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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Sunday, October 23, 2011
Sunday, October 9, 2011
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)
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)
Sunday, July 24, 2011
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!!!
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!!!
Saturday, July 23, 2011
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 :)
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 :)
Wednesday, June 29, 2011
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!!!
Friday, June 17, 2011
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
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
Monday, May 9, 2011
no dessert
No dessert...I mean, I have made some but this blog post isn't about that
well
not really
maybe it is
I haven't written it in my head yet so I am not sure
I didn't want to make a blog about Finn and the struggles we face but maybe it is good to do that...maybe it is a release that needs to happen. I don't know. This is all new territory for me. It's like running in the dark, with scissors, through the woods, with some sort of monster chasing me.
Finn has epilepsy.
Finn has autism
My beautiful baby, they now believe (although "now" is the word of the moment with the doctors) they now believe she was most likely seizing since birth...small seizures not readily noticeable but there...lurking like some sort of monster only in the broad daylight. These seizures caused small electrical storms in her brain. Although small might be a relative term there. They know these give her migraine headaches.
Anyone have migraines??? I do and I can't imagine my tiny baby having debilitating headaches already...shouldn't she have to have her own children before those start??? :)
She has epilepsy. It's official. They had been using "suspected epilepsy disorder" but now it is official. Epilepsy.
I threw myself into epilepsy advocacy. Finding a cure, joining support groups. I could do this. We could do this. We can give her her medication, time her seizures, track them on charts, bring them to appointments, travel 5 1/2 hours one way to see her neurologists, do blood work. I could do this. It was hard but I was determined. I read books. Lots of books. I googled any and everything to do with epilepsy. I was informed, knew the right phrases, spoke with authority. I am a good advocate.
Finn has autism.
It's official. The initial testing was done by the behaviorist who decided more testing was necessary. More testing was done by the speech therapist and a behavioral psychologist. There is no denying it. There is no "maybe it's just some behaviors." It's a full-blown, 5 alarm diagnosis. The recommendation is 40 hours a week of intensive therapy. 40 hours. Keep in mind she is 23 months old. She still takes naps people. Not to mention the nearest therapist in the therapy they suggest is 75 miles one-way away.
So...
We have therapy for epilepsy and therapy for autism. When will I get to SEE Finn? When does she get to be a baby. She still is a baby. My baby in fact.
and
she is brilliant
She can concentrate on her blocks for hours...stacking and stacking. She knows how to turn the TV off and on and change the settings to make sure her movie is in and playing. I can't get that right all the time yet. She can unlock our front door!!!
She likes to lick things too...it is her newest fascination. She licks her fingers, the dog, her food before eating, her fingers (again...she chews on them too) the windows, strangers. She licks. Her little soft tongue is always tasting. I think she can sense people's moods by the taste they give off. Of course, that is just my theory. :)
She likes to read and will eagerly pull books and climb into laps for a read. She likes marshmallows and chips and her newest interest is Sommies (Zombies...ask Cori.) She is fascinated in figuring out how everything works and would gladly take apart anything she can get her hands on and then put it back together.
Our house is filled with sensory toys and materials...bubbles and weighted everything...Velcro attached to crazy places, chewies and pull toys. Boxes filled with packing peanuts and pringles cans with dried beans. Baggies with oozy gel and noise, musical toys. Finn loves music. She sings all her words. She can keep beat to the music and will stop everything to listen to Jack's Big Music Show.
We have sign language DVDs to help her communicate...to try to lessen the frustration that causes her to chew her arms and beat her head.
We keep to schedules and introduce things slowly to try to minimize the melt-downs.
We play outside but only at grassy parks...the paved ones are too risky with seizures.
We swim...like fish...as often as we can. Finn can swim....I am convinced she is headed for the Olympics.
Nick and Dylan are so patient. More patient than I ever was with my younger brothers. They dote on her and work with her and she learns more from them than any of the therapists.
I wish I could do more for them...the guilt consumes me...all the time and therapy and expense for Finn leaves little for them. Like the leftovers. That isn't fair. I don't know how to change it...how to correct it. How can I give 100% to everyone????
I hear that is a regular feeling...that guilt.
I hate it.
ummmmmmmmmmmmmm
I guess there was no dessert in this one
although I hear those Starbucks coconut mochas are pretty tasty!!! :)
well
not really
maybe it is
I haven't written it in my head yet so I am not sure
I didn't want to make a blog about Finn and the struggles we face but maybe it is good to do that...maybe it is a release that needs to happen. I don't know. This is all new territory for me. It's like running in the dark, with scissors, through the woods, with some sort of monster chasing me.
Finn has epilepsy.
Finn has autism
My beautiful baby, they now believe (although "now" is the word of the moment with the doctors) they now believe she was most likely seizing since birth...small seizures not readily noticeable but there...lurking like some sort of monster only in the broad daylight. These seizures caused small electrical storms in her brain. Although small might be a relative term there. They know these give her migraine headaches.
Anyone have migraines??? I do and I can't imagine my tiny baby having debilitating headaches already...shouldn't she have to have her own children before those start??? :)
She has epilepsy. It's official. They had been using "suspected epilepsy disorder" but now it is official. Epilepsy.
I threw myself into epilepsy advocacy. Finding a cure, joining support groups. I could do this. We could do this. We can give her her medication, time her seizures, track them on charts, bring them to appointments, travel 5 1/2 hours one way to see her neurologists, do blood work. I could do this. It was hard but I was determined. I read books. Lots of books. I googled any and everything to do with epilepsy. I was informed, knew the right phrases, spoke with authority. I am a good advocate.
Finn has autism.
It's official. The initial testing was done by the behaviorist who decided more testing was necessary. More testing was done by the speech therapist and a behavioral psychologist. There is no denying it. There is no "maybe it's just some behaviors." It's a full-blown, 5 alarm diagnosis. The recommendation is 40 hours a week of intensive therapy. 40 hours. Keep in mind she is 23 months old. She still takes naps people. Not to mention the nearest therapist in the therapy they suggest is 75 miles one-way away.
So...
We have therapy for epilepsy and therapy for autism. When will I get to SEE Finn? When does she get to be a baby. She still is a baby. My baby in fact.
and
she is brilliant
She can concentrate on her blocks for hours...stacking and stacking. She knows how to turn the TV off and on and change the settings to make sure her movie is in and playing. I can't get that right all the time yet. She can unlock our front door!!!
She likes to lick things too...it is her newest fascination. She licks her fingers, the dog, her food before eating, her fingers (again...she chews on them too) the windows, strangers. She licks. Her little soft tongue is always tasting. I think she can sense people's moods by the taste they give off. Of course, that is just my theory. :)
She likes to read and will eagerly pull books and climb into laps for a read. She likes marshmallows and chips and her newest interest is Sommies (Zombies...ask Cori.) She is fascinated in figuring out how everything works and would gladly take apart anything she can get her hands on and then put it back together.
Our house is filled with sensory toys and materials...bubbles and weighted everything...Velcro attached to crazy places, chewies and pull toys. Boxes filled with packing peanuts and pringles cans with dried beans. Baggies with oozy gel and noise, musical toys. Finn loves music. She sings all her words. She can keep beat to the music and will stop everything to listen to Jack's Big Music Show.
We have sign language DVDs to help her communicate...to try to lessen the frustration that causes her to chew her arms and beat her head.
We keep to schedules and introduce things slowly to try to minimize the melt-downs.
We play outside but only at grassy parks...the paved ones are too risky with seizures.
We swim...like fish...as often as we can. Finn can swim....I am convinced she is headed for the Olympics.
Nick and Dylan are so patient. More patient than I ever was with my younger brothers. They dote on her and work with her and she learns more from them than any of the therapists.
I wish I could do more for them...the guilt consumes me...all the time and therapy and expense for Finn leaves little for them. Like the leftovers. That isn't fair. I don't know how to change it...how to correct it. How can I give 100% to everyone????
I hear that is a regular feeling...that guilt.
I hate it.
ummmmmmmmmmmmmm
I guess there was no dessert in this one
although I hear those Starbucks coconut mochas are pretty tasty!!! :)
Wednesday, April 20, 2011
Thank you (and chocolate chip cookie covered oreos)
I sometimes lie awake at night and worry. Well, let’s be honest here, I mostly lie awake in bed at night and worry. I worry about EVERYTHING…you name it, I have worried about it. I have always been this way and after having children I was infinitely worse. I would lay in bed and worry about colds, school dances, the right clothes, grades, friends, no friends, cars, video games and how they influence them, athletic uniforms…the list seemed endless.
And then, I got pregnant with Finn. Holy moly did I worry. My pregnancy was rough and I was old and overweight and diabetic and I worried like an Olympic Gold Medal Champion. Every second was spent in a state of worry and guilt about not worrying enough.
And then she was born. I couldn’t sleep for worrying. And I knew something was wrong, something was off. I just KNEW…how a mother knows. In that spot in my soul that is all instinct. Doctors weren’t too sure. They didn’t worry like I did so they weren’t sure. Something was off, they would say, but don’t worry….it’s most likely nothing. Don’t worry.
And then there was something wrong. Labels and everything. Epilepsy. PDD. All those labels and testing for everything. Things I didn’t know existed and the testing continues and I worry.
Shockingly, though, I worry less. My worries are now specific. I worry about medicine (will she take it all or will it be a fight), I worry about side effects (will she get too hot outside) I worry about skills (will she lose them in the next round of seizures.) All specific worries…real worries, I guess they would be…a lot different than the abstract “what if” worries of before.
In the middle of all these worries, I have achieved a calm. Sometimes I really even do sleep through the whole night. Because I have been given a gift.
The gift of seeing miracles.
Everyday, I get to see miracles!!! I wake up and I am excited to see which miracle is in store for the day. My older son runs…he runs well…what a miracle that he can walk and that his gazelle legs move him fluidly through the universe. What a gift that I can watch that…so I take the time to see, to watch, my son run like the wind. My youngest son can name every video game known to man and can master video game techniques in seconds. What a miracle that his brain makes all those connections and when his brain makes the connections, his hands move. What a gift that I can see that process…so I take time to listen to him explain how to move this guy this way so he can climb a wall and escape. My daughter, my baby girl. What a miracle. She has given me the gift of friends…far and wide, spanning the globe. Her mere presence has influenced the lives of people we have never even met. What a gift that she has chosen to bring me along for the ride…so ride I do. I connect with other moms and dads and grandma’s and grandpa’s who have a similar gift. That gift of seeing miracles. And then, they share their miracles with me!!! I am privy to hundreds of miracles everyday, all day. Potty training and words and walking and crawling and eating and smiling…miracles, all day long.
I am so blessed.
Thank you
Thank you for sharing your miracles with me and for reminding me of all the blessings, all the gifts that I have been given.
And mostly, thank you for reminding me of the gift of seeing miracles.
now on to the recipe
these are shockingly good. I am not an oreo fan so I believe if you are, they may even be better....
I am going to try those blonde oreo cookies maybe in a peanut butter cookie recipe later....I will let you know how that turns out...but my mouth is sort of watering in anticipation already.
OK...
take your favorite chocolate chip cookie recipe.
I just used a standard one
2 sticks softened butter
1 cup sugar
3/4 packed brown sugar
(cream together...I used my food processor as my beaters are kaput and I love my food processor)
2 large eggs
1 tsp vanilla (don't use that imitation stuff...just splurge and buy a bottle of the real stuff already)
(blend these together)
3 1/2 cups flour
1 tsp salt
1 tsp baking soda
(blend together...when using the food processor, scrape down the sides before adding the flour and then pulse until it looks all blended...10 -12 pulses)
1 10oz bag of chocolate chips (I stir these in sep in the food processor because otherwise they sometimes get a little ground up)
so your cookie dough is made
open you package of double stuff oreos (or whatever kind you fancy...I saw those mint ones and thought they might be good too)
take about a tablespoon's worth of dough and plop it in your floured (very important...I learned my lesson afte rthe messy 1st batch to flour my hands)hand...flatten it a bit and put your oreo cookie in the center.
squish the dough up the sides of the cookie as best you can and place another tablespoon on top of the oreo and do the same thing....basically, you are taking two chocolate chip cookies and wrapping them around an oreo.
I used the airpans (those air pocketed cookie sheets...thank you Jake....they have proven to be an awesome Christmas present)and baked at 350 for about 14 mins. If you like them softish, this should be great. I like them a little firmer so I put them back in for another 3 mins or so.
let them sit on the pan for at least 5 mins before transferring them to a wire cookie rack
the recipe makes about 2 dozen giant cookies.
and they are delicioius.
they disappeared before I could get pictures (fancy that) but I am pretty sure you can google them since I know I am not the ONLY one to have thought of this business.
but
I am thinking peanut butter chocolate chip with the golden oreos in the center may just about be nirvana!!!
Wednesday, February 2, 2011
Holy skipping months!!!
so much for the shaming me into writing, huh?
Ugh...I am such a procrastinator...all the excuses in the world add up to just that...excuses. Time to roll up my sleeves and just dig in.
I have some great pictures of the last couple of batches of cookies we made and this week a package should be getting sent out with a few dozen more. Stay Safe Amber!!!
I am also working on making onesies and capes for Finneroo and her BFF Juniebird (I love that baby)
Roobird and Juniebird were roommates over a year ago, at Children's Hospital...7940 represent!!! :) (that was my attempt at being hip...give me a break...I have only had one cup of coffee so far today and it was a long, rough night)
ANYHOO
Finn and June will be going to the state capital for Epilepsy Awareness day and they are bringing our families along. We get to go talk to our senator and representative about the effects that epilepsy has had on our lives. I made a little handout to give to them with some pictures of my chooch and some of the things we have gone through.
So...onesies with purple butterflies (the epilepsy symbol) with purple ribbons (our color) and super hero purple capes....those are what is on the agenda this weekend.
Speaking of the Bird...aunt Amber got us an amazing thing called an emfit movement monitor. We are so lucky to have it. It is very expensive and not covered by insurance (why, I will never know) It detects all the seizure movements that Finn has when she sleeps. I was shocked at how many we were missing and how much she seizes in her sleep. It also alerts when she stops breathing (it detects an absence of movement as well) and that was lucky as I was able to go in and check when the alarm sounded and get her out of the crib and started breathing again. SUDEP is a big worry for me so this helps me sleep a little better at night (ummmmmmmm when it's my turn anyway!!!)
Rooski is now topped out on Keppra and we are gradually adding Topomax to her cocktail. The topomax has proven to be a little difficult to adjust to and we are seeing a lot of behaviors we didn't before. We are working on her sensory issues and she just started drinking carnation instant breakfast in the morning so we can keep her weight up (topomax makes some kiddos not eat...Finn is one...she takes bites but 2 cheeseballs does not a meal make)
I promise to be better about this blogging and especially about posting recipes.
I made homemade cheesecake last week...HEAVEN...and with blueberries on top it was even better....yummmmmmmmmmmmmmmmmm
Ugh...I am such a procrastinator...all the excuses in the world add up to just that...excuses. Time to roll up my sleeves and just dig in.
I have some great pictures of the last couple of batches of cookies we made and this week a package should be getting sent out with a few dozen more. Stay Safe Amber!!!
I am also working on making onesies and capes for Finneroo and her BFF Juniebird (I love that baby)
Roobird and Juniebird were roommates over a year ago, at Children's Hospital...7940 represent!!! :) (that was my attempt at being hip...give me a break...I have only had one cup of coffee so far today and it was a long, rough night)
ANYHOO
Finn and June will be going to the state capital for Epilepsy Awareness day and they are bringing our families along. We get to go talk to our senator and representative about the effects that epilepsy has had on our lives. I made a little handout to give to them with some pictures of my chooch and some of the things we have gone through.
So...onesies with purple butterflies (the epilepsy symbol) with purple ribbons (our color) and super hero purple capes....those are what is on the agenda this weekend.
Speaking of the Bird...aunt Amber got us an amazing thing called an emfit movement monitor. We are so lucky to have it. It is very expensive and not covered by insurance (why, I will never know) It detects all the seizure movements that Finn has when she sleeps. I was shocked at how many we were missing and how much she seizes in her sleep. It also alerts when she stops breathing (it detects an absence of movement as well) and that was lucky as I was able to go in and check when the alarm sounded and get her out of the crib and started breathing again. SUDEP is a big worry for me so this helps me sleep a little better at night (ummmmmmmm when it's my turn anyway!!!)
Rooski is now topped out on Keppra and we are gradually adding Topomax to her cocktail. The topomax has proven to be a little difficult to adjust to and we are seeing a lot of behaviors we didn't before. We are working on her sensory issues and she just started drinking carnation instant breakfast in the morning so we can keep her weight up (topomax makes some kiddos not eat...Finn is one...she takes bites but 2 cheeseballs does not a meal make)
I promise to be better about this blogging and especially about posting recipes.
I made homemade cheesecake last week...HEAVEN...and with blueberries on top it was even better....yummmmmmmmmmmmmmmmmm
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