I woke up this morning and realized- holy crap, it’s MARCH. The last time I posted was in November, which I swore I was going to be better at my posts, but I have been insanely busy with being the primary caregiver of Greyson, taking both kids to tons of appointments, keeping the family functioning, managing a household, organizing schedules, recording a podcast and…..oh! I still am working about 20-25 hours a week. PHEW.

We ended 2025 with questions regarding Greyson’s Cereballar Tonsillar Ectopia (CTE) and the fact that we were unable to get the full MRI requested by his Neurologist due to his VNS implant. We were finally able to get approval after talking with the insurance company and several doctors, so we went in for the full lumbar MRI in early January. The results were mainly unremarkable, with exception of a congenital partial sacralization of the L5 vertebrae and disc. Don’t ask me what that means, I think it’s something dealing with a part of the spine fusing with the sacrum/pelvis bone. There’s a reason I didn’t go to med school- mainly having to remember all of the terms, etc. was a large factor, the other being that I was NOT going to school for 8+ years.

Essentially after the MRI, it was determined that Greyson’s gait and balance issues were caused by the Onfi, a seizure medication he was on, being at dangerously high levels in his bloodstream. Over the next month we titrated the Onfi from Greyson’s medication routine, which proved to be a lot harder than initially thought since he had been on this medication for a few years and it was also used as a mood stabilizer. Well, I wish I would’ve known the part of the mood stabilizer before we started reducing it. The entire time we were reducing his medication level each week, more and more behaviors began to creep in, as well as aggression. The aggression was by far the worst that we have experienced in the past few years- hair pulling, pinching, hitting, throwing things at people and my favorite- BITING.

We had biting issues back when Greyson was very small, I believe around 2 or 3 years old, but luckily it was an easy to break behavior. Replacing the biting with chewy tubes, etc. seemed to help a lot when he was little but now that he is older, the chewy tubes weren’t doing a dang thing. I am typically able to anticipate when Greyson is getting angry or overstimulated, the main culprits for the biting behaviors to manifest themselves, but on Christmas afternoon, Greyson was one beat ahead of me. I was sitting in a chair in the living room and Greyson wanted to go on a walk, but Derek apparently wasn’t moving at the pace G wanted him to, I was the one who got bit for it. This boy did not want to let go of my dang arm. Derek and the behavior staff were quick to get to us, but the damage was done and my skin was bruised instantly. Not a big deal- I would rather I be bit than anyone else, especially someone in my family (like my two little nephews). Over the course of the titration, Greyson ended up biting several staff and gave one school staff member a concussion.

January brought a new diagnosis for Miss Roslynn, too- Asthma. We went to her new pediatrician in the fall and were referred to CHOP Pulmonology because of her frequent coughs and colds that turn into pneumonia at least twice a year. We arrived in Philadelphia and the entire appointment ended up being quite a process: breathing test, getting albuterol treatments, another breathing test, blood work, etc. then finally meeting with the doctor. Roz was diagnosed with Asthma and prescribed a steroid medication she takes daily and a rescue inhaler. While we were there, the doctor was also concerned about her Pneumococcal IgG Serum levels due to the amount of strep and respiratory infections she gets each year. If her levels were low, she would need a booster to her Pneumovax 23 vaccination to assist her immune system in fighting off these illnesses. Funny enough, I have the same immunodeficiency and experienced a TON of strep, upper respiratory and sinus infections until it was discovered I needed a yearly Pneumococcal Pneumonia vaccine each year. Since I started getting that, I have not been nearly as sick as I used to get, so I am very hopeful that Roz will be feeling better and we can avoid her annual bout with Pneumonia in May.

We have lots of fun plans for this Spring/Summer- an intake with the CHOP Comprehensive Vascular Anomalies Program for Greyson since his Port-Wine Stain is coming back on his face. More Pulmonology visits for Roslynn at the end of March and a repeat sleep study in early June to find out why she foams from the mouth when she sleeps. This is all in addition to the two different summer camps Roslynn is doing (her typical camp and an art camp she is doing) and a two-week camp for Greyson in June (hopefully- he’s on the waitlist) and ESY in July. Did I mention I also am recording a podcast and I work 20-25 hours a week?! Guess it’s going to be a busy, but fun summer with the kiddos. I just hope it doesn’t go too fast- they are getting too big, too quickly as is!

Here’s a photo dump from the end of 2025/early 2026 so far: