Update 11/20/24

Things have been going great! Braylee is enjoying all of the independence of middle school and is starting to settle in with the work load. 

She had a sleep study about a week and a half ago. This was a big step to finding out how much the midface surgery helped her breathing at night. Well I'm happy to report that she has mild apnea and it doesn't require her to use a CPAP anymore!! Here oxygen and CO2 levels were all great. Her pulmonologist said she doesn't need to be seen again unless we feel she is snoring more or her sleep quality goes down. We'll be consulting with her plastic surgeon to see how often he wants a sleep study done since things can change quickly and without us noticing. So I'd rather be safe and have a study done every couple years if we need to. A funny story from getting her hooked up.... They had her all hooked up to all of the millions of wires and skull cap taped on and all they had left was the nasal cannula to measure her CO2 levels. This made her so mad and she refused to wear it thinking she was having to be on oxygen all night. After we tried and tried to convince her she still wouldn't budge. So I told her to hold my hands and told the nurse just to put it on and she'll realize it's fine. We got it on and she looked at us like oh yeah, ok, maybe I overreacted. They then hand me a hot pack to put on her finger to help get the finger poke to check the CO2 levels in her blood. They ask me if I want them to coban it on or if I want to just hold it. Before I could answer Braylee looked at me and through gritted teeth and very mad tone said "SHE CAN HOLD IT". The nurses started cracking up because well that was my punishment for making her do the nasal cannula. She was not happy with me😂. Got to love the sass in these moments. She slept great all night, me not so much. So glad to have that check mark and to keep moving forward. 

Last week she also had an appointment with her dentist and then a consult with the new orthodontist. She won't be getting braces for another year and a half to two years. Then they'll work some magic to get all of her teeth lined out. She definitely will not be an easy case. 

As always she perseveres and shows us all why she is our hero! 

An Unexpected Turn of Events! 9/3/24

So, it all started 2 days ago when Braylee started complaining that her halo was loose. I looked at it and it didn't seem loose to me. Fast forward to the next day and she woke up immediately complaining about her head hurting and halo being wiggly. I check it and sure enough it's super wiggly. Took us awhile to figure out what was going on and then we realized it was the pin sites on the side of her head that were wiggling.  I texted her surgeon and he called me soon after and explained how to tighten them even if they are already tight. As soon as Jeff tightened it, Braylee jumped and did a little scream. So we immediately stopped and decided to just take her in the next day (today). 

Today, we took her to her surgeons office this morning and he looked at her and gave her 2 options, 

1. He could tighten the screws back down. 

2. He could just take the whole thing off right then and there. 

Of course she picked #2!!! 

Once it was off we headed over to the dental office to have her mouth piece removed, which was also super easy!! 

So.... without further ado here's our girl on the other side of this midface advancement!! 

It's been a rollercoaster of a day and we couldn't be happier!! She doesn't have to have to go under anesthesia again and she got it off 13 days earlier than expected!! 

And here are the before and after pictures. So many emotions when I look at these pictures. I just can't believe the changes!