Out of surgery

Braylee got out of surgery at 12:30. They released her middle and ring fingers on her left hand and ended up only releasing her index and middle fingers on her right hand. It is so complicated and it took over 2 hours to release the fingers on her right hand, due to time constraints they didn't want to do her pinky and ring fingers too. So she has 8 fingers, hooray!!!  They put soft tape on her hands instead of the hard casts, so she has some fingers out she can use! She is doing great, just frustrated. She will be staying overnight in the special care unit.  Thank you everyone for your prayers. One more surgery behind us!

5th surgery underway 5-19-14

Braylee went back into surgery at 8:20 they anticipate it to take around 3 hours. Please pray for our baby girl and her doctors.

Defying the odds!!!!!!

enjoying Easter candy

enjoying a beautiful day

dyeing Easter eggs

Braylee is 21 months old, time is sure flying by!!!  She is so smart and starting to get a little attitude on her.  She loves Mickey Mouse, babies, and food :).

Her hand surgery that was set for May 12th has been moved to May 19th.  Adding another week for us to keep her healthy.....harder than one would think!

We still haven't found a cpap mask that will fit her.  Getting everything for this has been one of the most frustrating things ever.  Nothing seems to be going right.   We are slowly trying to get her use to having something over her nose and so far she does really good with just wearing it around.  But the one time we turned it on, she went from a dead sleep to nearly jumping out of her crib. Granted it didn't fit so it was blowing in her eyes too.  So we are at a stand still again until we find the right one.  

So close to fitting yet so far.

cheese!

Yesterday, May 1st, we went to Salt Lake City for a couple of check ups.  The first was with her ophthalmologist. This was a new doctor since her old one moved away, and we love him!  He has really good bedside manner and knows his stuff especially about Apert Syndrome.  We found out that her eyes are doing wonderful!  He was really surprised that they are in such good shape.  He said everything that usually goes wrong with the eyes of a person with Apert is not present in her, he couldn't find anything wrong.  She is defying the odds.  She truly is a tinysuperhero, he said.  So we were VERY excited to hear that news!  He admitted that when he saw her chart that he thought she was going to be a hard and complicated patient.  But she proved him wrong! :)

haha love this picture

Chilling waiting to go see the Dr.

Her last appointment was with her plastic surgeon, for a follow up on her head.  He said everything is growing in the right direction.  She still has two soft spots on the side of her head that he is kind of worried about but he is giving them another 6 months to close up.  If they haven't by that time it will require surgery.  So we hope and pray that they close up!

 It was a day of good news and her eyes are one less thing we have to worry about at this time.  She continues to amaze us and we are so proud of her.

 hollywoods  are on and ready to go

visiting the Easter Bunny

HOLLYWOOD!!!