5 year CRANIOVERSARY!!!!!!!

Happy 5 year Cranioversary!!!  It may seem weird to some to celebrate a cranioversary;  this journey with Apert Syndrome started when Braylee was born but to me it became more real when she had her very first surgery. Which happens to be the biggest one to date.  Five years ago Braylee was only 6 months old when her very skilled surgeons took her into the OR to perform a Cranial Vault Reconstruction to open up her coronal sutures that were prematurely fused together. So they took her skull off, broke it, and then put it back to together like a little puzzle to make room for her amazing brain to grow. Today always brings a whirlwind of emotions, happiness, and thankfulness.  But it also brings us back into reality and the craziness that comes with Apert Syndrome.  Braylee is such a happy, bubbly, and funny little girl.  She makes our days brighter and better.  Apert Syndrome is a part of her but it doesn't define who she is.  She has no limits and we will do anything to help her along the way to make her life better and more enjoyable.  She is going to go places and do amazing things, I just know it.

We have scheduled her 7th surgery for April 20, 2018.  This surgery is called the Sarpe.  They will go in and cut above her permanent teeth and insert a device to expand her palate and it will also widen her nasal passage some too. We will be turning this device for 4-6 weeks then we will stop and wait for the bone to grow and fill in where it has expanded.  This surgery will give her more room for her teeth and hopefully help with her airway.  We will be traveling to Salt Lake City a lot for check ups after this surgery.  They have to make sure everything is moving how it should.  So we will have to travel once a week for the first 4-5 weeks and then it will become a little more spread out after that if everything is going as planned.  She will be on a strict soft foods diet for at least a month.  Challenging me to come up with a variety of different meals.

We had an amazing Christmas and New Years with family.  She is enjoying her last year of preschool and couldn't be more excited to start Kindergarten in the fall.  It is snowmobile season so she has been spending as much free time as possible driving her snowmobile around and doing "tricks".  She loves her dance class and dancing all around the house with her sisters.  Enjoying life just like any 5 year old. 

3 YEARS SURGERY FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!

THREE... YEARS.. SURGERY... FREE!! Do you now what that means? It means she has not had a surgery for over half her amazing little life. Up until today over half of her life has been surrounded by surgeries and recovering from those surgeries. This may not seem like anything big but for a girl who potentially will have to endure  countless more surgeries, 3 years without one is absolutely amazing!!  Now, we know that in 5-6 months our streak is going to be ending but it's to make her life better and that is what we have to keep reminding ourselves. So we will enjoy this time and try not to fret over what's coming.  

She is enjoying her last year at pre-school.   Making new friends and learning a lot.  She started swim lessons a couple weeks ago. She has always disliked getting her head wet.  The instructors always struggled with getting her to at least put her ears in the water, well this year she has no fear!!!  She has been dunking herself non-stop.  It has been so much fun to watch her! 

We've had a couple snow storms already that have left a few inches of snow and all she can talk about it getting her snowmobile out there.  Sounds like it will be another good year to get in that powder again!

snuggling during sister's cold soccer game

school pictures

So excited to be Doc McStuffins for halloween

SWIMMING!

Updates 9/12/17

We had a very busy 6 1/2 hours of doctor visits. Her first appointment was a teeth cleaning with her dentist. She's doing great and has no cavities. We still have to be watchful of the spots on her front 2 teeth and make sure they don't get worse. He gave us some flouride to put on every other month. Starting the day off good!

Her second appointment was with her Ophthalmologist. She still has no need for glasses, hooray!! She was not a fan of the eye drops to dilate her eyes this time around but she toughed it out and went on with the rest of her day. Her optic nerves look good, which is always a sigh of relief to hear. There still is no need to do the eye muscle strengthening surgery,  since her eyes aren't always drifting, we can put that one on the back burner for a little bit. When she looks from side to side her eyes will drift up and out, when she looks straight on they will drift just slightly and when she looks down they are still straight. So we are to watch her and make sure the drifting doesn't get worse since she will start to begin to read here soon, his main concern is that it will cause her to have double vision. So another appointment with no bad news!!

not liking her eyes dilating. 

Her third appointment was with her orthodontist.  Nothing has really changed here and he still wants to move forward with doing the Sarpe surgery. We just have to talk with her plastic surgeon about when. It's a 6-8 month recovery process so it's timing is something we want to put some good thought into. I don't want to be driving the 240 miles(one way) on bad winter roads for all of the check ups that this procedure will require.  We went over her CT scan that we did back in March. It was pretty cool to see all of her uniqueness in 3D. Things are really narrow in there (which we knew) but it's always crazy to see just how narrow. So another good appointment with no bad news, just stuff we already knew.

talking with the Dr.is boring and exhausting!

Her last appointment was with her plastic surgeon. He measured her head and it hasn't really grown in 6 months. He isn't very worried about that at this point. Since she isn't showing any signs of problems then that still means she still has room in there. We are to keep an eye on her and let him know if we notice any changes. We then talked about the Sarpe. He is willing to do it whenever we think will be best, so as of right now it will be sometime in March. Pending everything lines up with our schedule and the schedule of 3 other doctor's.

All in all it was a great day with good news. It just seems a bit surreal to have a surgery in our sights. She will be 3 years surgery  free this November!! She continues to amaze us with how strong and amazing she is. She rocked all of those appointments today with only 1 small melt down.

We have started off the new school year and it's super busy!  She has started soccer and dance class. As usual she can't wait to get off to school. She is making more friends this year in her class and it makes this Momma happy to see others so excited to see and play with her!

HAPPY 5TH BIRTHDAY

HAPPY 5TH BIRTHDAY!!!  I can not believe that she is 5! She loves Lightning McQueen, Doc McStuffins, and Paw Patrol.  Her favorite color is blue, blue EVERYTHING!!! She loves singing and dancing.  I get surprised sometimes by some of the songs she starts to sing on the radio.  One of those things that just all of a sudden clicked with her and just like that she knows all of the words to every song.

Ready for the parade

Back in May she had her dance recital and danced her little heart away. That girl loves to dance and absolutely loves her dance teacher.  She also got to dance in the Green River Rendezvous parade this year.  Her poor little feet couldn't handle the demand of the parade so she got to sit up in the bed of the truck for most of it and do the dance while they drove down the parade route.  She had so much fun!

She starts her last year of pre-school this fall and can't wait for it to begin. She loves her teachers and her friends!  I can't believe she has only one year before she starts kindergarten! Time sure does fly!

Since I last posted back in March, Braylee has had her facial x-rays done.  Those came back and come to find out her nasal passages are around 95% blocked by bone. No wonder her CPAP needs to be at a pressure of  10 (which is high for most adults).   So doing the Sarpe procedure will greatly help her out. As of right now we don't know when this surgery will happen, we are still waiting to hear from her plastic surgeon since he was going to talk with her orthodontist and come up with a game plan. This surgery will require A LOT of traveling and with it being so late in the summer already I could see it  being spring/early summer 2018 before we do anything.  Mainly because I don't want to have to be driving the 3 1/2 hours to Salt Lake City every week  on winter roads. But of course if they decide we need to do it sooner rather than later we will do what we have to.

 Another thing her facial x-rays showed is what  our orthodontist thought was intracranial pressure. I called her plastic surgeon about this and we both decided it was best to do a CT scan of her brain.  So on April 21 we went back to SLC for a CT.  We initially scheduled for her to be sedated but I wanted to try it without at first since being the rockstar that Braylee is I thought she would be able to hold still for those 5-10 minutes it takes to do a CT.  I prepared her by showing her videos on YouTube about what to expect and the whole process.  So they took us back to the room and brought in a counselor to help talk her through the process and before she even starts talking to Braylee, Braylee gets up on the table, lays down, puts her arms to her side and said "I'm ready".  The counselor was so shocked and impressed that she didn't have to do anything to help this 4 year old out.  She said "well I'm not needed here" and praised Braylee for being so brave.  That's my girl!!  Braylee sat super still through the whole scan and we were in and out of the hospital in under an hour.  The results came back that her ventricles in the middle of her brain are still open and not constricted at all but he did see some constriction on the outside ventricles of her brain but he said it wasn't anything emergent at this time and we will just keep a very close eye on it.  So needless to say she will probably be needing another cranial surgery in the future and we are glad that it isn't emergent and we can just watch her for now.  We go back in for a check up with her plastic surgeon and orthodontist in September.  

In May we went back to SLC and saw her orthopedic surgeon for her feet and spine at Shriners Hospital for Children. She took over 10 different x-rays and of course Braylee was their star patient for the day! Her fusions on her spine still look good and her feet still look good. We will just continue to watch the "Apert bump" on the bottoms of her feet and do surgery when they get to be too big of a problem.  We will go back for another check up in a year.


Still some things we need answers to but for now we will enjoy our time with no surgeries or hospital stays!  She continues to show us how amazing she is and we can not wait to see what else this amazing little girl can teach us!