Happy 4th Birthday!!!

So I started this blog about 4 months ago and we have been so super busy I am just now getting back to it, so sorry I haven't posted in awhile!   Today is Braylee's 4th birthday!!  I can not believe it has been four years already!! We get to have a Teenage Mutant Ninja Turtles party!  Her favorite things are super heroes, just like her! :)

Face Painting!!

 Braylee continues to thrive! She loved her first year of preschool and keeps talking about when they get to go back. She has made some great friends at school and that just makes me so very happy!!  Her speech continues to grow, everyone is so amazed of all of the progress she has made.  She has been riding her strider bike a lot lately and she's getting more and more confident to put her legs up and balance.  She'll be moving to a big kid bike here soon if she keeps it up. She can now jump and get both feet off of the ground.  I know to some this isn't that big of a deal but to us it means the world.  She has been trying so hard for a couple of years to be able to do this and she has finally figured it out!  Sometimes it's the little things that can lighten up your day.  She had her first dance recital this year and loved every minute of it and keeps begging to go back to dance class!  One of her favorite hobbies is going roping so she can ride her horse Booger.  Her confidence is growing with the horses to where she can ride solo with someone leading her.  Just so very proud of her.

Riding with Mom.

I love playing in the dirt while roping!

riding with dad

 Braylee's set of ear tubes that she had put in  during her cranial vault reconstruction over 3 years ago started to fall out a couple of months ago. Her ENT mentioned at her last appointment that he would most likely need to replace them. Something we will be talking to her ENT about at her appointment in September.  So just something for us to keep our eye on.

Since Apert Syndrome can have such a wide spectrum of underlying issues, some that may not be noticeable without further testing. Back in March we decided to have an Echocardiogram done of Braylee's heart just to be on the safe side and help us sleep at night.  She laid completely still for an hour and a half while they did the Echo.  She was a complete rock star! Good news is her heart is 100% healthy!! Phew!  It was a really long week waiting for those results to come back! So another thing checked off the list.  

Being so brave during her Echo!

She saw her orthopedic surgeon for her feet back in May.  They took x-rays of her spine and examined her feet.  We are still keeping her comfortable with the spots on her feet with orthotics.  Which is perfectly fine with us not to do another surgery right now.  As long as she is comfortable.

Of course we had to go see Sully and Mike at Shriners

  

She saw her plastic surgeon back in February for a check up on her head. Everything is still going great there.  She still has the few "pulsating" spots but he won't do anything about those until she is older if they don't eventually end up closing on their own .

She had her first real teeth cleaning at her dentist and rocked it of course.  Her teeth are becoming more crooked but that is to be expected since her palate is more narrow so there isn't enough room for her teeth to come in properly. Just something else for us to keep our eyes on and make sure there isn't anything bothering her.  Also she is FINALLY teething in her last tooth!!  Teething can be a really delayed process with Apert kiddos since everything is so narrow it can be hard for the teeth to make their way up and out.

In September we will have another round of routine doctor appointments. We'll start off with her pediatric dentist for a cleaning, easy peasy.   Then we will be going to Primary Children's hospital for her craniofacial clinic where she will see her ENT, plastic surgeon, speech pathologist, and orthodontist.  This is a very long appointment, usually a couple of hours but it is so nice to be able to see all of them in one swoop and in one office. Then we will make our way upstairs and she'll get to see her ophthamologist, which we have  a little concern with her eye sight, sometimes she will say she can't see stuff or will be up super close to see it.  It hasn't gotten to the point where we need to take her in early but it is definitely something on our agenda to talk about.  The following day she will go and see her orthopedic surgeon for a check up on her fingers.  PHEW!  A little bit crazy but so glad we could make it work in one trip to Salt Lake City instead of multiple.

Her first dance recital

Future MasterChef Junior right there ;)

We are still on track for no surgeries (minus maybe ear tubes) for at least a couple of years.  Which her midface advancement is still around 3 years away and I'm already getting anxious about it.  One of the great things about Facebook is the Apert families/groups we have been able to connect with.  It has really helped out in our preparation for what is to come, to vent, and to talk with people who really know what you are going through and be able to talk you through it.

Helping Daddy hold calf during branding

Checking out the calves with her cousin.

She is a little fish

Camping mornings haha

We are just so very grateful to have her in our lives!  Happy 4th birthday Braylee!!!