Well, what can I say? The blog has been silent the last couple of months. There have been things to share and updates to make, but to be honest, I just haven’t had it in me to write words. I’ve been dealing with some things physically, but also spiritually and emotionally as well. That tends to happen when you go through physical ailments, doesn’t it? As the Lord has been working in my heart on some big issues, for once I found myself unable to write about it. Usually I turn to this blog to pour out my heart and process things, but this time it’s been a little too personal to share with the world. I’m a pretty real person, open about my failures and shortcomings, but we all have that really yucky stuff deep inside our hearts that we just don’t like to face, let alone tell anyone about. So, as I’ve worked through that, I’ve been away from the blog world.
But now I’m back, not really ready to share any fabulous wisdom or insight, but I will share some updates about our family. When I last posted, we were preparing to take Harper to Duke for her extended EEG testing. And as I post now, almost two months later, we are doing that very same thing. I grew very ill toward the end of February, and by March landed myself in the hospital a couple of times, complete with IVs and medications and surgeries (oh my!). Good times, good times. So, we had to postpone Harper’s testing as I was unable to travel or stay with her, and now that I am finally back to normal (or as close to normal as I’ll ever be), we are ready to make the Duke trip.
The timing could not be more perfect, just another sign that God’s hand is in everything- Harper’s seizure activity has been picking up rather rapidly over the last several days. Fortunately there have been no big seizures and no need for rescue medications, but she’s had seizures three days in a row now, including three just this afternoon. All of them have come during her sleep so far, and have lasted just under a minute. With this progression, we’re seeing some changes in her moods and behavior, and also noticing a lack of coordination and some odd motor skill things, which again raises the question about where her seizures are coming from in the brain and if that could cause long-term issues with her motor skills in the future. These are things we’ve discussed in the past with her therapists, but there are just so many unknowns and so many variables to take into consideration.
But, that’s why we are proceeding with the testing this week. If all goes as planned on our end and on Duke’s end, we will check in on Wednesday afternoon and Harper will be continuously monitored by the video EEG machine- that means lots of wires and probes and being confined to a very small space, which will be interesting with a four-year-old. She will have an IV placed so that they can administer rescue medications quickly, and there is a possibility that they will wean her off all of the anti-seizure medicines she takes daily to increase seizure activity. This is the part that I hate the most as Mommy- knowing that they will try to get her to have these seizures that we so hate to see, and that there may be the need for IV rescue meds. Sitting and watching your child go through all the procedures is hard enough, but watching her lose control and suffer makes it infinitely worse.
This is all for her good, though. We want to see what types of seizures she is experiencing, just how frequently she’s having seizure activity (as there may be more than what we see), and what part of her brain is being affected. This will help the doctors better tend to her needs by ensuring that she’s getting the right medications at the right doses, and maybe help us become more aware of potential triggers or signs.
So, if you have time, pray for us this week. I need my own health to stay in check so I can take care of my girl. Kirby and the big girls will be holding down the fort at home without us (so pray for his sanity!). We hope for a quick and easy admission, safe and uneventful travels, and a cooperative Harper when it comes to getting her IV and getting the probes and monitors hooked up- for those of you who don’t know her very well, she is a fighter, which is a wonderful thing and has served her well, but it can lead to some intense battles if she’s not in the right mood! And we actually want to see some seizure activity while we are there- the more they see, the more data they collect to help her and the faster we get to come back home, but with that goes a need for emotional strength for the mama.
I’ve said it so many times, but it’s never enough… thank you all for following our journey and praying us through. We serve a mighty God who hears those prayers and answers time and again and gives us the strength we need to stay the course. “Three times I pleaded with the Lord to take it away from me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” -2 Corinthians 12:8-10