Today I’m preparing for a Duke trip tomorrow. And when I say preparing, the preparations aren’t the usual preparations a mom makes for a trip. In fact, this is just a day trip- go up, have our appointment, come back. It should involve little prep work.
However, for me, these trips always require some extra mental and emotional preparation. It seems quite surreal that visiting Duke hospital is such a normal thing for us now, such a standard part of our routine every few months, whereas three years ago I had never been anywhere near it. I always think back to the first trip I ever took to the medical facilities in Durham- 37 weeks pregnant, rattled by the news that my baby may not survive, trying to find some kind of rest in a hotel room before meeting with a special medical team to discuss our options. And then just two weeks later making that trip, uncomfortable from the recent c-section, having not laid eyes on my newborn for four days, and scared to death of what I would see when I arrived.
Praise God, tomorrow I’ll drive up with a wild, chatty, full-of-life two-year-old. It won’t be a quiet ride and I won’t have that strange void like part of me is missing. What a blessing! (And I’ll need to remind myself of that blessing many times as we travel tomorrow and that little blessing gets tired of sitting in the car seat!)
I just have to prepare myself for the emotional drainage that comes from visiting a children’s hospital. The smells and sounds that remind me of the darkest legs of our journey. The people around us who may be walking the darkest legs of their journeys. Facing full-on the fears of what could have been or what may come. Bracing myself for doctors who tell me so much is still unknown about my daughter, or there’s nothing they can do. Reminding myself to celebrate all the things she is doing that they once said she may never do.
I have my list of questions and concerns ready, as this is our first visit with her neurologist since her seizure last month. It sometimes seems odd to worry so much over someone who has seizures so infrequently- but what so many people don’t realize is the severity of those infrequent seizures. They are long. They are dangerous. They are life-threatening. And we never know when they will come or if they will stop.
At this stage of the game, one of our biggest concerns to address is her medication. In less than a year, her dosage has almost quadrupled. (And one year ago, she wasn’t on anything at all). She is really on a high, high dose of this particular medicine, and her weight has not changed much over the past year to warrant so much of change in dosing. Her appetite is hit or miss, and her sleep has become even more of an issue. She does not nap, she stays up late, gets up early, and does not sleep through the night. When she does sleep, she is extremely restless. She hits and kicks in her sleep, often cries, and has started occasionally having some type of night terror in which she flails and screams inconsolably. We are all exhausted.
There are also some behavioral changes we’ve seen, but those are harder to pinpoint. They could be a mental thing, they could be a medicinal side effect, and they could just be the terrible-twos. It’s hard to tell at this point. She’s grown more impulsive, running from us, jumping off of beds (and getting hurt), throwing things, etc. She doesn’t handle going out in public very well, and gets uneasy in overly large crowds with lots of noise. She enjoys people and is social, but if it gets too loud or too crowded, she gets anxious. We’ve been learning to try to recognize her cues, and limit how much we do- fewer excursions and shorter time spans, and being flexible if we simply have to stop and go home.
That being said, we hope to gain some insight tomorrow. We appreciate your prayers for safe travels, happy travelers, and a productive visit with the neurologist. (And also for a calm spirit for Mommy!)