Friday, September 26, 2008
Friday, September 26th, 2008
Just a few days post surgery and my swelling is back to "chubby" level vs. "square face" level! My parents are starting to recognize me again! Doesn't matter much to me - put a mirror in front of me and I am entertained. Mommy has decided that magnets are a gift from God because I can spend 30 minutes in front of the refrigerator knocking them off and putting them back on - just enough time for her to get dinner ready and she can still keep an eye on me.
I have been such a good girl these last few days and minus a little tossing and turning as I try to fall asleep (there is just no good position when you have a big ole cast and two sore and swollen cheeks) life has basically returned to normal. Hard to believe just a few days ago I was so miserable recovering from surgery.
While I was under anesthesia on Monday, my parents requested that all of the requests for blood draws be taken care of at once. My pediatrician wanted to see if I was anemic, UC Davis wanted to have testing done to rule out Fanconi anemia, Stanford genetics wanted to complete a chromosome breakage analysis and University of Washington wanted me to participate in a study on Nager Syndrome. I am a notorious hard stick so these requests have been months in the waiting. After I came out of surgery you should have seen all the band aids and needle marks - obviously I haven't improved in that area. One of the unfortunate parts of having all these requests (besides my obvious pain and suffering) is that everyone wants their blood drawn and put in specific tubes with specific amounts and mailed off a specific way. In the confusion, the blood drawn for the study at University Of Washington was put in a tube that did not prevent coagulation. My parents were given the blood to mail off by the surgery team and kept it cold until they got home. By the time they contacted the researchers about the blood, there wasn't a lot of hope that they would be able to use the samples. My parents decided to send it off anyway and today they heard back from the researcher that he was able to isolate DNA from the sample and would hopefully have enough for analysis. Yeah! With so few people in the world with Nager they only have a handful of samples so far so getting as many as possible is important to the study. Here's hoping they can identify the gene soon!
Peyton Nicole Smith