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!!

Check ups 2/18/15

10 fingers!

So happy

On Wednesday February 18 we were in Salt Lake  Braylee had 3 doctor appointments and it resulted in nothing but good news!

Her first appointment was with her pediatric dentist.  He said that her teeth look good and there are no cavities. They weren't able to do a cleaning this time but were able to get some flouride put on so that is at least something. There is one tooth that I have been a little concerned with coming in since it hasn't fully come through and is smashed between 2 others.  He said that it most likely has come in as far as it can and it will stay that way since there is not really much room for it, so we will just have to keep an eye on it. We go back in 6 months.

Alvin and the Chipmunks are starting to grow on her

Her second appointment was with Shriners for an impromptu appointment for her feet. I called last month about it and since it only really bothers her when she is barefoot I decided we could wait for a consult until we were coming to town.  She seems to be a little more comfortable when she has her shoes on with her orthotics so she gets to wear her shoes around and only every once and awhile will she complain that it hurts this way.   She has this spot on the bottom that is really common in Apert sydnrome.  It is a bone that is starting to protrude down between her second and third toes most likely from the fusion of the bones. The doctor came in and was really quite shocked at how fast it came on since we saw her in October and there wasn't anything.  It is really bad on her left foot and not as noticeable on her right.  She said her first thought is amputation......yeah talk about hitting a brick wall in shock/horror at that!!!  Not even an option in my book! We then talked some more and I mentioned that others with Apert have it shaved down and she said she would be more than happy to do that and then I asked if messing with her orthotics would help for a little while.  After some discussion we decided the best route for now is to change up her orthotics to give her more cushion where her bone is protruding and delay surgery as much as we can.  Especially since she is still growing and this spot will most likely grow back resulting in yet another surgery after that.  Her new orthotics will be ready in about 3 weeks and in the meantime we are going to keep her comfortable with the ones she has now.

She loves sledding

Silly girl

Her third and final appointment was with her plastic surgeon for a check up on her head.  He was very happy with her head growth and said that soft spots that we have been watching for a year now that haven't completely filled in yet are small enough to not be an immediate concern.  If they don't fill in, in a couple of years while her head continues to grow then he will intervene and fill them in. We don't have to go back for another check up for a YEAR!!!  What a relief!!

On another note her latest finger releases are starting to have some web regrowth (sadly quite common).  They have grown back up around a 1/4 of an inch now and still going.  I will be calling her surgeon about this and see if she wants to see her in the near future or if she still just wants to wait the year to see us.  The only thing to do is another surgery to release these but we'll see :'(.

Spacing should be even with the space next to it

Anyways she is getting to be such a sassy little thing.  Her 2 year old attitude is really starting to shine through.  Her sentences and double words are really coming together.  She is a talking fool always wanting to tell a story!  Her occupational therapy has really been paying off.  She loves to put headbands on and do her hair.  Something her shoulders restricted her from doing until we started therapy over a year and a half ago.

She is 100% compliant with her cpap now!!!  She is feeling great in the mornings so much so that she thinks that she wants to start kicking naps!  She isn't afraid to walk around and play with it on while she "naps".  I will hear a bunch of clanking and stuff going on over the monitor when she is suppose to be "napping" and walk in and she has toys in her bed and all over her room and is happy as can be over what she has achieved with her cpap on.  What a little stinker she can be haha!

So a few things we still have to keep an eye on but I am happy that we don't have any immediate concerns and can have a nice long break from doctors!!