I am trying to keep up with the blog but its harder as Adriana is growing well 2, she is all over the house and gets into things she shouldn't be. She is doing great so far, nothing new with her. She will be getting a assessment with speech therapy to see if she qualifies for those services. As for OT i have finally found a organization that is free of charge who does it in home. There is a waiting list tho so she is currently on it, she is still progressing in feeding tho, shes very interested and I cannot eat anything in front of her without her wanting it as well. The only thing she may not eat is yogurt and no one eats that in front of her. She does swallow some of the food after she kinda chokes on it, she does not know how to chew yet but has gotten the swallowing part down. She drinks water and of course loves coke, she only gets little tastes tho mostly water is all she gets and of course some fresh drinks as well. On the other hand she l0ves music, very loud and dances to it, she also sings it. She does know many songs she hears over and over and knows when to put the words in, other than that she just lip sinks.I believe we will be seeing her GI this coming week and lets see how much she weighs. I hope she has gained some weigh in this past month as they did drop her dextrose from her TPN from 14 to 11.5 so lets see how that goes. As for everything else I am also sure she is taller, thinking of questions to ask her GI. She has started back on her FLagyl this week and will be on it for 3 weeks hopefully this will help with increasing her gtube feeds. Adriana is at 31ml/hr, I tried advancing to 32 but I saw the big difference and had to bump her back down the same day. Maybe we will have better luck next time. As I am seeing this is a very slow process even tho I wish it was something fast. I guess I just have to continue to be patient and hope things ease on and she continues to be healthy.I will update after we see our GI and get some feedback from him as to how he feels things are going...

New Year..in the snow

our weekend up north

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.