2 Years Surgery FREE!!!

It is very hard to believe that we have been 2 years since Braylee has had a surgery!  That's 730 days we haven't had to say bye to our daughter in a pre-op room, hand her off to her anesthesiologist and watch them walk her down to an operating room and pray she comes out OK.  We will enjoy this time as long as possible but in the back of our minds we know that we will eventually have to do that again, an unknown amount of times.  Every child with Apert Syndrome is different on what they will need to help them strive in this world and now that Braylee is older we are starting to have to make more decisions on what surgery route would be the best for her.  I will go more depth about this a little later on.

Walking into the ultrasound

During her 4 year check up with her pediatrician we talked about a few things with him.  First was if we have covered all of our bases with what can be an underlying issue and we just haven't thought to test for it.  Her pediatrician has been doing some research and said that kidney issues can be a part of Apert Syndrome and to be on the safe side and so we don't have any surprises down the road he thought it would be best to do an ultrasound on her kidneys to make sure everything is working like it should.  Braylee was not very happy to be back in that room, I'm sure remembering having her Echocardiogram done. But she of course rocked it and let the tech do what needed to be done.   Thankfully the results came back great and we can check that off of the list of things that could throw a curveball our way.    The second thing we talked about was that her head has barely grown in the past year.  He wasn't very concerned yet and said we would just keep an eye on it and I told him I would call her plastic surgeon and give him the update.  I'm very thankful for her pediatrician he cares about Braylee and he is willing to do the research on her very rare syndrome in       his spare time to give her the best care possible.  Means so very much to us.


Back in September we had pretty much 2 full days of Dr. appointments in Salt Lake City.  Her first appointment was with her Ophthalmologist. He said there is still no need for glasses, YAY! Her optic nerves looked good.  He talked about the eye surgery she will eventually need to help her eye not drift so much when she looks up/down and to the side. He thinks this surgery will most likely take place in the next year or two.





Her second appointment was with her pediatric dentist.  Her teeth look as good as can be expected with her small palate.  She did amazing and sat through a full cleaning. She just has some spots on her front teeth that he is worried about.  She has such a tight upper lip that anything can get stuck up there and just wear on her teeth.  He gave us some flouride we have to apply to her teeth once a month for 3 months and hopefully it doesn't get any worse.
Her third appointment was her craniofacial clinic.  Here she sees multiple specialists within a 2-3 hour period.   Her speech pathologist is very impressed with her progress even though Braylee is always super shy and we can barely get her to talk.  She saw enough to be impressed.  We are to keep doing what we are doing with speech therapy and at home.
We saw her orthodontist and here is where things start to get more complicated.  He looked in her nose and said "oh mom, there isn't very much space in there.  I don't think she can even breathe out of the one nostril it's so narrow." He brought up doing this new procedure that their team developed and have seen success with it.  It is called the Sarpe procedure.  Basically it is widening the nose and a little bit on the palate to open up her airway a little more.  He wasn't set on doing it quite yet since she is doing great on her cpap.  He said he would meet with the rest of the team and discuss whether they all thought Braylee would benefit from it.   We knew the day was coming when our visits would become more in depth with him but I just wasn't ready for it to be now.  We now have to start seeing him in 6 month increments instead of  2 year increments.
Next was her ENT.  Braylee's ear tubes have finally fallen out, they lasted almost 3 1/2 years!  As of right now we are waiting it out to see if we need to give her more.  So if she has 3 or more infections within a 3 month period then we need to put new tubes in.  Now that it is cold/flu season we are on the watch.

We saw her plastic surgeon.  Here we addressed the concern of her head not growing.  I had called him a little over a month before so he had some heads up about what we were concerned about.  He measured her head and then called his office to get her last measurement and yes her head hasn't grown very much.  He said looking at the growth that she will most likely need another cranial surgery :'(.  He said that it isn't very often that a kid will need a 2nd cranial vault only around 4% or something. As of right now we are just keeping an eye on her and watching for any signs of intracranial pressure.  She has been randomly saying her head hurts before this visit so we expressed that concern and he said as long as it isn't constant and isn't lasting for very long then she is doing fine. Also since her optic nerves were fine at her eye appointment that is another sign that we are still in the clear.  If her headaches become more frequent or she has a change in sleep, her gait, or her vision then we need to take her in right away.  We will go back in March and take more measurements and see if anything has changed.

A special ride into the hotel after a long day at Dr's

Last but not least is her appointment with her hand orthopedic surgeon.  She said everything is looking great.  We only have the one concern of the web regrowth in between her pinky and ring fingers, but isn't much and it doesn't seem to be bothering her so we will just leave well enough alone for right now unless it starts to become a problem.  We will see her again in a year.

So a lot of medical jargon to absorb in a 2 day period and try to process but we are comfortable with all of the Dr's decisions.  We are just getting to the age now that they are going to start throwing options at us and we have to sit down, do our research and make a decision on what is best for Braylee.

Braylee had a pretty scary fall the other day where she tripped and hit her eye on the trim in our house.  Normally a kid has their eyebrow or cheekbone to protect their eye but since Apert kids facial bones don't grow at the normal rate she doesn't have that protection.  Luckily she could see out of it after and she could track with it so after a few minutes I settled down and realized she really is OK and I don't need to rush her to the Dr.  She had a pretty good bruise on her eyelid for a couple of days with a little swelling but that was it thank goodness!!!

She is enjoying her 4 year old pre-school and is making new friends which of course makes us really happy to see.  She participated in soccer this fall and couldn't stop smiling even after running up and down the field for 6 minutes at a time.  She is doing Ballet and Hip Hop dance classes again this year and she gets so excited when Thursdays come so she can go to her dance class.  Of course every time she insists on wearing her dance outfit from the recital last year. Her favorite color is blue and obsessively so!! Her teachers always say that if she is given the choice she will choose blue paper, a blue paint brush, and blue paint to paint a picture.  Makes our shopping super easy, if it's blue it's loved ;).  We are so very happy of the little girl she is becoming.  She's smart, beautiful, and funny. She makes everyday brighter!

Soccer in the rain

Tending to her horse

A ride in a firetruck

spooky witch

Happy 4th Birthday!!!

So I started this blog about 4 months ago and we have been so super busy I am just now getting back to it, so sorry I haven't posted in awhile!   Today is Braylee's 4th birthday!!  I can not believe it has been four years already!! We get to have a Teenage Mutant Ninja Turtles party!  Her favorite things are super heroes, just like her! :)

Face Painting!!

 Braylee continues to thrive! She loved her first year of preschool and keeps talking about when they get to go back. She has made some great friends at school and that just makes me so very happy!!  Her speech continues to grow, everyone is so amazed of all of the progress she has made.  She has been riding her strider bike a lot lately and she's getting more and more confident to put her legs up and balance.  She'll be moving to a big kid bike here soon if she keeps it up. She can now jump and get both feet off of the ground.  I know to some this isn't that big of a deal but to us it means the world.  She has been trying so hard for a couple of years to be able to do this and she has finally figured it out!  Sometimes it's the little things that can lighten up your day.  She had her first dance recital this year and loved every minute of it and keeps begging to go back to dance class!  One of her favorite hobbies is going roping so she can ride her horse Booger.  Her confidence is growing with the horses to where she can ride solo with someone leading her.  Just so very proud of her.

Riding with Mom.

I love playing in the dirt while roping!

riding with dad

 Braylee's set of ear tubes that she had put in  during her cranial vault reconstruction over 3 years ago started to fall out a couple of months ago. Her ENT mentioned at her last appointment that he would most likely need to replace them. Something we will be talking to her ENT about at her appointment in September.  So just something for us to keep our eye on.

Since Apert Syndrome can have such a wide spectrum of underlying issues, some that may not be noticeable without further testing. Back in March we decided to have an Echocardiogram done of Braylee's heart just to be on the safe side and help us sleep at night.  She laid completely still for an hour and a half while they did the Echo.  She was a complete rock star! Good news is her heart is 100% healthy!! Phew!  It was a really long week waiting for those results to come back! So another thing checked off the list.  

Being so brave during her Echo!

She saw her orthopedic surgeon for her feet back in May.  They took x-rays of her spine and examined her feet.  We are still keeping her comfortable with the spots on her feet with orthotics.  Which is perfectly fine with us not to do another surgery right now.  As long as she is comfortable.

Of course we had to go see Sully and Mike at Shriners

  

She saw her plastic surgeon back in February for a check up on her head. Everything is still going great there.  She still has the few "pulsating" spots but he won't do anything about those until she is older if they don't eventually end up closing on their own .

She had her first real teeth cleaning at her dentist and rocked it of course.  Her teeth are becoming more crooked but that is to be expected since her palate is more narrow so there isn't enough room for her teeth to come in properly. Just something else for us to keep our eyes on and make sure there isn't anything bothering her.  Also she is FINALLY teething in her last tooth!!  Teething can be a really delayed process with Apert kiddos since everything is so narrow it can be hard for the teeth to make their way up and out.

In September we will have another round of routine doctor appointments. We'll start off with her pediatric dentist for a cleaning, easy peasy.   Then we will be going to Primary Children's hospital for her craniofacial clinic where she will see her ENT, plastic surgeon, speech pathologist, and orthodontist.  This is a very long appointment, usually a couple of hours but it is so nice to be able to see all of them in one swoop and in one office. Then we will make our way upstairs and she'll get to see her ophthamologist, which we have  a little concern with her eye sight, sometimes she will say she can't see stuff or will be up super close to see it.  It hasn't gotten to the point where we need to take her in early but it is definitely something on our agenda to talk about.  The following day she will go and see her orthopedic surgeon for a check up on her fingers.  PHEW!  A little bit crazy but so glad we could make it work in one trip to Salt Lake City instead of multiple.

Her first dance recital

Future MasterChef Junior right there ;)

We are still on track for no surgeries (minus maybe ear tubes) for at least a couple of years.  Which her midface advancement is still around 3 years away and I'm already getting anxious about it.  One of the great things about Facebook is the Apert families/groups we have been able to connect with.  It has really helped out in our preparation for what is to come, to vent, and to talk with people who really know what you are going through and be able to talk you through it.

Helping Daddy hold calf during branding

Checking out the calves with her cousin.

She is a little fish

Camping mornings haha

We are just so very grateful to have her in our lives!  Happy 4th birthday Braylee!!!