Hey friends and prayer warriors! It’s been over a month since I’ve posted anything, and my last post was pretty glum, so I’ll start this post off with some great news:
15 days seizure-free!!
Yes, we are officially over two weeks with no seizures, so that it is reason to celebrate! Over the past month, some crazy things happened with Harper. At the end of September, Harper had a 24-hour spell of breakthrough seizures. We had a couple of good days after that, but then she suddenly stopped swallowing her medicines. We had a rough week of trying to switch meds to liquid forms and coerce her to take them, days of only getting half of her doses in her, bouncing back and forth to doctors, and dealing with small seizures.
Then, just as fast as it started, it ended. She started taking everything again. Her Duke neurologist referred us to the ENT up there to check out her tonsils, which are fine. They have also requested a swallow-study in November. We contemplated calling that off once she started taking the meds again, but over the last several days she has started struggling and gagging a lot again, so for now we are going to hold on to that appointment.
In the middle of all of that going on, we got a call from the Kennedy Krieger Institute in Baltimore through Johns Hopkins to set up a round of testing. They are ready to do the neuropsychological testing, so we have an appointment for that in December. It isn’t invasive, just one long day of tests, but the goal is to evaluate strengths and weaknesses and determine if there are any specific brain “functions” being affected by her cysts and seizures. It’s more of an informational test to help the doctors know how much she is being impacted by what’s happening in her brain, and also to help us in planning ahead for school and therapies and such.
So, by way of prayer requests, lots of traveling in our future. One more Duke trip and a Baltimore trip before Christmas, so pray for travel mercies and a happy traveler! We also have to make a decision this week about Baltimore travel- Kirby could take time off of work and we could drive again, but the last trip was not so easy with Harper. It’s not an impossible trip, but it is long and she did not handle it well at all. Our other option is to spend the extra money on flying just Harper and me up there, which wouldn’t take long at all. But I’ve only flown a few times myself and Harper has never flown, so the thought of flying alone with her and then catching rides around the big city on my own is a bit nerve-wracking!
This ride with Harper is nothing short of a roller coaster. It’s so unpredictable, flying from one extreme to the other with no warning. Right now things are going really well. No seizures in the last couple of weeks. Preschool is going well. She’s growing and learning and playing. With everything so calm and smooth, it’s hard to move forward with testing and doctors. It would be so nice to just take a break from it all and try to be “normal” for a bit.
But, as has been the case since that day in February 2013 when they told us there was a problem with our unborn baby, we feel like we are just waiting for the next drop. It’s the whole roller coaster mentality… how far up will we climb before we fall again? It’s been the pattern for several years now. To be clear, I still have faith in God’s divine intervention. I totally believe that He could completely heal her if He chose. But I also choose to accept His good and perfect plan- and so far that hasn’t been complete healing of our girl. Does it make sense to me? No. Does it always seem fair? Not even close. But I serve a God who knows exactly what He is doing, who is never caught off guard or surprised by this crazy world.
Kirby and I are currently working with the children at our church, and over the last few weeks there is one word that has come up in our lessons through some of the New Testament books: endure. It’s been a theme through our studies as we’ve talked about enduring through trials and staying the course when you’re weary and it’s hard. Enduring when you don’t understand or it doesn’t make sense. Enduring through persecution and pain and heartache. Enduring because of the power of Christ, pushing through in His strength and not our own. Enduring because this world and it’s troubles are temporary, praise God!
Everyone is fighting a battle of some kind. Some battles are big, some are small, but they all wear us down. Health issues, financial issues, marriage issues. Dealing with loss, addictions, job struggles. Just trying to make it through Monday can be a battle some weeks! But we can endure- not because of our might, but His.
Have you not known? Have you not heard? The Lord is everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:28-31)