Tuesday, September 1, 2009


Neurologist appointment went well. B and I are convinced that our neurologist is the best doctor either of us have ever seen for anything --- for ourselves or Sam. She spent over an hour with us, and is just incredibly thorough and explains things so well. We got to ask all of our questions, and she answers them in a way that is both teacher and doctor, which is incredible. She's super pleased with Sammie B's progress in PT and can really tell that she is getting stronger. And, with continued hard work (PT/OT), Sam's muscle tone should continue to improve, and she'll do all the things we want her to do. And once again, it seems her cognitive development is right on target (or ahead, if you look at her adjusted age). For each of the sort of quirky little movement things Sammie B does, I asked "is that common with hypotonia?" And each time, the answer was "yes, and it will get better." So that's encouraging. Sammie B is still doing some funny things with her eyes that the neurologist doesn't quite know why she does, but those are things we'd raised with Super Doctor and he wasn't too concerned. They know each other well, though, so they will collaborate. So, for now, we exhale AGAIN. We'll follow up with the neurologist again in 6 months.

I barely ate all day. Just a knawing feeling and nervousness about this appointment . . . I wish this were all a little more black and white; I wish I had a crystal ball and could see the future, but I can't. There are just too many unknowns -- Sammie B's brain is still growing and developing each day. So, there is no crystal ball. So, for now, I just listen to the doctor, embrace the all of the positive news, and exhale.

Lately, several of my friends (and my mom) have all been saying how proud they are that B and I are doing all that we are doing with and for Sammie B, and that she's lucky to have us. While of course, there's never been a question of whether we'd do everything under the sun for us (she's our Bean after all -- we are lucky to have her!), and while we aren't doing it for pats on the back, I have to admit, it feels good when others tell us how great they think we are doing. We are running ourselves ragged sometimes with the appointments, working in Sammie B's daily PT exercises, our own work, and life. It hasn't been easy, and there are days I've felt like I'm being held together by a thread, but we do make it. And, we have each other and some other wonderful people supporting us along the way, cheering us AND Bean along.

1 comment:

Elisa said...

Are you kidding me? Not only am I proud of you guys and impressed as all get out - you are such an inspiration! I can't imagine I'm the only one! And even on days when I can hardly stand to breathe my next breath - your blog and the pics of you and your bean just lift my heart up. You are ALL amazing! Love you!