Sorry for the lack of update here....I'm having a hard time coming up with the words for how our DuPont trip went.
If I could sum it up in one word? Headache.
I have no pictures from the wheelchair clinic appointment. Isaiah apparently wasn't in on the plan. The plan for him to take a nap in the car ride to Delaware....so by the time we got to his 1:00 appointment, he was a grumpy exhausted little monster who just wanted a cuddle.
It seems others weren't in on my plan either. Sigh. Let's just say that there was a miscommunication. I was seeing red and I was basically on the verge of a temper tantrum most of the appointment; I could hardly speak. On top of that, Isaiah was in a bad place....lots of crying, grumping, and slumping.
Based on the 20 minutes that they had to observe Isaiah, [it seemed as though] the people we met with decided a manual probably won't work for Isaiah. Given "how well he is doing cognitively", he'd do best with a power chair.
I have zero negative feelings about power chairs....but in our situation, it's not time. The time may be when Isaiah is in school. Years from now. Plus, we're not ready. We drive two tiny cars. We live in a bilevel. Power chairs are big and heavy.
The other option that was suggested was an adaptive stroller.
We already have a great one that a member of our OI family gave us. It's great, but doesn't offer the independence I know Isaiah should have.
I believe in Isaiah.
I believe, given the right tools, he can get moving and strengthen his muscles.
He can and he will.
I am feeling bitter from this experience. The people we met with were kind and wanted to do what they feel is best for Isaiah...but they don't know him. They know what he looks like on paper. They know what he looks like (napless) based on 20 minutes of time.
I know what is best for my boy. I won't question what my gut says.
The positive is that they are working on a demo manual chair (that our insurance would cover). I am worried the demo won't work. I am worried it's going to be too heavy. I am worried they are setting him up for failure....so that they make me question is right for my super baby. The chair I had in mind, that a number of OIers have been successful with, is 8-9 lbs, but getting it is tough. This demo chair is going to have a lot to it, and will likely be heavier that the chair we want. The heavier the chair, the more weight Isaiah has to push, the more stress on his body.
Currently I am spending way too much time scouring the internet trying to find a supplier local-ish to me that could at least show me the chair I think would work best. Wish me luck; the maker is based out of Sweden.
So, clearly our appointment didn't go well. Feeling defeated, we headed over to the Ronald McDonald House to check in for the night. We were planning to stay since we had to be back at the hospital at 6:45am. Just as Isaiah was waking from his nap, I got a call from the hospital. I mentioned that Isaiah had had a sinus infection last week and was doing much better but was still on his antibiotics....
Yup. They cancelled. I may have cried. Dave took off from work. We were checked in to the McDonald House!!
Basically, the anesthesiologist wasn't comfortable because of "Isaiah's respiratory history".
So it's been rescheduled for a little over a week from now. Dave has to take another day off because he wants to be there for this and we will likely be avoiding everyone to avoid Isaiah catching something.
We need ice cream.
Lots of ice cream.
A positive through all of this is that Isaiah is feeling so much better. We had water therapy today and our little fish DID AMAZING. He kicked, he sat up, he reached for toys, he threw toys, he held his head up almost the entire time...he seriously rocked it.
He can and will continue to grow stronger. I will find a way to get him moving. We can do this.