Holy Smokes!!!!

Well...Holy cow...it's almost like I forgot my promise to myself to blog everyday (and make desserts.)  Well...OK...I did forget (about the blogging part...not so much about the desserts.)

Life, of course, has continued to race past us at lightening speed.

The boys are settling in at school and continue to amaze me with their unique personalities.  Nick is the most sarcastic, funny, deadpan 14 year old I have met (and I have no idea where he gets it from.)  He has decided that he and his friends are a posse (he calls them his consiglieres...where did he even learn that word?) and they all changed their names to ridiculous things.  His is something like Periwinkle something something something.  He is in speech now too (Discussion so he gets to argue which is awesome for him)

Dylan has some great friends too and has started volunteering at the local theater.  I think what drew him first was all the free pop and popcorn he could eat and drink but he keeps going back.  The free movies might help but I think he is a good kid too.  He hit a rough patch there for a bit but hopefully we are through that (we better be or it's military school)

Our house will be completely paid off this October.  Exciting.  Feeling like a grown-up for a change.  :)  The boys are helping my dad make Finn a playhouse this summer and then we are going to plant flowers etc right around it...maybe even a willow tree.  I am really excited.  The boys are also going to finally get their own rooms (thank you tax returns)  We will start framing them in sometime this Spring.  I might be as excited as they are because then their mess will be contained to their own rooms and I won't have them fighting over who made what mess because it will be pretty easy to see... :)

Finn has had some pretty rough times since Oct.  The past week has been especially difficult.  We had tubes put in on Thursday (pretty basic surgery) and then watched her seize about 25 times in a 4 day period.  She started a fever that night that finally went away fully on Thursday (the 16th) after a night in 2 ERs (don't ask) 3 hours of fast flow IV fluids, IV Keppra, 2 doses of rescue meds and several consulting calls with the Mayo.  She is finally back to her choochy bird self today.  And maybe even back up to her pre-surgery weight.

To celebrate, today we made candy popcorn.  I was going to make it on Valentine's Day but as we didn't get out of the ER and back home until 5am that morning, I just never got around to it.

It sort of tastes like Frankenberry cereal (or some other strawberry flavored cereal...I never really had Frankenberry cereal...it's just how I imagine it would taste)

candy popcorn
1 bag of puffcorn (or twelve cups popped popcorn, unpopped kernels removed)
1 30z box of jello (any flavor...I used strawberry)
1 can sweetened condensed milk

heat oven to 300 and line a roasting pan with tinfoil.  spray tinfoil with cooking spray or butter
dump popcorn into pan
heat sweetened condensed milk and jello powder over med/low heat until hot and bubbling (4-5 mins)
pour over popcorn and stir with long handled wooden spoon
plop in oven for 20 (I did 25...just in case...I hate mushy popcorn) and stir every 5 mins

spread on sprayed or buttered foil when finished and break apart

enjoy

:)

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.

AND...today...

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
and

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


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Long time No Blog

Long time no blog

Sorry

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)

Ingredients:
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 tart...it 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 worry...it 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)

Rhubarb Crisp

Yesterday, my parents came for a visit.  We don't see them enough so a visit is always cause for celebration.  They also brought the giant snowblower that I bought for $13.  It's a long story (well not really but I always seem to make those stories much longer than they need to be) and sufficed to say, the snowblower is gigantic and wouldn't fit in either the van (with the seats removed) or the Tahoe (YIKES!!!) so my parents offered to bring it up in the back of their truck!!!

It really is huge.  If I were motivated I would go take a picture but it is quiet and the baby is snuggling me so you will have to use your imagination....it is roughly the size of a riding lawn-mower only it is on 2 wheels.  Our driveway should be snowblow-ed out with a swipe down from the garage and then the pass back up to put it away!!!!

If it works...

My parents brought it up and the visit with them was lovely.  Finn loves her Grammy and Grampy and was busying yelling GAMMMMMMA GYAMMMMMMMMPA all day to show them something or other.  We played outside, grilled delicious brats and hotdogs (courtesy of mom and dad from the Appleton meat market...aka HOUSE OF SAUSAGE) and Cori grilled some yummy yummy steaks (his grill specialty)

To celebrate, I make some fresh rhubarb crisp (with double the crisp topping because really...isn't that why we all eat fruit crisp???)

Rhubarb Crisp
4 cups rhubarb (cut into bite sized chunks...about how you cut them up for a little one to eat
1/2 cup sugar (I always use a little less..I like the rhubarb to still be a bit tart)
1 tbsp flour
1 tbsp H2O

crisp topping (I double this amount because...well...yum)
3/4 cup quick oatmeal
2/3 cup brown sugar
1/2 cup flour
1/2 tsp salt
1/2 cup butter (room temp)
1 tsp cinnamon

in a greased 9x13 pan (a cake pan) spread the cut rhubarb...sprinkle the tbsp of flour and tbsp of H2O over the top of the rhubarb.  Sprinkle the sugar on top of it all. (pretty simple right?)

In a bowl, mix together: oatmeal, brown sugar, flour, salt and cinnamon.  Cut room temp. butter into tbsp sized cuts and, using a pastry cutter (or a fork) smoosh the butter into the mixture until it is all blended together and the mixture seems to hold together in clumps...you want to make sure you mix the butter in enough (I think the fancy term is "cutting" in the butter) so that the whole mixture sort of holds together...no loose dry parts to mixture.

Sprinkle the crust mixture over the top of the rhubarb mixture and place in a 350 oven for 35-45 mins (I always err on the side of 45-50 mins as I would rather have the crisp mixture crispy rather than soggy.

It smells delicious cooking in you house and tastes even better

It is especially wonderful served a little warm with a dollop of vanilla or cinnamon ice cream plopped on the top.

Our ice cream didn't work out yesterday so we had it plain...it's pretty freakin' good plain as well.

I have never had rhubarb crisp made to the recipe as I have always doubled the crisp part...it seems like there might not be enough crispy-ness but maybe I am just a sucker for butter, brown sugar and oatmeal :)

You can try it both ways and let me know which is your favorite.

Happy Sunday everyone and never forget to tell the people you love just how much they mean to you!!!

2 years old and ODD

So...after our recent fiasco where we were told that Finn is not on the spectrum (OOOOOOOOOOOOOOOK) but rather severely cognitively delayed with ODD...how can they even say that about a 2 year old I want to know...because seriously, isn't EVERY 2 your old ODD?  I mean...isn't that part of being 2 and why it is called the "terrible twos?" AND if she is so severely cognitively delayed (because she refused to make a choo choo out of 3 blocks because EVERYONE knows a choo choo isn't made out of 3 blocks) how can she have ODD?  ODD implies a willful challenge that being severely (to the extent they told us) delayed would prohibit...

Anyway...I digress....

Yesterday I had Finn help me make a simple banana parfait.  I think she liked helping more than she liked actually eating.  We will be adjusting her meds, again, since she has lost a pound in the last 2 1/2 weeks (stupid topamax.)  Over the next 15 weeks (once insurance approves it) we will be gradually weaning topamax and adding lamictal.  Here is hoping it helps with the seizures as well as the eating.  It would be nice if Finn's pants didn't fall off!!!  :)


Simple Banana Parfait

48 Nilla Wafers
2 medium bananas
1 box instant vanilla pudding (make according to pudding pie recipe)
container of whipped cream


mix pudding according to pudding pie recipe and set aside
layer 24 Nilla wafers in a baking dish (like and 8x8x2)
cut up one medium banana into slices and spread over wafers
cover the bananas with half of the pudding
cover the pudding with half the container of whipped cream (we used cool whip)

repeat with remaining ingredients

I also spread some butterscotch topping over the whipped cream portion as well (simply because I had it in the refrigerator and Finn likes to squeeze the bottle) :)

Everyone in the family thoroughly enjoyed it (even with Finn's obviously finger marks in the final whipped cream layer) and we had a great time counting out cookies and licking bowls :)

Epicureous Epitaphs

Epicureous Epitaphs

In the last few months I have felt compelled to reassess my life.  When contemplating my greatest accomplishments and pondering how I would wish to be remembered I keep turning to desserts.  No, they are not my greatest accomplishments by far.  No, they are not necessarily how I would like to be remembered (although they are high on my list.)  Rather, I have come to realize that my whole life is wrapped in food.  In celebratory food and in sympathetic food.  I cook when I am happy and cook when I am sad and cook and bake at all times in between.  The most joyous times in my life have an element of food (when my son Nick was born, the apple juice that I finally got to drink was like ambrosia) and the saddest moments in my life have held consolation in food (warm tapioca in the darkness of my closet as I wondered if I could really be a single mom.)

As an English teacher, I always like to challenge my students to write their own epitaphs.  To describe how they would be remembered…to live their life in ways that hold true to this final message.

Taking a page from my own teaching album, I have decided to take a crack at my own.  It has proven harder than I thought.  Sorry former students…this is a tough assignment.

A million years ago…back in the 1970s, the world was graced with a little girl who would go on to do small things in a big way.  Kris spent her life doing everyday things with great joy.  She didn’t really come into her own until her 30s but once she did, watch out world!!!  Kris enjoyed writing and reading and the breeze on her face and the grass under her toes.  She definitely did NOT enjoy sweating and so she was not the tiniest of small people but her heart was as large as her waistline (something not everyone can say.)  She loved with true abandon and her children and her partner were her truest loves in life. 

That is as far as I got before I had to make cupcakes

The filled kind

The kind my aunt Jayne made

My aunt Jayne was one of the best bakers I have ever met.  When she made a dessert, the heavens open, angel choirs sang and trumpets heralded its arrival.  She was soft spoken and kind to a fault.  I used to babysit my cousins for her when they were small and she would always bring me back presents from whatever vacation they happened to go on.  I found a coral flower she had brought back, on a tiny delicate chain and when I had my own daughter, I put it in a box and set it aside for her.  The last time I spoke to my aunt Jayne, I told her I had found the necklace and set it aside for Finn.  In true Jayne fashion, she told me “oh Kris, that old thing…you need to get her something nicer.”  I miss you Jayne and I wish I would have spent more time telling you how terrific I truly thought you were.

Jayne’s Filled Cupcakes

4 eggs

1 cup sugar

1 stick butter

1 cup flour

1 can (16oz) Hershey syrup

blend all together and add to cupcake liners in cupcake tin, fill 1/3 way full

1 8oz cream cheese

1/3 cup sugar

1 cup coconut

1 egg

6oz mini chocolate cips

Mix together until smoothish and drop 1 tbsp into each cupcake spot

Bake at 350 for 20-25 mins

While cupcakes are cooking and cooling mix:

1 cup sugar

¼ cup butter

1/3 cup milk

Blend all together and add 1/3 cup choc chips 

Cook over med low heat and keep stirring until thickened…spoon ganache over cupcakes and let cool

Delicious!!!

still no desserts tonight...maybe tomorrow

No desserts tonight...maybe tomorrow

Tonight I am sad

Finn has lost more words.  She is good at echoing, which apparently is not a good thing.  She is losing more and more words.  We lost Daddy again.  Tonight we lost Ick (her name for Nick) he is now just a grunt.  I am afraid.  I am afraid this autism monster and this epilepsy monster will rob us of her.

Sometimes I watch parts of her disappear.  She always manages to come back but what it...what happens when she can't?

Right now we are SMRTing her...labeling her disabled so she can qualify for grants and services that Cori and I cannot afford on our own.  Things she needs to help her reach her full potential.  Of course with this government shut-down looming on the horizon, those processes will also screech to a halt and the already slow process will stop.

So...

our window of opportunity that is already small and closing everyday will continue to grow smaller as the stupid government squabbles over who is better; democrats or republicans, while my darling daughter loses more words and drifts in and out of her own world and there is nothing I can do to change it.

it sucks

so

tonight I didn't make dessert

tomorrow maybe

tonight I wonder how we will pay our bills (my job is government and so is Cori's and my new job doesn't start until August) and how we will keep Finn in our world and how I will coax the words from inside her

tomorrow I will make cookies to help celebrate father's day
and
I will hope that Finn's ability to say Daddy comes back
so that on Father's day
Cori will be called Daddy once again