Joshie has atlantoaxial instability.

[kellyds]

Bummer. He loves to do somersaults and gymnastics, and we aren't supposed to encourage that until he has an MRI at the end of August to evaluate the extent of the instability. He'll have to be put to sleep for the MRI. He also needs to be put to sleep to be fitted for hearing aids, so they'll do both procedures at once.

So, who else has a kid with AO instability? Did you "do" anything about it? I guess they can't play football in Special Olympics. What else?

[Googsmom aka Jennifer]

{{{{HUGS Kellly and Joshie}}}}}}} Did you go to the hill to get the testing/xrays? I know a lady, as alot of us do here, Renee, who's daughter has/had this. She had to have the surgery and everything. Her blog is www.myspecialks.com if you want to chat with her i'm sure she would help you with questions.

Patiently waiting for the anwser. If your up on the hill and need anything, just let me know ok.
{{{{{{HHHHHHHUUUUUUGGGGGSSSSSS}}}}}

[kellyds]

He hadn't been screened for that, so I asked them to do it when we were at OHSU for the Down syndrome clinic. It isn't usually part of what they do, but Dr. Pinter added the Xrays in because I was concerned. Results from the clinic have come dribbling in over the past couple of weeks and I just got the Xray report a couple of days ago.

Speaking of results from the clinic . . . His gross motor skills were said to be almost in line with his age. I would have guessed that was the case, because he loves to swing and slide, he can throw and catch a ball accurately, and he's an awesome soccer dribbler.

The lady evaluating his fine motor skills basically said he didn't have any! She tried to get him to sit at a table with her and put a puzzle together. He picked up a puzzle piece and threw it. That was the extent of her evaluation. Joshie had just gotten out of his car seat after a ninety mile trip. He wanted to run around, but he could have been enticed to try the puzzle if she'd only tried. He doesn't put puzzles together. So far, he will put blocks in a coffee can for me. I've cut a hole in the lid and I'm trying to get him to put a block in the hole consistently, but he's hit-and-miss with his cooperation on that. Still, he CAN do some fine motor things. I felt like this therapist wrote us off the second she heard that I'd provided all of Joshua's therapy so far. She said, "You really should locate some resources for him." I thought, "What the heck do you think I'm HERE for?"

After I received the report, I realized she probably thought I was there at the insistence of our pediatician, instead of on my own initiative. I had to call the pediatrician to get a referral to the clinic for insurance purposes, so all of the reports said we had been referred by the doctor . . . who has only seen Joshua once, almost two years ago.

Anyway, that's my vent for the day. Joshie has a good pincer grip and great finger isolation when he's playing computer games. He pokes nice, accurate holes in Play Dough! His fine motor skills can definitely use improvement, but he DOES have some. Sheesh.

[Googsmom aka Jennifer]

Kelly, just my humble opinion here of corse, but in all the 2 1/2 yrs EI came my house I could of filled that time differently, believe that LOL Momma therapy is THE BEST therapy that can be. I know of some people who love their therapy people and they do alot of good. Not so much in our case. Joshie is doing great!

I don't put much thought in any evals Brook has. I have said it before and will say it forever.... no one can get a good read on our kids in a segmented alloted amount of time. No way!! I always sit in the room with said eval person and do my own notes. Maybe i'm a stinker, I am...LOL We Momma's know best and we know what is up w/ our little peanuts. Eval's shemavals... thats what I say

[kellyds]

Thanks for the encouragement. Actually, the visit to the clinic underscored why I've chosen to do most of this stuff myself. I can do it when Joshua is most receptive, instead of on a schedule, during an "appointment". It also helps to get the other kids involved doing the same thing, because Joshie is a copycat and it's motivating for him to NOT be the only one in the room trying to put a puzzle together.

[momofkatiebug]

Hi Kelly,

I'm mainly a lurker here, but thought I'd de-lurk to respond to this thread.

My daughter had the spinal fusion surgery on C1, C2, and C3 vertebrae when she was 3 years old. We went in to have the AAI x-rays and they found that she had an actual break that was old and scarred in her C2 vertebrae. (They claim it probably wasn't related to AAI, but to something that happened to her en eutero.....I have my doubts about that though.)

I pray your little guy won't need the surgery, but if he does, I just wanted to let you know that there are others out here who have been through it and lived to tell the tale. Renee on the other board is a good resource too...she and I talked and e-mailed quite a bit when her daughter went through the fusion.

God bless,
Deane

[kellyds]

Deane, I appreciate you de-lurking. If Joshua needs surgery, it would be great to be able to talk to some other parents who have gone through this. An actual break . . . wow! :-(

[CC]

Chris is 16 and been tested 3 times so far and does not have this issue.

Just wanted to say HUGS

CC ~