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!!!

HOLY MOLY 1 YEAR SURGERY FREE!!!!

 Can you believe Braylee has gone one WHOLE year without a surgery, that is 365 days of pure bliss and something we do not take for granted!!!  This is just an enormous milestone.  Since she was born, the longest we had gone without a surgery was 9 months.   There was a time when we didn't know if we would ever go a year without a surgery, but that time has finally come and we are enjoying every single minute of it! The year 2015 has been great to us! Now for a little update from all of her doctor visits.

In the last couple months we have been super busy with check-up  appointments.  We'll start with her dentist appointment.  He said her teeth look great and is impressed with how her teeth are coming in. Easy, peasy!

Ready to get her eyes checked

 For her check up with her orthopedic surgeon for her feet, we avoided scheduling a surgery for the bottoms of her feet.  We are still trying to delay this surgery as much as possible since she is still growing and so the spot they shave down will just end up growing back. The least amount of surgeries we can put her through, the better.  So what we did instead was made her some different orthotics to help cushion those spots on her feet some more and try to relieve some of the pain of walking on them.

The ophthalmologist was very impressed with her eyes.  She still has no need for glasses, YAY!!! We avoided her eye surgery again. With Apert kids the eyes tend to drift up and out so they need to go in and try to strengthen the muscle so that it will keep the eye from drifting.  As of right now her eye only drifts when she looks up and not when she is looking straight ahead, because of this we got to delay the surgery for a couple of years he thought!

Her check up with her ENT was quick and painless.  He checked the placement of her ear tubes and said they still look good, which is surprising since she has had the same set for almost 3 years now!! (They usually only last a year or two)  We talked about her sleep study that she was having that night and what to expect with the titration study.  A titration study is when they do the sleep study with her cpap on.  This way they can regulate her cpap and see what pressure works best for her.  Her pressure is currently on a 6 and she is still having some hypopnea issues so her pulmonologist ordered for them to get her up to a 10 during her study.We are still waiting to hear the results of her sleep study,
we will hopefully hear something by tomorrow.

Her appointment with her orthopedic surgeon for her hands went very good.  She was very pleased with how they look and said that they look great.  She said at this time we are not going to worry about the web creep from  her last surgery, as long as it doesn't bother her we will just leave it alone at this time.  We don't go back and see her for a year, yahoo!!!!

She is a spunky little 3 year old with a lot to say!!  She started preschool this year and is thriving.  She loves it there.  She can count to 14 and can repeat just about anything you say.  She started dance class, the girl loves to dance.  She is loving every minute of it.  Can't wait to watch her and her sisters dance recital in May. Ever since her sister started soccer last year she has wanted to join in so badly.  Well she was finally old enough this year and it was the cutest thing ever to watch.  She loved just running up and down the field and being a kid!



She lights up a room just by being there.  It is almost impossible to be in a bad mood around her, she is always so happy and will do anything to make you smile.  She has become obsessed with the horses and loves to ride.  Even becoming so confident to get up there and ride by herself.  So great to watch her confidence grow and for her to able to do anything that she wants to do.  I'm so excited to watch her grow up and blossom into an amazing and inspiring girl!

Happy Halloween!

Happy 3rd Birthday

It sure has been nice to not have to update the blog with updates from visits to doctors. So much so I haven't posted in awhile... a long while, sorry about that. Where ooh where to begin. Well, since my last post  Braylee has become a BIG sister!! Her baby sister Maddee Thomas was born May 12th. The girls absolutely adore her and can't get enough of her. The best big sisters... almost too much so. ;) The poor baby has no bubble.
 Braylee is now 3 years old, can you believe it?!! She is an amazing little girl, never a dull  moment when you are around her. She makes us laugh every single day. She is 32.5 lbs and 38 inches tall! 

Growing, growing girl! Her head circumference has been consistent so that is great news!! We got to celebrate her birthday in the Big Horn Mountains with a group of amazing friends. She got a minion party theme. She loves the minions. She got a minion piñata and cake, all up in the mountains in the middle of nowhere. We sure had fun!! For her birthday she got a pickup and horse trailer and a bunch of livestock to go with it. She has obsessed with her "moo", it's a toy calf that she carries EVERYWHERE with her. At least it's a small toy so it's not too big of a pain to drag everywhere. Unless you are trying to find the lost moo then its size becomes a problem. ;)  So we thought this would be the perfect gift to go along with her obsession.  Ooh boy!!!! We also got to jump down and see Braylee's great grandma on our last day of camping and have another birthday party.  Spoiled little girl got 2 birthday cakes!  She had tons of fun seeing everyone there.  

Braylee has been thriving in every way!! Her speech has completely taken off, talking in full sentences. Amazing us everyday. Her older sister  Charlee keeps saying "she can say almost every word now!!" Just one of the greatest feelings in the world! 

Her fingers have healed up nicely. She has a little web creep (regrowth of the web) so we'll see what her surgeon thinks when we go back for her check up in December.
She has had a nice break from seeing her
specialists, but at the end of August we are back at it again. She will be seeing her dentist, orthopedic surgeon for her feet, pulmonalogist, and plastic surgeon.
Her dentist is a routine cleaning and check up. We are seeing her orthopedic surgeon about the spot on her foot that has been bothering her. Our plan was to wait it out and hopefully get by without another surgery for a little while but that looks like it's not going to happen, she is complaining about it hurting more and more. So I'm afraid we will be scheduling a surgery to take care of that.
I called pulmonary a couple weeks ago because I think her cpap pressure needs to be bumped back up to 6 instead of the 4 she is on now. When we did her first sleep study they determined she needed to be at a 6 but it was just too high to get her comfortable to the cpap at 2 years old so they turned it down to 4. Now that she is 100% compliant there are nights that I think she needs that little bit of extra push from her cpap, especially when she doesn't nap or has a really busy day. Her apnea just gets really bad then even with it on. So we will be going over her progress and talking to the doctor about what she thinks needs to be done. My guess is we will have to schedule another sleep study but maybe not we'll just have to see.
As for her visit with hey plastic surgeon, we have started to notice a "peak" on the top of her head at the tip of the scar. It has been causing scabs to show up. I called her plastic surgeon and talked to him about it. As of right now he wants us to keep an eye on it and if it gets worse, gets sensitive to the touch, or starts to drain then we will need to bring her in because it could be a sign of a bone infection.... Ugh not something you want to hear. We hope it's just a plate that is just taking longer to dissolve than usual and that's what's causing all the irritation. So I am going to be scheduling an appointment to see him since we are already going to be down there just better safe than sorry.
Her pediatrician at her 3 year check up said her tube in her right ear was starting to fall out so I'm letting her ENT know and we'll see what he wants to do. She has had the same set of tubes for 2.5 years!! Quite impressive I must say!

She will be starting preschool in the fall and I think she is absolutely going to love it.  We have been doing an "introduction" to preschool with a few other kids that will be starting just to get them use to the environment and getting the swing of things. She has been loving every minute of it. Doesn't even bat an eye at me when I drop her off; its an "okay, bye mommy". One of those things where in the back of your mind you wish they would shed a little tear but then so glad she loves it that much where she feels comfortable without me there. It really helps that the staff there are really amazing.

So I will be having more medical jargon updates coming at the end of the month but until then we are enjoying our 6 month break from her doctors. Keep on keeping on!!