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.