The Adventures of Evan: Day 346 - The Summer of Evan

As I noted in the last blog Cristy and I are going to try and fit as much fun as possible into this summer. I know you can't really make up for lost time, but we're going to give it a shot anyway. Evan's last day of school was Wednesday and since then we've spent the last few days at Chucky Cheese's, Monster Mini-Golf and today at the Renaissance Festival. The weather today was warm, however it's nothing like Disney World this time of year.

Hole #1 at Monster Mini-Golf.

With the weather forecast expected to be hot and sunny next week we also need to take special care to keep Evan covered in clothing and sunscreen. His Methotrexate seems to be acting with another drug (likely the Voriconazole) and making him even more susceptible than normal to the sun. We put SPF 70 lotion on him daily, but even that is a losing battle if we're not re-dosing constantly.

They never look in the same direction at the same time.

The only notable health update is that Evan's Voriconazole test came back and they've asked us to increase his dosage. It's hard to zero in on the correct dosing because of the number of drugs that he takes that are potentially nullifying it. We're set to meet with ID again in mid-June for another follow-up test. It's important that we don't overdose because of the side effects this drug can cause; notably temporary blindness and hallucinations.

Got him to slow down long enough for a picture.

We received a call from Evan's orthopedic surgeon last week. Our hearts dropped initially as he typically only calls with bad news. To our surprise he wanted to use Evan as his case study for a medical conference he was attending later this summer. We of course consented because any information gleaned from Evan's treatment that could help another child should be used to the fullest extent. Cristy and I got a good laugh afterwards because it seems like Evan is an outlier in most treatments and seems to show symptoms from even the rarer side effects of many drugs

Mama bear making sure the boys had a good view of the fire-eaters show.

Next week I would anticipate a new blog entry almost daily. With this being the boys first trip to Disney we're going to try and capture all the magical moments we can. Adding to the fun is Make-A-Wish's contributions; from the resort to the tickets to setting up the meet and greet with Jack Sparrow. Should be an exciting time that the boys aren't soon to forget. Thanks again to MaW for making this trip possible!