Yesterday evening, Mommy got a couple of phone calls. First, Janice from Shriner's called to let Mommy know they did not have any open OR times in November or December. However, if anything comes open at the last minute they will give my parents a call to come in on short notice. If that doesn't happen then I am for sure scheduled for my left hand surgery on 1/7/09.
Mommy also got a call from the Genetics department at Stanford. My test results came back for Fanconi Anemia. Back in December of last year, the Genetics department at UC Davis wanted me to have some blood drawn to rule out Fanconi Anemia but I am such a hard stick that there was never a good opportunity to get the blood. So when Stanford took out the distractors last month, they drew some blood for UC Davis for the test. Fanconi anemia (FA) is one of the inherited anemias that leads to bone marrow failure (aplastic anemia). Many patients eventually develop acute myelogenous leukemia (AML) and at a very early age. FA patients are extremely likely to develop head and neck, gynecological, and/or gastrointestinal squamous cell carcinomas, again at a much earlier age than in squamous cell carcinoma patients in the general population.
Because kids with this disease have some similar anomolies to what Nager has - UC Davis just wanted to rule it out since there was a test to do so. Thankfully, the test came back negative! Stanford said they should have the chromosome array test back later on in the month and would give my parents a call whent he results were in.
Around 8:30 last night, my parents got a call from the nursing agency that Marianne was a little under the weather so my Mommy got to be my night nurse last night. I was very good for her, though, I slept almost 12 hours! On the other hand, because there are things that need to be done during the night while I am sleeping, Mommy didn't get much sleep herself. She'll need lots of coffee today!
Mid-morning my OT, Karen called to see if we had some time today for her to stop by and take a look at how I am doing with my hand since the cast has been removed. She came by at 3 and did a really good job working with Mommy and I. She helped Mommy figure out how to encourage me to use my hand and my arm during play time to start to use it. By the end of the hour session I was doing great - even picking things up with my hand! There isn't a lot of movement in the thumb yet but that is going to come before long I'm sure! After Karen left, Mommy saw that I continued to use my hand more often even with the splint on. In fact, I would initiate trying to pick things up with my right hand first. Sometimes it would get hard and I would switch to my left but Mommy thinks that is still pretty amazing progress in such a short time. But then I'm a pretty amazing girl - don't ya think?
My parents got another call this evening that Marianne was still not feeling well, so Mommy will be my night nurse again. I'll try to be easy on her. I hope Marianne feels better soon.
Peyton Nicole Smith