watch TV. But I don't want him to get it.

Hope everyone is doing good.

Happy Easter,

Darlene and Kyle

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Tuesday, March 22, 2005

Hi all,
Yesterday Kyle went to the allergist.
He is doing blood work to see what he is allergic too and to see what his immune system is like. He seems to think his immune system is really low and that is what is causing him to have allergy symptoms. He also said, his immune system can be what is causing Kyle to have UTI's.

Kyle is doing good. Still some problems at school. I hope to have them cleared up soon.

Well that's it for now.

Take care,

Kyle and Darlene

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Friday, March 18, 2005

Today we went to the ophthalmologist. Kyle's eyes are worst than they were a year ago. So we need to change his prescription. Other than that, Kyle is doing really good.

He wheeled himself in the doctors office today. He just loves his new chair. He wants to be in it all the time. It's so great. He loves the independence he has with this chair. He can move it around so much better than the power chair. It can turn on a dime as the expression goes.

The weather is great today, so we went for a walk around our neighborhood. I can't wait until we can walk everyday. He just loves being outside.

God bless all.

Darlene and Kyle

---------------------------------------Wednesday, March 16,2005

Hi all,

We are having a few problems at school as far as Kyle's vent, what they want us to do with his diapers and suction catathers. Where to change him. When to suction him. Sometimes they act as if he is contagious. That's ok, I have a meeting with the Board of Education to handle all that and a few of my own.
As far as having some type of play equipment for him on the playground. They only have one swing he can sit in. Having a sidewalk to push his wheelchair to the playground and ridding the school of latex. As Kyle has a latex allergy that they have known about from the beginning. Everyday he comes home with his eyes all red and watery. Sometimes the whole side of his face is broke out. The carpet in the classroom has a latex backing, half of the school items have latex. I'm sure there are more children in the school with the same allergy that don't even know that is what is causing the problem. Enough on that subject though.

Today he had p/t and o/t at the hospital. He had a great day. He pushed his manual chair all the way down the hall and back. Then pushed himself around on the sit and spin several times reaching for objects. finally, he pushed the scooter around the hall kicking over bowling pins. When we were ready to go he pushed himself out to the main doors.

He has his sinus infection back again for the third time. I wish we could find something to get rid of it for good. Other than that he is doing really good. Getting stronger everyday.

We got a new external battery yesterday for his vent. This should take care of one of our school problems.

Please keep us in your prayers that this spring will be a good one for Kyle and things get better at school.

Take care,

Darlene and Kyle

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Monday, March 14, 2005

We are trying to get a second nurse for Kyle at school, so if for some reason one is not available we will have another. Well, today we had a new nurse come to the house. Kyle did one of his favorite I want my mawmaw tricks. He held his breath until his pulsox was down in the single digits. Would not let her touch him or suction him out, even pulled the vent hosing off several times. If she tryed to play with him, he wanted a different toy. When we went to p/t today, as long as the nurse was in the room he didn't want to do anything they (his p/t and o/t wanted. When she left the room he started doing what his p/t and o/t wanted him too. His p/t wanted to know what was wrong. So, I told them what had been happening, they thought it was funny.

Kyle did very well with his manual chair today. He pushed himself around most of the time we were at p/t. Until his vent battery died on us.

We have been having alot of problems with the vent battery lately.

Well, I just had to share the little incident with the nurse. Made me think of Mason.

She was very upset about weather it was her he didn't like or if it was just his way to see what she would do. Hopefully she will come back and things will be better next time.

Hope everyone is doing good.

Don't forget to sign Kyle's guestbook. He really enjoys hearing what everyone writes to him.

Darlene and Kyle

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Friday, March 11, 2005

Hi All,

Kyle has been fighting a sinus infection all week. Other than that he is doing really good. He thinks he's a big boy now and doesn't need a nap. He has been trying to skip his nap time. But then when he doesn't want to do something he asks for a nap. So when it's his nap time I've been trying to get him to do something he doesn't like and on que he ask for a nap. I know this will not last long, once he figures out what I am doing. I will continue until than. He really needs a nap to keep his strength up.

His p/t and o/t have been going great. He loves going to the rehab center to PLAY with his therapist. That is what he tells everyone.

The weather started out good on Monday, it was 70 degrees and it spoiled us. We spent most of the day outside. Then Tuesday it snowed and the rest of the week has been cold. Kyle just wants to go outside all the time. We can't wait for it to be SPRING!

Yesterday Kyle got his new manual wheelchair. He loved it! The frist thing he wanted to do was go outside. I hooked his vent on the back and he was all over the house.

Kyle has enjoyed reading everyones messages in his guest book.

Our friend Jacob is home from the hospital. We hope he is doing good. Benjamin has gone a WHOLE year without going in the hospital. Way to go Benjamin! Javad is in the hospital. We hope he feels better soon. We hope everyone else is doing great.

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Tuesday, March 1, 2005

Hi everyone,

Well, it's the beginning of a new month. Kyle did well last month. We are hoping March will be even better.

School has gone great. Even though the snow has closed schools for a few days. Hopefully, he will go Wednesday. He really likes school. He likes being around the other kids and he is learning to trust other adults.

We are looking forward to spring. Kyle and Kayla are outgrowing everything. I hate to buy more winter clothes as spring is so close. Kyle is bigger than Kayla now! She is not liking that. She says, she is the big sister so she should be bigger.

Kyle has improved greatly in o/t and speech. He is now trying to do the things his o/t wants him too. In speech he is using his mouth more and his signing is great. He is starting to use 3 and 4 word sentences with his signing.

On p/t yesterday, he did an excellent job. He was on his knees over a bolster for 20 minutes and was pushing hisself back and forth to reach the blocks they were playing with.

I will post new pictures of Kyle as soon as I get them developed this week.

Our little friend, Jacob has been sick this past week or so and in the hospital. We hope he is feeling better and hope everyone will pray for him for a quick recovery.

Please sign Kyle's guestbook, as he really enjoys hearing what everyone writes to him.

Thursday, February 17, 2005 7:34 PM CST

Well, Kyle started preschool today. He did really great! He went on the school bus (that was a new experience). At school he had library (got to bring a book home), music, speech, class time and recess today. His nurse said everything went good until around 10:30 he realized I wasn't anywhere in the classroom and started to cry and call for me. She was able to calm him down after about 5-10 minutes. The ride home on the bus (different driver) was also an experience. They have never had a child with a vent, O2, etc on the bus before. When he got home I had to hold him for 20 minutes. Kyle kept hugging me and patting me on the back. This was the first time he has actually been away from me for that length of time. I think he liked playing with the other kids. He just was glad to be back at home and see me.
I took pictures of him getting on and off the bus. Will post when I get them developed.

Thursday, February, 10, 2005

Things have been going great for Kyle this month. He has improved greatly! His strength has greatly improved.

We now have a nurse for Kyle to go to preschool. He starts 2/15/05 and will be going 4 days a week. He likes school so hopefully this will be good for him. His nurse has been with us about 2 weeks now. Kyle still has some anxiety about me not been around him all the time. Hopefully this will not be a problem at school.

In therapy today, they had him in leg braces with a walker. He did great! He went about 5 feet 3 different times. He was so happy! He was clapping his hands and signing happy!
I think he surprised us all. I was not sure he would keep trying but he did. He wants to walk, so I think that gives him an incentive to keep trying. He wants to do the things
his sister and cousin do. No matter what, he always has a smile and good attitude.

Kyle is such a fighter. He is always happy.

Saturday, January 29, 2005 11:02 PM

It's been three weeks since Kyle came home for the hospital. He has done really great for what he went through in the beginning of the month.

He has gone back to his regular schedule of physical therapy and will start O/T at the hospital in February.

We have a nurse for school now. So he should be starting full time soon. Last week and this coming week we are at home so Kyle and Linda (his nurse) can get use to each other. Big change for him! He seems to like her so that is a plus. No major episodes on his part so far.

He is doing really great with the sign language. He knows about 75 - 80 signs now.

He's been vocalizing alot more too. He said yellow and blue for his teacher on Thursday. Yesterday we were counting and he said one. He is up to about 20 words now. Doesn't sound like much, but we think it is great!

Today we went to his cousins birthday party. He had a great time! He got to play the games like the other kids. He loved pin the nose on the clown. He even kept the blindfold on. He even hit the pinata by himself.

Well, things seem to be going in the right direction for him now. Hopefully, things will continue to get better.

He is starting to act like a typical 3 year old. That's a good thing!

Tuesday, January 11, 2005

Just a little note to update everyone on how Kyle is doing.

This year has not started out on a good note for him. Kyle was admitted to the hospital on January 3rd because his CO2 level was 112 along with the Flu, RSV, and Pnemonia. The previous week he had been there with a stomach virus and RSV. When I went to wake him that morning, I was unable to get him to respond to me. I knew that was not normal and called the ambulance. By the time we got to the hospital his CO2 level was 112. We were able to get some response after about 1/2 hour at the hospital. He was flown to Childrens in Washington, DC. There we were told he also had the Flu and Pnemonia and the RSV was still present. The high CO2 level was from his lungs not expanding enough to allow him to breath it off due to the illness and he had a large air leak around his trach. He had a 4.5 Shiley and it was upsized to a 5.5 Shiley. After several days in the hospital, he came home on January 9th.

After all he has been through this past week, his first word after the upsizing of his trach was HOME. We weren't sure if he would be able to talk with the larger size but he is really trying. He is a little weak, but all and all he is doing great.

He started his home schooling today. His new teacher will be coming to our house 4 days a week. He will continue his therapy at the hospital with hopes of increasing his time to 4 days a week also. He is still going to school 1 day a week for S/T, P/T and O/T.

Friday, December 31, 2004 11:57 PM EST

Hi everyone,

Sorry, we haven't written anything this month. This month has not been a good month for me. The only good things were my 3rd birthday December 15th and Christmas. I was home for both. I've been in the hospital several times. Actually, we just got home from the hospital tonight.

Just wanted to end the year with a little note.

Hope everyone has a HAPPY NEW YEAR!!!!!!

May 2005 be a great year for all.

Love, Kyle

Thursday, November 18, 2004 8:34 -PM

Hi,

I'm feeling alot better now. I've been getting alot of rest lately. Went to see the pulmonologist last Thursday. He said I was getting better. He wants me to stay on the vent most of the day for the next 10 weeks, then I go back and see him again. Went to school today. We painted turkeys with our hands. Had phyical therapy today also. It does wear me out faster than before. I like doing it though. Not much of anything has been happening, Mawmaw's been keeping me in the house. Will write again later.

Love, Kyle

Hi everyone,

Well it's the start of a new month. Hopefully this will be a good one. I am feeling better after all the excitement the last 2 weeks. I did give the nurses and this one doctor a hard time. But they kept telling me they loved me anyway. My right lung still is not guite back to normal yet. Mawmaw still keeps checking to make sure it sounds ok. I think she is afaid it will collapse again. I'm still on the vent about 20 hours a day. Mawmaw still makes me use it even though I think I don't need it. Went back to my physical therapy yesterday. Started out a little slow and trying but I got back in the swing of things fast. I start back to school today. Hope everyone is doing good. Will write more soon.

Love
Kyle

Thursday, October 28, 2004

Hi everyone,

I've been in the hospital. My right lung collapsed on Saturday then my
left lung collapse on Monday. Was in the hospital for 4 days. I am home now, have to stay on my vent all day and night. My vent setting and my trach size got changed. I'm feeling better now. Will up date more later.

Love, Kyle

Wednesday, October 20, 2004

Hi everyone,

Not much has been happening. My allergies have been acting up again. Finally got my "FLU" shot today. Other than that everything has been the same. P/T, speech and school have all been going well. Went for a checkup with my pulmonologist. He said everything sounded good. Well, that's it for now. Talk to you later.

Love, Kyle

Saturday, October 2, 2004

Hi everyone,

Sorry, I haven't written in awhile. I've been very busy at school and in therapy. I'm getting stronger everyday. Other than that not much has changed.

The weather has been nice lately, so we have been going on walks in the afternoon. I like going on walks. Especially when I'm in my power chair.

My physical therapist says I'm doing really good; improving everyday. I'm up to 2 hours a day in my stander. I'm learning new signs everyday also. My newest sign is tree.

Well got to go now. Will tell you more later.

Love, Kyle

Thursday, September 16, 2004

Its me again,

My glasses have helped me see better. I know how to take them off and put them back on all by myself. I even keep them on 90f the time.

I started my regular preschool last Thursday and I had a class today. There are 2 other boys in my class. It was fun. We play with toys, have circle time, then I have speech, then we have arts and crafts or computer time, then I had physical therapy. I did really good today! Everyone said so. My speech teacher said I had come a long way with my signing. In p/t I walked in the gait trainer all the way to the outside (about 20 feet). I wanted to go outside and that was the only way they could get me to walk. I'm getting stronger each day. I'm up to 2 hours in my stander each day. I also have my speaking valve on all day now. I like to make car sounds and funny noises. Well, I have to go now,
time to eat.

Love, Kyle

September 7, 2004

Hi everyone,

Sorry, I haven't written in awhile. I got my eyeglasses. Been busy as a bee at therapy. I've been sad over the passing of my friend, Matthew. Mawmaw still gets tears in her eyes and gives me extra hugs. No more desatting. The weather has started to change so my allergies are acting up. Other than that I've been doing good. Will try and update more often.

Love, Kyle

August 16, 2004

Hi,

Just a little note to update what's going on.

I've had my nissen dye test and been to the cardiologist. All test have came back negative. I have a clean bill of health. Still don't know why I desat.

I've been learning more sign language and using it alot. I love to say "shoes on" and "go out". I've been talking a little with my passey muir valve.

Well, that's about it for now.

Love, Kyle

Tuesday, August 3, 2004

Hi everyone,

Just wanted to let you know I'm doing really good. Haven't been sick in over 2 weeks. I've been doing great in therapy. Learning to scoot across the floor and moving myself without help. I can push myself up from a fall over position to a sitting position now. I can even move the swing by myself as long as my feet touch the floor. My eye/hand coordination has greatly improved. I have my new powerchair and love chasing everyone around the house. Also I've been learning sign language and doing very well. I got a passy muir valve about 4 weeks ago and started talking with it today. I actually had it on for 50 minutes today. I think that is all I've accomplished recently. Boy am I tired! Will update you on more later.

Love ya, Kyle

Monday, July 19, 2004

Hi everyone,

Just wanted to fill everyone in on whats been happening. I've still been sick. Having my desat episodes again with plugs. Been in the hospital again! Still unable to find out why I'm doing this/what is causing the plugs.

We went camping over the weekend to Luray. I ended up at the hospital, Friday night. I started desatting, had a plug, they think I may have allergies. We spent 4 hours there before it would breakup. Mawmaw and I spent all day Saturday in the camper, then it rained Sunday so I was unable to do anything we had planned. Kayla had a good time at the playground, pool and miniature golf. We will try again after we find out why I keep desatting.

Mawmaw is taking me to a specialist with all my chest x-rays for the last
4 months so he can try to figure out why I keep doing this. We are thinking about going to a allergist also.

Love, Kyle

Wednesday, July 7, 2004

Hi,

Just wanted to let you know I had a good 4th of July, but got sick the next day. We ended up in ER for 5 hours. I have a virual infection. Dr. says I will be better in a few days.

Love, Kyle

Wednesday, June 30, 2004

Hi everyone,

Just a little note to let you know I'm doing fine. We went to Baltimore On Sunday to the Inner Harbor. We saw all the big boats. I liked going on our outing.

Love, Kyle

Saturday, June 19,2004

Hi everyone,

Got my tubes in Friday. Everything went great! Ears are draining a little
and hurt some, but I can hear better already. Dr. Milmoe did a bronceoscope (? spelling) to see if there was any scarring in my lungs or around my trach site. He said everything looked good. Didn't see any scarring. He has down sized my trach so I should be able to vocalize better.

I spent most of my hospital stay waving to everyone and throwing kisses to the little girl in the bed next to me in recovery. All the nurses loved me. They said I was a cutie!

Love, Kyle

Wednesday, June 16,2004

Hi Again,

I get tubes put in my ears on Friday! Hopefully this will help with my recent illnesses as well as my ear infections. Will let you know how things go!

Love, Kyle

Saturday, June 5, 2004

Hi everyone,

Just a little note to let you know I'm feeling better.

Kyle ended up in the hospital Thursday night (6/3/04). He has an ear infection and a touch of pneumonia in his right lung (lower lobe). He came home Friday night (6/4/04). He decided to do one of his desatting tricks in the ER, so they admitted him for observation (16 hours). He gets tubes in his ears June 18th,the are also doing a broncheotomy (? spelling) to see if there is any scar tissue from his tracheotomy or in his lungs.

He went to his MDA Clinic on Tuesday. His doctor said, he was doing great. She wants him to get a manual wheelchair so he could strengthen is muscles more. She wants him to be able to pull himself up into the chair from the floor by himself by his next visit in December. I think she is dreaming, it will take me that long to get the chair. She also thinks he is ready to increase his physical and speech therapy to twice a week for each one. She thinks its great he can push his tricycle by himself ( he showed her he could do that).

Love you all!

Wednesday, June 2, 2004

Kyle was born December 2001. When he was born the doctors called him a floppy baby. We were told he would not live thru the first night, then the first month, then he wouldn't see his first birthday. Thank god they were wrong. Kyle is now 2 and 1/2 years old. He has over come many obstacles in his short life.

Kyle has alot of equipment: he uses a ventilator at night, during naps and when he is sick. He is on a pulsox monitor 24/7. We also have suction canisters (stationary and portable), nebulizer, oxygen tanks (stationary and portable), kid cart, bath chair and tumble forms chair (to help him sit up straight) and a closet full of supplies. We do not go anywhere without his equipment. He is on 6 different kinds of medicine: Albuteral, Pulmicort, Lacrilube, Artificial tears,Robinul and Creatine.

He currently receives physical therapy and special instruction at home.

Kyle is a fighter! He has proven the doctors wrong in more than one way. His life has not been easy, but he's not going to give up easily either. He continues to improve daily.

This page has just been created. Please check back for additional updates.

Please sign my guestbook, I would love to hear from you.

Kyle

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