I can not believe she is 6 years old! Time is sure flying! She had a wonderful birthday party with a bunch of her friends. They had a blast playing in the park and then breaking open a pinata! They even got to ride in the horse drawn wagon that goes around town. They all had a blast!
I can still remember the day she was born like it was yesterday. I had a scheduled c-section since our first daughter had to be born via c-section. It was all rainbows and butterflies until they pulled her out and then the operating room went dead silent, I heard Braylee crying so I knew that wasn't why they were all silent. Jeff went over to see her and all I hear is my OB in a very worried voice telling them to get samples of this and that and send them off for testing STAT. Shortly after all of that Jeff comes back over and I can tell something wasn't right by the look on his face and I asked him what is going on, he didn't say much, just that Braylee was ok. Then the pediatrician comes over really fast and tells me that Braylee has webbed hands and feet, a cleft palate, and her forehead is protruding, then she ran out of the room. Jeff was not very happy with her at this point because turns out he didn't want to tell me anything until they had finished closing me up. Thinking I would panic or freak out on the operating table. I told Jeff to go with Braylee and that I would be fine, I just wanted him to be with her. They finish up and take me to post-op where I got to see Braylee for a total of maybe 2 minutes before they rushed her off to get a CT. Jeff tried to go with Braylee to the CT but they wouldn't let him in so he came back to me and we just sat there, I'm not really sure we said very much to each other at that point. The worst case scenarios just running through our minds of what is going on with our daughter. We get back to the room and finally get to see Braylee again and get to looking at her and she's breathing on her own and doing everything that a newborn should. We fell in love instantly and knew she would do great things. The pediatrician comes in and says that she isn't sure what syndrome she has so she was going back to the office to do some research. At the same time Jeff is already on his computer doing his own research and after a couple of hourse he came up with it's most likely Apert Sydrome. Braylee was born at 1:03 p.m. and we finally got some answers from the doctors around 6 p.m. One of the other pediatricians in the practice came and told us that he has been going over everything with Dr. Wheeler and they are pretty certain it's Apert Syndrome and they have to send some blood samples off to North Carolina for testing to be sure. He said that it is very rare and that in all of his years of practice he has only seen it once back in the 70's; 1 in every 160,000 births. It was a whirlwind of a day and one that we will never forget. I don't think anyone who was in that operating room or the maternity wing will ever forget either. It has been a whirlwind 6 years ever since.
It has been one our busiest summers with buying a new house, selling our old one, moving, surgery, post-op surgery check-ups in Salt Lake City, attending our first Children's Craniofacial Association Retreat (more on that in a minute), and then trying to find some time for fun in the midst of all of that. Hence why this post has taken me over month to write, writing a little bit here and there. We are happy to report that everything is going smoothly with her expansion. We had a couple of issues after this surgery; one was she woke up one morning and her whole right side of her face was swollen. I took her to her pediatrician and we still aren't quite sure what happened but it had to be some sort of infection (sinus or tooth abcesss). They put her on a broad spectrum antibiotic and it cleared it up. One little setback is with this surgery it has caused her palate to concave. Which can happen with this type of surgery. We talked with her plastic surgeon at one of her check-ups and we will play it by ear after the expander is removed and see if it will need to be fixed. Her surgery has been scheduled to remove her expander for September 21st. Now this isn't a big surgery per say but since a bracket on the expander broke when they were putting it in, they had to pin it to her tooth. So now she will have to go under anesthesia and be intubated because of her compromised airway to remove that one little pin. Making it her 8th surgery.
She lost her first tooth the other day and has 3 more that are going to come out soon! If they aren't out by the 21st I can almost guarantee they will be when they intubate her.
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| Jacob Tremblay aka Auggie |
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| Millie Davis aka Summer |
Back at the end of June we attend the CCA Retreat in Salt Lake City, UT. Here we got to meet other amazing families who have craniofacial syndromes or diagnoses. This was one of the most amazing experiences we have ever done. It was so great to officially meet some of the families we have grown to know from social media and also make new friends. Usually when we walk into a busy place with a lot of people around I go into protector Momma mode and I can always see those stares and whispers, and the kids looking scared. Well as soon as we walked into that hotel I didn't feel the need to be on protector mode because it was full of people like us, who know what we go through and know that these kids are amazing and are just kids. You could tell that the older kids were at ease and could just be themselves and have the time of their lives. Talking with the adults that have craniofacial differences was so amazing. They gave all of us that have younger kids hope. Hope that they can really grow up and live amazing independent lives and follow their dreams. Something that we are sometimes afraid to question in the midst of all of these surgeries. I just can't explain how much we needed it and how great our CCA family really is! We also go to meet some of the cast from the movie "Wonder". They are the sweetest kids and they truly had an amazing time playing and talking to everyone at the retreat. We have already booked our slot for the retreat next year!
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| Ellie McKinnon aka Charlotte |
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| CCA group picture time |
I can still remember the day she was born like it was yesterday. I had a scheduled c-section since our first daughter had to be born via c-section. It was all rainbows and butterflies until they pulled her out and then the operating room went dead silent, I heard Braylee crying so I knew that wasn't why they were all silent. Jeff went over to see her and all I hear is my OB in a very worried voice telling them to get samples of this and that and send them off for testing STAT. Shortly after all of that Jeff comes back over and I can tell something wasn't right by the look on his face and I asked him what is going on, he didn't say much, just that Braylee was ok. Then the pediatrician comes over really fast and tells me that Braylee has webbed hands and feet, a cleft palate, and her forehead is protruding, then she ran out of the room. Jeff was not very happy with her at this point because turns out he didn't want to tell me anything until they had finished closing me up. Thinking I would panic or freak out on the operating table. I told Jeff to go with Braylee and that I would be fine, I just wanted him to be with her. They finish up and take me to post-op where I got to see Braylee for a total of maybe 2 minutes before they rushed her off to get a CT. Jeff tried to go with Braylee to the CT but they wouldn't let him in so he came back to me and we just sat there, I'm not really sure we said very much to each other at that point. The worst case scenarios just running through our minds of what is going on with our daughter. We get back to the room and finally get to see Braylee again and get to looking at her and she's breathing on her own and doing everything that a newborn should. We fell in love instantly and knew she would do great things. The pediatrician comes in and says that she isn't sure what syndrome she has so she was going back to the office to do some research. At the same time Jeff is already on his computer doing his own research and after a couple of hourse he came up with it's most likely Apert Sydrome. Braylee was born at 1:03 p.m. and we finally got some answers from the doctors around 6 p.m. One of the other pediatricians in the practice came and told us that he has been going over everything with Dr. Wheeler and they are pretty certain it's Apert Syndrome and they have to send some blood samples off to North Carolina for testing to be sure. He said that it is very rare and that in all of his years of practice he has only seen it once back in the 70's; 1 in every 160,000 births. It was a whirlwind of a day and one that we will never forget. I don't think anyone who was in that operating room or the maternity wing will ever forget either. It has been a whirlwind 6 years ever since.
