9TH Surgery has been scheduled

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.

Since our last blog Braylee has had a sleep study.  We were hoping with this last surgery that her nasal passage would have been open enough that we could reduce the pressure that she is on on her CPAP. When you are doing a sleep study there is only a certain window of time that they hook you up.  So they didn't have us come in until 8:30 pm.  and then it takes close to an hour/hour and a half to get hooked up.  So it ended up being almost 10 p.m. by the time Braylee got to sleep, which is two and a half hours past her bedtime.  So her breathing was horrible from the get go and Mom didn't get much sleep. So as you can imagine the results didn't sway the way we wanted.   Braylee is on a nasal cpap so it only covers her nose and not her mouth.  She is a mouth breather so yes she would benefit from having a full face mask but when she gets sick and throws up she does not wake up.  So I have been completely against a full face mask because she would asphyxiate on her own vomit if she had one.   According to the sleep study results she is to stay on her current pressure on the nasal cpap but if we were to move her to a full mask then we would be able to reduce her pressure by quite a bit but that won't be happening anytime soon so we'll just have to keep chugging along with the high pressure.
























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.