It has been a very long time, about 3 months since our last post. Many things have happened since then of course, nothing but good things. Adriana is walking, she started with steps at the end of April and is walking now.She has been for a while now, she says many words and can count to 3 in both english and spanish. I cant get her to 4 quite yet, she says many words and understands basically everything. She is on tpn/omegaven 10 hrs a day now and her feeds are running for 20 hrs a day at 31ml/hr. She is allow to have a 4 hours brake. She is doing fairly well with her feeds and advancing and tolerating that as well. Our goal is 55ml/hr to get her off TPN. We are getting there, slowly but surely. Our GI is very happy with Adriana and how well she is doing, transplant is not even in the plan, nor no where near for right now. our last visit we went down on her TPN as she was gaining too much weight, which is great it means something is working right??We will just continue to keep advancing her feeds as she tolerates it. She gets flagyl for 3 weeks and 1 week of, to help with the bacteria overgrowth, which is helping with her feeds and advancing. I am very proud of Adriana and how far she has come, she is 2 now and a great baby. Of course she enjoys to push my buttons now and then but its ok, its all worth it. She enjoys listening to music very loud and dancing,she has some great dance moves.

All is well here at our house, things are going good and moving fast. Adriana has realized she can walk and has been walking all through the house. She is almost a pro at it, still falls at times but just gets back up and continues. Her feeds have been going really well, she is running at 29ml /hr for 20 hour with a 4 hours brake off at night. She has been putting out very little well it seems as she is absorbing all going in and just putting out waste. Which is great, means her GI tract is working well. Adriana had a weigh check a few days ago and she gained almost 1 pd in 2 weeks which is awesome. She now weighs 24pd 12 oz, this is the first time she has reached 24 pds, iot took her a while to get here. Other than that nothing hecktic hope all stays the same, hopefully she continues to stay healthy with no problems and doing well.

Many things have happened since our last post, lets start with adriana walking.she started taking steps well basically running.she thought it was a game and would clap,she was scared of the falling part at first but as time went by she is ok with it now.it is harder for her to walk when she has her feeds going and is carrying her backpack it is all a matter of her becoming confortable wth it on her back and getting balance.she walks more when she has a brake off her feeds,she will alk around the house,doesnt take only a few steps but actually walks.she is also saying many more words than before and understands everything you tell her,its just a matter of if she wants to do it or not.she is doing fairly well and catching up of course still behind.

as for her health she is good,she did start her 2 week cycle of flagyl and we were able to advance her feeds to 27,that is where she is right now.i will try to advance her again while she is on her 2 eek course and see what happens,hopefully she can handle 28 fingers crossed.

Adriana has been fine lately nothing new with her, she did start back on er 2 week cycle of Flagyl. Hoping to increase her food, she has been on 26ml/hour now for some time. After her 2 week course of Flagyl I was able to advance her to 27 and she did put out 100ml more than they want to see but I am going to give her a few days and recheck output to see if comes down. Other than that she will have a 2 week break from flagyl and back on, I really think this Flagyl will help advance her feeds, well hope so. I have not had a crazy time with her ostomy and leaky bags, everything has gone good since I switched her bags to a different one, but now the gtube is driving us crazy. It has been leaking too much and she scratches it which makes it bleed and she gets very pink skin around the gtube site. I have been putting a barrier on the skin which is helping with the redness but thats it. Adriana just tuggs on it and its very hard to keep her hands off. We did have a GI appt this tuesday. All went well, she did start to gain weight again and we will just keep doing the same thing and try to advance her feeds. May I add she is takeing much more orally, she drinks much more water now and does not gag at all. She will put food in her mouth and spit it out alone without gagging. She like sucking on lolipops and candy oh and choloclate, all the no no's for her. She is a happy 2 year old.

Adriana's birthday was March 6, she was inpatient at the hospital but had a great birthday. She turned 2 and was loving the shiny candles on her cake. She even blew them out with a little help from dad of course. She was able to keep her line and come home on the 7th with a 10 day course of penicillin, she was on Vanco but her bug was not as sensible to it as penicillin. She had lactabacillus which we are still not sure when it came from. As of now she just finished her antibiotics 2 days ago which mean no more waking up in the middle of the night to run them. It feels nice to just wake up once to empty ostomy bag and change diaper, my usual. They had told us that if Adriana did not get a neg she would need to get the line pulled because as it seemed they were not able to clear her line. That same day she had a neg and it stayed Neg for 5 days thank god, meaning most likely her line cleared up. We were glad we were able to keep her line and life goes on. Nothing new with her as of right now, she is doing a little more cruising through the house and is getting ready to walk , but wont yet let go. She will stand all by herself though and is starting to say more works and know where her eyes and ears and mouth is. She is advancing as she should be but of course behind. Adriana is a happy 2 year old girl that loves life and holds no grudges against anyone. She is very kind and loveing and at times just wants to cuddle next to you than play with her toys or explore the house. I am proud to say I am a her mother, she is not easy to care for and requires much time but at the end it is all worth while to know she is here with me and of course enjoying every minute she has. Pics will be posted soon

lactabacillus (line infection)

Since our last post Adriana was doing fine, we did get admitted, she has a line infection... lactabacillus ugh meaning she has some what of a leaky gut since it is good bacteria that is in the small bowel. They have yet to get a negative culture, tuesdays is negative so far. If it stays neg she can keep her line but if it turns positive her line has to go. Its a waiting game right now, this line has been in since 09 please cross your fingers so she can keep her line. I will keep you updated as the days go by. By the way sunday is her 2nd birthday and she will be inpatient, why cant life just be fair?????

Since our last post Adriana started to run a fever so we had to take her in, we were out in 2 days she tested positive for influenza A. It w=felt like a longer stay with Adriana running high fevers all during out stay, the only thing that kept her comfortable was Tylenol and ibuprofen around the clock. She came home with both of those and some tamiflu for 5 days. After a week she felt better and got back to normal, she has been doing fine since then. I was not able to play with her feeds since she was putting out more when she was sick with the flu, as takeing meds would not have been the time to increase feeds. I increased her feeds last night to 26 and hopefully she will tolerate it, fingers crossed. It has been a while now that she has just been at 25ml/ hour for 20 hours now. I think its time to keep moving on up but of course its not up to me. That is the only change, she has been gaining weight but they had also bumped her dextrose at our last visit since her weight was flat. Adriana is my little miracle, she has something new to chow me daily and loves to talk, says everything you say and more. She does not walk but crawls like a crazy person as well as cruise. She will soon let go and just take off, then nothing will hold her back and we will have problems. The good thing is she only runs her tpn/lipids for 12 hours so during the night only and comes off in the AM.