Ace has what's called spastic diplegia. This is a neuromuscular disorder that creates excessive tone, which seems to be present in his legs and in his arms. And no, excessive tone doesn't mean he's super buff and cut (although he is, because he's all man), it means that his muscles are a little tighter than they should be.
The good news is that the doctor isn't all that worried about it, and he's fairly certain that continued physical therapy will help. If not, he will (get this) give Ace Botox in his legs to relax the muscles.
I wouldn't call this bad news, per se, just an explanation for a few things. It doesn't really explain why he's not sitting up well yet - although he has started to get that if he doesn't put his arm out to catch himself, he's going to fall over. Woo! The doctor ordered an MRI to rule out any fixable abnormalities, but that's not till (UGH) September 6th.
Alright, now I KNOW y'all are gonna go look up spastic diplegia. I told y'all not to look up spasticity when I posted about it, but you went and did it (*cough* Vicki and Melinda *cough*) and you didn't like what you found. I'm going to tell you now that it's a form of cerebral palsy. The doctor stressed that it's very mild and he's fairly confident that treatment will help him. I don't know if it'll be lifelong or what, but if the doctor's not worried, I'm not worried.
Mostly. Still kind of daunting to say "My son has cerebral palsy."
I can't thank everyone enough for all of your prayers. As far as my emotional crisis, I'm really feeling a lot better... getting my emotions out on the table, figuring out what was bugging me so I could stop taking it out on Drew, letting myself feel what I needed to feel, all of that really helped. And thank you for your continued prayers for Ace. I love the kid so much, he's seriously a barrel of fun with a few not-so-fun things mixed in.
Time to go watch Ghost Hunters then look up a few support groups to find out exactly what I'm facing here.
5 months ago
8 comments:
He is bundle of fun. You are in my thoughts. I don't know what to say really except hang in there. He's still the most perfect baby ever to me. Until I have some. If I have some.
I am SO GLAD to hear things are ok w/ Ace! I was worrying along with you. And I'm happy to hear that you're feeling better, too. Whew!
I like how you wrote that Ace is all man-that was cute. :) He's such a cutie.
You all will remain in our prayers.
September 6 is a long time for a mother to wait for more answers.
:(
I'm very glad you got an answer, even if it wasn't that everything is peachy-keen. It's so much easier to move forward rather than sit still and worry, isn't it?
It's great that the doctor thinks it's very mild, though. It sounds like you've got such a good team in place to help Ace catch up.
I may have failed to mention that I'm keeping Ace in my prayers. :)
Hey, I tracked you back a while ago, when you made your first post to my C-L Blog. I appreciate your comments, and have been trying to be less tempermental.. Been lurking and reading your blogs for a while, but I thought I would say that I have been praying for ya, and I am glad that for the most part, you seem to like what I say. If ya ever need a new friend, Im just a couple of clicks away.
Thanks for your support and comments.
I'm with all these people here. Ace is awesome - he's already overcome so many challenges and it's just a further testament to his strength of will and the strength of the people who are raising and loving him. Like Melinda says, kick some ass! Go Team Ace!
You have WAY too many people pulling for you and Team Ace, there is NO way it can NOT work out for you guys. You know you are in my thoughts and prayers.
Your new friend,
Christy:)
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