In my last post, I hoped I would remember to update before school started in the fall. Looks like I made it with a month to spare.
First up: Little Miss Minion had her MRI in June. She did so well! We both changed into hospital clothes and they got her bundled into the machine. They have a screen with Disney + on it, so she picked Bluey for her show during the scan. Bluey episodes are about 10 minutes long and they were finished before she finished the episode, which annoyed her. Haha.
We went upstairs to her neurosurgeon’s office to get the results. Comparing this one to her last one shows a slight increase in fluid levels, but he said the levels can fluctuate a little bit naturally. She wasn’t having any symptoms of a malfunction, so he wasn’t concerned. Six weeks later (today), she’s still good, so I suspect it was just a normal fluctuation.
I did ask him about some long term things we’ve noticed that we suspect are due to those pesky areas of brain damage from when she had the meningitis. It’s a doozy of a vocabulary phrase: periventricular leukomalacia. PVL, a much easier abbreviation, has been hovering on the sidelines ever since they found it. At first, they suspected it would impact her ability to walk. She did need AFOs (ankle-foot orthotics) when she was learning to walk, so maybe it did affect her gross motor skills. Since starting school, writing and holding pencils for extended periods is hard for her. Maybe it affected her fine motor skills as well. Brains are weird.
During this visit, we specifically asked about her short term memory. Short term memory problems are a known complication of endoscopic third ventriculostomy (ETV) surgery, which she had way back in 2015. She will hear something at school and acknowledge it, then ask about it 2 minutes later as if the previous explanation didn’t happen. She can read almost at grade level, but if you ask her about what she just read, she can’t tell you. Her neurosurgeon said that it’s hard to answer definitively (again, brains are weird), but he agrees that it’s likely a result of that ETV surgery, since the frontal lobe is the area that they access to get to the ventricles in this case. Memory issues will likely be part of her baseline.
Thankfully, repetition and habit are pushing things into her long term memory just fine. Once she knows something, it stays there forever. She will ask me about the most random things from two or three years ago (when she was 5-6), and she will be 100% accurate. She asked me the other day where a certain dress of hers went—it had a hole in the hem a couple months ago and I forgot to fix it for her. But ask her to read a new story and then tell you about it—she struggles.
Luckily, she has an amazing team of teachers at school. Since she has a 504 plan, we are able to enact workarounds to help her succeed. These include things like sitting near the teacher/teaching space, extra time on assignments, shortened assignments, going to the resource room during free work periods in class, and getting extra help with reading and math. Once the kids start having to write longer answers for homework, she will be able to use a keyboard to type her answers. She will still be expected to do some writing by hand, but when the assignment is content based, it makes no sense for her to struggle with physically writing when she’s mentally got the answer.
Besides that, she had a great time at summer school, working on that reading comprehension. She’s been doing the school summer care program after summer school got out, and they do crafts, activities, field trips, and have special events periodically. Next week, they are going to see a movie at the movie theater!
That’s about all the excitement around here. Happy summer!
minionmayhem514 