MEET KYLE


This website has been provided to
keep everyone updated on his accomplishments.


Kyle was born December 2001
and has X-Linked Myotubular/Centronuclear Myopathy.
He has a tracheostomy to help him breath
and a g-tube for eating/medicine.
He is unable to stand alone or swallow properly.




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LEARN MORE ABOUT
X-LINKED MYOTUBULAR MYOPATHY
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SING-ALONG MIDI SONGS

Journal

Wednesday, August 2, 2006 10:04 PM CDT

Hi all,

Sorry it's been so long since we posted anything, but things have been really crazy around here. I've had a pretty good winter and spring only ended up in the hospital 2 times. Both were short stays. Once was an infections and in May I ran a fever of 105.1. They still aren't sure why, but put it on a virus. I've been off of the vent and oxygen during the day since June 14th. Yeah!!! I still ask for it sometimes during the day and when Mawmaw makes me take a nap because I wear myself out playing and get grumpy. Yes, she says I get grumpy, me of all people.

Connor has been in the hospital alot. I worry about him and always ask Mawmaw when I can see him again. He did come home the first part of July, but got sick again this past Sunday and had to go back to the hospital. The good news is he only stayed 3 days this time. He came home today.

I have had quite a few nurses this year. I don't know why they don't want to stay with me. I'm sure a good guy. Always playing jokes. After seveal months of no nurse, I finally have a new nurse now. She is pretty nice, but I still play jokes on her and hold my breath sometimes just to see what she will do. I think she is getting the hang of it now.

I have gotten alot stronger this year. Everyone says, I impress them with what I can do. I'm starting to put weight on my legs. Theresa, my p/t, says I'm doing really great.

We have only gone camping 2 times this year. Money has been tight, especially the gas prices, and the heat has been so bad. I had fun though when we did go. I don't like the heat. Mawmaw and I have spent alot of time inside this summer.

I just finished my summer school on monday. Things went pretty well. I liked all my teachers. I have a new speech teacher at the hospital. She is great. I really like going to see her. The new school season starts on the 23rd of August. We can't wait for it to start, I should say Mawmaw can't wait. Kayla will go to school all day this year. So Mawmaw and I will have part of the day to ourselves. I will still go 4 - 1/2 days.

I went to the Cardialogist on Monday. They did an echo-gram and EKG. He said my heart looked great and I didn't need to come back for 2 years unless Mawmaw thinks there is something wrong. Also went the Uroligist, she said my testicle surgery in January went very well and I don't need to go back to her unless a problem comes up. YEAH!!!!

Well, we have to go now, but I will write more soon.

Hope all is well with everyone. Please keep us all in your prayers.

Take care,

Darlene and Kyle

Read Journal History

Hospital Information:

Childrens National Hospital - DC
Michigan Ave
Washington, DC

Links:

E-mail Author: dm4462@msn.com

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