The latest and greatest of our adventures!

   I am at a very frustrated point in all of this. Ky had a procedure last Monday to try and figure out why she has regressed so much in her swallowing, choking, and eating. Her surgeons said they couldn't find any explanation and decided to double her therapy in hopes that would "fix" the problems she is having. So today I took her to meet with a new therapist today who agreed there are some things that are not right. She mentioned tongue thrust as well as a problem with her adams apple not working correctly. She said the motion of her swallowing is something she has never seen  before which of course adds to my frustration knowing something is wrong and getting that confirmed but no answers as to how to help her. We are continuing therapy twice weekly as well as what I am working on with her at home. She has started eating again but she struggles and it aggravates her reflux when she does. I have a lot of mixed emotions about where we are. Her doctors took the fundoplication off the table but I'm wondering if that is the right decision and a lot of other people are feeling the same. I have such a hard time with my mother instincts versus what the doctors say because they continue to say she is not text book and they continue to hope she is just going to improve but I am not ready to accept that this is going to be our "normal". I want so much more for her and I'm going to keep fighting for her until she is better. I have learned so much through this experience over the last 8 months. I am her voice and advocate and I know with all the love and support we have as well as her amazing disposition we are going to overcome this.

Surgery Time!

   I've been a little behind on updating Ky's blog the last few weeks. Things have been really tough and nerve racking lately. We went in for a swallow study about three weeks ago because she has started to regress quickly. She started with having one bad choking episode and started quickly getting worse from there. She is now having numerous choking episodes daily and she is not able to eat solids anymore when she was up to eating about 8 ounces a day of solids. The swallow study showed her aspirate into her lungs with fluids as well a thickened fluids. We then followed up with a scope with her ENT doctor. The scope showed her reflux was much worse than it had been and the doctor couldn't even see what she needed to see.
   Now, we are scheduled for surgery Monday morning to have both of have both of her suregons take a further look at her esophagus and make sure her first surgery took and it's not her cleft repair that's causing the episodes to start again. Right now once again the doctors are baffled at why in the span of a month she went from making progress to being right back where we started. The part I feel the most struggle with is not having any answers and now they are talking about a fifth surgery after this next one to do a fundoplication. Which would make it so she can't throw up and her reflux would not be able to come back up. it is a pretty signifigant surgery and I am feeling really anxious about it. The problem with that is reflux doesn't cause choking so they still have to figure out not only what's causing it but also how to safely fix it. If they have to do that next surgery they will have to call in a pediatric surgeon to do the procedure and so we are not sure what to expect as far as stay and recovery time.
   We are praying for her safe and quick recovery and that she is finally able to progress. She is an amazing girl and growing so fast. She is still small for her age but she is sitting so well and almost crawling. She is so close to crawling but she has figured out ways to get round in the meantime. She is also the happiest baby I have ever seen. She is so smiley and loves to "talk" to people. I can't thank everyone enough for their love and support and constant prayers. It means so much to our family and I believe that's what has gotten us through this ordeal. 
   We will be sure to keep everyone updated on her progress as well as some information as we get some anwsers.