Sunday, October 23, 2011

Infantile Spasms Awareness Week and Pumpkins

So tomorrow kicks off infantile spasms awareness week.  I like to think of IS week as the kick-off (must be my word tonight) for Epilepsy Awareness Month, which is all of November.

Finn never was diagnosed with IS but they waffle back and forth (they being a myriad of neurologist...small n as they are not God) with thinking she had some sort of atypical version...she showed delays and seizures but not the hyppsarythmia pattern associated with IS.

The end result, I guess, doesn't really matter.  She has seizures.  She has delays.  It sucks.

This weekend we had to load her up with diastat.  Not my favorite thing to do.  For some reason I have this hang up about giving her diastat.  Like it makes her worse or I am damaging her brain by giving her this rescue medication...maybe because it is called a rescue medication...

She also had what is called a drop seizure.  It looked like someone came up behind her and pushed her head into her chest, and her arms flung out, and then she dropped to the floor and her head smashed into the concrete floor of the store twice before I could get to her...split lip and goose-egg.

Have I mentioned I hate epilepsy????

I also hate that it makes me miss school functions for the boys and they have to learn how to time seizures and they know what rescue medications are and they know where they are located in our house and they know what seizures look like and what to look for and they have to do without things because Finn needs therapy or therapy equipment or because she can't deal with the temperature change or they get fat lips because they are trying to grab her and her behaviors are so bad they she is biting and flinging her head around.

I hate that I feel jealous when I see pictures of other little kiddos Finn's age doing regular things like jumping in corn piles and running through leaves and singing songs and doing puzzles and Finn is biting hunks out of her arms and bashing her head on the floor in a seizure and struggling to say simple words and still runs lopsided.

I hate that my very next thought is guilt because so many of my seizure mom friends would give their right arms for a babe would could run lopsided like Finn.

And I wouldn't trade my Chooch for anything and I would give up every breathe without even thinking about it if it took these damn seizures away.

I hate pumpkins

I mean, I don't hate the actual pumpkins...they look nice...pumpkin pie, pumpkin bars, pumpkin bars...all good things

but carving pumpkins irritates me
it makes a mess
they never really turn out
it feels like a waste of time

did I mention the mess?????

I somehow feel like the Grinch who stole Halloween today....

Get your purple ready

Rock it out

For epilepsy awareness

for all the kiddos who suffer from IS and epilepsy, for their parents who suffer along with them and all the siblings who know more about epilepsy than they ever should have to and who do without with grace and strength beyond their years....

Not another moment lost to seizures

Sunday, October 9, 2011

Long time No Blog

Long time no blog


Life has a habit of just happening sometimes.

I started my new job (which I LOVE) and well...just got busy.

Finn also started a whole new medicine routine and that has taken some getting used to.  It is so much fun to see little bits of her personality pop out more and more but it is very apparent that she is slipping farther and farther behind.  She is still lagging in speech BUT it is better than it was.  Her behaviors now are what is concerning.  She is biting herself and throwing tantrums that cause her to literally turn black and blue.  She has given herself bloody noses and goose-eggs as well as literally biting pieces of her arm and hands off.  Poor little chooch

We were at my parents a couple of weekends ago, celebrating fall and the Renaissance Festival and my mom made these amazing dumplings so I thought I would share the recipe.

thanks mom

they are spectacular

Apple Dumplings

preheat oven to 350
spray a 9x13 cake pan with nonstick spray (or grease one...however you roll)

2 packages of refrigerator crescent rolls
1 cup butter
1 1/2 cups of sugar (I usually use less...I like them a bit more also calls for white sugar but the next time I make them, I think I am going to use brown sugar and see what happens)
1 tsp cinnamon
2 large apples, peeled, cored and sliced into 8 slices from each apple
12oz of mt dew

starting at the small end of the crescent rolls, roll up a slice of apple and tuck in the corners so you have a little apple pouch....repeat for entire 2 cans of crescent rolls

melt butter on stove and add sugar
mix well
add cinnamon and whisk

ladle over apple pouches
pour mt dew over all everything

(don't looks really soupy.  I was nervous at 1st too but it all turns into deliciousness in the baking)

bake for 45 mins

serve with ice cream (try some vanilla bean or cinnamon ice cream...heavenly)