October left almost as soon as it came flying in. It’s really crazy to believe we are on the 11th month of 2025 already! The kids loved trick-or-treat night this year. We programmed Greyson’s communication tablet to say “Trick-or -Treat” and “Thank You”, which made everyone in the neighborhood so happy. He was really impressed with himself, too. So much so, that he thought if he kept pressing the Trick-Or-Treat button, he would continue to get more and more candy.

In April of 2025, Greyson had the MRI that showed his Cereballar Tonsillar Ectopia (CTE), a specific form of Chiari Malformation Syndrome. We were due to have another MRI to check the progression of the CTE after January 1, 2026. After Greyson began having an increase in seizure activity and issues with his walking/balance, the MRI was moved up to November. We went in to CHOP in Philadelphia on Tuesday the 11th and we were 30 minutes late, because naturally there was an accident on I-76.

When we arrived, we got checked in and got brought back to the radiology sedation unit and we began to prep Greyson for the MRI. The MRI tech came in before the procedure and informed us that due to Greyson’s VNS device in his chest, he would not be receiving one of the three imaging packages that the Neurologist had recommended. Unfortunately, that specific set of images was the bunch that would have showed us his bladder, kidneys and urethra so we could see if there was an issue with his endocrine system. After our consultation with the CHOP urology team, we needed these images to see if there was something physically altered, damaged or malfunctioning with his system which would hopefully tell us why he is having so many problems recently with his bathroom skills.

Once he was finished with the MRI, we got him back home and he slept a good bit of the afternoon. I joined the nap team when I finally began to crash from being up so early and lacking lots of quality sleep, though I must admit that it wasn’t a very restful nap. We received the results from Greyson’s MRI on Friday, along with his lab results that were drawn at the hospital that day, too.

The MRI showed that Greyson’s Cerebellar Tonsillar Ectopia is still not severe enough to be fully considered Chiari Malformation Type I, though it is almost at that point. His cerebellum has descended from his skull about .2 mm, which may not sound a lot, but is very significant in these situations. He is .2 mm away from having the Chiari Malformation diagnosis given, especially with the volume of his cerebral spinal fluid being decreased in his spinal cord/brain stem areas. The Cerebral Spinal Fluid flow test showed some narrowing at the opening of the cavity, but only slightly, which also was abnormal. The most surprising finding that the MRI showed was a synovial cyst on a joint within his spine that connects to his brain. The cyst itself is not an uncommon thing- many elderly individuals get them from old age, deteriorating spines, etc. but Greyson’s is due to another reason, which we are still figuring out. The cyst is almost likely benign, but can have some impacts on his everyday mobility. Symptoms of an active synovial cyst would be numbness and tingling in the legs, back and leg pain, cramping, sciatica and overall leg tiredness that is relieved with sitting/laying down. The dropping to the ground and refusing to stand to walk may not be an escape behavior afterall. Unfortunately, it may be due to this cyst that is on his spine. We plan to go back to have the lumbar and thoracic MRIs done at a later date to further investigate these things, but I think we need to take the rest of 2025 off to allow Greyson to build up his strength and energy before we take him to be put under anesthesia again.

For the remaining 6 weeks left in 2025, I hope everyone stays healthy, happy and full of love and joy. We have many exciting things planned for 2026, so stay tuned for all of our updates and any announcements we post along the way. Enjoy a photo collage of some more random pics from the past couple of months!