Kai finally has a partial diagnosis. Do I feel better? Does everything make sense now? No, but it is confirmation of what I already knew. Kai has Spinal Muscular Atrophy. There is no treatment. They tested him for it months ago and the test came back negative. They did a nerve ending test yesterday and with the results of that and his muscle biopsy they now know he does have SMA just not the most common form. They took blood this morning from him to start testing to see which other form he has. The Dr. gave me the news over the phone yesterday. When he was done explaining the results he said, "you win parent of the year award, I have never had a parent stay as calm as you with this kind of news.” I did stay calm but now this morning is a little harder. I don’t understand why it is so hard to get news like this. I already knew where Kai was going. I sure wish I had been wrong though.
Thank you for sharing Kai's life. What a beautiful baby, I'm so sorry for your loss. My lil guy is very simalar to Kai, and we have the same struggles for a long time trying to get the dr to listen.. Still no real diagnosis for us... I also love your toy ideas! I'm gonna make a basket for my Gabe. Take care, Erin
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