I said hopefully the next time I wrote a post, we would hopefully be through this, and to be honest, I was beginning to think that there really wasn’t going to be light at the long, dark, lonely tunnel but it’s been three nights of peaceful rest. I’m still on edge, always expecting screams to come, but Colleen seems to have turned a corner. And I can only begin to imagine how bad it was for her body to take a month and a half…nearly two, to recover. This past Tuesday, she fell asleep around 12:30PM, while I was at work. She didn’t wake until almost 6:30, and that whole time I was thinking, “please, just let her sleep!” Her exhausted body desperately needed it.
I’m not sure how we made it through. I don’t think I’ve ever doubted myself more than during this period, questioning everything I was doing just to try to help her, while seemingly making it worse. But, if there’s one bit of help I can give, it will be advice that was given to me: lean in.
I was the lonely soldier. But I was losing. And I am so thankful that people saw me in my brokenness and reached out to offer support. So, if you find yourself in a similar situation now or in the future, know that to don’t have to do it alone. Lean in and ask for help wherever you can. Even the most simple of gestures can mean the world. I’m here too, if you need to talk, or for someone to listen.
Last year, I saw information about the Embrace seizure monitoring watch. I was immediately intrigued, since Colleen’s seizures are “silent,” we can’t really tell if they’re happening. This watch would provide so much ease of mind, especially when she’s sleeping.
Her spikes occur more while she’s sleeping. Last year, we went to the epilepsy monitoring unit at a local hospital for an extended EEG. She was having upwards of 500 spikes in a night. Depakote Sprinkles were added, and it significantly reduced the amount of spikes she was having.
Monday, we drove to her new doctor, and the plan is to wean her off the depakote. I’d be lying if I said I wasn’t nervous. Not having an EEG, we don’t know how she is doing. But, she isn’t having any seizures, so it is the doctor’s thought that we can wean and see how she does on just keppra.
Already, there has been a pretty significant change in her behavior. Her teachers and therapists didn’t know she had stopped her morning dose, and commented to Jonathan how much more attentive and talkative she was. He of course told them after they commented. It will be interesting to see how she is once she’s fully weaned.
Which brings me back to the watch; Her doctor signed a form so we can try to get the Embrace watch once it is released. You can read more about it here. I don’t know how it will work with Colleen, but I am very eager to get one. For now, we will keep monitoring Colleen and hope for the best.