It is really crazy to think that it has already been a year since Braylee had her cranial vault reconstruction (CVR) . It was one of the scariest days of our lives, having to hand her over to her anesthesiologist and watch him walk with her down that OR hall to have the top of her skull taken off, broken, and put back together. We waited for 5 hours for her surgery to be complete and thankfully everything went as smoothly as possible. And one year later her sutures are still open like they should be and her head is growing just like it is supposed to. Her beautiful blonde curly hair has grown out so much that she can have full pigtails :)!!
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| Look at those curls on that perfect head !! :) |
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| Scar 1 year later |
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| Pigtails!!! :) |
At her 18 month check up she is a whopping 22 lbs. 5 oz (47th percentile), 32 1/2 inches tall (74th percentile), and her head is right where we want it to be at 47.4 cm which is in the 80th percentile! Growing little girl. :)
Braylee is a walking fool now. She is just go, go, go and getting into everything. And guess what?? We will take it!! When she was born we didn't really know if she would be able to walk with her webbed feet and if she did we didn't know how well. But as usual she isn't letting her disadvantages hold her back. She may not talk as much as another 18 month old but she can still say a few words and she understands EVERYTHING that we say. We can ask her to go and get something or to do something and she does it. It is so great to "see" the little wheels turning in her mind as she processes what she needs to do. She is a smart little thing. One of the many reasons we are so grateful for her CVR so her smart little brain can continue to grow! As for the talking, that will come in time. She is learning new sounds everyday since she had her cleft palate repair in May 2013. Soon she will be jabbering away and giving her sister a run for her money on who can talk the longest......that shall be one heck of a competition. She will be starting early intervention speech therapy on January 24. We don't know what all this entails yet but we will know more then. She is learning to sign more and so far can sign "more", "please", "all done","milk", and we are working on trying to figure out new signs for certain words due to the limitations to her fingers and hands.
She amazes us and everyone else around us with what she has accomplished. She is a determined little thing and always has to try to figure out how things work....may end up being an engineer just like her Daddy. :)
We go see her orthopedic surgeon for her hands and her other orthopedic surgeon of her feet on February 3, she also gets to go have her first visit with her pediatric dentist that day. We are so happy to have found one in Salt Lake City who has a handful of other patients with Apert Syndrome and a cleft palate. This will make things so much easier in the future with figuring out what all needs to be done. She now has 4 teeth and loving it!! She runs her tongue across her teeth all the time, getting a good feel of those bad boys.
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| The classic terrified Santa picture. |
The year 2013 was one crazy year for this family and we are VERY happy that we made it through it happy and healthy. Yes we had those times when Braylee went in for each of her 4 surgeries and we put her life in her surgeons hands and we were so scared, but each time it only made us stronger. She proves to us each time just how strong she really is. Braylee has touched so many peoples lives already and she is only 18 months old (as of tomorrow). She inspires people every day and she doesn't even know it. She has taught us to take things one step at a time and not fret over the little things. Being "different" isn't as bad as everyone comes to think it is. It just makes you that much more wonderful.
