Today...
I received the most amazing gift...
A co-worker, Lisa, pulled me aside and GAVE me an IPad for Finn!!!
Who does that?
Who just GIVES something like this away?
I am overwhelmed with gratitude.
She is so sweet and made sure to tell me that it was the 1st edition and so it wasn't that great (is she kidding???) and they had used it before so it wasn't new (I care why???) and meanwhile I was sobbing like a lunatic.
Gratitiude is my word for the day...overwhelming gratitide
how do you thank someone for giving you a gift that has the potential to change your child's life forever?
Thursday, April 5, 2012
Friday, March 16, 2012
Seizures can SUCK IT
Seizures can suck it.
They really really really can (I am very emphatic on this point)
I have no desserts (although pound cake is up for tomorrow)
but
tonight
seizures can suck it
this is the latest video of our poor little sweatpea
this is a pretty typical event
notice how we can't get her attention, her right eye doesn't match her left and her whole body crunches up and into itself???
so tonight
I am feeling sorry for myself, my family, my friends and most of all my beautiful and amazing baby girl
seizures can suck it
http://www.youtube.com/watch?v=h06RkEBM66c&feature=youtu.be
They really really really can (I am very emphatic on this point)
I have no desserts (although pound cake is up for tomorrow)
but
tonight
seizures can suck it
this is the latest video of our poor little sweatpea
this is a pretty typical event
notice how we can't get her attention, her right eye doesn't match her left and her whole body crunches up and into itself???
so tonight
I am feeling sorry for myself, my family, my friends and most of all my beautiful and amazing baby girl
seizures can suck it
http://www.youtube.com/watch?v=h06RkEBM66c&feature=youtu.be
Saturday, February 18, 2012
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
:)
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
:)
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.
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
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.onetruemedia.com%2Fotm_site%2Fview_shared%3Fp%3Df7684fb0fb476f97185247%26skin_id%3D701%26utm_source%3Dotm%26utm_medium%3Dtext_url&h=AAQGuEDQvAQEtuf7-Fk0vNMa2nzk24PKgjExaOHlYXPy_sg
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
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.onetruemedia.com%2Fotm_site%2Fview_shared%3Fp%3Df7684fb0fb476f97185247%26skin_id%3D701%26utm_source%3Dotm%26utm_medium%3Dtext_url&h=AAQGuEDQvAQEtuf7-Fk0vNMa2nzk24PKgjExaOHlYXPy_sg
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 :)
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