Surgery #10 underway

They took her back about 7:35. They anticipate it to take about 6 hours. Please pray for our baby girl and her doctors. They are doing more of a cranial vault advancement than an FOA hoping this will lead to less surgeries in her future  She was so brave going back. 

Surgery #10 tomorrow 10/21/21

Surgery#10 is tomorrow 10/21/21. Start time is scheduled for 8 a.m.  They will be doing a frontal orbital advancement (bringing her forehead forward) and filling in holes on her skull (pictured below). These need to be filled in so the halo device that she needs for her future mid-face surgery has a place to put the screws to hold in place. Still a very risky surgery since they will have to cut parts of her skull and put it back together like a puzzle with plates and screws.

 Luckily they won't shave her head this time, I just have to part her hair on her old cranial scar and braid it to keep her hair out of the way. They will shave along the scar.  We've made it down to Orem,UT since we changed surgeons she will be having surgery at Timpanogos Regional Hospital. She rocked her blood work this afternoon and no COVID test is needed so she's ready to rock and roll in the morning!! I'll update as I can. Keep those prayers and happy thoughts coming!! 

Unexpected hospital stay 8/10/2021

Well this girl has sure put us through the ringer the last 24 hours. 

I'll start from the beginning of the incident. So on Saturday the 7th while we were out camping, Braylee went on a small bike ride with her sister Maddee and friends and ended up wrecking coming down a hill. She has a pretty good abrasion on her side, her knee and elbow are all banged up, and she said her head hurt but otherwise visually she looked ok. We get her back to the camper and get her cleaned up and she's complaining of everything hurting along with her head. Her helmet only had a little scratch on it so we decided to give her some meds and monitor her for any other signs of a head injury.  She slowly started to get better that day only being sore.  On Sunday morning she wakes up feeling great and ready to play. She went tubing and had a blast. Monday she did great too. 

On Tuesday she woke up with a black eye and I had asked her if she hit it on something and she said no. A couple hours go by and it finally dawns on me that it was from her bike wreck. We look at it closer and she has a dark yellow bruise across her right side of her forehead and down her nose. This sets off alarms for us so I ended up taking her to her pediatrician in Jackson and he sends us for a CT of her head.

 We decide to waste some time around town until the results come in. We get some ice cream and then right as I ordered her dinner at Wendy's her pediatrician calls and says that she has a small skull fracture above her right eyebrow and there are some air bubbles under her skull that are a little alarming so he tells us to head to Salt Lake City and to have her be NPO (nothing by mouth) incase they need to take her into surgery. She was not a happy girl about not getting to eat. So we drive back to Pinedale to pick up Jeff and then head to SLC. We finally arrived here at 11pm last night. 

They get us right back  and then it was a hurry up and wait on neurosurgery. Finally around 1 a.m. we hear from neurosurgery that she doesn't need surgery but she needs to be admitted and monitored the rest of the night. We finally get moved to a room at 3 a.m, and she's asleep finally by 3:15..... talk about a very long night. She slept most of the morning only waking up to talk to the doctors making rounds. It was determined that the air bubbles under and on top of her skull will go away fairly quickly, her skull fracture will heal fast being as it's not displaced and they have diagnosed her with a mild TBI (traumatic brain injury) aka a mild concussion. She had been discharged from the hospital!!! 

She will be on concussion protocol for most likely the next 3 months but we will check in with the concussion rehab specialist in 4-6 weeks and go from there. We aren't sure if her surgery in October is still a go but her plastic surgeon has been updated on everything and will be reviewing her scans and get in contact with us. We are so very glad she had her helmet on, the outcome would have been WAY worse if she didn't!! We're so ready to get home and we just hope and pray that she continues to improve and doesn't decline. Always keeping us on our toes!! 

Happy 9th Birthday and surgery #10 scheduled

Nine years old, I can't believe it has gone this fast! She is seriously one of the funniest kids you'll ever meet, makes us laugh every day.  Still hard to believe that this journey started 9 years ago.  It has been one of the most tiring, emotional, frustrating, and yet amazing journeys we've ever had.  But totally worth it to see her thrive and live life to the fullest! She still loves dinosaurs, Elsa, fishing, snowmobiling, and everything about her tablet.  

This past year she has started participating in Special Olympics.  She did swimming in the spring and her swimming has improved so much! She had a virtual state swim meet back in May and she rocked it!  We just found out that she ended up getting a fourth place,2 third place, and a second place in all of her events!!  We are just so proud!  She had so much fun and can't wait to pick it back up.  This summer she has started golfing and cycling.  She is a little obsessed with golf at the moment.  Nothing slows her down and even though she can't do things the way other kids do, she still figures it out and has a blast.  

On to the not so fun stuff.  Braylee will be having her 10th surgery on October 21, 2021.  She will be having a frontal orbital advancement (FOA) and filling in the holes in her skull.  We couldn't do her midface advancement this summer because she has holes  in her skull where the screws need to go to attach the halo device to her head.  The FOA will be bringing her forehead out to give her brain room and to also fix the indent that she has.  We could have had these fixed years ago if we had been with her new surgeon then but we are with him now and moving in the right direction.  This is a still a very risky surgery being that they have to take part of  her skull off, break it and piece it back together like a puzzle with plates and screws just like when she was 6 months old.  She will be in the hospital for 3-4 days following and then home bound for another week.  Surprisingly her surgeon said she could be ready to go back to school 10 days after surgery barring everything goes as planned.  We of course will take that one day at a time after surgery and make sure she is 100% before sending her back.

We will be selling shirts this time around  that everyone can wear on surgery day to help boost her spirits.  I will post a link when it comes time for those.  

Until then we will keep living life, enjoying the rest of our summer and trying not to worry about the things coming in the near future.  

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.

                            

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!!