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Tuesday, December 13, 2011

One Reason I Don’t Update More Often

This is going to sound like an excuse, but to some degree it is the truth. I know that there are a few that routinely check this blog for updates on Kelsey and her condition and current therapies. Not from personally knowing Kelsey or our family or even out of concern, but because they or someone they love is going through similar circumstances. Whenever Kelsey isn’t doing well I tend to batten down the hatches and keep to myself. It’s a personal and family struggle, but not one we talk about often outside of the family. I don’t want to let our issues dash someone else’s hopes.

That being said, it’s been a long time since Kelsey has had control. She has daily seizures and we can count on at least one, if not more, every night. Her neurologist had pretty well said that the best we can do right now is adjust her meds until we see some results. We are waiting for the FDA to give final blessing to a new drug, Potiga, which might be an option for Kelsey and should be available in the next few months. Her current therapies include a multitude of drugs (Keppra, Lyrica, Lamictal, Zonegran, Klonopin, and Zimpat with Diastat as needed), all taken together and in dosages high enough to take down a fully grown adult male. That doesn’t even begin to encompass all the other drugs she’s been on previously. She had a parietal lobe resection in 5/08, and a VNS implant in 8/09. With all of this there is no control. In addition to the horrible seizure disorder, she battles depression and migraine-type headaches that are related to the underlying epilepsy.

There are days where between the fog of seizure activity and the side-effects of medication, it’s a wonder that she remembers who she is and where she is. She is slow, not mentally slow – don’t get me wrong – she’s extremely intelligent. But she is slow in response time, whether speaking or moving because of all the side-effects from drugs and seizures. Socially she has suffered because to some degree right now she is essentially home-bound. She’s in college only two days a week and most weeks she is fortunate if she makes it just one of those days and is able to stay all day. Outside of the immediate family she doesn’t really get a lot of public or social interaction. She’s lonely, and it breaks my heart.

She doesn’t want anyone’s pity, though. Through all of this, my girl has been strong – much stronger than a lot of adults are in her situation. We get comments continuously to the tune of, “how does she deal with it,” or “how does she cope,” or some variation of that. Seriously, though, what’s the alternative? Laying down and surrendering? As a child, we haven’t ever allowed that as an option for her. As a young adult, I hope she never chooses that option for herself.

Our family lives and loves through this horrible, horrible disorder. We are stronger together than a regular family could ever be. My girls look out for each other (don’t get me wrong – they will cut a sister within the house!) but they are tight. Ferney and I parent through this as best we can and we fail. A lot. But we don’t let this disease define us, or Kelsey. We make it part of our story, our history, and our life without making it more of a focus than it has to be.