Never again will I EVER make an appointment in Baltimore after 3 PM. Also, never again will I EVER bring Roslynn along with us.
As if Greyson’s crying for an hour wasn’t hard enough, Roslynn decided to give us a full-blown concert of nursery rhyme songs on the way home. Everything from “Mary had a Little Lamb”, to “Row, Row, Row Your Boat”, was on the set list. A 2 hour car ride of Roslynn singing at the top of her lungs, except for the time she was screaming because she wanted to call her Nana……Did I mention that I woke up with a headache and have had maybe 9 hours of sleep in two days?
Greyson’s appointment began as they all do: vital signs while he screams, cries and fights with us. Once the nurse got the vitals she could, we were escorted into the room to wait for Dr. Comi. The kids had built up energy that they needed to get out from sitting in the car, so naturally they decided to start wrestling on the floor.
In the midst of the WWE match happening on the exam room floor, Dr. Coming made her entrance. We finally got a definite answer- Greyson has NO brain activity consistent with Sturge-Weber Syndrome. This is great news! However, this does mean that he can no longer be seen at the Sturge-Weber clinic in Baltimore. We do know that his diagnosis of ASD still stands, so we were referred to the Center for Autism and Related Disorders (CARD), through Kennedy-Krieger. Unfortunately, this program is in Columbia, MD which is a two-hour drive from our house. We will weigh our options and determine how we will proceed, but in the meantime, we will see Dr. Comi again in January 2019.
Greyson will also be admitted into York Hospital on October 22-24 for a 24-48 hour EEG study. Our new local neurologist, who will be following Greyson’s care in the future, ordered the EEG in hopes that he could catch a seizure episode on EEG. The only downside to this is that Greyson will be hooked up to the EEG electrodes for a day or two, in a small hospital room that is not specifically for pediatric care. I’m having a panic attack just thinking about it. I’m hoping that this EEG will give us more answers and direct us where we need to focus our attention with the epilepsy diagnosis. As if this all wasn’t enough, we will also have our one-year reevaluation for G’s Early Intervention services within the next month, and his reevaluation at CADD to check in on his development.
Please keep Greyson in thought over the next few weeks. Derek and I feel like this is all overwhelming and exhausting, so I can’t imagine how Greyson feels with 2-3 different appointments per week, on top of his daily therapies. Pray for our strength and sanity also, because we typically run on very little sleep, both work full-time and have to manage 8-10 appointments per week for G. Somehow through it all we keep smiling and pushing through, despite wanting to give up and live a normal life.
I try to remember that God sends special children to special parents, and there isn’t anything that we can’t handle.