Wednesday, September 16, 2020

Crazy 2020 and What's to Come!


 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.


                            




Wednesday, May 22, 2019

Discharged 5-22-19

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.

Out of surgery

Braylee is out of surgery and is doing great! We should be able to head home to Wyoming today as long as she keeps recovering well. Thank you everyone for thoughts and prayers!!

In surgery 5-22-19

Braylee is back in the operating room. They anticipate it to take around 2 hours. Please pray/think happy thoughts for our baby girl and her doctors!!

Tuesday, May 21, 2019

9th surgery tomorrow 5-22-19

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

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.






Friday, September 21, 2018

Discharged 9-21-18

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!!