Well, we met Tracey (Eve's PT) at the grocery store yesterday. We experimented with different ways to get Eve to feel more secure in the shopping cart (or buggy, as they say in GA). We started with a combo of towels wedged around her and a pool noodle on the handle. I think the fact that Tracey was there also helped - Eve had someone else to look at and it was a novel situation. So Tracey speculated that maybe part of Eve's problem was that she simply didn't want to be in the cart and maybe we could have some toys that she could play with as we shopped. Eve did pretty well as we went through the store. When we got back to the car we tried the shopping cart cover that I borrowed from a coworker. Eve did great! I think Jim may have been right about her not being able to see down. So, we are going to buy a shopping cart cover like the one we borrowed (we actually used to have one, but we lost it). I will also bring towels for support and some little toys for interest.
I also mentioned the idea of a second opinion (which my parents suggested). Tracey thought it was interesting. She said that usually parents get a 2nd opinion if they don't have a good fit with their Dr, but liked the idea of going with all our test results to a specialist in another major city (like Philly) for a consult. I also asked her what she thought was going on with Eve. I don't think she has given up on the idea of it being something metabolic, but her opinion is to wait to see what the MRI in December says. Jim and I might try to make an appt with an endocrinologist in the meantime, knowing that we probably won't get in to see one for months anyway. We are also still waiting on a decision from Dept of Children and Family Sercives (DFACS) about the Deeming waiver. If that comes through, it will pay what insurance doesn't pay. If we get turned down we will appeal. It would be helpful, though if it came through before the MRI and any other Dr appts (e.g. endocrinologist). Wish us luck.
2 comments:
Great about the shopping cart! I hope things go smoother now. I know that Lu gets really bored sitting in there. I end up holding him after about 15 minutes.
I was going to suggest a second opinion as well.
I'm assuming there are CP specialists somewhere? I have a cousin in FL that ended up taking her daughter to the Mayo Clinic in MN to finally get a diagnosis.
I am going to ask a friend of the family who is a PT at CHOP if she knows anyone there. But that's the tough part - how do you find a specialist when you don't even know the diagnosis?
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