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Showing posts from June, 2017

Our journey....

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After two years of the unknown...Ryder is finally not a mystery. He had very extensive genetic testing and the results showed he has something called: Spinocerebellar Ataxia Type 29 -- I know, a mouthful, huh? The shortened version of this very rare genetic condition is known as "SCA-29". Some of the symptoms of SCA-29 are: 1. Ataxic or Shaky Movements 2. Lack of Balance 3. Lack of Coordination 4. Flexible Joints, Low Muscle Tone 5. Wide, Weaving Gait 6. Fine & Gross Motor Skill Delay  7. Delays in speech.... But he does not have a speech delay. Although this is a non progressive disorder, it may get worse slowly over time, but the only way to know is time! His OCD and behavioral issues are likely related to this disorder. This little guy is so strong and so smart! He is so interested in reading and he's almost there! He knows every letter and recognizes them when he sees them! He knows how to count up to 30 without​ any mistakes. He is so determined and will go far ...