My Beautiful Brain 2017 convention
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Scoliosis and Schizencephaly
It has been two weeks on Wednesday since Noah's spinal fusion and I will admit fear was a huge issue with this one. Never did I imagine seeing my little boy look so banged up. His eyes were bloodshot, black and blue with a very swollen face. The night before I was prepped with the fact Noah very well may not make it through or quite possibly require a trach for the rest of his life.. Scary and sobering all at the same time. After xrays the day before we learned Noah's scoliosis had reached 94-97 degrees which is 40 degrees more than just a year ago which convinces me that scoliosis is indeed a huge part of schizencephaly. We waited until Noah was old enough to avoid multiple surgeries through the rest of his life....one and done! But holy cow scoliosis is hell. The constant fighting it, struggling to make our own braces, 6 years or positioning and holding off to avoid going back under the knife. It would appear that all that hard work made a difference and Noah will never ...
Island dolphin care sixth trip
This year in May we celebrated Schizencephaly awareness day and noahs sixteenth birthday with two other Schizencephaly families at noahs favorite place....Island dolphin care. So many great memories were made this year we've decided to take him back this August making sure we continue his ongoing interest in the program.
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