Last night my husband, myself and our baby stayed with Sophie overnight at Sick Kids' hospital in Toronto for an EEG/sleep study, the purpose of which was to determine whether Sophie is having sub-clinical seizures. We know she isn't having any other seizures but upon meeting with the neurologist and discussing Sophie's unique history (the regression, falling asleep when stressed, odd night-time sleep patterns) she ordered a series of tests to get a better picture of Sophie's brain. We are totally supportive of anything that sheds even the tiniest light on Sophie's condition and perhaps autism in general.
Originally only my husband was supposed to stay with her, but the idea of being separated from her overnight was making me very anxious and sad. I am her primary source of comfort and wanted to be there knowing she would be scared by the procedure (the placing of the electrodes- she hates to be touched especially by strangers). Amazingly, the hospital had no problem with us all staying in the room together. It was considered to be an outpatient procedure even though we stayed overnight, maybe that's why regular visitor limits didn't apply.
As I thought, the worst part was the actual placing of the electrodes. Sophie ended up being swaddled in a blanket and belted to the bed. It was a very hard hour and a half. We tried to soothe her any way we could but ultimately it just needed to get done. The tech was very good and gentle. He bandaged her head and put a tube around the wires coming out of her head, which were attached to a little device which he put into a backpack. When we got to our room he attached the device to a monitor using a very long cable. Our Sophie looked like a character out of a science-fiction movie, a little cyborg if you will. Fittingly our sleeping quarters also looked like a room aboard the Starship Enterprise, so it all worked.
The purpose of the sleep study was to check for sub-clinical seizures and while I'm no neurologist, I don't think it is an issue at this time (and we hope it never will be). Regardless, we found Sophie's brain waves fascinating, matching what she was doing to bigger spikes and surges. Most of the time it looked like this.
But, interestingly when she fell asleep her brain became very active and the graph looked like this.
It's times like these I feel frustrated by the limits of my knowledge because I would love to understand what it all means! I googled of course and understood it to be normal but anyway I can't wait to talk to the neurologist about it.
Our visit at the hospital was as pleasant as it could've been given the circumstances. Apparently great care went to designing the hospital to not look like a hospital and it was a success. It looked more like a giant mall or a futuristic hotel. We enjoyed the view from our room so much we were reluctant to pull down the blind at night.
We took turns going for walks with our baby in the sling. It was a nice little reprieve from daily routine. Of course, I'm sure the reason we felt so positive about the experience is because Sophie was just undergoing a routine procedure, which we were not really worried about. We want to rule out seizures of course but so far haven't seen any evidence of Sophie having any. Since she was calm and happy once we settled her into bed with our entire collection of Thomas videos and the snacks we brought, we were able to relax as well. Our only reminder of the hospital being a place of worry and sorrow was encountering other parents strolling with their children, who were obviously much more ill than our Sophie.
It made me reflect upon how hard it is being a parent, and so much more so when our children are not well. It also brought the saying "finding strength you never knew you had" into a practical perspective. As parents of special-needs children we have to find that strength every day. If someone would tell us before we had kids that one (or more) would have autism, we would probably say "I couldn't possibly handle that". But yet everyday we get out of bed, and we do handle it. Just as the parents I saw at the hospital handle their lot in life too. Realizing it makes me want to put a real effort into being kind to ourselves and to the other parents we interact with in our daily lives. It is a hard job, whether our children are healthy or not, but we also can never predict what life has planned for our future. So let's try to be open to other parents, smile when we see them wrangle tantruming toddlers and say "it is so hard and I can see you are doing a great job!"