Wow. I can’t believe it’s October already! I truly don’t know what happened in August through now because I have been so ridiculously busy with so many things. In my last update, we had just gone to CHOP for a vascular anomaly appointment and had a biopsy of his Port-Wine Stain (PWS). Mid-August we finally received the results from that biopsy and it turns out Greyson does NOT have Mic-Cap syndrome, but he DOES have another genetic mutation. The GNAQ mutation that he has is common in individuals that have a PWS, but is often associated with Sturge Weber Syndrome (SWS). So that answered many questions, but it also raised many more.

I felt very frustrated with these results because I felt like it was bringing us right back to the beginning of this very long journey. Though Greyson has many of the SWS symptoms, he *hopefully* will not have an official diagnosis. We have an ophthalmology appointment at CHOP in the winter, so we should know more then once a doctor can check out his vision, etc. By the end of August, I had taken both kids to the dentist, psychiatrist, Greyson to the neurologist, and Roslynn who needed vaccines and a physical for 6th grade. WOOF. My relief was finally reached when both kids went back to school, but separate schools and on separate schedules.

The largest adjustment to the kids going back to school was the fact that Roslynn gets on the bus at 6:50 am and Greyson gets on at 8:20 am. I personally started to feel the earlier pick up time almost immediately. Shockingly, Roslynn has done a FANTASTIC job with getting her things together the night before school, getting up in the morning and getting out the door in time to walk to the bus stop. We have been so incredibly proud of how hard she has been working on her assignments and are amazed at how well she is doing with this newly acquired independence.

By the time school began again, Greyson had begun to have episodes of what we thought were migraine headaches. They are short-lasting migraines that impact him significantly. He will shut down completely, hide his head under covers/pillows, cover his ears and cry. Within 2-5 minutes of an episode starting, Greyson will become physically dangerous to himself, hitting/punching his face, biting himself, scratching himself, headbanging, etc. and when blocked by Derek, myself or his behavioral team, he becomes aggressive towards us. There have been several times where Greyson has bitten someone on the team, or has hit one of the nurses on the case (he even gave one a concussion in August). These episodes happen daily, sometimes a few times a day, and last about 10-15 minutes each. I called the neurology on-call line after a few of these episodes when they first began and it was suggested we bring G in for a repeat MRI. His MRI was scheduled for October, so we had some waiting time. In that time frame, we have barely survived through these episodes and the unpredictable version of Greyson we will have on a particular day.

Greyson’s MRI was on Thursday, October 1st. We showed up bright and early at CHOP and went through the typical motions we do when we have his MRI appointments. Since this is MRI #3 of the year, I would say we have reached the pro level of getting up and out of the house by 5 am to get to Philadelphia by check-in time. The preparation, procedure and recovery were all the norm and we were on our way home by 11:00 AM. The only difference this time was that I was the one experiencing the migraine this particular day. I have had several weeks with horrible migraines that will not go away with any OTC medications. I had an MRI at the end of September after seeing a neurologist, and that turned out to be normal…..ish. My brain overall is fine and looks appropriate for a 37 year-old, but what wasn’t normal was the diseased sinuses the MRI showed, along with a small tumor in my right maxillary sinus. Could this be the cause of these terrible migraines that cause me nausea, vomiting, blurred vision and extreme fatigue? Well, maybe. The last sinus surgery I had was in 2022 and I was told that there was not much more surgery could do to help with my issues in my sinuses. I did some research and found a doctor in Philadelphia at UPenn who specializes in sinuses that have been operated on repeatedly with no relief. I am set to see him at the end of October to see if surgery is absolutely necessary, or if there is another thing we can do to avoid a costly operation.

Back to October 1st- the reason why I bring up MY migraine was because I chose to sit in the back seat with Greyson on the way home. I actually was reclined in the captain chair, arms over my eyes and breathing deeply to avoid vomiting. Of COURSE that was the perfect time for Greyson to also get a migraine and have a huge freak out. For the next 20-30 minutes or so, G proceeded to hit himself, me, bang his head against the window and carseat, along with screaming the entire time. My head was about to explode, but I managed to get his helmet on and used blocking pads to avoid having a broken window. It was the longest car ride home from Philly that I have ever had. Once we were home, G and I decided to sleep off our headaches on the couch. We snuggled up close and passed out cold for about 2-2.5 hours. While asleep, I received a phone call from Greyson’s neurologist at CHOP regarding his MRI. I knew instantly that if the doctor calls before any results are posted in the online portal, it was not good news. And was I right….

Greyson has had pressure on his brain for awhile now, but particularly his cerebellar tonsils in the back of his head. This is caused by his brain pushing downward towards his spine, causing coordination, breathing, eating and gait issues. We received a formal diagnosis in the winter of 2025 of Cerebellar Tonsillar Ectopia, which I described in previous posts. Well, over the past 2-3 months, I had said that I thought the migraines he was having were caused by his condition worsening and progressing into the Chiari Malformation Type I diagnosis. When Greyson’s neurologist called with the results, she agreed with my hypothesis and has referred us back to the neurosurgery unit at CHOP for a stat visit. We are being seen on Tuesday for a consultation to see if brain decompression surgery is necessary for him to have some relief from these headaches. AKA does G need brain surgery to help him get back to his baseline self? As difficult as it is to say the sentence, “My kid may need brain surgery”, I am trying to stay positive and remember that it could be so much worse.

So we finally have some answers, but lots of new questions that need to be answered in the upcoming weeks. Will Greyson need surgery? Will I need surgery? What would recovery look like for him if he does require it? What else can we do in the meantime to make sure he is safe and not hurting anyone else during his episodes? We are hoping to solve some of those questions by the end of October. I’ll update once we have some of those answers to provide.

Enjoy some photos from July through now: