Grandma & Grandpa's visit and a new chin!!

Grandma & Grandpa's visit:

Grandma and Grandpa Kargoll arrived on Wed, March 4th, and we had a very full week together.  They got in late that afternoon and we went out to dinner, the next day we went to Walmart and then on Friday we spent most of the day at the hospital for Faith's 3rd surgery, another hardware adjustment that reset her pins so we could turn for up to another 25mm.  On Saturday, we found the park below around a lake and it was great to get outside for a bit and Faith enjoyed going to the playground and the ducks on the lake.  

On Monday we spent most the day at the hospital for 2 different appointments, one where I got to change her feeding tube button from a 1.2 Minni to a 1.5 Mickey which thankfully finally got rid of the constant pain Faith was having.  And on Tuesday we took Grandma and Grandpa to the airport and said our goodbyes.  I was so lucky to have my in-laws come out and help us out so much.  Rosemary made so many yummy meals for us with lots of left-overs and homemade soups for me for after they left (which I have been enjoying very much thanks!).  Faith got very close to G'ma and G'pa while they we with us and has been asking about them every morning wondering if they are just in the other room still.  Here's a cute picture of them in her cute new pajamas, a gift from their friend Helen:

Faith, Grandpa & Grandma hamming it up:

Jaw Distraction Progress Pictures:  

Here are some pictures of the amazing progress we are seeing so far with Faith's jaw distraction.  It is just amazing to see the new little chin she is beginning to have.

2/17 - day before big JD with Dr. Gordon

2/17 - Right Side

Day 16 - check out that new chin!

2/17 - Left Side

Faith's worse side, missing ramus bone

Day 16

Dr. Gordon promised me copies of her xrays when we are done too, and those are even more amazing than her new little chin.  It is extremely exciting to see how much of an airway she has now!!  Dr. Cotton, the ENT here, will make the decision about whether we can consider decanulation, but I would consider this a huge success if we are able to just cap her trach and she is able to start swallowing food and speaking more clearly.  We used to be so eager to get her trach out, but now that we have gotten comfortable with her trach, it is actually scarier to imagine not having it for future surgeries or if she ever had to be intubated in an emergency.

All for now.  I hope to post again this weekend if I have time, but my parents are arriving Saturday evening so no promises!

Robin