Goodbye, True Blue Potiga

What was touted to us as the most hopeful new drug for Kels back in March has now been taken from our arsenal due to an unusual side effect that so far cannot be explained.  It turns people irrevocably blue.  Like Smurf-blue.  Since they (has anyone ever quite figured out who “they” are?) cannot figure out the why of it, Kels has to come off.  No big loss since it didn’t seem to help with her overall seizure control anyway and it is very expensive.  So we’re back to the regular meds, which currently includes Keppra, Lamictal, Vimpat, Klonopin, Diastat as needed, Depo-Provera (to help with the hormonal induced seizures), and Lexapro to try to combat the effects of all the drugs, the epilepsy-induced depression, and life as a home-bound 21 year old in general. 

But wait!  Her neuro says that there is another up and coming, promising drug that should be available soon.  I can’t remember the name of it currently, but he’s got great hopes (sounds like a familiar song, doesn’t it?).  We’ll see.  She’s taking it well, even through the seizures that’ve been happening with the all-too-familiar playing with the medicine.  I wish some days that I could blink and take it all away from her, but sometimes our lot in life isn’t fair.  Sometimes our struggles aren’t even about us; they are used through us for a higher purpose.  Maybe we’ll see a breakthrough in her lifetime in time enough to help her.

Decisions

So I’m trying to make a firm decision about when I actually leave my current position to begin my student teaching.  I can either begin in January, 2014 or September, 2014.  While I’m ready to be gone and begin a new career, I’m a little scared at the same time.  I’d be leaving a well-paid, full-time job for the certainty of a three month unpaid student teaching position and then the uncertainty of a job in hand.  There are pros and cons to either jumping in in January or waiting until September. 
 
January Pros:

• Sucking it up, buttercup, and getting it done. 
• Not being here in my current job
• Greater possibility of finding a teaching contract in March/April

January Cons:

• Not have a regular paycheck

September Pros:

• Few more months salary, which in turn leads to…
• A couple more vacations with the hubs and family (we love our travels)
• A nearly 5 month break from school (both learning and teaching)

September Cons:

• Having to stay at my current job for an extra few months
• Slightly decreased possibility of a teaching contract going into the holidays

I know I don’t talk about it much in print, but there are circumstances currently that make this position much less than desirable and the thought of staying a few extra months is dismaying.  But hey!!  Vacations!!  Money!!  And whether I start in January or in September, I’m fortunate that my husband covers my insurance and other benefits so that’s not a particular worry. 

So, from my vast readership of two – thoughts?

Firsts

This past Monday my youngest daughter started high school.  Like all new beginnings and firsts, this one made me reflect back on her life.  If I close my eyes, I can see her curly blonde hair sticking up every which way.  I can see her blue, blue, blue eyes dancing when she laughs wide and big and carefree.  I remember her first day of preschool and how nervous and excited she was to be around other kids.  I remember her first day of kindergarten, public school, middle school like it just happened a second ago. 

She has grown into such a joyful, funny, intelligent and beautiful young woman with a wicked sense of humor (served with a side of sarcasm).  She loves God and family and friends and music.  Oh, the music.  This kid of mine can be in a different part of the house and I can belt out a line from a song of nearly any genre and she’ll join in and sing with me.  I have videos of this kid singing in the car on road trips of Black Sabbath, Queen, the Village People, Imagine Dragons, Mercy Me, etc.  She’s awesome that way!  I love her so, so, so much that my heart hurts.  I describe my girls like this:  my oldest is that little piece of my heart that walks outside me; my middle is that little piece of my personality that walks outside me; and my youngest is that little piece of my soul that walks outside me. 

So when did this

 
Become this?

The post that redefines it all

I initially began this site as a way to document my oldest daughter’s life with epilepsy but as it became more difficult to write about her ongoing struggles with her life, I decided that I would totally change the focus of this place.  Her epilepsy doesn’t define her and not me by extension.  So then I started thinking about what I wanted to say here.  Who am I?  I’m a flawed Christian, grateful mom and wife, current student, future educator, disgruntled state employee, middle-aged, young at heart, frequent traveler, foodie, kitten foster mom, wine lover, musician, voracious reader, and I could go on and on and on.  So with those descriptives I decided to just write about whatever strikes my fancy on any given day.  No specific subjects, no specific prompts, nada.  Throw up a picture or two and call it a post?  Sure.  Tell a story about one of my kids?  Probably.  Whine and gripe a little about life when it’s hard?  Can do.  Give thanks to God for the good stuff?  Absolutely. 

 

Let’s see where this takes us.

New Drug - Potiga

Kelsey does not have good seizure control right now and at her 6-month visit with the neurologist this past week he decided to try her on Potiga.  She’s taking a relatively low dose to begin with so we have some wiggle room but after a week of it, neither she nor I can tell a huge difference in the seizure activity so far.  He also wants to transition her to an adult neurologist and at nearly 21 – it’s time.  BUT it’s hard to leave a facility and a physician that you’ve been with for so very long and through so much with.  I know that we would have to switch eventually, but actually hearing it was difficult. 

More difficult, though, was having him tell us that after Potiga, there’s really nothing else at this point that we can do for her.  There’s no drug we haven’t tried, no surgery or implant that we don’t already have, and sadly, nothing new on the close horizon.  I know I’ve said this before, but as a mom, those words just sweep my feet out from under me.  My heart hurts for Kelsey and all she endures, but more importantly my soul sings for her because of how well she does handle it all.

I’ll update more after we’re on the full dose of Potiga.

Yearly Update (heh)

I know that I always say I’m going to update more and somehow I never do. So this time? I’m not even going to say it. I’ll update when I update and it’ll be a surprise to everyone. On the seizure front, nothing really has changed. We’ve added drugs, we’ve taken drugs away, we’ve amped up her VNS output and the end result is still the same - no good seizure control. We are hip-deep in the disability approval process right now and hopefully we’ll get an approval soon – we’ve gotten too many denials.


Kels has decided to take a semester break from college. She’s so very discouraged with her progress and how very slow she has to take it because if she carries a full load she tends to stress herself into more seizures. I want her to have a semester of “normal” life and socialization outside of the home, but at this point I don’t know that even getting a part-time job will be feasible since her seizures are so unpredictable and will wreak havoc with a work schedule.

On my own school front, I’m finishing up my certification and will be ready to begin my Demonstration Teaching in August. I am so done with healthcare I can taste it and while I am grateful to have a job, I’m ready to be done with this place and move on to the second half of my work life.

My dad was diagnosed with prostate cancer the Sunday before Christmas, which entailed a week-long hospital stay and lots of hospital time (see?? I just can’t get away from hospitals – work there, hang out there with my kid in my free time, hang out there with my dad in my free time, hang out there for myself in my free time…) His prognosis is okay for a man his age (70) with the only treatment for him being hormone therapy. The big joke in the family right now is that he gets to go through menopause right alongside his two girls.

Driving Ms. Kelsey

Kelsey got so close to being able to drive again, just had another 2 months to go until freedom, but as is her pattern she had a seizure on July 5. That means another six-month countdown. I believe that she is having many more seizures than we are aware of . While we were on vacation I had the opportunity to watch her sleep and again while we were visiting my dad this past weekend. She jerks and twitches and moves constantly in her sleep. I’m not talking a little twitch here and there, but full on rhythmic jerks that last anywhere from 30 to 90 seconds. They aren’t the convulsive, whole body seizures, but might be her arm or leg moving in a rhythmic pattern or her arm and hand “floating” above her body. And after a BRIEF respite (maybe 30 minutes), she does it again. And again and again and again. I am convinced that these are sleep seizures. Every once in a while she will wake up in the morning with sore muscles and a bloody tongue and then we know for sure, but with these more mild events it’s hard to tell.

Her neuro started her on Vimpat a few months ago and it seemed to decrease the frequency of her seizures to a degree. We have at least been able to take her off of the Lyrica and the Zonegran with the addition of the Vimpat. She still takes Keppra and Lamictal, as well, but her response and reaction times have improved to some degree.

I don’t know if this is ever going to be something that she can conquer and like I’ve said before, my heart hurts for her. Between all the surgeries, the VNS, and the meds you would think that SOMETHING would work better. But no. As she moves farther into young adulthood, the possibility of SUDEP crosses my mind more and more often. While it’s not something that we speak about, it is a concern that I’ve shared with my husband on more than one occasion. Sometimes this disease really sucks the life of her and sometimes this disease just really sucks overall.

Weekend From Hell

Here's a day-by-day recap.

Friday: The Dog Tried To Kill Me
I am nearly blind without contacts or glasses and like most middle-aged people who are in this predicament I have learned how to navigate my way to and from the bathroom in the middle of the night with no sight. Most nights, this happens with a minimum of injury. This past Friday night my dog tried to kill me by lying directly in my path. As I was gingerly trying to step over what I knew to be her sleeping blob at the foot of my bed, she nervously tried to move out of my way. Her huge collie-butt collided with my size 8 foot and I catapulted myself over her so that I wouldn’t hurt her when I went down. When it was all over and done with, I sprained my knee and my elbow and have some pretty serious rug burn on my cheek and eye socket. I really think I might have gotten a hairline fracture of the cheekbone, but never did go to the ER to get it checked out. As she is getting on in age herself, I have cut her some slack in her previous murder attempts at night. This time all the animals got a life sentence of no more sleeping in my bedroom at night. Of course, this translated into all of them waiting breathlessly at the door just waiting until someone opened it up enough for them to make a mad dash through the opening and my husband and I opening the door just enough to toss them back out (repeat endlessly throughout the weekend).

Saturday: Shuffled Along Like an Elderly Woman
Due to the injuries from the night before, the pre-existing mid-back arthritis and disc issues, I walked through Saturday like some old, decrepit, foot-in-the-grave woman. I was moaning and groaning my way through the Farmer’s Market, turning heads with my brilliantly colored rug burn that was not very well covered by makeup. Every time I dropped something I had to estimate the value of the item being picked up against the pain I would incur by actually trying to bend over. I left a trail through the market, let me tell you, but I survived the day. I made sure I survived the night by taking some pain-killers and going to bed.

Sunday: Slicing Pineapple With My Thumbnails
On Sunday morning I decided I would like some fresh pineapple purchased at the market the day before. So I got out my handy-dandy, super sharp pineapple peeler/corer and merrily went about my business of slicing pineapple. It might have been the fact I just got out of bed, or the fact that I was hopped up on vicodin from all the injuries, but I totally wasn’t thinking when the base of the pineapple got stuck and I flipped over the corer to push it through. Yeah. A few choice words, tons of blood, and a box of bandaids later I was good to go. At one point, every member of my family had commented on my unusual grace and panache. I made it my goal to make it through the remainder of Sunday and into my bed without further injury.

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.

End of the Potter Era

Like many across the country this past weekend, we took the girls to see the end of the Harry Potter films. Of course, I embarrassed myself by crying like a moron at the end of the movie, but not for the reasons you’d expect. All of their lives I have read the same books and series that the girls have – just one of those “mom” things I guess, to make sure I was aware of what they were doing. I began the Harry Potter books with them when they were just pre-teens. Kels and I would switch off the book, her reading during the day and I would take it at night so that we were both reading at the same time. This happened with each book as it was released. When the movies began to be released, Cam was at the Harry Potter reading age, as well, and so the tradition continued. Reading the books and then watching the movies with all three girls.

At the end of the last film when I began crying, it wasn’t because of any events within the movie. It was because just like in the movie, I had seen one season of my girls pass before me. I started this journey with them and at the end, they had somehow magically turned into beautiful, young women. Oh, how that hits the heart of a mom…