Wend night Adriana was running a fever so I decided to call the GI doctor on call and of course he had me bring Adriana in. We slept the night in the ER and the next morning we had a space waiting for us in the nursery. They did take some blood cultures from Adrianas line and sure to say we got posotive results she had staph and I cant think of the other one right now. She was started on vancomysin and that will help clear her line. We only have one neagtive culture right now and need 2 more in order to go home on antibiotics wich I already know how to give to her. I am more scared she will catch something here and take it home with her. So we had a nurse that honestly is nice but seems that she has no idea what to do, she did many things wrong like picing up lines from the floor and wanting to use them, to laying out all of the alcohol pads on a chair w/o being in there packets and wanting to use those too.It was like she was trying to contaminate Adrianas line I don't know what she was thinking or where she went to nurisng school. I need to watch the nurses like hawks here, so have some good news. Friday we disconnected Adriana to see if she is able to tolerate being tapered off of TPN, and if so for how long without her sugars dropping. We have tried many times and have not succeded but this time to everyones suprise she was able to tolerate 7 hours 1/2 and then her sugars dropped and they drew a lot of labs. I was told that her liver does not have enought glycogen stored so tht is why her sugars drop. 7 1/2 hours is amazing to have her disconnected I would of been happy with 1 or 2 since she has been running at 24 daily anything would be great. Last time we tried tapering her, her liver was much sicker and bili much higher but thanks to omegaven her bili has come down a lot and is almost normal and she is able to come off of tpn. That is the only good thing we got from being here, I can't think of anything else.I hope we are abe to go home soon, this Saturday March 6th is Adrianas birthday she will be 1 year old. I hope we are out by then for her birthday so we can throw her a little something and celebrate with the family. I would hate for her to spend it here in the hospital. I will keep everyone updated with what happens and when we are able to go home from here.

Adriana is doing well just being herself. We started her back on feeds at just 1cc an hour. I placed her NG tube on Monday in clinic. I did not enjoy making her cry but I have to learn to place it myself. In 2 weeks we will bump her to 2cc's as long as she doesn't dump. So far so good, 300 is our number for ostomy, it would be the most her GI would like to see. Well nothing new with her we have pt therapy once a week and ot not as often, but she is getting better with eating. Of course she doesnt know yet but is learning little by little. The other good news is she doesnt qualify for a transplant anymore, the GI dr told me she is doing too well and would not qualify right now. That's good news, because she is getting closer to 20 pounds which is transplant weight. Well let's just see where things go. This coming month she will be a year old. It is very sad looking back at our year with her but just to know she is doing great right now it was all worth it. She has suffered a lot but if you were o see her she is the happiest baby I have ever seen. She is nothing but smiles and giggles, you would of never guessed what she has gone through.

Things are going good with Adriana, she is 11 months now and almost a year old. She is behind on her gross motor skills but is trying hard to catch up. She does sit with a little support and is able to catch her body when falling over. She does not crawl or talk all she can say is mama and papa of course in spanish because that is what we talk to her in. She is the happiest baby I have ever seen and loves to laugh and giggle all day if you let her. She loves to play patty cake with me and loves to make faces at us or noises and then laughs. She is now up to 18 pds 4 oz and pretty long, she is growing at a good pac but stretching pretty fast. We had clinic yesterday with our GI doctor and he is very satisied with her and how things are going. She is learning to eat and we have feeding therapy and physical therapy as well. Her bili is coming down, it is still elevated but not as much as it use to be, we are at 4.1 right now and her liver enzyme numbers are coming down. Thats always good news to hear, I mean after all I use to hear was that they were going up. Adriana had been on Ng feeds for about 1 month or so and I was suppose to go up to 2ccs cont but she decided to remove her tube. I of course did not feel confortable placeing it so we had to wait untill clinic. I placed it in clinic with a little guideness, it's ot as bad as I thought, I just don't like makeing her cry her little eyes out. We started her back at 1cc and in 2 weeks we will go up and see how she does. Cross her fingers that she can go up and do well. Our number for her ostomy output is 300. Her GI doctor doesn't want to see 300 or more. If so I need to give him a call and if she reaches more than 300 I have to bring her in. I also asked him what his plans are with her since she is reaching tranplant weight. He told me that right now she doesnt qualify for transplant because her liver is not as sick and she hasn't lost line sites or had many line infections. That was something nice to hear since he does know how I feel about tranplant. I am not againts it but would only do it if there was no choice for Adriana. 3 months ago she qualifies for transplant and now she doesn't, so he told me we will just keep working on getting her to learn to eat and of course getting her feeds up on her NG tube. He said he doesn't really have a time frame on how long he said only time will tell. Which is true because one minute she is fine and the next she is sick. Well I will be adding more picture of Adriana and her summer clothes which she loves because basically is naked.