Man, are we beat!!!! This week is the long anticipated NIH trip for the kidney/liver study. In case you don't remember....short recap....at the JSF conference back in July some doctors from the NIH were there who are studying what are called ciliopathies. JS is believed to be a cliopathy which may be the root of the kidney and liver failure that is sometimes related with JS. At the conference they invited people with JS to come to Bethesda, MD to participate in their research study. The whole trip is paid for by the NIH and we get free medical testing which will help us know for sure whether Haley will have kidney/liver problems in the future. We were kind of worried that because none of her current doctors had even heard of JS that they may be missing early warning signs of future problems so we felt like this trip would be worth while.
So we boarded a plane this morning bright and early at 7:30 am and off we go to the NIH. This is the first time ever flying with Haley. Now I hate flying to begin with, but add a toddler into the mix.....you can just say I was filled with DREAD!!!! Everything went surprisingly smoothly though, no problems getting through security with all our baby paraphernalia, no outbursts or temper tantrums during the flight, we really couldn't have asked for better behavior!! We are so proud of our big girl! But it was an emotionally taxing trip, schlepping our junk around and worrying how Haley would handle the plane ride.
Here are some pictures of Haley walking in the Baltimore Airport while we were waiting on the shuttle to the NIH
We are staying at the Children's Inn at the NIH. It is pretty nice, they really work hard to make it seem as much like home as possible. And let me tell you, the NIH is no joke. You have to go through an airport type security check to even get through the gate.....get off the bus, with all your crap, run it through the x-ray machine and walk through a metal detector type of stuff!!!
Tomorrow we meet with Dr Gunay and her nurse. I'm not sure what all is on the itinerary, but she will have a bunch of tests including an echocardiogram, a kidney and liver ultrasound, some blood work, and a 24 hour urine collection. They are pretty good to not push the kids too hard to do things that stress them out too badly, but I'm sure there will be some amount of protest on Haley's part.
And I also have a new first to report!!!! Haley has been able to pull herself to a standing position for a while now during therapy and if we help her, but she has never done it spontaneously and completely on her own. Saturday when I got her out of bed in the morning, she sat up put her hands on the rail and stood straight up. And needless to say we had never bothered to move her mattress down and had I not been standing right there she could have toppled right out. Of course, we moved that mattress all the way down before she went down for her next nap!!!
Let me OUT!!!!
Oh! So this is how you do it!!!
Well, we will try to keep you updated on what is going on while we are here. Take Care!