So, it has been a while since I've actually posted on here and I apologize. When things are going well with Aidan time just passes quickly, and thank goodness things have been going well! Aidan is doing great. He's doing great at school now that we've rescheduled one med that was making him sleepy during the day. We had tried to wean him off of his daily dose of Clonidine which helps with the storming symptoms, like the posturing and tight muscles and stuff, but it became very apparent that weaning him off was not going to work. Although Aidan was alert and smiling and laughing at school he was doing a lot of posturing and by the time I was picking him up from school it was so bad that he would start crying because he was in pain.
We've put him back on the medicine and have changed the times he gets it so that he's awake and alert at school, and they've been telling me that he's smiling and laughing a lot. There is a girl from one of the local high schools who comes in to talk to Aidan and he always smiles at her. In fact, Aidan is just a big flirt in general. He always has been.
I've started realizing that even though Aidan might not be able to do the same things he used to be able to do, and he might not be able to do the same things as most kids his age, he's still Aidan. He still loves his bananas, even if they are in pureed form, and he loves applesauce and he still likes the Wonder Pets and will turn his head toward the TV when they come on.
We started outpatient physical therapy this week, and I am hopeful that Aidan will be able to make some progress. The therapist had him in all kinds of positions and he tolerated the movement and the position changes like a champ. Earlier on, he wouldn't have handled them well. I think one of our main goals is to work on Aidan's head control or just getting him to engage those muscles to lift his head some. Right now, he has no head control at all... as far as lifting his head up and holding it upright. Just imagine a rag-doll. He can move his head from side to side, but those are using an entirely different set of muscles.
Anyway, that's what is going on here. We're all doing pretty well. We're hoping to have some big fundraisers early next year, but we'll post more about that when the details are ironed out. Evan is doing well, and baby #3 is growing well. I have an appointment next week and will be 16 weeks at that point so we're hoping to find out if the boys will have a little brother or sister soon. (I'm hoping for a girl, but we'll be happy with either, of course.... but I'm outnumbered here!)
On a final note, I wanted to add a video that one of the mom's on our parent's of near-drowns group made for the HUGS Foundation. There are 2 pictures of Aidan in it (at 0:11 and 1:54), but it is wonderfully put together and shows children of all ages and progress levels of dealing with near-drowning. Thanks for putting the video together, Julie!