Jaymes is doing very well on his Clonidine. I was worried that it would sedate him too much, and for the first few days, it actually did. However, he seems to have adjusted very well, and it's made SUCH a difference. We still have screaming fits, don't get me wrong. I don't expect perfection. But the child who previously could not sit still long enough to take his meds, can now sit and watch Elmo on the couch and snuggle for the entire movie. He still lines up all the canned goods in the house while watching, but he sits for the most part and really attends to the movie. We love Elmo in Grouchland- excellent movie. Great music.
Jaymes hasn't really been talking... I don't know if it's a side effect of Clonidine (I doubt it, honestly) or if it's just a phase. He's been refusing to talk at school, and at therapy. But when he does talk, it seems to be pretty much just "Want to watch Elmo." At 6am this morning, getting dressed for school "want to watch Elmo." At therapy (where obviously there is no Elmo nor any TV) "I want to watch Elmo."
It's great talking, really is. But I wish he'd come up with some more original things to say, because at this point, I'm aware that his mission in life is to watch that Elmo DVD a million and one times before he turns 5.
Yes, my boy is almost 5! Can you believe it? Time flies, it really does. It seems like just yesterday I was snuggling Jaymes' little 5 pound body... Before the diagnosis, of course. We've had such a wild ride this last almost 5 years... Crazy. But totally worth it.
Jaymes is a great kid. He's adorable, he's smart, and he's my little buddy. His skin has been horrible, his eczema has been making him crazy. His teacher called me to say he was itching at school. It got so bad he was red scales head to toe- even in his diaper area. He would wake at night crying because it itched so bad. Doctor gave us an oral anti itch/antihistamine, and more medicated lotion. His skin is the softest it's been in a long time. Almost not bumpy. It's nice. He's feeling a lot better. He's got a dermatologist appointment in January to see what we can do for the poor little guy.
Oh, and by the way, we have -the best- caseworker ever. Be jealous.
Tuesday, December 16, 2008
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