I need some advice for people in the know. Last Friday, Emmett was at the immunologist. She manages Emmett's rare fever disorder. This was just a follow up visit but we left with new concerns. I mentioned a few times how Emmett complains of pain in his joints, mainly his elbows. Something I have noticed is that his hands are almost hot to the touch, even when he's not running a fever I forgot to mention that while we were at the appointment, however, because of Emmett's joint pain, the immunologist is concerned that Emmett may have rheumatoid arthritis. We are waiting for our appointment with the rheumatologist. This has us a bit worried and I'm wondering if anyone has had any experience with juvenile rheumatoid arthritis? My second question…

The 2nd part of our Canton Repository interview will take place tonight. The reporter is going to meet with Dr. Pattie and myself tonight. This will provide verification of everything. This is a positive thing because even putting this fundraiser aside, this could help to spread Autism Awareness in a city solely lacking it. Hopefully, things will go well and we can all connect tonight. I'll let you all know how it goes. Please wish me luck :-) Posted from WordPress for Android

Today has been pretty crazy. I was on my own today because Lizze is in pretty rough shape today.  My day began around 5 am with Emmett waking up.  After getting the other 2 boys up and dressed,  Emmett and I took them to school.  I had to bribe Emmett with sausage from McDonalds in order to get his cooperation this morning but it was worth it because he actually ate it.  After that,  we had to hit the pharmacy to grab some things for Lizze. When we got home,  Emmett got a bath and then a nap. While he was sleeping, I caught up on some phone calls that desperately needed to be made.  When Emmett woke up,  I fed him lunch -which he didn't eat- and then we…

I'm a man of many talents but did you know I was a stuffed animal plastic surgeon? Probably not. I only ever break out this skill in the most desperate of circumstances.  One such circumstance arose the other night. Elliott received a Hello Kitty stuffed animal wearing an Angry Birds costume. The problem was, as Elliott out it, "Hello Kitty has lazy legs" - see the before picture-. He had been using Scotch tape in order to hold the legs in a better position. However, living under the same roof as Emmett, makes this fix, quite temporary. Emmett doesn't tolerate tape or tags on clothes or stuffed animals. As soon as Emmett noticed the tape, he freaked out until it was removed. This presented Elliott with a problem. How do…

This morning, Emmett informed me that the soap in the bathroom was to dirty to use. I'll be honest, I don't see the problem here. The label is partially rubbed off from use but it doesn't look dirty to me. However, I'm not Emmett and he can sometimes see things a little differently at times. It's interesting to see things through his eyes. While I may not always be able to see the same thing or in the same way, I do like to gain as much perspective as possible. Having said that, I'm at a loss with this one. Both bars are pure white, without even a hint of being dirty. According to Mr. Emmett John, the one on the left is dirty, so he needed to open a…

The boys are off to school and Emmett has eaten breakfast -which is great since he hasn't been eating-... Lizze is in bed and will likely spend the whole day there. She is either having a major symptom flare or she is actually sick with the stomach flu. It really hard to tell with her because she experiences flu-like symptoms all the time. It's difficult to know what is what. I'm gonna have to make special arrangements today as a result. Gavin is supposed to have therapy today and I going to have to see if my mother can take him. I could possibly take all the boys with me but it's an hour and a half long today. Not to mention that Emmett wouldn't understand why he was there…

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…