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Happy 2nd Birthday Alice!
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I can't believe our baby is 2! She has brought us so much joy over the past 2 years. She has truly blessed our family. Alice had a wonderful time celebrating! She had so much fun at the Children's Museum...and she loved her Frozen cake!
We followed up with Dr Magge this week. Overall, he think she looks great and has no immediate concerns. He thought she had made great progress and said she would continue to progress over the next few years. He reminded us that since she was on the older side for endoscopic surgery that her results may not be as good as a younger baby, which we knew going in, but we chose to go with the least invasive option possible, that was really important to us. We didn't want her going through a larger surgery when her medical concerns could be treated with the endoscopic surgery. He thought her facial asymmetry looked great and had improved a great deal. He said that is not something you get with the larger CVR surgery. Those babies may not have a flat spot on their forehead, but their nose and mouth cannot be corrected in that surgery. We did realize that and I am glad that we chose this option...I feel that it prevented further asymmetry of her face and also "stopped craniosynostosis in it's tracks" as a friend put it.
Dr Magge told us that he will followup with us again in 6 months and track her growth and her progress. He had no concerns this week and felt that there was enough room for her brain to grow...but that it something he will continue to watch and monitor for MANY years to come. Signs for us to look out for would be headaches, restlessness, irritability, etc....signs that would point to pressure on her brain. Things he is looking for is progressive growth of her skull. He takes many different angles of measurements. If at any times she stops progressing or growing at a normal rate, that would be a reason for concern. We don't anticipate this happening and praying she will be in the clear of more surgery. However, we are very glad he is monitoring her so well.
As always, if anyone that has stumbled across this site and is looking for more information or would like to talk to me about Alice's journey, please feel free to email me at AliceinCranioland@gmail.com or contact me at www.facebook.com/AliceinCranioland.
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One of her favorite gifts |