Adriana has been TPN omegaven free now for about 5 month now, she got off a little before her 3rd birthday.She has continued to gain weight in these last months and has been able to stay healthy as well.The last plan as we saw her GI doctor was to play with her night feeds.He would like her to come off her night feeds and just do day feeds.Adriana only runs her night feeds for 7 hours right now on cont feeds but as her boluses increase the night rate drops.She started her boluses at 125ml and is now at 165ml the goal for her bolus is 220ml and 5 times a day followed by 30ml of pedialyte and before and after night feeds.She also gets 400ml of hydration fluids thru central line, looks like we have left the line for last.We will see her GI doctor the 1st of Aug so we will see what his thinking is now I guess after he sees where Adriana is at her boluses.Adriana is talking alot and understands everything you tell her.As she is also eating more not a ton but some calories.She is into Starbucks frappujcinos and peanuts that's her things right now.If she spots a Starbucks in the street she yells frappuchino, one crazy little girl.Shae jut finished preschool and summer school her first year she did very well, she enjoyed taking the bus to and from school and playing with her classmates.She will be doing her second year of preschool next year and she will be going up a level as well.She is too advanced for the level they placed her in this year.Thats great news as well, all and all life has been treating her failry well so far.I cant complain

update on Adriana her feeds/hydration fluids

Adriana has been off TPN now for about a month,she has not lost any weight while being off but who knowhs if she has gained any.She has outgrown alot of her clothes but lets see how much she has gained.Hopeing she has since she did get a cold 2 weeks ago and she did put out alot from her ostomy bag,I switched her feeds to half pediasure and have pedialyte.She has her GI appt on the 17th and we will see what new changes they would like to make.Adriana no longer wears her backpack any more,she would carry her feeds before as she would run her feeds cont she now gets 5 boluses in the day of 125ml and runs cont at night from 10pm to 8am at 62 ml/hr.She also runs her hydration fluids at night from 10pm to 8 am along with her night feeds.She has yet to eat alot but does try new foods and swallows some just not alot yet as she is probably still not hungry as she eats around the clock.Adriana gets to capsules of immodium and a scoop of fiber in her formula of pediasure.I will update after we see her Gi hopefully we have a new plan as to her hydration fluids or something but some change.

Adriana had a GI appt today and gained over 2 pds,she gained 3 times what they wanted her to.She is coming off TPN. Now and will only be getting hydration fluids daily so she doesn't get dehydrated.She will also get omegaven for a little longer to help her ALT and AST numbers come down.Her GI is not sure if it will help,she will get her blood drawn and see if any change then she will come off of that.She is at 54ml on her feeds and full feeds for her is 60 so she is right around the corner from that.She is doing very good so we will see how she continues to do and her weight continued.She will also start preschool the day after her birthday, she is almost 3 very hard to believe.

It has been so long from the last time I posted not even sure what the last post was about :) life is not the easiest for us but things have gotten simpler.Not too long ago Adriana had her broviac replaced because she outgrew the line
She had it since she was 7 months and it was a baby line, spaghetti size untilled now.She has a bigger one on the other side of her chest now.All went well and she did great, of course it caught us all by surprise.Adriana continues to gain weight at a good rate monthly andhl her GI continues to come down on her TPN.She continues to increase in formula and not dump at All.She is now completely off of pregestimil and on full strenght pediasure.She is now at 43 MP/ grand runs for 20 hrs a day.Her goal for full feeds and no TPN is 60, we are close and getting there slowly.Her GI feels she absorbs about 70-80% of what goes in and that she will do just fine without transplant.As she is about 2/3rds of the way there with her gtube feeds.Adriana talks alot and is a very happy social little girl.She is now haveing her IEP meeting ans she reaches her 3rd birthday is March.That will tell us whether she needs help in certain areas and what would be best for her so she will be prepared for kindergarden.She has grown up so fast and trully is amazing in all ways, she has beat all odds and continues to thrive.She is also now eating little bites of certain foods she wants.She loves ice cream cones, chocolate, and coke all the no Nos for a short gut kid but she does tastes them not too much, she will tell me she wants to eat and will pick at her food and eat some.

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