Nothing new with Adriana she continues to do well and act herself. She is getting bigger and bigger I can't believe it that at one point she was 1 pd 10 oz. If you were to see her now you would not believe me. Everyone is so impressed with how well her color is coming back and jaundice is going away. We have entered the baby food world. Adriana will swallow some of it but not much to say, at the most would be a baby spoon full. Of course not all at one time I mean in total. So far no cold or flu or anything like that, we have been good on keeping it out of our house. She sees like she has finally overcome her bronchiolitis and the ugly cough and secretions are gone. She has been able to sleep all through the night without any problems. We will be seeing her GI in a month and I will bring up the idea about a NJ tube. I feel like we need something down there in order to rehab her gut. I will still continue her feeds but it's not much and I don't think it's really rehabing. Well we will see what her doctor thinks about that and how things go with her. I would like to get through the holidays without any trouble. Hopefully Adriana is able to stay healthy and have a good first Christmas. We were also able to put up her tree and of course she likes the lights.


This is what you call a pink panther


Adriana under cover


Adriana getting ready to make herself over


Adriana stunned with her new make over

So we we made it to Adriana's Gi app on time on wend. We went down to do blood work which of course she screamed and cried and most likely scared the rest of the kids waiting outside to get there blood drawn. She was then complaining the whole time after we left the lab. We then went up to her app and saw her GI doctor. Dr. C was there and they weighed her which she weighs 15Pd's 12 oz and is not growing as fast. may I remind you they had gone down on her sugars from 15% to 13%. I told Dr.C that I was trying to feed her baby food and explained why and he told me that I could continue if I would like. He told me it's best to keep her interested in food and to eventually get her eating. He told me just to watch her ostomy output. Of course he told me her ostomy out put is low so he would not be worried if it went up to about 200'cc a day. Right now she is putting out about 100 a day which is not much according to him. He told me to get her feeding therapy which I am working on. He said her Bili is coming down the so are her other liver numbers. He told me she looked great and that we did not have to come back until a month. So it went good but I also told him I was frustrated because she does not eat much and I felt like it wasn't getting her any where. I mean I wouldn't really consider this rehab because there isn't much food getting into her stomach. Of course she did hate the Ng tube but I think it was really helping her. He didn't bring up placing it back in but I sure will ask him because I know it would really help. She was only on 1cc continuously but of course her liver was much sicker at that time so I am wandering how much can she tolerate now? It has been in the back of my mind for a few days now.

Adriana and her dad, I wander if they look alike?



Adriana playing with her blanket, she is still a little yellow but her color is much better



After almost 2 months on omegaven


Before omegaven

Can you tell the difference? Plus her hair has grown as well

Adriana is doing well, she is getting over her ear infection. Of course with help from some antibiotics. She had a Dr appo yesterday, the doctor told me it has not yet cleared but as long as she is comfortable she should be ok. She has been sleeping very well at night, she iwll wake up once thorugh out the night sometimes but iwll go back to sleep. Other times I have to wake up and she thinks it's play time which of course she is very wrong, not at 2 am. Things are still the same with her but of course her BILI is coming down and liver points as well. She has a GI appo tomm and we will see what they say. Adriana has no NG tube or anything right now. They told me to try bottle feeds but of course she does not like the liquid in her mouth and gags. She will acceptthe spoon though, and so I tried giving her baby food. My mom purchased some organic baby food at Safeway, different flavors and told me to try and see if she will eat it. I will tell you it does work better than the bottle. She will taste it and roll it around in her mouth untill eventually she swallows it. I only give her very little not even a spoon full, but it's pretty easy for her to take it. The problem is her GI doctor told me not to give her anything but pregestimil or pedialyte. The thing is I think she just doesn't want a bottle and it is much easier for her to swallow something when it is thick and will go down her throat when she wants, not like th liquid that goes straight down even if she doesnt swallow. She does have GI appo tomm and I think I will let them know what I have been up to. We have become very use to living this life with Adriana, line changes, ostomy care, dressing changes and Iv poles have become another routine in my daily life. I am very confortable with doing Adrianas care and not over welmed at all, I still encounter some problems at times but am able to fix it without having to call pharmacy. As for our equipment provider is great, they are very helpfull when I need it and always deliver things on time. We have our things deliverd from UPS every friday, which is the day I hang Adrianas last bag. Thanksgiving was fun this year, last yer I remember I was pregnant with Adriana and had no worries at all. This year she was home to spend Thanksgiving with us, and she enjoyed the company from the family. She loves the attention and cuddles of course, Adriana has been a very happy baby since she got home from the hospital. She enjoys spending time with me and her dad. She knows when we are at the hospital or when she will be poked which is hurtfull to hear her scream and cry. That has been a part of her life for almost 8 months and I just hate having to put her through those things still. Well as we reach the year 2012, looking back on this year has been a very bumpy ride. Adriana was born March and has gone thought alot since, 5 sugeries thousands of needle sticks, endless blood draws5 or 6 picc lines, 2 broviacs, 3 spinal taps, pre transplant evaluation and of course the best of all Started omegaven. I hope the coming year brings more happiness and less heart aches than this year.