I have been explaining in words what Emmett is experiencing. However, words simply aren't enough. Emmett has something called Marshall's Syndrome. Basically, he runs a fever for about 10 days -give or take- and his mouth breaks out in cold sores. When I say cold sores, I mean many, huge, extremely painful cold sores. At 33 years of age, I have never seen anything like this. I can't even imagine the amount of pain he is in. It's heartbreaking that there is literally nothing we can do about it.  In these pictures you will see the cold sores currently on his tongue. One, literally takes up half of his tongue, long ways. The inside of his mouth is covered as well. This is why he is not eating very well.…

I realize that Elliott is struggling with anxiety but good lord, is it ever getting old. I'm keenly aware that it's far worse for Elliott but damn, it headache inducing and beyond frustrating. As time goes on, it gets worse and worse. There has to be something I can do to provide him with relief. Problem is, I don't know what that something is. For now, I just continue to extend to him both compassion and understanding. In truth, the whining is very quickly becoming like nails in a chalk board for me and I know Lizze is struggling with it as well. Heck, I know Elliott doesn't di it in purpose, so it must be exhausting for him as well. There is no way to really make our lives…

This week is going to be extremely busy. We have at least 14 appointments before Friday. Monday will start things off with 4 appointments, 1 for Lizze and 3 for Gavin. Monday with also bring with it a bunch of phone calls. We have to get Gavin into the Mitochondrial doctor and Emmett into the rheumatologist. Things are gonna be hectic this week without question. However, hectic doesn't have to mean bad or impossible. I'm going into this with a positive attitude and I will attempt to maintain that at least through lunchtime tomorrow :-P Posted from WordPress for Android

I made the mistake of mentioning to Elliott on Thursday night, that he was having a hearing test, Friday after school. I was thinking.....well to be honest, I don't know what I was thinking. Elliott is our most typical child. While he has Aspergers, most people wouldn't notice anything. Having said that, Elliott is not without his challenges.  The biggest of which is anxiety. Elliott is a walking, talking, compressed balk of anxiety that can meltdown at the slightest disruption. I said above, that I didn't know what I was thinking when I mentioned to him about his doctors appointment.  No sooner did the words leave my mouth.....Elliott slipped into full blown panic mode. There is no rationale to his panic and absolutely no calming him down. He literally cried…

The other day Elliott was looking for his -kind of working- DSi. Emmett has been playing with it lately and Elliott is typically very patient with him. This time however, we couldn't find Emmett or the elusive DSi.  Emmett, that little stinker, had hidden himself under the kiddie picnic table. Because it was covered with a sheet I didn't see him at first. I gotta give him credit for creativity. Posted from WordPress for Android

I was reading my friend, Jill's blog last night. I was inspired by her expert use of colorful language while writing this. I have a ways to go in honing that skill but I hope this makes you proud Jill.... :-) I dropped a censored f-bomb :-) Emmett did really well at the immunologist. He charmed all the nurses....as he always does. When his tongue was examined they found many, many cold sores. He has two actually on his tongue. One is about an inch long and shaped like a football. The other is is a bit smaller, but not by much. He also has them all over the rest of his mouth. He's barely eating and as a result, has lost about a pound since Wednesday night. The prednisone…

I have never bought into any of the special diets for kids on the Autism Spectrum. Everyone has the right to think and do what is best for their family and I totally respect that. My mother has Celiac Disease which requires the GF/CF diet or her life is in danger. It's pretty tedious. Our lives are complicated enough without having to worry about something that would have little or no positive impact on the boys, aside from the health benefits. We have a hard enough time with Emmett's food allergies. He is allergic to milk, lactose and egg. Which brings me back to the point of this post. I had to make a run to the grocery store this morning because Emmett would not eat or drink because his…

Today's Victory is brought to you picture-less, by Lizze, Emmett and myself..... We had a pretty busy day today. Emmett has been having a very rough day do his recent flare up. Lizze has been having a rough week in general. However, we had an interview with the Canton Repository this afternoon. I managed to get the house presentable before anyone arrived. Lizze managed to get Emmett dressed -anyone following us for awhile will know difficult that usually is- and Emmett managed to keep his clothes on for most of the day. Most importantly, he managed to keep his clothes on while we were being interviewed and behaved like an angel. Seriously, he was perfectly behaved. He spent the whole time snuggled up with Lizze under our big fuzzy blanket.…