The good news is our visit today was actually pleasant. We waited a mere 10 minutes (his first appt of the day), and about 20 in the room. The nurse who weighed, measured, and took El's blood pressure was a sweetheart, and gave him a zillion stickers. And our visit with Dr. Wong was pretty comprehensiveand positive. He seemed enthusiastic to see Elliot, and noted his growth and progress with, dare I say, optimism. Some of what we learned today:
- The loss of Elliot's hearing in the right ear was viral (not due to brain damage incurred in utero), and he has likely shed the virus (as determined by our pediatrician as well); therefore, it's unlikely that he will lose the hearing in his left ear. This doesn't effect our "testing every 3 months til he's 3" plan, but it's certainly good news.
- The generally moderate tone that we see in El's left hand and foot from the cerebral palsy may have the tendency to tighten as El gets older and goes through rapid growth spurts. It's important for us to keep him loose, and keep stretching him out. His PT who came to school this afternoon thought that this was really a non-issue.
- We only have to visit the neurologist once a year now because El is progressing so nicely! Yay! This is good news. We'll keep up with the preventative and observation visits with our other specialists, but I'm glad to cross an appointment of the list.
On our way out the hospital, we made appts for our 3 month hearing follow-up and the second opinion on the opthamology visit. I'm really hopeful about this visit. Each visit lasts between 2 and 3 hours because he comes in to observe the eye pre-dilation, and schedules the other parts of the exam after that. This is a standard practice, people! He's already better than our current guy, and we haven't even seen him yet.
We still have a visit with Thing Number 2 about El's eyes next week. We'll see what he thinks, but I've already kind of written him off. Does anyone out there know the protocol in seeking patient information for a second opinion? I'd like to know how to do this without any wierdness.
In other El news: it's likely Mr. Smarty Pants will be kicked out of the school for the deaf. He's meeting all their goals for him and has so much speech that they've dropped doing signs with him. This semester's goal was for Elliot to use three word sentences. He's at 5, with some wonderful subject-verb-objects, like: "I want more kisses," and "I want to go with Morgan." It's funny how we receive this news. I'd be happy for him to stay until he's five, but him not needing the services is supposedly a good thing.
And he's beginning his annual evaluation tomorrow. This process usually requires 3 visits of 3 hours with an objective evaluator (Battel test). In the month after that, we can expect the evaluation from the school system which will be trickier. Qualifying medically for services and qualifying in the school system are two separate things. The school system will only provide services that are necessary for El to be successful in a school setting. For example: Unless the high tone on his left side affects his ability to hold a pencil, and participate in the classroom, he won't receive services.
Another tricky thing: I tend to "low ball" El's abilities with the evaluators and doctors. I want to hear what the bad news might be, and I always want to get as many services as possible. This doesn't mix well with Proud Papa, who's so proud and inspired by our guy that he has a hard time not painting his abilities in rose. In any case, the evaluator comes often enough to make her own observations.
More news next week about these other visits.
1 comment:
Good luck with testing this week. And let me know if you need some costume help for the queen (who knew there'd be *another* queen other than us?!?) and her page.
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