Tuesday, March 28, 2017

The Next Step.





Well we are back at it. More and more doctor appointments!

Rocking the boot
But first, back in February Braylee jumped off of one of those wedge gym mats at preschool and landed on her foot wrong.  I took her in for x-rays the following day and they said it was sprained. A couple days go by and multiple doctor visits later they tell us it's fractured  with a couple possible hairline fractures.  Something didn't feel right to me so after I left their office with Braylee in a walking boot I called her ortho specialist in Salt Lake City to get an appointment.  We just wanted to make sure we were on the right course of treatment since she can be so medically complex.

So on March 7th we made the journey to Salt Lake City. Braylee had a full day of appointments.  Her first appointment was with her ortho to look at her foot.  They reviewed the x-rays and took some more of their own and said there were no noticeable fractures but that doesn't mean that there wasn't one in her growth plate that they can't see on an x-ray and what the other doctors thought were hairline fractures is actually just the way Braylee is.  Now they said with her pain we are to keep her in the boot for 2 more weeks making it 4 weeks since her injury and then everything should be healed or close to.   Mommy gut wins again!  So glad we took her to her doctor!

For her second appointment we go across Salt Lake City for a follow up appointment with her plastic surgeon for her head. Her head has grown a little so we are still on watch and are to let him know immediately if we notice signs of intracranial pressure.   We talked about her midface advancement surgery that he would like to do around 7-9 years of age.  One of the main milestones they want for this surgery is for her to be old enough that she can mentally handle it.  It is a VERY big surgery with a lot of drastic changes that will happen to her face so she needs to be able to understand and process these changes as they happen.  So just something else to keep in the back of our minds.

Back across Salt Lake we go to Primary Children's Hospital for her appointment with her orthodontist.  He is still very worried about how narrow her nasal passages are and wants to move forward with doing the sarpe procedure.  This surgery will widen her palate and her nasal passages. This is one of the surgeries they want done before the midface surgery and if it is successful it can move us  more towards the 8 or 9 years of age range, which would be great.    So we go back on March 30 to get an array of x-rays done on her face/mouth, they will do a mold of her mouth so they have that to study and go off of. .   We will learn more about when they want to do the surgery then.  Now we have gotten used to going into these appointments and getting  the "she looks good we'll see you back in 6-12 months".  So to say we were thrown off guard with an upcoming surgery is an understatement.  I didn't have questions ready to ask or anything that I really wish I would have asked now. I will go in the appointment on the 30th more prepared.  It's all a bit surreal and we don't even have a surgery date yet or anything.   We always knew there were going to be more surgeries and we've gone an amazing 2 1/2 years without a surgery but this surgery is for her greater good.

Her last appointment was a teeth cleaning.  She rocked it of course and we just have to put the flouride on her teeth again once a month to help slow some cavities she has on her front teeth caused from her upper lips being so tight.

So a busy, busy day and we are happy to be moving forward.  Back into fun news, for Christmas this year we went to DisneyLand and boy was it fun!  Braylee got to meet Mickey and Minnie Mouse, Anna and Elsa, Doc Mcstuffins, Crush from Finding Nemo, Elena, and she got to see Lightning McQueen driving down the walkway.  She is a rollercoaster girl, screaming and laughing on every ride.   Her favorite place was Cars Land and she can't wait to go back, asks everyday if she can go see Lightning McQueen again.



It's Lightning McQueen!!





 This winter has been a rough one on the family, we just keep catching every little bug there is to catch.  Bitter cold and we've gotten over 11 yep ELEVEN feet of snow this winter, the germs are thriving!!  To say we are ready for it to warm up is an understatement.  B has learned to drive a snowmobile, what else are you going to do with all of this snow!?  She laughs the entire time she's driving it around.  She's our beautiful, bubbly, happy little girl who absolutely loves her sisters.  Her sense of humor is amazing, always making us laugh. We would do anything to help her way of life so we will continue to put one foot in front of the other and take notes from our brave little girl.  She makes everyone who knows her a better person!  Apert Syndrome will try and shoot us down but it will not win, Braylee will.  And boy will she!!




Pulling sissy behind the snowmobile
Queen of the snow mountain

Olaf!!!
This snow is exhausting!