Lizze and I have noticed something about Gavin today that we hadn't noticed prior.  He seems to start complaining about his health problems, of which there are many, whenever he has to do something he doesn't want to be doing. Gavin does have several, very serious health problems.  He has an autonomic disorder, immunodeficiency, mitochondrial disease (most likely) and some type of degenerative neurological disease as well.  The autonomic disorder is the most frequent problem for him as his heart rate and blood pressure become unstable and he has to be hospitalized.  He experiences various symptoms,  from chest pain, numbness, nausea to blurry vision.  These are all very real symptoms and can mean an impending autonomic crisis and very likely several days in the hospital.  Having said that, there seems…

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I wanted to take a few minutes and talk about the fallout from yesterday's RAD tantrum. Elliott was probably the most visibly affected by the events of yesterday. He doesn't want to be in his room alone. When there,  he breaks down in tears. Elliott is so anxious to start with that these tantrums push him over the edge. It can take days for him to relax and come down from his anxiety high. On the other hand we have Emmett.  Emmett tends to become more easily frustrated and therefore more aggressive. This also makes him much less cooperative. Lizze is barely able to move today as she in a fibro flare.  There's no doubt that the stress from yesterday has exacerbated her symptoms. Stress is a fibro sufferers worst…

Well our precious break is now officially shot to hell.  Gavin didn't go to the grandparents for obvious reasons and Emmett decided that he wanted to come home.  Oh well.  Whatcha gona do? As much as we need the break, especially after a day like yesterday with Gavin,  our boys are always,  always allowed to come home.  Emmett was so cute. As soon as he got home,  he just kept snuggling with Lizze or myself.  He was so happy to be home and honestly, I was happy as well.  :-) Tonight, he's sleeping in his own bed and I got to tuck him in.  :-) This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct…

Today has been a weighted vest kinda day. Elliott and Emmett were both on sensory overload today as a result of Gavin's house shaking tantrum. I had a rough time getting them to relax, even after Gavin was at the hospital.  Until you're in the middle of oe of these tantrums, I don't think you can fully appreciate how traumatizing they are, especially for the E's. Anyway,  I thought I would break out the weighted vests and see if the weight and compression would help calm them down. It worked,  for the most part anyway. They were really worked up though and I think the vests could only help out so much. Having said that,  things eventually settled down and we all watched Ice Age and relaxed on the couch. …