Back to School

And just like that summer is over. James went back to school yesterday, his birthday party is this weekend, and he officially turns 9 on the 29th. It’s really hard to believe that our little dude is turning 9…or that he’s starting 4th grade. The one-on-one nurse he’s had for the past few years has taken another job in the district so James will be starting the school year with a new nurse. Fingers crossed she’s a good one.

We’ve had a few really good nurses over the years, but we’ve also had a situation where James missed a bunch of school because a nurse that was assigned to James either didn’t show up, or worked with him for a day and decided they couldn’t handle it and quit. While we were angry at first, we understood. James is a lot to handle. To be honest, if he wasn’t my kid, I don’t think I could handle it either. It takes a special person to give James the care he needs. Let’s hope that the new nurse is one of the special ones.

Seizure Drug Study Completed

Last week we went to the last appointment for the drug study that James has been a part of for the past year.  Poor dude had to do one more EEG.

The results have been nothing short of amazing. This is a drug that is approved for those 12 and older; the study is to see how it works in younger kids. We never met any of the other kids in the study, but we hope that they had similar results to James, and we hope that this drug gets approved so more kids can hopefully get similar relief from seizures that James has.

The numbers speak for themselves. We started tracking James’ seizures a month or so before the study started, and had to track them throughout the study. The pic below are numbers of seizures and clusters we recorded on August 16, 2017 which was a week after James started taking the drug, and August 16th of this year. The “s” in the picture are seizures for the day, and the “c” indicates clusters, which for James, are five or more seizures within 5 minutes.

Amazing, right? We do have one more follow-up appointment next month, but I’d say this study was a success. At least it was for James. Hopefully the other kids in the study had similar results and didn’t have any adverse reactions.

Medical Supply Organization

When you have a medically fragile or special needs child like James, you need to find a way to organize all of the medical supplies that they need. Years ago we bought this toy storage unit from Ikea to help organize those supplies.

One of the drawers used to filled with various sized syringes: 1 ml, 3 ml, 5 ml, 10 ml, 30 ml, and 60 ml. They were all just kind of thrown in the drawer which made grabbing the one you need sometimes difficult. Stacy finally found a solution to the problem: a silverware holder that you would normally see in a kitchen drawer:

Genius! It also helps us see which syringes we’re running low on.

Miscellaneous Stuff

Every so often James gets a box in the mail from Bounce Children’s Foundation, usually around holidays like Easter, Thanksgiving or Christmas. The boxes are filled with activities and other things related to that holiday. They may have coloring books, or supplies and directions for an art project based on the specific holiday. We recently received one of these boxes for “National Relaxation Day” (didn’t know that was a thing) and Stacy thinks it may be more for her than for James. Momma could use some relaxation. If only James could draw her a nice soothing bubble bath to soak in. I guess that’s my job.

Then again, James may be the one who needed the relaxing bubble bath. Stacy had a girls day with my mom, sister, and her daughter, so James and I had some boy time. He was fine for a while and then he went into one of his crying fits. In the past we’ve found that if we change the TV channel to something else he calms down. Not this time. I couldn’t figure out what had him so upset. He ultimately cried himself to sleep. Maybe he just missed his momma.

One last picture before I end this post. James’ cousin Sarah has always been compassionate towards him. It’s really sweet and good to see. Here they are hanging out watching some TV: