I wanted to update you all on how Kelsey is doing. We are seeing more smiles, hearing more “talking,” watching more play time and spending more time at home, versus in the car or stroller, killing time. As we wean her off the prednisone, she has added Topamax to control/stop the spasms. It appears to be working. We haven’t seen a spasm since in a week! I feel VERY CAUTIOUSLY OPTIMISTIC about this. In fact using all caps in that last sentence makes me nervous. I don’t want anyone to think I’m shouting. I’m actually whispering in prayer that what we see is truth. I remain cautious because we didn’t see any spasms last Friday but she had an EEG to prove otherwise. But, we did see 1-2 spasms per day last week before the EEG on just the prednisone, so I’m hopeful that the addition of the Topamax and the loss of all visual spasms is a good clue it’s working.
As I mentioned, Kelsey’s mood is better as the steroids decrease. She’s playing for increased periods of time, blabbering a ton and losing some of the cheek-chub she rapidly gained.
Kelsey’s grandparents (God Bless Them) will be in charge for a couple days next week and I’m hopeful all will go smoothly. We’ve been excitedly planning this trip for weeks (years!) and when all this came down in early April, this trip was one of my biggest concerns. Would she be “stable” enough for us to leave? Could anyone handle her mood swings? (I often can’t!) Would she have to go to the doctor while we were away? What about all the medicines. I was really worried. 99.9% about her and our parents, but also a tiny bit about Dave and me. We’ve already had two trips canceled because of Kelsey’s medical needs and I reeeeeeeeeally did not want to miss this one.
Just a week ago today, though, my wonderful mother sent me a text saying, “Whatever you do, promise me you will not cancel your trip. We will be fine. Promise?” I mean. Really. Makes me tear up just typing it. The support we have for these precious two is incredible. I am so grateful. I am acutely aware that not everyone has parents that will watch their kids as much as ours do (multiple times a week!). And to have parents that agree to watch two children with as many needs as ours for multiple days at a time…amazing. Thank you MomMom, Nia and DadDad!
When we return from this trip, we will head back to Hopkins the very next day for another EEG. Boo. Talk about coming “back to reality.” But hopefully this trip of ours will be the prednisone for our life. Goodness that prednisone is a cure-all (not that it cured her) for issues. Asthma! Allergies! And Pneumonia! Oh my! Hopefully the white sands and blue waters will restart, refresh, and re-energize the troubles we’ve been having and things will start looking up. Kelsey’s birthday is coming up very soon in May. Maybe this year will be her best year yet. I sure hope so.