The little things in life!

Well it is going to be a very busy couple of weeks for the family.  Braylee has her surgery on August 23 and she is now rescheduled for her hands surgery at Shriners Children's Hospital on September 9, 2013.  She is so ready to walk but hasn't gotten up the courage to just go yet.  We sure have enjoyed not having that helmet!  She wakes up with bed head instead of helmet hair. She can now wear her own sun hats instead of having to wear Daddy's hats over her helmet! Sometimes it is the little things that can make you oh so happy!!!

 

Sister shared her pudding!

 

 

Sun hats YAY!!! 

 

Sister love!

 

 

Happy, Happy!! 

No more helmet.....but

BRAYLEE IS HELMET FREE!!!!!  We are so very excited about his milestone!  Her doctors think her head looks great and are happy with the shape of her head! 

On another note B has had a spot on the side of her head that sticks out.  We asked her Dr. about it a couple of months ago and he said that it feels like a bone and  that if it gets worse or doesn't go away then we will have to do something about it.  Today he felt it and said "WHOA that is sharp, we need to do something about that right away!"  So Braylee is scheduled for ANOTHER surgery for August 23, 2013.  He isn't quite sure what he is  dealing with until he gets in there, so he is planning on making an incision on her previous incision and scoping down to the bone and hopefully scraping it down.  He thinks he is going to have to shave her head again :'( we hope he can just cut a patch or something but probably not likely.  Cancel one surgery and get another one booked....just our luck :(. But we want her to be as healthy as can be so if another surgery is what it takes we will do it. 

 

 

Bye Bye helmet!!!!

 

Front view of her spot

 

Side view

Some little bumps in the road

Braylee had her 1 year check-up today and unfortunately her Dr. found an ear infection with a ruptured ear drum.  Her surgery for Monday has been cancelled.  We haven't gotten a new surgery date yet but hopefully will have one within the next couple days. 

Today at her check-up she weighed 19.12 lbs (41st percentile) and is 30 in. tall (73rd percentile).  Her Dr. said she has hit all of her milestones and couldn't be happier with her progress. 

We are still hopeful that on Friday the 9th she will be done with her helmet!! 

 

 

 

CHEESE!!

 

 

 

Such a happy little girl!

 

 

Pebbles! 

 

Spitting image of her Daddy

 

 

What...I'm not doing anything! 

 

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! 

Check up 6-13-13

Well we went to SLC yesterday and had a post surgery check up with her plastic surgeon  and her mouth looks great! She has handled the transition so well.  We still have a couple of weeks left of soft foods.  But there is no more food coming out of her nose!  :-) She has a suck down now so we have gotten rid of her special bottles.  HOORAY!!!  It is healing up nicely and the spaces where he took the grafts are almost completely grown back in! 
While we were there he took measurements of her head to see where we are with that. He measures front to back and side to side and figures the ratio between these two measurements. The normal range for the ratio is from 90-95 and B is at 99 which is great progress, especially since she started well over 100. So we still have a couple months left in the helmet to get her down in the low 90's. But she is getting there!
We stayed the night and this morning she had an appointment at Shriners.  They started out taking x-rays of her feet, spine, and c-spine.  The Dr. Says her feet look great, still no need for surgery! We just have to keep an eye on them while she grows to make sure things don't change drastically. She has a section of her spine that protrudes from her back a little bit and has been there since birth and the doctor said it is getting better.  On her c-spine they found a few spots that are fused together but she said they are flat and nothing to worry about at this time.  ALL good news!!!
Next week she is going to be 11 months old! Time is sure flying.  She is pulling herself up and really starting to learn to balance!  She is a crawling machine and nothing is safe anymore! :-)

 

Cleft Palate before

 

 

Palate 2 weeks post-op

 

Sooo big!!!

 

"monkey" crawling machine

 

What a mess!! Happy little eater!!

 

 

CURLY!!!

 

 

PRETTY GIRL!!

 

HAHA her helmet hair is the best! 

Discharged 5-25-13

Braylee has been discharged from the hospital!!! We had a really rough night...well Mommy did. B decided it was a fine time to play from 1-4 a.m.! When she did sleep it had to be in Mommy's lap in the chair. We are heading home today and she gets a strict fluid foods diet for 4 more days (applesauce, yogurt, etc.) Then a strict soft foods diet for a month ( no crackers and such). We are so grateful everything went smoothly and she has this surgery behind her! Thank you everyone for your prayers!