Saturday, May 16, 2009 Update from Friday

I went to see Shailee Friday, and unfortunatley she does have pneumonia again :( so they are once again treating her with antibiotics to get rid of the infection. she isn't as bad this time as she was the last time so they caught it early. they checked for it because on thursday night shailee started having bronch spasims again, and she did this like 4 or 5 times so they had to sedate her to stop them. so of course this pushes her back for surgery once again because she has to be infection free for 4 to 6 weeks after an infection, so it is going to be a long time before she gets to come home :( they also drew blood and they are not finding any infection in her blood which is good but she does have raised white blood cells which indicates an infection, so they did a lumbar puncture on her last night to test and see if she has an infection in her spinal fluids. they said the results wouldn't be back for a couple of days but the longer they don't hear from them the better. outside of that she is doing ok, and is stable. she weighs 7 lbs. 2 oz. now and she is still taking 54ml of formula every 3 hours and tolerating it good. I met with the geneticists assistant yesterday as well and i got the final report on shailee's condition as well. she is still considered mosaic cri du chat, and they didnt really change alot other then the break point on the 5th chromosome is at 13.3 instead of 13.1 and the additional material is the 5th chromosome where it duplicated itself and inverted itself before it attached (so it is upside down) the additon is point 11 to 13.1 so she is still missing the same amount as before and what is missing didn't duplicate anywhere. but there is no other cases of cri du chat like hers so they still have nothing to go on and can't really tell us much as to how she will be when she is older so we will just have to wait and see how it goes later down the road. they also FINALLY let me hold her yesterday!!! and i held her the whole time that i was there! bill was sad when he heard that because he wasn't able to go with me since he had to work, but they said that he could hold her sunday when we went in so he is very excited about that. other then that there are no changes at this time. here is the pic from yesterday, and i will update more soon.