Today started pretty early today. Emmett got up at 5am again this morning. The very first thing he does is go replace the battery in his Android4Autism device. He does this all by himself. Its pretty impressive considering he's only 3 years old and many grown ups wouldn't know how to do this. We have 4 appointments today, 3 for Gavin and 1 for Lizze. Gavin will be at all of his today but I'm not sure Lizze will be able to get out of bed today. This is going to be a long week and I'm starting the week off completely exhausted. I hope Monday is kind to all of you out there. Posted from WordPress for Android

Today was a fairly typical day for the Lost and Tired family. I thought it would be interesting for you to experience my daily life for just 1 minute of 1 day. On a typical day, Lizze is down with a migraine or another fibromyalgia related reason.  Emmett seems to either be starting or ending a fever flare. There never seems to be a time where he's not experiencing the symptoms of Periodic fever, aphthous stomatitis, pharyngitis and adenitis or PFAPA for short. I think we have mistakenly been referring to this as Marshall's Syndrome and I'm not sure that's correct but it is easier to say than Periodic fever, aphthous stomatitis, pharyngitis and adenitis. Either way, Emmett seems to be struggling with the symptoms of this quite often. The entire Lost…

How do you know when you have to much on your plate? I spent all day yesterday, thinking it was Sunday. I have no idea why I was so confused. Exhaustion? Anyway, I had the boys in bed on time last night because I thought they had school this morning. Lizze let me sleep in this morning -thank you honey-...... On school days, when she's feeling up to it, she'll get the boys off to school while I'm sleeping. I had assumed she had done the same thing this morning. However, when I woke up to some chaotic noise, I looked at my phone and it was 9:00am. Panic set in and I rushed out of bed and got dressed as quickly as I could. I made it halfway down the stairs…

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