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Another episode

  Sanfilippo is a thief. It literally robs my daughter of every aspect of life. It wasn’t enough to steal her mobility, voice, and ability to eat independently...it also wreaks havoc on her body day in and day out. There are days that go by where she is perfectly happy and content. Then on the day you least expect it...chaos. We have spent countless hours trying to figure it out. Is it a headache or migraine...her bowels....a cold coming on...her joints...the pain from yet another fall? It could be anything.  Nights like these are the worst, especially when Michael is gone for baseball. I try my hardest to keep a level head for the kids. I don’t want them to see how deeply this affects my heart. I try to cuddle Bridget to calm her, but she typically does not want to be touched during an “episode”.   I go into problem solving mode. Does she have a temp, when did she go to the bathroom last, does she need another snack/something to drink, another allergic reaction? The possibilities are

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