As the events of Saturday evening unfolded, I kept hearing Whigfield’s 90s anthem in my head, and thinking, “I doubt this is what she had in mind.”
To get to what happened on Saturday night, I first have to take you back to Thursday evening. On Thursday, I went out to dinner with a friend I hadn’t seen in awhile. Clare and I caught up over some delicious Mexican food, and two hours flew by in the blink of an eye. When I got home, Mark had put Penelope to bed, and she was sleeping soundly. Charlotte was heading to bed, and all was good. Once Charlotte was in bed, Mark met up with some of his friends for the evening. Around 10pm, Penelope woke up, and remained pretty unsettled for the rest of the night. This was very uncharacteristic of her- typically, she goes down around 7pm, and sleeps for a solid 10-12 hours. So I knew something was up with her, but I wasn’t sure what.
On Friday afternoon, Penelope was sitting in her high chair as her feed was going through, and she began to have these weird spasms. I had never seen her do anything like that before, but she seemed fine otherwise, and after about ten minutes or so it stopped happening, so I didn’t concern myself too much over it. It was an unusual enough movement, though, that I recorded her doing it on my phone- I knew she had a neurology appointment coming up, and thought it may prove helpful to discuss with the doctor.
Later in the day on Friday, as I was talking about the spasms with Mark, he told me that he had seen her do it on Thursday evening. Upon hearing that, I started getting more worried about it. Two separate episodes with the same type of spasm, and the fact that she had such a restless night, bothered me. I wondered if it could be related, and what it all meant.
On Friday evening, as we were sitting around the dinner table, she started having the spasms again. Maybe it was just the fact that I was worried about it at this point, but they seemed a lot worse, and I could tell that it wasn’t something she could control and that it was bothering her. This episode of the spasms was more prolonged than the previous episodes. I took her out of her chair and held her to see if that would stop it from happening, but it didn’t. She began to fuss and cry, and I could tell that she was getting tired. I took her into her room and got her ready for bed and held her for awhile more- all the while the spasms kept happening. I put her down in her crib to see what would happen- she had a couple more spasms and then fell into a deep sleep, literally about 30 seconds after I placed her in the crib.
This concerned me greatly. We have known that she is considered high risk for seizures since we got the MRI results in December. Could these spasms be seizures? Certainly, the way in which she fell into a deep sleep after the prolonged episode of spasms could indicate postictal (post-seizure) behaviour, but she didn’t fall asleep after the other episodes. I wasn’t quite sure what to think or what to do. After talking about it with Mark, we decided to leave her be for now, and watch to see if happened again, and if it did, I would take her to the ER. Despite having come to this decision, I felt very uneasy. I didn’t sleep well on Friday night, and neither did Penelope. She kept waking up and crying, which was so unlike her. At about 1am, Mark set up the video monitor in her room so we watch her from our room. Even though we had that monitor at the bedside, I still didn’t get much rest, worrying about what this all meant.
The next morning, Penelope seemed fine when she woke up- she was her usual happy self. She had a couple small spasms while her feed was going through but nothing like the night before. Still, it wasn’t sitting right with me. I took Charlotte to her friend’s birthday party that morning, which served as a great distraction. There’s nothing like seeing little girls dressed up as princesses and hanging out with Queen Elsa to take your mind off your worries.
When we got home, Mark reported that Penelope was fine and didn’t have any spasms while we were gone. As reassuring as that was to hear, I still had that sick feeling in my stomach that this wasn’t right. And then, while her afternoon feed was going, she started having the spasms again. They still weren’t as bad as the ones on Friday night, but I’d had enough. I had to get her checked out, for her sake and for mine.
So once the feed was finished, I loaded her up in the car, and we headed downtown for the Sick Kids ER, and we arrived around 6pm. As ER experiences go, it was actually pretty good- we were seen in a timely fashion and I felt my concerns were being taken seriously. I was extremely glad I had the video of the spasms on my phone- the doctors being able to see what was happening to her was invaluable, and since she didn’t have any spasms while we there, they wouldn’t have been witness to it otherwise.
When all was said and done, we left the ER around 11:30pm. We saw an ER resident, the staff doctor, and a neurology resident, and had blood work done- all in a span of less than six hours. Quite impressive. The decided upon course of action is to have an EEG done this morning to see if that can tell us anything, and to meet with the staff neurologist after the EEG. They normally sedate babies for an EEG, and unfortunately there are no sedated spots available for today, so I’m hoping that I will be able to get her to sleep naturally- otherwise, they won’t be able to do the test, and we will have to wait for a sedated spot to open up.
The good news is that she isn’t really having the spasms anymore. She will do the odd movement or grimace that doesn’t seem quite right to me, but nothing like what was happening over the weekend. So now it’s more wait and see, I guess. The other good news is that all of this has shaken me out of my funk from last week- it’s not that I’m happy that this has happened, more like it’s forced me to focus on what is important, and really reinforced how crucial it is to stay positive through all this.
So I know that reading this will make all the single and childless readers of my blog super-jealous of my partying lifestyle, but I make no apologies. Saturdays filled with princess parties and hanging out in the ER are just how we roll around here!