Emmett is absolutely miserable. The sore in his mouth is now about the size of a large pea and it’s in a place that is constantly being irritated. He’s spent a lot of time crying today and it’s heartbreaking. I had orajel, special mouthwash and ice cream delivered at 8am and aside from the ice …
Tag: PFAPA
Dec 19 2020
Please keep Emmett in your thoughts
Emmett’s in a bad way. He’s hit a fever flare and this one is particularly painful. His first mouth sore popped up two days ago and there are likely more to follow. The poor kid is in a tremendous amount of pain and there’s not much I can do to help. We’ve doubled up on …
Oct 07 2020
Have I said how much I hate 2020?
Emmett’s not been having a good week in regards to school. He’s been in a fever flare for going on a week now and that’s likely contributing to his struggles. As crazy as it sounds, I hadn’t put two and two together until this morning. He’s been doing well since returning to his old school. …
Oct 05 2020
Emmett just hit a fever cycle
Recently, there was a delay in refilling Emmett’s antivirals that he takes for his fever disorder. With all that had been going on with Gavin recently, I’d opted to use this opportunity to see how he did without them. He did really well for about 2 weeks but just in case, I addressed the issue …
Mar 20 2018
It all happens at noon today
It’s already been a hectic morning but I did receive the call I’ve been waiting on from Emmett’s pediatrician. The long and short of things is that Emmett will be seen at noon today. Lizze and I dropping Gavin off with my Mom on the way. We can’t risk exposing Gavin to whatever bugs are …
Mar 20 2018
He’s NOT faking this
Emmett isn’t feeling well again this morning and rather than encourage him to go to school and at least try to see if he’ll feel better, we’re keeping him home. The main reason we’re keeping him home is because we’d have to pull him out anyway for his appointment this morning. I don’t know what …
Mar 12 2018
I hate feeling powerless
It’s now 1:47 AM and Emmett has just now fallen asleep. We’ve been trying to help him for hours upon hours. He has a really bad tummy ache and feels like he’s going to puke. This is stressful for any kid but it’s especially so with a kid like Emmett. To make things even worse …
Feb 19 2018
He’s 18 years old on the outside but not on the inside
Gavin’s having a rough time today. He’s eighteen years old now but can’t be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin’s cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won’t know exactly how much he’s regressed since the last …