I wish I could take away his pain

Emmett's in a great deal of pain today and will be for at least the next few days. Yesterday he broke out with mouth sores again and they're pretty bad. His antivirals are keeping things from being any worse than what they currently are but they aren't stopping them altogether. We began doubling up on his antivirals, as we're supposed to when he's in a flare-up and hopefully they will disappear over the next few days. The sores are related to a very rare fever disorder called PFAPA. He's had this all of his life and while it's evolved over the years, it's very, very disruptive. Emmett used to run fevers of 105°F for about ten days, but not actually be sick. He would then be fine for roughly two…


We’re praying this finally helps Emmett with his pain

Today's trip to the immunologist was very trying for me personally. It felt absolutely chaotic and frustrating because everyone was experiencing some degree of anxiety. That made them difficult to manage as well as very, very loud. I always find it odd how my kids can be very sensitive to sound and yet outrageously loud at the same time. Aside from the appointment and the drive being overwhelming for me, the results of the appointment were relatively positive. Just so we're clear, everyone behaved really well and cooperated as best they could. This was a big ask for them and truthfully, it went really well. It was just a lot for me. The staff loves seeing everyone and it's like their major event for the day. I was just overwhelmed…


I’m embracing this moment for as long as I can

Emmett is feeling better this morning and that's awesome. He can't return to school today though because he has to be clear of a fever for 24 hours and he hasn't been yet. If he remains fever free at lunchtime, he'll be good. ☺ Tomorrow we will be at his specialist in Cleveland for a follow-up. This is important because his fever cycles are becoming more frequent and that's causing him a great deal of pain. We also need to discuss the possibility that he's got something called cyclic neutropenia rather than PFAPA. Frankly, aside from accuracy, I don't know if it even matters. I don't believe there's a treatment for cynic neutropenia and we know there isn't one for PFAPA. The only reason it would matter is if treatment…


This is heartbreaking

Mr. Emmett is home from school today because he's not feeling well. He's been struggling with his fever disorder related mouth sores and he's just reached a point where he's sick to his stomach. Poor Emmett didn't sleep much last night and is too much pain to go to school this morning. There's very little we can do to help him. Advil doesn't help and we can only numb his mouth up to three times a day. It's heartbreaking to see him go through this. I desperately wish the was something we could do to relieve him of this condition. 😔

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We might be approaching the end of the road

This fever flare is driving me nuts. I know it's worse for Emmett but I'm still having a really hard time getting him to eat anything. He's had a bit of yogurt, some pudding and I just got him to eat some brown rice. The brown rice was a pretty big surprise actually. The problem is that he's not eating much and there's very little that we can pack in his school lunch and be sure he'll eat any of it. He's not being picky, he's just in a tremendous amount of pain. He's getting a new sore on his cheek and that's probably what's keeping him from eating now. He's been complaining about it today. Thankfully, that's one of the only new sore he's presented with for a couple…


Special Needs Parenting – What it feels like to watch your kids suffer

I've been working for almost a decade to help people better understand what Special Needs Parents go through. Whether it's Autism, ADHD or even fragile health, there's a story to be told and insight to be gained by reading it. Every family's experience can and will be different. Even families dealing with the same diagnostic challenges can and will experience different problems, even though their kids share the same diagnosis. I wanted to attempt to explain what it feels like having to powerlessly watch my kids suffer. The most recent experience I've had, I'm stilling actively living through, and it's in regards to Emmett. Emmett has been living with a very rare fever disorder known as PFAPA. The disorder means that Emmett runs idiopathic fevers. Idiopathic means that the fevers…


Please keep Emmett in your thoughts and prayers

I mentioned that Emmett would be home from school today. The reason for that is rather bad fever flare. I'm pretty sure it started on Saturday because that when the physical symptoms began. At first, it was just one sore on the inside of his lip, but as of Sunday evening, he's got several more. The poor kid is in a lot of pain and isn't eating much as a result. He doesn't eat enough on a good day, and this makes things worse. Right now I'm making him milkshakes and mixing SlimFast powder in for some nutrition. These are cold and numb his mouth enough that he can relax a bit. Unfortunately, it doesn't last forever, and he goes right back to being miserable. There isn't much we can…