Tuesday, January 14, 2014

For some reason, this little girl didn't sleep at all last night...I dealt with her till the 3am, then she hung out with the nurses so I could get at least 2 hours of sleep... I'm hoping for a better night... She gained 4oz this morning (10.4), and tonight for the first time in a while we have maintained our weight... We didn't gain but I was so excited that she didn't lose... She does NOT have cystinosis, which is a blessing.. That is a complicated disorder... We are still waiting on her fluid retention test... And the micro ray test from UVA... That is a test that tests different types of gene mutations, instead of just one like for cystinosis... Both of these should be back any day... Her heel was pricked this morning to make sure her sodium is still normal.. It is but is down to 138.. So we have to get it checked every day to make sure it doesn't get to low... Tim called the doctors this evening to see what our next step is and apparently we are having a meeting Thursday to discuss it.. It will be me, Tim, general pediatric doctors, genetics, and kidney doctors.. I don't know much about the meeting cause they didn't tell me about it this morning... But thursday is the best day for Tim to come.. They also said that she has made progress but that she is still small, so I think they want to keep her several more weeks to make sure we progress.. I will let you know more when I know more...