We just got done with our annual 24-hour EEG and Reagan did awesome. Remember last year’s EEG? We were stuck in a tiny room, in our Dr.’s outpatient facility, it was 80 degrees, we had to share a community bathroom with 12 other patients, Reagan exploded out of her diaper in a bouncer and she did not sleep at night, so we left at midnight with our AC full blast all the way home. It was one of THE worst experiences.
So when her neurologist asked us if we wanted to go to the hospital for the EEG or their outpatient facility Rob and I sung in unison “THE HOSPITAL!”
Dr.: Are you sure? B/c the hospital has sick patients, we wouldn’t want Reagan to get sick.
Us: Let’s see…will we have our own room? Our own bathroom?
Us: Will it be on the neurology floor not with the general population of sick people?
Us: Can we have visitors, take a walk around the grounds when we need fresh air, have food other than the provided lunchables and twinkies at the outpatient facility?
Us: Yeah, we’re confident we want to be at the hospital.
We couldn’t have even imagined her being as happy and content stuck in a room, in the hospital, hardwired into a wall and computer as she was. She didn’t cry when the probes were put on her head, she was OK with the glue keeping them on, she was even OK with them wrapping her head in whatever it is they wrap it in. The only time she screamed was when they gathered the wires into the sock/sleeve thing. I don’t know what it was about it that upset her so much, but she screamed and held onto me like an octopus.
Reagan played in the water at the sink for hours, she played with the fridge door, she walked around the room and was totally content. She ate well, napped well, played well and gave all our friends that visited and all the nurses and Dr.’s hugs when they came in, and then clapped for herself.
Night time was the true test since that’s when it all fell apart during the last EEG. Reagan and I shared a twin air mattress and she took up the entire thing. She slept great, but I didn’t fall asleep until 2 a.m. and then Reagan woke up at 3:50 a.m. to laugh hysterically in her sleep. I don’t know what’s going on, but ever since the toddler bed conversion, Reagan likes to get up for an hour or two in the middle of the night, and have laughing fits in her sleep. Not giggles, I’m talking, deep, belly, body shaking laughs. I can’t even be mad, I just wish I knew what we were laughing at. Finally we got to sleep around 5 a.m. and she wanted to be up at 6 a.m. Nope! I just kept telling her to lay down, so she laid on my neck and we snuggled for the next few hours.
How did we make it an entire 24 hours smiling and laughing through it? Rob and I were so amazed at her resiliency, which made it so much easier on us.
When the Dr. came in to tell us about the EEG, he said it was pretty good. Nothing major, no seizure activity, but some activity typical for children who are developmentally delayed…whatever that means. This is the same Dr. who said Reagan would never do anything, and for us to make her comfortable. I’ll never forget that conversation, where it happened, and even what he was wearing (a tropical hawaiian shirt and jeans). It was one of those conversations that was so defining, so memorable. It terrified us and will always stick with us; it was probably the lowest point of our lives.
So we couldn’t wait to show him the below video and watch him, watch Reagan walk around the room; he thought it was incredible. And he was truly amazed.
I don’t know why I decided to ask, but I figured his answer would have to be more positive, given all that he just witnessed.
“So Doc, now that Reagan is walking…do you think she’ll be able to talk?”
His answer wasn’t much different than a year and a half ago, “well, I think she might be able to say some simple words, maybe some simple sentences, but nothing too complex.”
What? Did he not just see the video, the walking?
This time, getting that reply was not devastating at all. It was a challenge for Rob and I. Because, that Dr. doesn’t know about our God. Our God can heal her, he is healing her…and she will talk. She will do amazing things, she already is! She is bathed in prayer, she is determined and nothing a Dr. says will change her will to succeed. I think the Dr. is actually very good, but he can manage her meds, read her EEGs and try to keep the seizures at bay, we’ll manage the opportunities we give her to show us how far she can fly.