It’s finally time for spooky season….AKA my favorite time of the year! I love when the mornings are crisp and the afternoons are warmer, only to end the evening with the fall chill in the air. Fall also brings colorful leaves, steamed apple cider and the best thing EVER invented- the pumpkin cream cheese muffin from Starbucks. NOMMMMMMM. But in all honesty, fall is great for a bunch of reasons other than the ones listed above- school is back in session and Greyson picks out his own Halloween costume from his most favorite store ever, Spirit Halloween.

The summer went by so very quickly. Honestly, I can say that it only went as well as it did because of the amazing staff that we had here at the home. Greyson ended up home a lot over the summer, with exception of the days he went to the center (3 days a week for 3 hours each day). The rest of the time, he was home with myself, his nurse, and two behavioral staff members, one especially who took over really making sure that Greyson was learning basic skills needed for his everyday life. I may have discussed her before, but I will call her “T” for the sake of her privacy. Anywho, “T” worked with Greyson in school from January to the end of the school year and despite having some tough clashes with the teacher, she stuck it out and helped Greyson survive the year. I was relieved to see that she was working in the home with us because Greyson had developed a funny relationship with her- playing jokes on her, always stealing her food and storming her with hugs and sloppy cheek kisses just to annoy her. It truly was great seeing their relationship develop and to see how much he respected her. “T” was able teach Greyson several things that are essential for his future, such as telling us when he needs to use the bathroom, when he needs a diaper change, how to change his own pants and wet diaper, and even hot to cook chicken nuggets in the air fryer. That last one probably wasn’t the best one to teach him, but at least he can show us when he really wants to eat them now.

Much to our heartbreak, “T” put in her two-week notice at the end of July, leaving the agency she was with and heading off to a position working with adults at a group home nearby her home, rather than here, over an hour away from her home. When we lost “T” from the team, it immediately felt like something was missing. And even now, over a month later, it still does. Luckily, we needed a new respite worker and “T” has lots of training and skills which makes her an ideal respite worker, so she is going to be Greyson’s respite and in-home/community support staff. This will be about 20 hours a week and will allow us to still have her on Greyson’s team, but in a different role than she was in previously with the behavioral agency. With the transition of “T” in her role and adding new staff to the case, we have had a lot of things to adjust to since the end of summer.

About three weeks ago, Greyson randomly developed a very high fever during a regular Sunday afternoon nap. He fell asleep and was totally fine, but about 15 minutes into his nap, he began shaking violently and was burning up. We gave him a dose of Motrin and had to order more children’s Tylenol and a new thermometer for him, so I could know what his exact temperature was. By the time a new thermometer arrived (about an hour or so after the Motrin was given), his temperature was at 105 degrees. He has never had a fever so high before. We decided it was best to bring to him the ER to make sure he didn’t start having seizures due to the fever, so we packed everything and everyone up and prepared to go to the hospital. Before jumping into things, I realized it would be smart to check with the pediatrician before going to the ER, so I contacted their office, and immediately I was advised to stay home and alternate between Motrin and Tylenol on a specific schedule. I brought him in the next day to the pediatrician and despite a negative COVID, Flu A&B, Strep Test and Urine Screen, he was still extremely lethargic and feverish for about 48 hours. During that time, the only other symptoms we saw was a bit of extra clumsiness and falling over his own feet.

The fever went away after about 48 hours, but the overall gait and balance issues lasted a bit longer than that. I didn’t think it was too concerning until the school nurse called and then they also reached out to his neurology team at CHOP. His neurologist contacted me and asked me to try to capture a video of him walking/tripping so she could assess what may be going on. Luckily our private nurse was able to get some really great videos of him and once they were sent to the neurologist, we were set to see her in the office this past Tuesday to follow-up. So FINALLY we saw the neurologist on Tuesday and came up with a plan to get some more answers when it comes to the balance and walking issues. We are going to attempt to get suresteps again for him. If you remember, he did have them two separate occasions in the past, but it was fairly complicated since he doesn’t like to wear shoes often. The follow-up to his MRI that found the Chiari malformation was supposed to happen in the Spring of 2026, but because of these issues, we have moved up this testing to November. Not only will he be receiving a sedation MRI, but also an MRI on his upper and lower spine to check for any physical changes that may be causing the gait and balance issues. The doctors will also be assessing the amount of cerebral spinal fluid he has in this brain stem at this time too, which may be able to tell us if he is losing fluid through the gap in his skull. If he is, that does qualify him for brain surgery.

Despite this little hiccup with his health, he has been pretty good over the past couple of weeks. He seems to be very happy to be back at school and (dare I say it) everything seems to be going pretty well with school. I’m optimistic that this year will continue to go well, as long as his teacher continues to communicate and we are all on the same page. Fingers crossed.

Roslynn began 5th grade this year, her last year of elementary school. I may or may not be in complete denial of this, but has grown up so incredibly fast. She is so smart and seems to do well at every subject, but is exceptionally good at math- having developed THAT skill from her father. She loves music and art class, likes math and reading, but loathes gym class. She is not a fan of the random skill tests (climbing rope, running laps, etc.), but she enjoys the games they do in gym class and LOVES playing field hockey with the recreational team she is on. She began the oboe this year, so she could learn a woodwind instrument. Elementary school kids are typically only allowed to learn one instrument at a time, but because Roslynn is so advanced with her violin, she was given the exception and permitted to learn both the oboe AND the violin. Derek knows how to play violin, so he has been helping her work through her orchestra music, but she (and we) would like her to continue with violin lessons privately to continue her skills.

Since turning 10 in May, Roslynn has turned into our little pre-teen “granny”. She enjoys crocheting and knitting and prefers to be secluded in her bedroom, watching something or listening to music. She is really into some musicals right now and is anxiously awaiting Wicked (part 2) to come out in November, and is ecstatic to be Glinda in October for Halloween, playing opposite of my niece Lexi, who will be Elphaba. Shortly after her 10th birthday, Roz asked for a “big girl” room. She was over the purple walls and unicorn decor, and wanted a pink pastel/floral themed bedroom with a grown up loft bed. She was convinced that having a loft bed would give her more room to be “organized” and would help her keep her room clean. I will admit that her bedroom makeover has kept her room more clean than it has been in a lonnnnnng time….so maybe something is kind of working!

Alas, here we are- another fall, another summer over, another round of testing and search for answers that will hopefully help us get one step closer to figuring our little man out. Stay tuned for the future- I’m hoping to be more present and hoping to update you all more often! Happy fall, y’all!