Wednesday, April 8, 2009 Our Visit Today As Well As More News

We went to see baby Shailee today, and all in all she is doing good. They raised her formula again she was taking 18 cc's earlier but they were putting her on 20cc's every 4 hours starting at 4 pm today. She is still doing well with the formula which is a good thing. She is still pottying good and without the aid of a supository. She is still on her respirator due to her high level of secretions as well as the fact that she can't swallow. She is still out of her icolete and in a more normal bed that isn't completley closed in, and she was still in clothes today as well. She woke up for about 45 minutes today so we got to play with her a little, then they gave her some food and she was out like a light. Sister Maxine Young came down and did a sickness blessing on our little girl with us today as well. I spoke with one of the doctors today and health wise she is improving great. the surgeons looked at her foot today and it is coming along good. they got the lab work back for her hormones and her cortizon is still good, her thyroid and growth hormone also came back normal this time as well (thank god) and he will do a recheck on them again in 2 months. Her heart function is still improving and her vsd and asd (the 2 holes in the top and bottom of her heart) are getting smaller so they still feel that they are going to close on their own. they have also lowered the iv fluids that she was getting for nourishment as they are uping the formula intake. as far as her gag and swallowing she still hasn't developed those but they are still waiting until she reaches when she was suppose to be due to see if they will come along, and if they don't they will do some oral therapy to see if they can help it along and if that doesn't work then they will have to put in a g tube in her belly for feeding. but their goal right now is to wean her off the iv fluids and have her only on formula. We also met with the geneticist today, and i must say that i am not all that happy with what he had to tell us, but to a point i was very prepared for how he would put things as i have been told that they always give the worst case scenario so i expected it but it is still very hard to stomach. We found out that Shailee is falling into a category that only three other children have fallen into and of those three only 2 has the same chromosome make up as her so there really is no way to tell how all this will end up for her, but she is going to be loved no matter what. Shailee does have the deletion of 5p (she is missing part of chromosome 5) but on top of that she also has an unknown addition to 5p (she has an addition of genetic material that they don't know where it came from on chromosome 5) so what she is actually called (in terms of her syndrome) is Mosaic Cri-Du-Chat Syndrome, which is more rare then the regular form. Leave it to my daughter to have to be even more unique. The geneticist of course said the usual, "her prognosis isn't good", "she can have severe mental retardation", "she probably will not talk", "she may not walk and if she does it could be as late as 5 to 6 years old", and "if she is still well they will check her chromosomes again in 6 months". So pretty much if she is still alive in 6 months they will check her again, but i am taking what he said with a grain of salt because Shailee is already showing signs above the normal for her syndrome, so we are not going to give up hope because there is always hope in some form. they also want to do chromosome studies on us as well, even though the said "this isn't because of anything you two did" follwed by '' if the father shows this or the mother shows that then it would have come from them". either way it isn't going to change nor make my daughter better so why single one of us out like that?? So now we are just back to waiting to see how things turn out for her, and only time will tell how mild or severe her problems will end up being, but all that matters is that she has alot of people that love here and nothing will change that. I will update on her again tomorrow, and here are her pics from today.