We are in Elko, Nevada this week to spend time with daddy. This is Ky's first vacation since I was still pregnant when we went to Texas. I was very nervous about bringing her on vacation but she seems to be handling it well. She is trying with all her might to sit up the last couple days which for me is bitter sweet it shows how far she has come but also that she is growing up and I want her a baby for as long as possible. She had therapy before we left and her therapist said she still can't eat orally because she has forgotten how to use her tongue functionally. We are going to continue with her exercises daily and weekly visits to her therapist and will hopefully have her trying to eat again in the next few weeks atleast once a day.
My goal for this month is to break even the smallest amount of dependence on her 24 hour drip. Her disposition continues to improve and she is a very happy baby with lots of silly expressions. Another quirk of her's is holding on to her tubing she thinks it's fun to tug on it. Silly girl!  

Ky has had a great week. She is growing well and adjusting to her feeding tube. She weighed 12 pounds 3.5 ounces and got good feedback from her GI and home care nurse. We are going on our first vacation with her tomorrow and I'm a little nervous but she continues to do well. She turned 3 months old on Halloween and is really starting to come into her own personality.

What an amazing journey the last 3 months have been. We are now on a very positive path with Ky. She had 2 surgeries this month both of which were sudden and unexpected. She has numerous tests, procedures, and different medications to try and help her with her choking and trouble with breathing. Nothing we tried worked but we can honestly say we tried EVERYTHING. She has a condition called Laryngomalacia. She went in on September 29th to get a Frenulectomy (her tongue clipped) because she was tongue tied. They were hoping by her being maxed out on all reflux medications and releasing her tongue that her "episodes" of choking and aspirating into her lungs and struggling with feedings and breathing would correct themselves. We kept being told this is normal she will out grow this. Needless to say she did not and I noticed her condition getting a lot worse the beginning of October with a lot of pushing on my part they saw her again. She was a stage 2 when she was originally scoped in 13 days she had gone to a stage 3/4 which is when they decided to do surgery right away. She went in the following Monday for what was supposed to be a quick surgery and she was supposed to be released the following day well she did not do well and could not handle feeds so she was put on a NG tube to be fed. She handled that for 4 days but did not show signs of improving she got to the point where she quit swallowing all together including her own secretions. She was taken off the NG tube to see if she could feed on her own which she could not. The decision was then made to go ahead with the next surgery to put in a G tube. She is on a continuous 24 hour feed right now until she can relearn to swallow and feed. She spent 10 days in the hospital this time. This was her 3rd hospitalization. We are finally confident she is going to do much better from here and know that this was the right decision. Feeding her through a tube was scary at first but I am getting much more comfortable and as of Monday when she saw he GI she was 12 pounds 1 ounce. A huge step for her since loosing over a pound in a week in the hospital.We are so blessed God has taken care of our little girl and we have switched some of her doctors and she has a great team of specialist taking care of her. She is a much happier baby now and I am thrilled to see her smile and not be in pain all the time anymore.