Hey friends… I’m doing something a little different this week after talking with one of our prayer warriors yesterday, and I’m listing out some specific prayer requests as we go into this upcoming week.
We are on the road right now for Duke so that Harper can get her steroid infusions to fight this ESES, which we will now be doing for three straight days every four weeks. That decision was just made at the end of the week after the doctor realized the first round of treatment did not prove to be effective, so we are going for a more aggressive treatment- assuming they can get everything in order to make that happen in the next 24 hours!
So, please excuse this lengthy list, but that’s just where we are right now. This disorder is complicated and it’s impact is not small, so I am learning to be more detailed and specific in my prayers as we navigate through 💜
1. PEACE… Peace that surpasses all understanding. Peace that comes only through Christ. Peace for Harper as she endures so many unpleasantries and asks so many questions. Peace for Maddie and Raegan as they watch their sister go through this and as they keep saying goodbye to us so we can make these medical trips (emotions are running high these days). Peace for Mom and Dad as we help each of our girls and each other through this, as we face so many unknowns, as we work through all the financial and scheduling details, and as we continue to trust God no matter what.
2. Ease of scheduling, especially in these next couple of months as we are working between Duke and Johns Hopkins and the traveling and trying to work in three days of infusions in a row instead of just the one that was scheduled.
3. Financial provision… God has richly blessed us every step of the way and we know He will not fail. We are so grateful for incredible insurance, but copays and travel expenses add up quick!
4. Easy IV access tomorrow! Harper had a very difficult time with the IV last month, and it took four tries to get a line in, even with ultrasound technology. We need tomorrow to be less traumatic for her!
5. Minimal side effects from the steroids.
6. The treatments to work. By work, we mean the SWI percentages to decrease. She is at 100%. We want her down to 20% or less. We want NO seizures and NO seizure-like activity.
7. No more regression. “Make her brain come alive!” May she stop losing skills, stop forgetting things, and fully remember again. We want to see God fully restore all the connections that have been broken in her mind. We want to see her understanding concepts, able to pay attention and focus, putting her thoughts and feelings into words and sentences in the appropriate context. We want to see full cognitive development again. We want the doctors to look at her and say, “This makes no sense- we cannot explain it- but Harper is healed and restored.” We want God to do what only He can do in a way that brings all glory and honor to Him.
I think that’s enough for one night… If you’ve made it through all that- thank you! We are grateful for our army of prayer warriors, and we are eager for the day when we can look back at this moment and say, “See what God did!” 💜