Oh man has it been awhile since I have updated the blog. Sorry about that. One of the reasons I haven't updated is we really didn't know what the next step would be. Braylee's next surgery will be the mid-face advancement. (Lefort III). Part of Apert Syndrome is that her mid-face (meaning the space below her eyebrows and down to her upper jaw) don't grow as fast as the rest of her face, causing it to be really recessed. To fix this it requires a major surgery, the surgery that we as parents dread from the moment we are told of everything that they will have to endure when born with Apert. It will completely change her appearance but it will also open up her airway that she so desperately needs. Hopefully meaning she will no longer need her CPAP at night. So with this being such a massive surgery we weren't confident in her plastic surgeon who hasn't performed very many. So we have been "shopping" for another surgeon that we are comfortable with. We found one surgeon that is very skilled in the mid-face and everything Apert but there was always something that didn't feel right about it. So we consulted another surgeon just last week and I can't express enough how much we love him. He talked non-stop for 45 minutes about everything he would recommend for her moving forward and even gave us names of some other doctors to look into if we wanted. He said over and over you need to pick the doctor you trust and not have the doctor pick you. So that was a huge sign that he actually cares for his patients and isn't just looking at the dollar signs he could be making off of this patient. He answered all of our questions without us having to ask them. After the consult with him, we walked away with an actual plan moving forward and a huge sigh of relief that we found someone so knowledgeable in all things Apert and that we trust with her life. She will be having the mid-face advancement early summer 2021. We did another CT scan so that her new surgeon could print out a 3D model of her skull so he can better plan her surgery. She of course just hopped right up on the table and rocked the whole thing. He plans on doing a surgery to move her forehead forward around a year after the mid-face and then a jaw surgery when she is around 14-15 years old. So 3 very big surgeries still to come but we're so happy we have a plan.
We saw her ophthalmologist a couple weeks ago and she has a slight astigmatism and will need glasses, but her doctor said it isn't emergent to get them as of right now. Since kids with Apert are really hard to find glasses that fit them he is wanting to wait until after her mid-face to get her glasses, if we can.
Braylee is in the 2nd grade now and she loves it. We were lucky enough that our schools went back to in person full time. She says her new teacher is so nice. She has some old friends in her class along with making some new ones. We are so grateful for our community. They have always been so great and accepting of Braylee and her differences. Her school will do anything to help and accommodate her.
Her new favorite things are dinosaurs, to ride her bike, and she loves to pretend like she's a DJ. She has so many dinosaurs toys now and we had to buy her a bunch of dinosaur gaiters for her to wear to school. She finally gained the confidence this summer to ride without her training wheels and she could not be happier with herself. She rides it all the time now. She is so funny and loves to make people laugh. She is really coming into her own and her personality is shining through.
So once the craziness of 2020 is over we will start a whole new craziness to 2021 but it will all be for the better.