We are out of here! Now to keep her comfortable for the drive home. Her eyes are really red, starting to bruise around her eyes and sensitive to light. The redness will go away in the next couple of days and hopefully the dilation will subside here soon.
Wednesday, May 22, 2019
Tuesday, May 21, 2019
Braylee's 9th surgery is scheduled to start tomorrow at 10:50 a.m. They will be operating on both eyes, strengthening/tightening her muscle.
Today we got to go have fun at the aquarium. She originally wanted to go to the zoo but it was down pouring rain so she got the next best thing, getting to see sharks! She got her favorite dinner of salad and spaghetti. What more could a girl ask for? 😉
As usual we will do our best to keep the blog updated tomorrow. Thanks everyone for the thoughts and prayers!!
Tuesday, April 16, 2019
Well yep you have read that right. We have scheduled her 9th surgery for May 22, 2019. This surgery will be on her muscle in her eye correcting her strabismus. Strabismus is when the eyes tend to drift up and out anytime she looks down, up, or to the side and more recently it has started to drift when she is looking straight. This is because the muscle is not tight, it is Apert syndrome related. So they will go in under the eye lid, make a small slit in the clear covering of the white part of the eyeball and tighten up that muscle so that she can hopefully keep her eyes straight. This is a minor surgery considering every other surgery she has done. This will also help her academically as well so she doesn't have to strain to keep her eyes straight to read and everything. There is only an 80% success rate with this surgery and the other 20% is most likely needing another surgery or two to fix it. Her doctor said that with Apert the chances are higher that she will need another surgery.
The summer of 2020 is going to be a doozy too though and the plan as of right now is to have her mid-face advancement. This is the surgery that every parent dreads from the get go. It is such a MASSIVE surgery that will change Braylee's appearance and she will have to wear a device called the RED (rapid equilibrium dialysis). I will go more into this surgery when it gets close to time but you can look it up if you're interested. It gives me heart palpations just thinking about it being in our near future so we will just leave it there for now.
She has also been having more and more headaches. She had a CT scan back in February and it pretty much showed that nothing has changed since she had her last one 2 years ago. We've been in contact with her neurosurgeon about everything and we came to the conclusion that it might be her eyes needing glasses or something. Well at her Ophthalmology appointment her optic nerves look great and she still has no need for glasses. He didn't think that her strabismus would cause her headaches so we are still looking into the cause of those. Part of me is secretly hoping he was wrong and her headaches are from the strabismus.
It has been a busy, busy fall/winter. Between check-ups in Salt Lake City and school it seems we have been going non-stop. She has also got a little break in her elbow back October. It healed pretty quickly. And then she fell down some stairs and broke her pinky in February. She was in a splint for 6 weeks. Always keeping us on our toes.
Time is sure flying and we can't believe she's almost done with Kindergarten. She absolutely loves Kindergarten. Her writing is getting so much better and she is reading! She loves to walk around the house and sound out everything she sees. Everyone is so proud of her and her determination. She enjoyed riding her snowmobile around all winter and is pretty sad that the snow is melting and they can no longer do it. She has been enjoying being in Girl Scouts. She is super excited for summer to come so that we can go camping and fishing. And we plan on doing plenty of that this summer.
Another surgery isn't quite what we were expecting to start the summer off with but just like I told her doctor we will do whatever is best for her and to help her succeed in life and be the best she can be. Once we start to get in the groove of things Apert Syndrome will knock us back down into reality. Apert Syndrome is a part of Braylee but that isn't who she is and she proves that to everyone everyday. She is a smart, bubbly, funny, and determined little girl that won't let it get her down. Teaching us more and more each day.
Friday, September 21, 2018
We're out of here!! It's a personal record.. 3 1/2 hours after being admitted for surgery we are heading home! She had a really loose tooth going into surgery so they ended up pulling I out after they sedated her. She came out with her tooth and a dollar in a specimen jar. Tooth fairy gets to come twice today! She is so excited to not have that expander in anymore and she has no pain meds on board and is feeling great! She's our hero!!