1,2,3,4,5,6,7,8,9,10 that's right TEN fingers!!!!!!!!

Today is finger reveal day and let me tell you they look amazing!!!  They have healed up very well, now we just have to wait for the scabs to fall off!  Braylee keeps looking at them with a weird look on her face and every once and awhile saying "WOW" haha.  She thinks they are amazing as well!  Her Dr. was very happy with the way they looked and said she doesn't need to see us back for a year!  Phew one less Dr. appointment.  They had her fitted with some silicone spacers to put in between her fingers at night, to keep some pressure on the scars and hopefully reduce the chances that her web spaces will grow back together ( which is kind of common).    She gets to wear those for a whopping 6 months.  Poor thing has so much stuff to wear at night but we gotta do what we gotta do!

Oh my is she just an amazing little girl.  Her speech has just taken off and she is still just taking everything in stride and not slowing down!  She is into copying her sister and thinks that she hung the moon but is also in that lovely terrible two's phase where everything is "my" (mine).

For now we get to focus on getting those fingers healed up and making sure they keep healing like they should.  After that we get a little break from doctors ( at least we hope) until February!!!

after

before

Before

After

Silicone spacers

One week post-op

First off, sorry for the late blog post.  My app wouldn't let me update the blog at surgery and then it got kind of crazy around here so I am just getting around to it.  

Getting ready for surgery

I'll check them myself

Braylee's surgery went great!  She now has 10 fingers!!!!  We don't get to see them until we take her casts off on December 1st but they are there and we are so very excited!!  They didn't keep her overnight for the first time with her fingers surgeries.  So we went to a hotel that night since she had an appointment to get her orthotics the next morning.  It turned out to be a good thing that we stayed since she started throwing up at 2:30 in the morning and just couldn't stop or keep any liquids down. We thought it was her pain meds that she hasn't had before and are common to cause nausea.  So my mom and I took her to the ER to get her checked out.  The doctor there told us it was either from her pain meds, a side effect of anesthesia, or a virus.  They gave her zofran (anti-nausea medicine) and hooked her up to an IV for fluids and that seemed to get her to stop vomiting.  They took blood work and xrays of her tummy to check for blockage and both came back clear. We were really close to saying lets go back to the hotel and wait it out another day there. Her dad, grandpa and sister even headed back home because they thought she would be getting discharged. Then she started throwing up again so we made the decision to stay a little longer and they moved us to the rapid treatment department and we waited to see how she did.  Here her zofran had worn off and she started up again and was completely miserable.  She then threw up some green bile which isn't a good sign so they immediately took her for an ultrasound to get a better look for a blockage and thankfully that came back clear also.  We ended up staying the night and I told the nurse just keep up with all of her pain meds and zofran during the night so hopefully she can get some good rest and get over this.  B slept really good only waking up once for meds.  The next morning she was a completely different kid!  Almost back to herself, sassy, not wanting the nurse to touch her thank you, so much so that B decided she would "check" her own cap refill in her fingers so that the nurse would leave her alone haha.  Poor thing was tired of being poked and prodded.  We weaned her off of her IV and zofran and she kept everything down and had  a little bit of an appetite so they discharged her!!! YAY we can go home!!  Well on the way home we got our answer on whether it was a virus, meds, or anesthesia because I started to get sick. Virus it is!  Which I am soooo happy she didn't have a reaction to anesthesia because that would make future surgeries even more complicated.  Slowly the rest of the family got sick and man oh man was it miserable!  Feel so bad that she had to go through that all the while recovering from surgery.  One strong little girl!  But we are over the hump and pretty much back to ourselves now!    

Ready to go home

In other news she received her orthotics the day we got to head home and she still isn't the stablest in the them.  She just isn't use to them yet and keeps losing her balance.  So she gets to wear her shoes around the house and get those little feet comfortable.  

Just have to keep on keeping on and get these little fingers healed!!  Thank you everyone for your thoughts and prayers they are greatly appreciated!!!

6th surgery is set!

go WYO

Yesterday 10/6/14 we went to Salt Lake City for appointments at Shriners. Her first appointment was with her hand orthopedic surgeon. She was checking up on her hands from the surgery in May and thought they looked great. We have scheduled her 3rd and hopefully final finger release for November 10!! So our goal is to keep her healthy for the next 4 weeks..... easier said than done.

pretty girls

Her second appointment was with her feet orthopedic surgeon. This was just a routine check up but we have been a little concerned with her feet, since when she tries to run she acts like she is unbalanced. So they watched her walk around and ended up taking x-rays and discovered that her heel bone and the bone directly in front if it have actually fused together since her x-rays she had done a year and a half ago. ( a common thing with Apert Syndrome) This may or may not be the reason she isn't really running yet. There is nothing surgically that they can do to help this so she was custom fitted for some orthotics.  Hopefully this will help her out.  So not wonderful news but at least we got some answers.

She loves to do her chores

Off to get x-rays

Any how, she is a growing little girl! Today she weighed in at 27 lbs and was a whopping 3ft tall!!! She is talking so much and surprises us everyday with a new word or sound.

We got to go in and talk to part of the 5th grade class a couple of weeks ago.  They are reading the book "WONDER" and since B has a lot of similarities to the main character in that book we went to to talk to them about her and her syndrome, how to approach someone who is "different", and showed them that she is just like any other kid her age.  We got thank you cards from all the students and  they loved meeting  B and hearing her story and it seems like we made a lasting impression.  Huge success, I'm just so happy!!  It was great to spread awareness.  

What better way to entertain yourself than to play peek a boo!

oh the things we do to stay entertained

Her cpap is moving along.  She slept 11 hours with it the other night!!  That is a HUGE milestone and am just so very proud of her determination.  She impresses us everyday with everything that she accomplishes 

Oh the joy!!

Spraying sister!

 Yesterday was a great day of news!  Let me tell you there is nothing that makes that 4 hour drive home better than good news from the doctors!

Her first appointment was with her dentist.  He said her enamel is great and her teeth are looking good.  Go back for another check up in 6 months.

Dr appts. are exhausting

She had  an appointment with her cranial facial team next. Here she met with her E.N.T, plastic surgeon, speech pathologist, and orthodontist.  Her E.N.T. said her tubes look good and was glad to hear that her cpap is moving along, which is a plus meaning she won't need a trach.  He said to start her at night time now.  A little bit is better than nothing.  We will go back in a year for another check up.

Her plastic surgeon was happy with everything. He is going to take his measurements back to his office and compare them to her previous measurements and call us if he has any concerns about the growth.  We are also still keeping an eye on her 2 soft spots on her skull to make sure they don't get any bigger and hopefully get smaller.  We will go back in 6 months and hopefully she has made some progress.

Yay water park fun!

The speech pathologist was very happy with her progress and says to keep up with her early intervention speech therapy.

Her orthodontist said her mid-face is starting to slow down on its growth,( a common thing with Apert, their mid face grows at 1/3 of the rate of other children)   but hers is considered not severe at this time.  He is pretty sure she is still going to need the mid-face advancement when she is older (usually around 7 years old).  If the cpap ends up not doing what it should we will have to do the surgery sooner rather than later, to open up her nasal passage.  He is happy with her progress and apparently made an impression on B since he is the only one she gave a high five/ four to.  We go back in a year for a check up.

Nothing better than good news!!!

We got to go over on Sunday and go play at the water park.  B loved floating around the lazy river in an inner tube.  She liked the slides on the smaller side, she wasn't sure what to think of the big twisty slides.

She is really getting into playing hide and seek, she will cover her eyes and tries to count.  It  is really cute and funny. But she always gives away the persons hiding spot since she doesn't hide her eyes the whole time haha.....her sisters' own little spy.  :)  She is a growing machine weighing in at almost 26 pounds and is 34.5 inches tall!

Keep on keeping on, one step at a time!

What is this thing???!!!

HAPPY 2ND BIRTHDAY!!!

Well today is the day that Braylee Rae turns 2 years old!!!  I just can't believe that she is two already.  I can still remember the day she was born like it was yesterday.  Well, lets be honest no one could forget that day for many reasons.  It is the day we fell in love again and also the day that our worlds were turned upside down.  It has been a whirlwind of a 2 years and the only thing I could change if I could would be all the pain she has had to go through.  No parent wants their child to have pain. Even though she handled it all like a champ, always smiling and happy.  I still hate that she had to go through all of that.

What?? I'm not getting into the presents!!

Apert Syndrome is part of who she is but it doesn't define her.  She is a smart, bubbly, stubborn little 2 year old.  She is in to copying her sister and playing hide and seek.  The two of them together (when they aren't fighting) is the sweetest/funniest thing to watch.  Charlee is so protective of Braylee and wants to help her with EVERYTHING! So much so that it frustrates B when Charlee tries to help her.  She wants her independence and I love that about her.  She won't give up and is just so strong willed.


In other news, her fingers have healed up wonderfully!  All of her scabs are gone and they are just beautiful!  We go back for a check up on her hands, feet, and spine at Shriner's on October 6th.
We go see her craniofacial team on August 11th for a check up to make sure everything is moving in the right direction.
Her cpap is moving along.  She has worn it up to an hour and a half  straight during the day.  We will be trying it during nap again here soon.

It has been a great 2 years, she has taught me so much and I can't wait to see what she can teach me in the many years to come!  Such an inspiring little girl.

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!