It’s been another exhaustive day in the house of freakishly rare, and frustrating medical conditions. Emmett wasn’t at school again because of a fever. He’s now been out of school since last Thursday, and while this is outside of anyone’s control, it makes me uncomfortable. 

The school is very understanding and we do t have any issues in that area, plus we do have a few notes from his doctor, but it doesn’t cover everyday. 

Emmett did pretty well today. He wasn’t as moody as he has been, but his fever is still present. It comes and goes throughout the day. We have to adhere to the twenty-four hours without a fever before returning to school rule. 

The problem is that while we may be confident this is a fever flare, and he was negative for Strep, there’s no way to know for sure that he’s not fighting off something else. This is where we find ourselves stuck, with little or no recourse. 

Personally, I’m positive he’s in a fever flare and there was any question in my mind, the pictures below clinched it for me today. 

No one knows what to do. We can’t get a blanket excuse from his doctors because without definitive proof that he’s not actually sick, they can’t say with certainty that the fever is the result of his fever disorder. 

I’m so lost right now. I don’t know what to do anymore.

Lizze and I were talking tonight and there isn’t a clear direction to go in. We are of course, worried about school. Having said that, there are bigger things to worry about and that’s how to help Emmett. There’s only three weeks left in the school year and that will take some of the stress off of us, but that’s still three whole weeks worth of not knowing what to do. 

Our priority is making sure Emmett gets whatever help is available, and ensuring that he is as comfortable as possible. 

I’m completely and utterly overwhelmed right now. 

Emmett’s supposed to be at the dentist on Friday to fix his chipped front tooth, but I don’t know what they are going to do if they see his mouth full of sores. 

Have you ever reached a point with your special needs child, when you want to sit in a corner and just cry? That’s where I am right now..