Kyle’s Schizencephaly Blog

Bad News

July 15th, 2009

     This morning I went down to find Jasmine to tell her that we would be late because Kyle was still sleeping. Dr. Tony told us to skip one of his PTs so he could rest because he had been having the headaches. When I got down the stairs I saw Jasmine with her wrist wrapped up. It looked like she had two chopsticks and gauze wrapped around it. For about a week and a half now she has told us that her hand hurt and we have helped her move Kyle around a lot. Well, I guess she finally got it checked out and it is broken. That really stinks because she was such a good therapist and we really liked her. Now Jason will be our therapist. Which stinks because it’s kind of like starting over again. Jasmine knew what he could and couldn’t do, so now Jason will have learn all of this. I watch the other therapists with other patients and it seems like they do basically the same things, but we’ll be there to fill him in on what to do.

  Since Kyle had his IV stem cell today he didn’t have all of his therapy, and we didn’t get therapy with Jason because they didn’t give us the schedule until about 10 minutes before therapy was scheduled to be over. So, he’s had a pretty good day. He’s played the Wii, the Playstation, and played with some of the other kids. We did do standing therapy today and did some homework, which we’ll do again some more later. The surprise is that he has not complained about a headache at all today. Could it be because he has done what he wanted to do all day? As the translators say, “He is very clever.” Maybe a little too clever. But, we haven’t been out today so maybe that is why he hasn’t complained of a headache, I don’t really know.

     His IV treatment was fine. He really enjoyed it because there was no restriction on eating. Actually he and Rayanna sat on the couch together eating Pringles and gummy snacks as they got their stem cells. They  are the two Louisiana kids witht he strong accents that everyone likes to listen to. I have pictures of them on the www.karingforkyle.com website.

  I wanted to let our family memebers who have sent us some necessary food items (cereal, gummy worms, pudding, etc) that those items have not come yet. I promise when they come everyone will know! I think things get held up in customs and they check all of the boxes and packages. If there is anyone who is reading this and you are thinking of coming to China for stem cells you may want to pack some of your own food. Maybe things like oatmeal, grits, cereal, mac and cheese, pop tarts, and rice a roni (things that would easily fit into your suitcase). You can find plenty of junk food like chips and candy that are American. If this is something we had known we would have brought some breakfast foods and things like that, but you live and learn and we are making it just fine on scrambled eggs, grilled cheese, and chicken and noodles.

Entry Filed under: schizencephaly,Uncategorized