Well, We are still here. We Were going to be going home this week but they found the cause of Kylers sinus issues. He has a very rare, odd bacterial"Bug" that takes 6 months to a year of treatment to kill. Well, I.D came up and said they want him on 6 WEEKS of I.V antibiotics. Since he has already been on three that means we need to stay here for 3 more weeks. The good news is that it is NOT contagious and the even better news is that as long as we are treating it and not letting it go crazy then it is not dangerous for him. He now has a TP tube and is doing very well with feeds through it but the meds still make him a little nauseated. The meds are getting better too though. Atleast we have 3 more weeks now to maybe get him eating so that we dont have to go home with the tube. Other than that all of his medical stuff is the same. He is producing platelets now ON HIS OWN!! WHOOHOO :) His platelet count today was 101K and he hasnt had a transfusion in 2 weeks! YAY!!! That was a big plus :)So far everything else is going good. He has had a lOT of diarrhea due to the fact that his stomach is "learning" how to work again so that has made his bottom extremely sore even with ointment so now he hates getting his diaper changed. He does, however,LOVE his baths again and he showed it by giving me a bath tonight with him LOL It was so GREAT to see him splashing around and playing in the tub again that I just sat there and let him soak me and I loved every minute of it bc he was sooo happy!
He is doing really well with his walking. We still have to hold his hands but he is getting braver and tried to let go and the other day he stood all by himself for about 20 seconds. It wont be too long before hes walking..wait RUNNING LOL out the door :) He gets excited when they let him out of the room and he always tries to escape if he can. hes TOO funny! He is also saying a lot of new words and has all kind of cute new things he does. I still cant believe he is 1...My baby is growing up sooo fast! Gosh I love him so!! Well, we are going to bed..I just wanted to do a quick update while he is sleeping. We've been having so much fun now that he gets to get off of the pump for 12 hours and can actually walk around and play without having lines hanging off of him, and I have completely forgotten to update. please keep him in your prayers and HOPEFULLY we will be home in around 3 weeks! :)