Monday, July 27, 2009
We have come to a few conclusions:
- This is one of the very few things he controls (along with the eating). So it has to be under his conditions before he'll choose to say words. He does have a large vocabulary, but if you ask him to say something, he won't (he can, so it's not apraxia or anything like that) because he's choosing not to.
- For a child with a neuromuscular disease, he moves a LOT. Speech Therapist thinks that he is concentrating on that at the moment--when children learn to walk or crawl oftentimes the vocalizations will cease somewhat until they get it down--they can't do two things well at once.
- He is constantly surrounded by people who cater to his every whim, so all he has to do is grunt and look at whatever he wants and he gets it (not a great thing, but as he can't get toys, etc. himself that's just the way it has to be).
So, we (Speech Therapist and I) have decided that he will talk talk whenever the heck he feels like it, the same he did with the eating issue. I think the key here, though, is not to force him or fight him about it, as he proved with the eating that approach does. not. work.
Boo. I really want to know what's going on in his head. Guess I'm going to have to wait.
Thursday, July 23, 2009
In other news, I got to sing him to sleep yesterday--I don't get to do it much anymore, but when he laid down for his nap, he was at the right level of sleepiness for me to lie next to him and sing him away.
He's been pretty chill the last few days, and kind of sleepy. I don't think he's getting sick--maybe just a growth spurt. The weather here is too humid to take him out, but I'm hoping for a break from that soon (East Texans, read: October...sigh...) so we can get him out again. I think he's bored.
Friday, July 17, 2009
Tuesday, July 14, 2009
The other neat thing he did today was drink from his bottle sitting in his chair. I didn't think he could do that sitting up. He just never ceases to amaze!
Monday, July 13, 2009
Monday, July 6, 2009
- Our East Texas Signature Drive for the Petition to Cure SMA got great results! We started at 57 (boo) and we ended up with 292 signatures! YAY! Great job, East Texas!
- Dakin was a little media magnet--one newspaper article and two news spots--this pic is LaKecia Shockley of KLTV news, the reporter who covered Dakin's story. She was wonderful!!
- We met with Congressman Louie Gohmert (R) to discuss the SMA Treatment Acceleration Act. He is a wonderful man and we hope that he will decide to cosponsor the Act. The other little boy and his mom in the picture came with us to meet him--Matthew has Type 2 SMA.
- We had the amazing chance to meet Gwendolyn and her sweet parents.
This may not seem like a lot, but for a little boy who doesn't go out a great deal, it was very busy two weeks.
Saturday, July 4, 2009
One of the things that most people don't know about me is that I never saw fireworks against a dark sky until I was 9 or so. Yep. I'm from Alaska--born and raised--and up there at this time of year it is twilight all night long. I have very vivid memories of watching fireworks at midnight against a still-blue sky, softly backlit by the Alaskan summer. These are some of my favorite memories.
Tonight, I had the chance to make another wonderful memory--watching fireworks on TV with Dakin. He enjoyed them very much, and kept flapping his arms and looking at his butterflies that are hanging from the ceiling fan. I have no idea how he knows that they are in the sky on TV (he flaps his arms when he sees something in the sky), but he did. Smart kid.
Anyway, I'm glad I got to make another wonderful fireworks memory with my sweet boy. Happy 4th to all!!