Finger reveal day!!! 6-2-14

Super B waiting to get her casts off

Playing with sister

Today was the day that we got to get Braylee's casts off and got to see her  new fingers for the very fist time. They are absolutely beautiful!   Most parents wait the 9 months to get to see and feel those little fingers.  We waited 31 months to see her 8 and it is well worth the wait!  I am so happy that there are surgeons out there that can help give her a better way of life by giving her some fingers. Yes every surgery is hard and stressful but in the end it is completely worth it to see that her life is changed for the better.

Braylee isn't quite sure what to think of her new fingers yet and keeps picking at the scabs.  They are still pretty tender but now with the casts off they will start to harden up and we will start to desensitize them.  They had to take quite a bit more skin grafts this time around, but they took well.  Her surgeon was very pleased with how they looked today and we will go back in 3 months for a check up and to talk possible surgery to release her last set of fingers.
Here are some before and after pictures.  Warning her fingers are still healing so they are still red, swollen, and scabbed up.

Oofta sure makes you want to cringe, huh?  Good thing she is so tough!!  She is my little hero taking it all in stride.   I'm so glad she can empower others to be strong and not fret on the little things.


Onto other things, her cpap is coming along.  We are now trying to get her use to wearing it at nap.  She has had a cold since surgery so that hasn't helped with the process.  She can now fall asleep with it on, but wakes up in a panic 20-25 minutes in.  The time has gotten longer each time so hopefully soon she can wear it all during nap and then we will work on night time.

She is one tough little girl and we couldn't be more proud of her!

Visiting with the dog.

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!!!

Just another hurdle

So about a month and a half ago we did an at home "sleep study" which was just with a pulse ox to measure her SAT's.  The results from this made her E.N.T. want a more in depth sleep study and for her to be put on oxygen at night.  We finally got the study done last night.  She did really well getting hooked up with all of the wires and stuff, there were around 26 of them!!!  Once she got hooked up she fell asleep rather quickly and surprisingly she stayed asleep.  She did have one of her episodes (crying out) last night, which was good because then they could tell us  exactly what was going on.  We went over the results with the pulmonologist this morning and didn't quite get the news we hoped for, but in the back of our minds knew it was coming.  We found out that she has severe obstructive hypopnea. Obstructive hypopnea is a partial blockage of the upper airway.  Which with her narrow airway makes it really hard for her to breath while sleeping.  She is working really hard all night long to get the air that she needs.  She had central apnea once (completely stopped breathing) last night and that lasted 13 seconds, which the doctor wasn't worried about that.  Her REM and deep sleep are normal which was good to hear.  Her REM was just shorter periods than they would like.  She will be starting a CPAP machine when we can find an at home health care place that will get us one for a child under 66 lbs.....seems to be harder than you would think here in Wyoming.  Hopefully we can get it all worked out tomorrow or by the beginning of next week.   So a lot to digest but once we can work it into our  routine and get her used to it, it will all be good and she will get a full nights sleep for the first time in who knows how long! Just one more hurdle to get over but she can handle it and will rock it like usual!

Braylee and her sister Charlee received their capes from tinysuperheroes.  They love them!!  Braylee loves to wear hers around and put her arms back and fluff it out.  She wore it around the doctors office today and got so many compliments on it!    Tinysuperheroes seeks to empower Extraordinary kids who exemplify strength and determination by overcoming illness and disability. Their website is www.tinysuperheroes.com you can sponsor a tiny super hero or buy one for a superhero you know.

Getting all hooked up.

All hooked up

Super Braylee Rae and her sidekick Charlee Mae

HI!!

Such a pretty little girl :)

waiting for her results

New fingers coming soon!!!!

We had a very good trip to Salt Lake City for Braylee's appointments today!  Nothing but good news along with a surgery date.  We started off with a visit to Shriners Hospital for Children for to see her orthopedic surgeon for her hands and feet. Her hands have healed up so well and her doctor is happy with her progress. We have scheduled her next surgery for another finger release for May 12, 2014. Here they will be separating the rest of her fingers on her right hand so she will have 5 that's right FIVE fingers!! HOORAY! For her left hand they will be releasing her middle and ring fingers so she will have 4 total!  We are so very happy that she will get to have 5 fingers but we are really not looking forward to having her in those casts for 3 weeks. But it will all be worth it in the end! :)

Waiting for her appointments

Such a pretty girl

Her next appointment was for her feet.  All looks good there!  She had an x-ray done on her spine to see if her kyphosis (curvature of the spine)  was getting better.  Thankfully it is almost completely resolved!!  We will still have to keep an eye on it but the prognosis looks good!  So we will just keep going with our 6 month check-ups so they can stay on top of her case and catch anything if it happens.





Her last appointment was for to see her pediatric dentist.  He said her teeth look just like any other kid her age but we will just keep an eye on it when more start to come in.  Since her mouth is so narrow her teeth are most likely going to be really close together so she has a higher chance of cavities since it will be harder to clean.

It was a very good day!!!

Happy ONE Year Cranioversary!!!!

It is really crazy to think that it has already been a year since Braylee had her cranial vault reconstruction (CVR) . It was one of the scariest days of our lives, having to hand her over to her anesthesiologist and watch him walk with her down that OR hall to have the top of her skull taken off, broken, and put back together. We waited for 5 hours for her surgery to be complete and thankfully everything went as smoothly as possible.  And one year later her sutures are still open like they should be and her head is growing just like it is supposed to. Her beautiful blonde curly hair has grown out so much that she can have full pigtails :)!!

Look at those curls on that perfect head !! :)

  

Scar 1 year later

Pigtails!!! :)

At her 18 month check up she is a whopping 22 lbs. 5 oz (47th percentile), 32 1/2 inches tall (74th percentile), and her head is right where we want it to be at  47.4 cm which is in the 80th percentile!  Growing little girl. :)

Braylee is a walking fool now.  She is just go, go, go and getting into everything. And guess what?? We will take it!!  When she was born we didn't really know if she would be able to walk with her webbed feet and if she did we didn't know how well.  But as usual she isn't letting her disadvantages hold her back.  She may not talk as much as another 18 month old but she can still say a few words and she understands EVERYTHING that we say.  We can ask her to go and get something or to do something and she does it.  It is so great to "see" the little wheels turning in her mind as she processes what she needs to do.  She is a smart little thing.  One of the many reasons we are so grateful for her CVR so her smart little brain can continue to grow!  As for the talking, that will come in time.  She is learning new sounds everyday since she had her cleft palate repair in May 2013.  Soon she will be jabbering away and giving her sister a run for her money on who can talk the longest......that shall be one heck of a competition.  She will be starting early intervention speech therapy on January 24.  We don't know what all this entails yet but we will know more then.  She is learning to sign more and so far can sign "more", "please", "all done","milk", and we are working on trying to figure out new signs for certain words due to the limitations to her fingers and hands.






















She amazes us and everyone else around us with what she has accomplished.  She is a determined little thing and always has to try to figure out how things work....may end up being an engineer just like her Daddy. :)

We go see her orthopedic surgeon for her hands and her other orthopedic surgeon of her feet on February 3, she also gets to go have her first visit with her pediatric dentist that day.  We are so happy to have found one in Salt Lake City who has a handful of other patients with Apert Syndrome and a cleft palate.  This will make things so much easier in the future with figuring out what all needs to be done. She now has 4 teeth and loving it!!  She runs her tongue across her teeth all the time, getting a good feel of those bad boys.

The classic terrified Santa picture.  

The year  2013 was one crazy year for this family and we are VERY happy that we made it through it happy and healthy.  Yes we had those times when Braylee went in for each of her 4 surgeries and we put her life in her surgeons hands and we were so scared, but each time it only made us stronger.  She proves to us each time just how strong she really is.   Braylee has touched so many peoples lives already and she is only 18 months old (as of tomorrow).  She inspires people every day and she doesn't even know it. She has taught us to take things one step at a time and not fret over the little things.    Being "different" isn't as bad as everyone comes to think it is.   It just makes you that much more wonderful.