Yesterday Rhema got her own princess cap.
We’re at home for the next 24 hours doing an ambulatory EEG. Initially, we were happy at the thought of not staying in the hospital, but we were concerned about keeping all the electrodes glued to her scalp and the monitoring equipment out of the toilet (literally). We’ve had to be pretty inventive in the last few hours, but so far, Rhema is doing great!
The diazepam protocol Rhema’s been on for the last six weeks has brought about some interesting results. There’s no doubt that it has helped to calm the electrical storm in her brain, and there have been several amazing moments for us:
1) In the hospital, a high dose of diazepam essentially cleaned up her EEG. Spike activity was knocked down to 2%!
3) Soon after she began the protocol, I believe Rhema spoke her first sentence. She wanted a popsicle and dragged me over to the freezer. She said in a sing-songy voice, “Iwant… …. …. … pop.”
4) She began greeting me. If I’ve been away for a couple hours, she runs to me with a smile, claps my hands together as I stoop in front of her and says “Yaaayyyyy.” Oh. my. heart.
5) This past weekend some people stopped by our house (2 adults and a 6 year-old girl). Rhema walked right up to them, and when they said hello, she repeated “hello” right back to them. Then, with interest in her eyes, she walked over to the little girl and gently patted her on the chest. Brandon and I had to pick our jaws off the floor. We’re still trying to figure out what caused that little exchange. We have never seen Rhema do that before. Ever.
Most of these events have been “Elvis Sightings” moments; they came out of the blue, and then they disappeared just as quickly, not to be repeated.
And besides them, Rhema has just been Rhema.
In fact, the diazepam has actually caused some not-so pleasant side effects. It usually makes her hyperactive and agitated. She’s been unable to focus at school and we’ve seen an increase in noncompliance and tantrumming. She’s had trouble sleeping at night (but Kathryn prayed Ps. 4:8 and it’s been getting better!). And she has limited her already limited diet to about 3 food items.
Honestly, a small part of me was hoping for some earth-shattering miracle. I could see us on the cover of Children’s Hospital magazine with the headline “Medical Breakthrough” and Dr. BEAM beaming at our side. It didn’t happen. But that’s o.k.
I am just thankful. So thankful that God is God of both big and small miracles.
Only peace here in this heart of mine… and that, my friends, is one of the big miracles!
Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD is everlasting strength.” Isaiah 26:3-4