Friday, October 18, 2013

Just As Costly As Children



Our oldest cat suffers from severe stomatitis.  We took him to the humane society this morning for what we thought was going to be an extraction because when I quizzed the clinic staff at the last foster visit they said they perform the extractions.  I called again about two weeks ago just to clarify what needed to happen before the surgery.  We took up all the food last night and made ALL THE ANIMALS SUFFER FROM HUNGER, which ended up with a kitten stomping all over me this morning in bed insisting on being fed.  Anywho, after they examined him they determined that the stomatitis was so bad that they couldn't remove his teeth and we were referred to a "cat dentist" and was told that they take walk-ins.

I called the cat dentist from the humane society to see if we could come on in since it was another 20 minutes away (we live approximately an hour from the human society - same city, total opposite sides).  I was told they do NOT take walk-ins and appointment would be necessary.  Their first available was next Thursday.  We got some kitty antibiotics for Fat Boy and headed home.

Here's a Fat Boy fact -- when we adopted him his name was Teddy Bear but that morphed into Joe Bob, then Fat Boy and sometimes Fat Butt or Theodore.

Interesting note -- on the way TO (that fact is important - see above -- we live an HOUR away from the humane society) Fat Boy pooped in the carrier.  And y'all -- it was BAD.  Like roll the windows down and stick your head out of the window bad.  I told the vet tech to totally throw away the towel that we use to line the carrier.  We waited TWO hours to be seen, was essentially sent home (another hour drive) with a cat who was smeared with poo and a carrier painted with it.  Yeah.  Just. Yeah.  I think my nose hairs have been permanently singed because of the nasty. 



Friday, September 6, 2013

Generic Medications

Kels had her routine psychiatrist visit this morning for the depression meds and while there she filled out a depression screening tool (hello? that's why we're there!) that the doc like to have filled out every once in a while.  As it turns out, her score compared to the last one back in October was nearly double.  After talking to him a while about this, he asked me if she took generic Lexapro.  I answered yes, because we take whatever the mail order pharmacy send.  Apparently, the generic forms are WAY watered down except for the one manufactured by Mylan.  He also said that the Klonopin (clonazepam) she takes is good as a generic only if manufactured by Mylan and the generic Lamictal (lamotrigine) only if manufactured by Teva.  This is going to warrant a conversation first with her neuro and then with the pharmacy since this might in some way contribute to our lack of control. 

Thursday, September 5, 2013

All The Amazon Things and Bread!

We love, love, love all things Amazon at our house.  With the sole exception of my husband, we are a Kindle household.  We each have our own Amazon Prime account and shop it frequently.  I do think that yesterday; however, was the largest Amazon delivery day in terms of sheer number of items for us to date.  We brought home six packages from Amazon.  Among those were:

Watch for Hubby
 
 
And:

Spark -- What Gets Me Going

And:

New Toy for the Hubby


But the most exciting delivery of all for me is this right here:

Mine!

Yep, a bread machine.  I used to have one back in the day and it was as big as my kitchen counter.  Made bread like a champ, but I have very little counter space in our kitchen as it stands and it was just always in the way so we donated it to Goodwill for someone else to enjoy quite a few years ago.  This was so a spur-of-the-moment purchase (like the ice cream maker a week ago - more of that in a sec) but I've already planned out the breads for the weekend. 

Little aside about the ice cream maker - I am beyond excited about this thing and I don't even eat lots of ice cream.  I think I'm on batch number 4 or 5 in a week and the family and neighbors are loving the heck out of it.  OMG!  I (a self-professed home chef and foodie) am AMAZED that you can throw a bunch of liquidy stuff into a canister, surround it with ice and salt and BOO-YAH!  Ice Cream.  Just. That. Simple.  Who knew?

Anywho -- back to the bread machine.  I've pulled out my dusty bread recipes and plan to innundate the neighborhood with fresh bread this weekend.  I have a feeling that whenever my neighbors see a new Amazon box sitting out for trash pick-up they either think, "Holy Crap, she bought a what?" or "Holy Crap, food!"  I'll be sure and post some bread pics from the weekend, you can bet on that.

Wednesday, September 4, 2013

Goodbye, True Blue Potiga

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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.

Tuesday, September 3, 2013

Decisions

Click to view

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?

Wednesday, August 28, 2013

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?


Wednesday, July 31, 2013

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.

Wednesday, March 6, 2013

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.

Monday, January 7, 2013

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.

Monday, July 16, 2012

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.