Happy 5 year Cranioversary!!! It may seem weird to some to celebrate a cranioversary; this journey with Apert Syndrome started when Braylee was born but to me it became more real when she had her very first surgery. Which happens to be the biggest one to date. Five years ago Braylee was only 6 months old when her very skilled surgeons took her into the OR to perform a Cranial Vault Reconstruction to open up her coronal sutures that were prematurely fused together. So they took her skull off, broke it, and then put it back to together like a little puzzle to make room for her amazing brain to grow. Today always brings a whirlwind of emotions, happiness, and thankfulness. But it also brings us back into reality and the craziness that comes with Apert Syndrome. Braylee is such a happy, bubbly, and funny little girl. She makes our days brighter and better. Apert Syndrome is a part of her but it doesn't define who she is. She has no limits and we will do anything to help her along the way to make her life better and more enjoyable. She is going to go places and do amazing things, I just know it.
We have scheduled her 7th surgery for April 20, 2018. This surgery is called the Sarpe. They will go in and cut above her permanent teeth and insert a device to expand her palate and it will also widen her nasal passage some too. We will be turning this device for 4-6 weeks then we will stop and wait for the bone to grow and fill in where it has expanded. This surgery will give her more room for her teeth and hopefully help with her airway. We will be traveling to Salt Lake City a lot for check ups after this surgery. They have to make sure everything is moving how it should. So we will have to travel once a week for the first 4-5 weeks and then it will become a little more spread out after that if everything is going as planned. She will be on a strict soft foods diet for at least a month. Challenging me to come up with a variety of different meals.
We had an amazing Christmas and New Years with family. She is enjoying her last year of preschool and couldn't be more excited to start Kindergarten in the fall. It is snowmobile season so she has been spending as much free time as possible driving her snowmobile around and doing "tricks". She loves her dance class and dancing all around the house with her sisters. Enjoying life just like any 5 year old.
Happy 5 year Cranioversary!!! It may seem weird to some to celebrate a cranioversary; this journey with Apert Syndrome started when Braylee was born but to me it became more real when she had her very first surgery. Which happens to be the biggest one to date. Five years ago Braylee was only 6 months old when her very skilled surgeons took her into the OR to perform a Cranial Vault Reconstruction to open up her coronal sutures that were prematurely fused together. So they took her skull off, broke it, and then put it back to together like a little puzzle to make room for her amazing brain to grow. Today always brings a whirlwind of emotions, happiness, and thankfulness. But it also brings us back into reality and the craziness that comes with Apert Syndrome. Braylee is such a happy, bubbly, and funny little girl. She makes our days brighter and better. Apert Syndrome is a part of her but it doesn't define who she is. She has no limits and we will do anything to help her along the way to make her life better and more enjoyable. She is going to go places and do amazing things, I just know it.
