Faith's progress, Terry's visit and Grandma & Grandpa's arrival

Faith has been doing so great through this jaw distraction surgery.  She has not had much discomfort at all and is only really unhappy when I am turning the pins, but otherwise she has completely shocked me by just how easily she is coping with the whole thing.  Aunt Terry came to visit last week, arriving on Wednesday night and leaving on Sunday. We had such a nice time together and Faith bonded with her again so easily.  

Aunt Terry and Faith

Testing Aunt Terry to see if she really has to

clean up her new markers

Darling hug goodbye - she will miss you tons

The jaw distraction itself is making some noticeable progress now.  Today is roughly day 12 of turning Faith's pins (I say roughly because I'm not counting a couple of turns when the screws had pulled out of the front of her jaw).  I thought the process was a bit more cut and dry than it is -- I thought that because the distractor rods are 30mm and we are turning 2mm a day that we would be turning for 15 days, but it turns out that it's not cut and dry.  When the pins were adjusted last week they were backed up a bit and that can be done multiple times, so I guess it means we'll just have to wait and see when the turning will be done.  In any case, you can see that Faith's lower front teeth are now roughly directly below her upper front teeth when they used to be  a good 1-2 centimeters behind her upper teeth.  Dr. Gordon is planning to continue distracting for awhile more if he can and get as much new bone growth as possible.  Faith will be going back under anesthesia tomorrow for another hardware adjustment and I guess he will decide how to adjust the pins to see how much more we can turn them before we are done.  I got to see a new xray on Tuesday too, show a good centimeter of airway that was previously blocked by her tongue so that was the best news and exactly the goal of this surgery.

One of the downsides to the progress so far is that her front teeth are getting completely rearranged in a bad way, they were actually fairly straight but a little crowded before the surgery, but now they are just a big mess, new gaps between some teeth and piled on top of each other in other places.  I'm hopeful that the hardware adjustment tomorrow will help since it should not be pulling on the front two teeth as much.  But, despite everything, Faith just acts like nothing is hurting much at all.  In fact, she has actually been much unhappier about an ongoing issue with her feeding tube button which has been bothering her occasionally for many months now and unfortunately has gotten much worse while we've been here.  We don't know what is causing that issue but are going to see a pediatric  surgeon while we are out here to see if they can figure it out (that appointment is on Monday).  

Grandma and Grandpa also arrived this week on Wednesday and will be here through next Tuesday.  Faith is enjoying them very much too.  I'll post some pics of their visit soon, but for now, here's a few of Faith opening a special present from Grandma and Grandpa's good friend Jeanette -- she just loves it!!

TA DA!!

Will definitely do another update over the weekend regarding the latest surgery, but I'm expecting it to be another fairly simple and straight forward surgery and us being home fairly quickly after it's all done.

Best wishes to all!

Robin