HOME!! 5-12-18

We made it home!  Braylee did great last night and today on the trip home she did great also.  We are going to stay on top of pain management and hopefully be able to start and wean her meds a little bit tomorrow.  She is pretty swollen in the cheeks as to be expected.  Tomorrow is day 2 so the swelling could get a little worse before it gets better.  We have made 4 turns on her expander and she has handled in like a champ.  We have to turn it 2 times in the morning and 2 times at night for the next 2 weeks or until we have reached where they want her to be.  We will be returning to SLC  every 7-10 days for the next month for check-ups.  We'll just keep on keeping on and get her over this hump and get her back to her normal self.  Thank you everyone for your thoughts and prayers!!

Discharged 5-11-18

Braylee was doing so well they decided to discharge us tonight instead of tomorrow! We're back at the hotel and will hopefully get some good rest tonight minus waking up to take meds. We'll head back to Wyoming tomorrow. She amazes us every time!!

Out of surgery

Surgery went great! We may get to leave the hospital tonight depending on how she does these next few hours. If we do we'll be staying in the hotel and not far from the hospital. Right now we're just trying to stay on top of pain management, fluids, and make sure her oxygen SATs stay up. Thank you everyone for the prayers!!

7th Surgery Underway 5-11-18

Braylee went back into surgery at 12:40.  She went with NO happy juice, she is such a rockstar!!!! They anticipate it to take 3 hours.  Please pray for our baby girl and her doctors.

7th surgery tomorrow

Well tomorrow Braylee will go under the knife for the 7th time.  She will be having Lefort 1 which will be expanding her palate and nasal passages. She is scheduled to start at 12:45.  We wish it was an earlier time but with it having to be rescheduled a couple of weeks ago we got put where they could fit us. We'll just be thankful it's not later than it already is.  She just gets to have some sprite for breakfast and hopefully that'll make her happy and make up for not getting to eat!

Today we got to celebrate her younger sister Maddee's 3rd birthday a couple of days early at the zoo so Braylee can enjoy it and be able to eat pizza and cupcakes tonight before she's on a liquid diet for a week and then soft foods for at least a month. 

We'll update more when she heads back into the OR tomorrow.

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!