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| Ready for the parade |
Back in May she had her dance recital and danced her little heart away. That girl loves to dance and absolutely loves her dance teacher. She also got to dance in the Green River Rendezvous parade this year. Her poor little feet couldn't handle the demand of the parade so she got to sit up in the bed of the truck for most of it and do the dance while they drove down the parade route. She had so much fun!
She starts her last year of pre-school this fall and can't wait for it to begin. She loves her teachers and her friends! I can't believe she has only one year before she starts kindergarten! Time sure does fly!
Since I last posted back in March, Braylee has had her facial x-rays done. Those came back and come to find out her nasal passages are around 95% blocked by bone. No wonder her CPAP needs to be at a pressure of 10 (which is high for most adults). So doing the Sarpe procedure will greatly help her out. As of right now we don't know when this surgery will happen, we are still waiting to hear from her plastic surgeon since he was going to talk with her orthodontist and come up with a game plan. This surgery will require A LOT of traveling and with it being so late in the summer already I could see it being spring/early summer 2018 before we do anything. Mainly because I don't want to have to be driving the 3 1/2 hours to Salt Lake City every week on winter roads. But of course if they decide we need to do it sooner rather than later we will do what we have to.
Another thing her facial x-rays showed is what our orthodontist thought was intracranial pressure. I called her plastic surgeon about this and we both decided it was best to do a CT scan of her brain. So on April 21 we went back to SLC for a CT. We initially scheduled for her to be sedated but I wanted to try it without at first since being the rockstar that Braylee is I thought she would be able to hold still for those 5-10 minutes it takes to do a CT. I prepared her by showing her videos on YouTube about what to expect and the whole process. So they took us back to the room and brought in a counselor to help talk her through the process and before she even starts talking to Braylee, Braylee gets up on the table, lays down, puts her arms to her side and said "I'm ready". The counselor was so shocked and impressed that she didn't have to do anything to help this 4 year old out. She said "well I'm not needed here" and praised Braylee for being so brave. That's my girl!! Braylee sat super still through the whole scan and we were in and out of the hospital in under an hour. The results came back that her ventricles in the middle of her brain are still open and not constricted at all but he did see some constriction on the outside ventricles of her brain but he said it wasn't anything emergent at this time and we will just keep a very close eye on it. So needless to say she will probably be needing another cranial surgery in the future and we are glad that it isn't emergent and we can just watch her for now. We go back in for a check up with her plastic surgeon and orthodontist in September.
In May we went back to SLC and saw her orthopedic surgeon for her feet and spine at Shriners Hospital for Children. She took over 10 different x-rays and of course Braylee was their star patient for the day! Her fusions on her spine still look good and her feet still look good. We will just continue to watch the "Apert bump" on the bottoms of her feet and do surgery when they get to be too big of a problem. We will go back for another check up in a year.
Still some things we need answers to but for now we will enjoy our time with no surgeries or hospital stays! She continues to show us how amazing she is and we can not wait to see what else this amazing little girl can teach us!
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