Things have been getting better in our household.Adrianas cold has gone away. She has no more bad cough and is able to sleep all night.She also sleeps in her crib again, and not in our bed.She has been doing good and advancing in everything. She says mom,dad,baby,and some other stuff, she is just ready to talk. She also doesnt want to be treated like a baby anymore, she has her own big attitude. Her feeds have been going good, I actually advanced her to 26 yesterday and she is doing good with it. Not dumping that I can tell so absorbing it, she has already reached 50/50 calories for TPN and feeds. She is doing great and hopefully continue to dvance on her feeds so we can get rid of TPN. It will take time but I am happy where we are right now from where we started we have come a long way. We have clinic this coming wend and hopefully she gains weight. She had stayed the same for 3 weeks and not gain anything so she has to gain weight this time. The other problem as well was she had this really bad cough she just got over and she was also vomiting alot so when she was inpatient the scale showed she had lost 2 oz but its a different scale so not always as accurate as the scale she usually gets weighed on.I would really like Adriana to start getting real food via gtube since of course she wont take it orally. I am going to ask GI about that when we see him and see what he thinks. We will be starting benefiber tonight after I get the total for the 24 hours of her output. I just dont want to do too many changes at once and not know what is what....The other good news is Adriana is starting to drink water, she will accept it when I offer it. She also goes crazy opening her mouth when I have a frozen gogurt in my hands, she tries to take it from me and put it in her mouth. Food she is starting to bring to her mouth as I show her I do so she is mimiking me.

Halloween is coming up and she will be going trick o treating for the first time. She will be a pink panther this year and will most likely go crazy when she sees other kids. Her dad will be takeing her and i will be staying home passing out candy. I will put some new pics of her as well as her with her costume on. She is much bigger and alert than ever as well as looks great and is doing great...

Very long time no post...wow I cant remember when. Adriana is getting over a really bad cough..She is starting to feel much better and my sleep has been getting better of course. She has had this for a little over a week now but its almost gone. She did take a visit to the ER the other day and they started Iv fluids on her since she had been vomiting alot. She did have high pancreas numbers so she was admitted. We were in for 2 nights and were free to go home after that. She still vomits but not as much, not exactly sure why she continues to vomit If I have not messed with her feeds or anything. She is on 23ccs cont, she has gotten up to 25ccs and had been doing fine but with the vomiting I decided to bump her back down for now. Hopefully once this bacteria/cold is over I can get her back up to 25. Lets see how things continue to go with her, She enjoys drinking water..maybe not a whole ton but is drinking and not chocking. Other than that there is nothing new with her.. she hasnt had any line infections or anything else.

Halloween is coming up and she will be a pink panther and will be going trick o treating this year. Adriana came home from the hospital last year on Oct 12 she has officially been home for a year now. that of course means a year woth of line ocnnections for me and dressing changes as well as bag changes. Wow it has been a whole year and Im still not crazy. Never thought it would be possible the day she was discharged I was scared to take her home even tho I had been dying to take her home. She is still here and doing good, she has not had many line infections and is only on her second line which her Gi told me she is doing great. A year ago she could not tolerate any feeds and now she can tolerate 25ccs cont so far. I am sure One day she will be TPN free but I am not sure how soon that will be. She has also been on omegaven for a year as well and is doing great. I am sure omegaven is what has helped her get this far.. I am not sure where she would have been right now if she had never gotten omegaven.....