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.
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| 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.
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| 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!
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| Soccer in the rain |
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| A ride in a firetruck |
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| spooky witch |
