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!

The Next Step.

Well we are back at it. More and more doctor appointments!

Rocking the boot

But first, back in February Braylee jumped off of one of those wedge gym mats at preschool and landed on her foot wrong.  I took her in for x-rays the following day and they said it was sprained. A couple days go by and multiple doctor visits later they tell us it's fractured  with a couple possible hairline fractures.  Something didn't feel right to me so after I left their office with Braylee in a walking boot I called her ortho specialist in Salt Lake City to get an appointment.  We just wanted to make sure we were on the right course of treatment since she can be so medically complex.

So on March 7th we made the journey to Salt Lake City. Braylee had a full day of appointments.  Her first appointment was with her ortho to look at her foot.  They reviewed the x-rays and took some more of their own and said there were no noticeable fractures but that doesn't mean that there wasn't one in her growth plate that they can't see on an x-ray and what the other doctors thought were hairline fractures is actually just the way Braylee is.  Now they said with her pain we are to keep her in the boot for 2 more weeks making it 4 weeks since her injury and then everything should be healed or close to.   Mommy gut wins again!  So glad we took her to her doctor!

For her second appointment we go across Salt Lake City for a follow up appointment with her plastic surgeon for her head. Her head has grown a little so we are still on watch and are to let him know immediately if we notice signs of intracranial pressure.   We talked about her midface advancement surgery that he would like to do around 7-9 years of age.  One of the main milestones they want for this surgery is for her to be old enough that she can mentally handle it.  It is a VERY big surgery with a lot of drastic changes that will happen to her face so she needs to be able to understand and process these changes as they happen.  So just something else to keep in the back of our minds.

Back across Salt Lake we go to Primary Children's Hospital for her appointment with her orthodontist.  He is still very worried about how narrow her nasal passages are and wants to move forward with doing the sarpe procedure.  This surgery will widen her palate and her nasal passages. This is one of the surgeries they want done before the midface surgery and if it is successful it can move us  more towards the 8 or 9 years of age range, which would be great.    So we go back on March 30 to get an array of x-rays done on her face/mouth, they will do a mold of her mouth so they have that to study and go off of. .   We will learn more about when they want to do the surgery then.  Now we have gotten used to going into these appointments and getting  the "she looks good we'll see you back in 6-12 months".  So to say we were thrown off guard with an upcoming surgery is an understatement.  I didn't have questions ready to ask or anything that I really wish I would have asked now. I will go in the appointment on the 30th more prepared.  It's all a bit surreal and we don't even have a surgery date yet or anything.   We always knew there were going to be more surgeries and we've gone an amazing 2 1/2 years without a surgery but this surgery is for her greater good.

Her last appointment was a teeth cleaning.  She rocked it of course and we just have to put the flouride on her teeth again once a month to help slow some cavities she has on her front teeth caused from her upper lips being so tight.

So a busy, busy day and we are happy to be moving forward.  Back into fun news, for Christmas this year we went to DisneyLand and boy was it fun!  Braylee got to meet Mickey and Minnie Mouse, Anna and Elsa, Doc Mcstuffins, Crush from Finding Nemo, Elena, and she got to see Lightning McQueen driving down the walkway.  She is a rollercoaster girl, screaming and laughing on every ride.   Her favorite place was Cars Land and she can't wait to go back, asks everyday if she can go see Lightning McQueen again.

It's Lightning McQueen!!

 This winter has been a rough one on the family, we just keep catching every little bug there is to catch.  Bitter cold and we've gotten over 11 yep ELEVEN feet of snow this winter, the germs are thriving!!  To say we are ready for it to warm up is an understatement.  B has learned to drive a snowmobile, what else are you going to do with all of this snow!?  She laughs the entire time she's driving it around.  She's our beautiful, bubbly, happy little girl who absolutely loves her sisters.  Her sense of humor is amazing, always making us laugh. We would do anything to help her way of life so we will continue to put one foot in front of the other and take notes from our brave little girl.  She makes everyone who knows her a better person!  Apert Syndrome will try and shoot us down but it will not win, Braylee will.  And boy will she!!

Pulling sissy behind the snowmobile

Queen of the snow mountain

Olaf!!!

This snow is exhausting!