Happy birthday Braylee!!

I can't believe a year ago Braylee was born.  It was one of the happiest and yet the scariest days of our lives!  We waited for hours to hear if she was going to be okay and what her diagnosis was.  All that we knew was that she had a prominent forehead, webbed hands/feet, and a cleft palate.  It wasn't until later that night that we found out that the Doctors were pretty sure she had Apert Syndrome.  They had to take a blood sample and send it all the way to North Carolina to confirm the diagnosis of Apert. Since then we have learned to take things one step at a time. 

In Braylee's first year she has had to go through more than most people will in their lifetime.  In January she had her cranial vault reconstruction where they had to take the top of her skull off, break it, reshape it, and then put it all back together.  She has had to wear a cranial helmet 23 hours of the day for 5 months now.   In May she under went her cleft palate reconstruction. Thankfully she has fully recovered from both of those surgeries and in less than 3 weeks she faces her 3rd surgery which is going to be on her hands. 

During this year she has surpassed our expectations!  She has learned how to work with what she was given.  It just goes to show that there are no limitations to what she can do!  She is getting so close to walking!  Soon she will be able to run away from and torment that protective older sister of hers.  It has been a fun and emotionally hard year and we are so grateful to have her!! Happy birthday baby girl!

 

Head full of curls!

 

 

Birthday Girl!

 

 

Cake is good!

 

 

 

 

Cleft palate clinic 7-1-13

We can't believe that little miss Braylee is almost a year old!!!  Only 22 more days to go! She had an appointment for her helmet and everything is going great with it, he thinks she should be able to get it off by next month!!! 
She also had an appointment with the cleft palate clinic.  Here she saw her plastic surgeon, E.N.T, speech therapist, and orthodontist. Her plastic surgeon said everything looks great with her cleft and has healed up nicely.  Braylee can now click her tongue, it's amazing what she can do now!
The speech therapist said that it would benefit Braylee to get her into an early intervention speech program, just to give her a little boost.  So we are going to find a place here locally that can work with her.  The speech therapist was really impressed with how far B has come and how alert and attentive she is to everything!  She ran through her check list and B is right on track and she has no worries at this time, she was very happy with her progress. :) 
The dentist said that kids with Apert Syndrome have a more narrow mouth. It is possible that in 5-8 years they will need to do something to make room for her teeth.  It is too early to tell, we will just have to play it by ear.   
She is almost 20 lbs and is 29 inches tall!  Growing like a weed way to fast. ;) 

 

Daddy's hat fits perfect :)

 

 

Her new face, just cracks me up!

 

 

Shirt we ordered from Cranio Care Bears

 

 

Sharing some ice cream with her sister :) 

 

Pizza is good!