Wednesday, June 22, 2016

Today We Celebrate

Today is a good day. An amazing day. A day to celebrate.

Today marks the one year anniversary of Teddy being seizure free. Teddy's last seizures were on Father's Day on June 21, 2015. Here's my Facebook memory from a year ago: Happy father's days to all the dads, especially Mike Kassie and Dave Blondheim. I'd be lost without you guys. On a positive note, AJ drew his first picture of a person tonight-a picture of Teddy to make him feel better after he had another seizure. Right now Teddy is sleeping with ice packs under him, trying to keep the fever from spiking again and causing more seizures. Obviously Keppra isn't going to stop him from ever seizing again, not that I really thought that but it was nice to pretend.

Some children with this diagnosis have frequent, at times uncontrollable, seizures. We've been extremely fortunate that Teddy's only had seizures every couple months or so, starting when he was 5 1/2 months old. Don't be fooled by the word "only." That word describes the frequency, not the fact that each seizure episode ripped our lives apart, scared us beyond belief, at times entailed an ER trip and took a few weeks each time to ease back into normalcy. Although I'm grateful for the relative rarity of Teddy's seizures compared to what could be, in ways I think it made each episode harder because we got up our hopes that he wouldn't have more ... that he had outgrown them ... that we were safe not to worry constantly ... and then the next episode would happen and shake not only Teddy but our entire world.

This was our first ER trip for seizures on New Year's Day 2014.

We put Teddy on Keppra in May 2015 after switching neurologists to a wonderful doctor who engages Teddy and asks us each visit, "What is on your heart?" (Beyond that, rumor is he's pretty darn smart, too.) It's not that our former neurologist didn't recommend Keppra, but we never got our questions answered to the extent that we felt comfortable putting Teddy on an anti-seizure medication with potentially serious side effects. The Father's Day episode one year ago were the first, and only to date, seizures since putting Teddy on Keppra. (It was one of those two-for-one seizure specials he sometimes has. Technically his last seizure was at 1 a.m. June 22, which is why this post will go up at 2 a.m. June 22.) After that, we increased his Keppra for about a month until we couldn't stand how miserable he was. We decreased his dose just in time to enjoy Teddy's true personality again for a family vacation. Since then, we've tweaked his Keppra twice to accommodate his growth and keep him in the therapeutic range of the medicine.

But that's enough medical history. Today we celebrate.

We ignore how much more the next seizure will shake our world because we've gotten so comfortable. We don't get our hopes up that in another year Teddy might be able to wean off anti-seizure medication. We don't relive the past. We don't worry about the future. There's time enough for that on other days.

Today we eat delicious peanut butter cheesecake brownie cupcakes. (Teddy told me that's what he wanted. I read his mind. Or my mind.) Today we make homemade pizza with friends. Today we play with balloons. Today we celebrate and are grateful for this milestone.

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