New Pictures

 Happy girl trying out her new booster chair

 Waiting for surgery

 Trying to escape beofre surgery 12/21/11

 Playing guitar with Papa

 My Babies on Christmas morning

 Big Girl!!!!

Good News!!!!!!

This week has been a little better. She gained 2 ounces this week since getting on her new feed rate. We are super excited that she has learned to roll from tummy to back and back to tummy. She is also doing great with her sitting up and having great control of her muscles. She is a mover and getting into everything and I couldn't be more excited to see how far she has come. Pictures will follow shortly.

Today we went to see Ky's GI. He had some good and bad news. She went from being in the 41st percentile down to the 20th so we have to try and up her calorie intake through her tube since we have had little to no success with oral feeds. It's a tough reality that we still have a long road ahead. We were able to get her off 2 of her medications and replace them with just one which is positive. She has seemed to be having a lot of discomfort and pain lately so they are trying to figure out how to help her and get some answers as to what is wrong. This has been a tough few weeks with her but not near as bad as we have been through.
Our goal this month is to get her calorie intake up without the choking episodes. It has been a little discouraging this month but I just pray for some relief for her and progress.