Hello to all our friends and prayer warriors! I wanted to take a quick minute to give you the latest on Harper…
First of all, she’s been doing great overall. We haven’t had to make a trip to the emergency room since August, and we haven’t had to use any of our back-up emergency medications for her seizures since mid-October! That is huge improvement from what we experienced last year.
That being said, she has been slightly “off” lately. There have been little things that we notice because we are with her all the time, but I worry about being an overly cautious alarmist. So I’ve just been making mental notes and letting things roll along. But the list has been growing, so I decided it was time to at least let the neurologist know what we’ve been seeing.
When Harper’s meds are increased, we always go through some adjustment period. Over the last few weeks, she has been a bit wobbly again, so we’ve seen more bumps and falls, one of which resulted in a pretty rough bump on the head. She’s been more lethargic than usual, and I have to really push her to get up and play. She tells me several times a day that she’s tired, and prefers to just sit on my lap if she has the option. Her moods have been rough, complete with lots of screaming and growling and making grunting sounds instead of words- but she’s also an almost-four year old so I’m sure that plays into the tantrums! We’ve had more trouble with being out and about lately- she has been shutting down in places with lots of noise or people, not handling her classes at church as well, and melting down in stores. We’ve also seen several spells where Harper spaces out and doesn’t seem to hear us or know what’s going on- this could be seizure activity, or it could be something like sensory overload.
With these changes, the neurologist has decided that it’s time to do a prolonged EEG study. This means that on March 6, Harper will be admitted into the hospital at Duke and hooked up to the probes and closely monitored. I will be staying with her, and we will be there for 3-5 days depending on what the tests show. The goal is to determine if she’s having seizure activity with the meds that she’s on, and if she is, to figure out what kind of seizures she’s having and what parts of the brain are involved so that they can be more specific with her treatment.
While we would love for Harper to never have any seizure activity, this will be the one time we would want it to happen. It would be great to get some clear direction and have her medications tailored more specifically to her needs. The ultimate goal from the neurological standpoint is to get her seizure-free, so we are praying these tests will get us closer to that goal.
We appreciate your prayers over the next few weeks as we prepare for this hospital stay. It means mommy will be away from the big girls for a few days, and Harper will have to deal with hospital life and be cooperative with the probes and wires all over her head. And of course the biggest prayer is that this won’t be a waste of time, that the testing will yield results that can be used to improve Harper’s health and well-being. Thank you all for being a part of our team!