Here is the update as promised from Adrianas GI appt, it all went well. She did not gain any weight but loose maybe .5 or about the same from last month I was told.She is now in the 75% for height and weight but was in the 92 so she is getting proportional again but still growing in length. As for any changes on her TPN, there was nothing it will continue to be the same and omegaven the same. There will be some changes on some meds we will be adding 2 capsules of imoduim to her feeds which help with controlling diarrhea.The purpose is to slow the transit down to give her intestines more time for absorption well that is the idea lets just hope it does work that way. We will also start to switch out her pregestimil formula with pediasure, I will start adding 1 oz of pediasure into her 20 hrs of pregestimil feeds and see how things go with that. If all goes well and dont see any major changes we will keep going untill eventually we have gotten rid of her pregestimil and only on pediasure. That is her GOAL this year to be off pregestimil. Pregestimil only has 22 cal per oz and pediasure has 30 cal per oz so it will help her get off TPN just that much faster if tolerated. If all works out and she is on pediasure then we may start adding some food to her formula and see how that works. We cannot now since her formula is predigested so it might mess everything up instead of help. I guess we will see how things continue to go and cross our fingers that it all works out for the best. Adriana is getting big and things are getting better for her. As for potty training will be very soon but not sure quite yet, her dad thinks shes too small but if I let him tell me when he will continue to tell me shes to small I guess she will always be the baby no matter what.

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.

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.

Adriana has been doing good, she did have her GI appt not so long ago. Her next one will not be untill March 2 days after her 2nd birthday. Adriana is doing good, she has had no line infections lately and she has been able to stay out of the hospital. Her liver is doing good and healthy no problem with that, her weight has been a little flat for a few months now. They decided to go up on her dextrose just a little, that should help her gain weight but at a slow pace as they want her to. Adriana is not yet walking by herself but does stand of course holding things and cruises while holding on to something. She will walk through the house with her walker but not yet so confident to let go and do it all by herself. In no time she will be walking, she is a very happy baby. She drinks water which she enjoys doing and licking lolly pops which she also enjoys doing. She does not yet eat but does try certain foods and tastes them as well. She will only accept water, anything else she iwll not drink. She enjoys exploreing arount the house and loooking for something to get into. She has learned to open all drawers and at time I find myself picking up clothes around the house that she has decided to pull out. She also loves to meet new people and all the attention she gets. She loves to say Mio for everything, meaning it is all hers. She does share her toys and loves to play with other children.

Adriana is still at 25cc a hour for 20 hours right not but her GI decided to start her on Flagyl. Its suppose to treat BO if she were to trully have any. She has never showed any sign that she may have it but her Gi feels that that might be the reason why we have not been able to advance her feeds. Adrianas last day on Flagyl will be today and then tomm I will check her output and then advance to 26 and see how she does. Cross your fingers and hopefully we go up from there, we have been lingering at 25 for a few months now and I would love to see a new number on our machine. Adriana is doing well other than that, she has not had any issues with anything. I ahve been treating some angry granulation tissue under her gt tube but it has gotten better and as long as being treated it seems to stay under control which is always good. Besides all of her complications Adriana loves life, she enjoys bath time with her Dora mat and ridding in the car in her ar seat. She will always point out the window meaning she wants out or say beep beep meaning she wants to ride in the car. If she seems me or her dad getting ready she gets excited because she thinks we are headed out the door. I will add pics of Adriana as soon As I figure out how to get it working again.

new years

We had a very good Christmas this year, Adriana loved it and watching her was priceless. She enjoyed playing with all the kids and the comotion that was going on. She did not go to bed untill 2:30 am. She enjoyed her gifts and toys of course, she had a favorite one. Her drums, she enjoys banging on things. Adriana is crawling like crazy, she crawls very fast, she also pulls herself up to standing. She enjoys to turn off and on the TV and changing the channel, she also found a new hobby which is opening and closing the drawers. She doesnt yet pull anything out just opens and closes. She can also walk independently with her walker, she walks with it. She will be walking soon and then we will have trouble. lol..... Adriana carries her backpack with her milk which she hates wearing at times, she screams and complains when I am going to put it on her. She doesnt mind other times, she is only connected 20 hours on her feeds so has 4 hours free with nothing on her back. She runs her TPN for 12 hours so only at night when she sleeps. Life is getting easier with Adriana and of course I have this short gut thing down so I know what to do in case of any emergency. Adriana is healthy well for being a short gut kid of course she is medically fragile. I enjoy every moment with her but at times she does drive me crazy. She is a very sweet little girl who loves to be loved and show love as well. She enjoys sleeping on daddies tummy and being hugged and kissed at all times. She is very undependent and enjoys doing many things for her self with no help. She laughs and giggles for no reason at times but it brightens up your day if you feel bad. She has no idea what is going on with her but at the same time she is enjoying her life and nothing puts her down. She may be small but filled with life, she loves bath time and enjoys splashing in the water untill her skin gets prunny and splashes half the water out of the tub. I try to live our life normal but at times its just a little hard, especially when she gets infections or gets sick for any reason. Everyone has a purpose in life and I am not sure what Adrianas is but I enjoy every moment with her. She can turn my frown upside down very quickly by just making funny faces at me or smiling. Adrianas 2nd birthday is coming up, March 6th, i cant believe it. 2 years, of course the first year was the hardest hopefully the rest arent as hard. I will post pics