There have been times that I’ve questioned that tradition, that I’ve wondered what the fuss was all about. I mean, I didn’t have such a thing when I was a kindergartener. What’s the big deal?
But last week our youngest, our miracle, donned a cap and gown and received her “diploma,” and all I could do was weep. She sang, she danced, she recited, and she READ, and I was in complete awe of everything she accomplished. The miracle of the moment was not at all lost on me as I soaked in the goodness of God.
And now it’s summer break, and while we see other families enjoying fun vacations, we are preparing for our big trip to the hospital Baltimore, which is less than two weeks away. I am, quite honestly, not excited about all of this.
We will be traveling up a couple of days early to enjoy some family time in D.C. before we have to face all of the medical stuff. Harper’s first day will be spent at the Kennedy Krieger Institute for neuropsychological testing. She went through that about a year and a half ago, and for her it’s fun and games for several hours as they see how she is doing with her learning and development. It’s very helpful for us to make sure she’s getting the services she needs and pinpoint strengths and weaknesses.
The next day we will be meeting with Harper’s new neurologist at Johns Hopkins. We have already been so impressed with her, and we have decided that it is worth the traveling to be sure she is getting the best care possible. Unfortunately we have seen an increase in seizure activity over the last several weeks, so we know it’s time to explore more options.
After those appointments comes the biggest challenge- Harper will be admitted into the EMU (epilepsy monitoring unit) at Johns Hopkins for seven days. I will be staying with her, and she will be hooked up to all of the monitors from head to toe and we will camp out there for a week.
That’s our biggest need for prayer. We will be very far from home. Daddy and the girls will have to come back to N.C. and leave us there. She will have to deal with all of the monitors and wires and an IV. She will be confined to a tiny room in a hospital bed with very limited mobility. Seven days is a long time for a little girl in that situation!
They will also be weaning back her seizure medications during that time to increase the likelihood of seizures. They need to see what kind of seizures she’s having, where they are coming from, etc., so they need to see seizure activity. We have done this one time before at Duke and it was completely nerve-wracking… and ended with Harper in the PICU. Her seizures are so unpredictable and very difficult to stop once they start, so it can be a scary situation even in a supervised hospital setting.
So why do it? Well, without gathering that information, they can’t find the best treatment options. She’s only six years old, she’s on good-sized doses of two medicines, and we have quite a few failed medications behind us already. Our options are becoming more limited, and we are still seeing that issue of her medicines losing their effectiveness every couple of months. And the hard truth is that it only takes one seizure to lose our girl.
So we have covered this in prayer and we press on trusting God’s hand in all of this, and we covet your prayers as we embark on this adventure. Of course we appreciate any prayers as we prepare, but please plan to lift Harper up June 10-19. We will post updates as we can! ❤️