Today we met with Kelsey’s neurologist. Tomorrow we go right back to Hopkins to see her neurosurgeon. And Monday we head to Kennedy Krieger Institute to meet with a developmental pediatrician for the first time. A Hopkins trifecta. We scheduled it all this way kind-of on purpose. We didn’t want to think about anything to do with these appointments or what may come of them during the beginning of summer, around our tenth anniversary, or during any of our vacations this summer. So we pushed it all…including a follow up with our orthopedist for both kids next week…until August. And lo-and-behold, August arrived. Boo.
Today’s three month follow up with the neurosurgeon went well. It’s hard to see when you’re living day-to-day, and there are still so many obstacles, challenges and developments that Kelsey has yet to make, BUT she has come a long way since May. She is exploring more, engaging more, and playing more. And most importantly, her seizures are G.O.N.E. When we went for the first time in April, our doctor said that epilepsy was very common (1 in 26!!!) and very curable…but finding the cure was the hard part. We attempted to knock out the spasms with a high dose of prednisone, which ultimately didn’t work. Then we tried Topamax…and it worked! After one, very small dose on April 25, 2014 (ironically two years to the day since the posthemmohagic hydrocephalus…aka water-on-the-brain caused by a stroke in utero…was detected) we never saw another seizure. She takes Topamax twice a day, and after a little cherry flavoring added by our so-nice pharmacist, she takes it very willingly.
Dr. Kelley was pleased with Kelsey’s development in the last three months, how the Topamax was working for her, and gave us some good information for what to look for in the future regarding seizure activity, growth and development. Not surprisingly when she asked how Kelsey was doing, I went into a too-long explanation of her moodiness, high-maintenance ways and general difficult nature. I also focused on the new play and gross-motor skills she’s gained. The doctor smiled, nodded and took copious notes. And then she asked in a very quiet and calm way, “How about the seizures?” HA! Right, that’s why we are here. Oh yeah! They’re gone. Not a one since April! Guess that’s what you meant, huh, doc?!? A bit more important. LOL! OOPS! Priorities.
Tomorrow, we will go to Kelsey’s six month check up with her neurosurgeon who has operated on her four out of the five times she’s had surgery. We are really fond of Dr. Ahn and don’t expect any surprises tomorrow. Nor are we nervous about it…it’s more of a drudgery of driving to-and-from East Baltimore again and being at the hospital. We are curious about the correlation between hydrocephalus and epilepsy as it came as a surprise to us in April, but I’m not sure it should have. I don’t think it’s all that uncommon to have seizure activity after the trauma that Kelsey’s brain has experienced. Seems realistic right? Should it have been mentioned as a possibility? Or reacted to more when we saw (and reported!) what were her first spasms in late December? We’ll see.
On Monday, we will visit with a developmental pediatrician at Kennedy Krieger Institute. Did you know it’s not all that easy to find a developmental pediatrician? KKI is where you go in the Baltimore area. I have an opinion, especially as an educator and special needs parent, and I didn’t think KKI was a place I ever wanted to be with my own kids. We shall see. We definitely need some guidance from someone who can take all that Kelsey has experienced, evaluate her currently, and give us a good plan for the future. Right now all of her doctors and therapists are telling us that she’s at a 10 month old level, developmentally. We, begrudgingly, agree with this. She’s crawling, cruising, pulling to stand, climbing stairs, drinking from an open cup (in the bathtub, at least!), turning pages in a book and babbling (sometimes). She has not uttered a word, doesn’t point, doesn’t (consistently) wave, and only follows directions about 25-50% of the time (although I’m not sure that’s that uncommon for a 27 month old!). 😉 And she whines to get all points across which is
slowly driving me to the brink of insanity.
Ben saw a developmental pediatrician only once. We didn’t love him but we did gain some information that was valuable for his years to come. He told us to make sure he was never in a special needs-only classroom. He needed to be with typically developing peers. He also told us that fatigue would be Ben’s biggest struggle in life. We made sure he always had typical peers to learn from and he was totally correct about the fatigue issue…at least thus far. So I’m anxious to know what this doctor can do to help Kelsey. Again, she’s come so far but also has so far to go…
So, one appointment down, two to go. It’s a week with a lot of stress and I can only hope that the next two appointments go as well as, if not better than today’s. Thanks for your continued prayers and good wishes.