I have recently found myself increasingly drawn to the pages of the Old Testament, to the stories of God’s people who feel lost or abandoned, burdened or heavy, weary or worn… and then the beautiful truth of how God rescues them time and time again.
What I love the most about those events is that in all of the rescuing there is a foreshadowing of the Rescue that God sent for all of mankind. Regardless of the situation, God always made a way, and now He has provided The Way through His Son.
I’m still clinging to that promise this week. My Rescuer is making a way.
I had a meeting this morning with one of the doctors on Harper’s team to go over results from her neuropsych testing. The news was good and bad, and a bit complicated- but isn’t that always the case with Harper?
The good news is that it does not appear that Harper has actually lost any cognitive skills yet as a result of the ESES. The skills she had learned are still in there. The trouble is retrieving them. She needs things presented and asked in a multitude of ways, and needs a lot of prompting and cues. Eventually she can get to the answer that is needed, but it takes a lot of time and effort.
That’s where we start getting into the bad news. While the cognitive skills are still in there, she’s struggling with her short term memory and basic awareness, so there is a lot of confusion and losing track of what she’s doing. She wanders, she drifts, she forgets, and she gets lost. She needs constant attention and assistance, and it is recommended that she have continual one-on-one guidance throughout the day.
However, even with continual one-on-one assistance, in this season the doctor said our goal is simply to keep reviewing those skills she had previously learned and do all we can to help her not lose those, because right now they do not think she is capable of learning and retaining new skills. Until the ESES and seizure activity get under control they feel her cognitive development will be at a halt. And as of right now, the current treatment plan has not helped at all.
We head back to Duke this week for another few days of IV infusions and a meeting with the neuro there. He is currently in charge of Harper’s treatment plan, and our doctor at Johns Hopkins reached out to him to share recommendations about adding IVIG treatments to her infusions as well as another daily medication to target the new seizure activity that showed up on the most recent EEG. We have not yet heard a response to the recommendations, so we are eager to hear what he has to say this week.
Here are some specific prayer requests for this upcoming week:
1. Safe travels to and from Durham (and back and forth between the hotel and the hospital each day!)
2. Easy IV access on Monday morning- calm nerves for Harps, no rolling veins, and just one stick!
3. Quick and smooth infusion Tuesday morning so we aren’t late for our meeting with the doctor
4. Good communication with the doctor on Tuesday- open hearts and minds on both ends, understanding, clarity, wisdom, agreement on treatment plans, overall cooperation
5. Minimal side effects from the treatments- last time we saw stomach pain and issues, intense fatigue, extreme mood swings and emotions, and headaches
6. Seizure activity to subside! SWI to decrease. Nightly nausea and stomach pain to end. Mood swings to level off. Peaceful sleep to come.
7. Make her brain come alive! Old skills stay intact and retrieval to come quickly. Memory to improve and awareness to increase. Confusion to dissipate and learning to rev back up!
8. And while you’re praying for Harps, we know many others needing healing from Him, including my dad and Kirby’s parents, as well as a family friend (Stacy).
Thank you for praying and believing with us 💜.