Wednesday, July 14, 2010


Okay first of all I'm giving myself a mad shout out. I made it to a different doctors office in Indy, and home today all by myself. I even had to figure out one way streets some. So there's my little pat on the back.
We went to see Abigail's neurologist, he was just doing clinic at a different office. Overall it was a pretty good appointment. It was to follow up after the two MRI's that were clear. :) We talked about her weight loss/maintenance as well as some of her walking/physical things that have no clear answers. The conclusion was first that we would see a specific developmental pediatrician who specializes in adoption practice. The other answer was one that we had already come to a bit with her p.t. and it's a wait and see.
So on Monday Abigail will be getting fit for something called derotation straps. We have a temporary system right now to see if it is helpful...and it is. The basics of it are that there's a belt with two straps that wrap around her legs then hook to something that slides on her shoes. The straps help pull her feet out because she toes in when she walks. It is truly amazing the difference it makes when she is wearing the one's we have I can't wait to see the ones that are actually fitted for her and attach to her shoe (through a hook they will attach). The time period will be a couple of months, and if it isn't getting better, or if it gets any worse, we will see a pediatric orthopedist. But for now, we just have another "thing" to deal with putting on in the morning (then taking off for pottying, then on, then off....). So it's not the most convenient thing ever, but we are more concerned with wanting our girly to be able to walk and run well as opposed to convenience and looking cool. :)
We also discussed the possibility of genetic testing some day. I don't think we really want it done. It's sort of a long explanation, but the basics of it are that they have not identified all of the gene mutations for NF yet. Some of the ones they have identified have been linked to more severe symptoms of NF. The unknown of NF is hard, but adding to the unknown that your child is at a higher risk for severe thank you. I would rather not know at this point. We have talked about the testing a few times, and in reality it's not an option anyway because insurance won't pay for it, and it's expensive. So maybe we will revisit it in a few years, but for now we like where we are.
I have some fun pictures and promise that I will try to do a post with them in the next few days. I am exhausted, and we seem to be in a groove of a couple of appointments a week right my days at home I have spent catching up...and enjoying not having to leave. So there's our fun update...and I'll leave you with the news that Abigail will be making the transition to a "gigirl" (big girl) bed very soon. :)

Peace to you all,

No comments:

Post a Comment