In February of 2022, Greyson had a VNS implant placed for his seizures. The device is implanted into his chest like a pacemaker, with a lead around his vagus nerve to tell his brain to stop seizing. This far, the device has helped a bit, successfully stopping several seizures since its placement. The problem with the type of epilepsy Greyson has, medications and the VNS help, but will not totally stop the epilepsy from happening. With the number of medications we have tried, in addition to the VNS, the next step his team wants to take is possibly neurosurgery. This surgery would remove the portions of the brain that are directly impacted by the seizures. Before the surgery, the team needs to know exactly where the seizures are occurring in the brain, which can only be determined by a detailed EEG, capturing several seizures over a period of time.

Now Greyson has had several EEGs and several overnight stays in the hospital trying to capture a grandmal on his EEG, but we haven’t gotten enough data to show us the information we need. So again, we are going down to Philadelphia to be admitted for a “48 to 72 hour” EEG stay. With his previous EEGs, he has had his medication with no changes, but this time around, we are titrating his medications to the bare minimum in hopes that he will have seizures. I know it sounds counterintuitive but we need to find exactly what parts of his brain are being impacted so we can plan out our next course of action.

We can expect Greyson to have seizures throughout the two weeks leading up to his hospitalization, since his doses will be titrated a lot in a short period of time. He will be admitted September 6 and will stay until the 9th or 10th. Derek will take the reins on the EEG, since he has done this several times and knows what to expect. My turn for the next hospital event will be in October.

Roslynn has been complaining about sore throats/choking on foods, etc for a bit. I took her to the ENT at the beginning of the summer and she had a sleep study done at the end of July to determine if her tonsils were restricting her sleep/causing sleep apnea. Insurance will only pay for tonsils to be removed if you have had 6 or more cases of strep throat in a year, or if you have obstructive sleep apnea. She completed her sleep study and the following day, the otolaryngologist called and stated she has severe sleep apnea and stopped breathing an average of 17 times per hour. Her tonsils are so large that they close off her airway, causing her to cough and wake up frequently overnight. Roslynn will have her tonsils removed in October, requiring an overnight stay due to the severity of her apnea. Yay……

Despite the health concerns, this summer has flown by, while also being the longest summer ever. We started off the summer by ringing in Roslynn’s 8th birthday and Greyson turned 7 earlier this month. Hard to believe that we will be in fall starting in a few short weeks! This is my favorite time of year, though- cool, crisp mornings, sunny, warm afternoons and open window weather at bedtime. 🤗

School starts up again on Tuesday, which is a HUGE relief for me. Greyson will be going to school with his own personal nurse and RBT each day for full-day coverage, to monitor his seizure activity and behaviors. The teacher he had over the past two years has moved onto a new district, so it will be a transition for all of us as he moves into second grade. Roslynn will begin third grade this year, too. I feel like we were just putting them on the bus for kindergarten, and I remain in complete denial that they are getting older.

Some fun summer photos from July and August (so far):