Sunday, November 13, 2011

Arthritis

Soooo...I need to get this off my chest :(

I have spent way too much time lately 
scouring the internet for any and all information I can find 
about the chronic illness that Lily has recently been diagnosed with.



(Lily has the official diagnoses of 
Oligoarticular Juvenile Idiopathic Arthritis - ANA Negative)

[To see posts on the medical journey leading up to now, click here]

Gotta say... I'm freaking out a little!

It started with Facebook.
I thought, hey, 
I'll find a supportive Canadian JIA group 
who can be informative and comforting, 
and it'll be all good.
No such group exists.
If it does, I can't find it.

So I branched out,
and started looking at blogs,
like this one, and this one, whose beginnings are eerily familiar to where we are now.
(Though these mamas are inspiring... crazy-strong, and hold fast to faith)...
Reading those blogs was a 
Baaaad idea!!

I have deducted that:
people who only mildly suffer from this disease must not find it blog worthy,
and/or
we're in for a really scaaaaary journey :(

Also, that other parents are so organized about everything!
They know not only what their kids are on,
but what it all means.
(Did you know that the Methotrexate that they put them on 
is actually a chemotherapy drug?).
They keep binders of symptom journals and test results,
and get copies of Dr's files on their kids.
Some parents even email their physicians back and forth 
about symptom development and results of tests.

Can I be this organized?
I just don't know.

The other part that terrifies me,
is that we have no medical insurance.

As a single mom, I couldn't afford it, 
so I put Lily on the provincial plan,
(since I made under a certain amount, and at least she'd be covered)
but it ended when she turned 6 in April,
and by then, we were in the process of getting a diagnoses.
I've tried several avenues,
but she keeps getting denied.

Silver lining...
Luckily Craig's work will cover us, 
but only when we become common law/married.
We can apply in August to add Lily and I to Craig's plan,
but the down side is that once I'm no longer taxed as a single mom,
I end up with significantly less $ each month.
We can't really win here, 
but the silver lining is at least she'll have coverage.

So, essentially I've worked myself into a quiet storm of emotional frenzy :(
On the outside, I'm fine.
Inside though...

What I'm afraid of:
My daughter loosing her sight
My daughter needing risky surgeries
My daughter needing treatment I can't afford
My daughter being in pain, and not only can I not fix it, nobody can.

The chances of these things happening,
at times seem impossible,
and at other times seem certain.

Her health can change on a dime.

Each morning when she wakes up,
I feel her forehead, and ask her how she feels,
and my body clenches while I wait for her answer.

One bug.
That's all it will take to take her down and send her to hospital
for shots in her joints.
One stupid flu bug that other kids will get,
and be sick with and will move on from...
Could spell lasting damage to Lily's joints.
Frickin Scary!!!
I feel like she's a sitting duck,
just waiting for flu season!!

She's "healthy" right now.
By healthy I mean, 
her affected joints are only minimally inflamed,
and this is maintained by her taking 6 Jr. Advil a day.
(Advil, because it's cheaper than the Naproxen the Dr would prefer her on)
And so for the time being,
my fears are just unfounded ramblings,
(Thanks be to God!).

But I worry :(
I'm a mom... that's our job, right?

As much as I want to give it all to God, 
let go of the fear, and just trust Him,
I find it soooo hard.
(Losing my 3 y/o brother to cancer puts me somewhat on edge)
(How do I know His plan isn't pain and hardship??)

I pray that God keeps her healthy,
but at the same time,
I worry that part of His plan includes some reeeaally hard times ahead :(

Sooo, that's where I'm at.

Lily's lunches are still going to be the focus of this blog,
but for my own sanity,
I'll be talking a bit more about her journey with Arthritis.


I may even be experimenting with some things in her lunches
in relation to reducing inflammation.

I'll keep you updated as things progress!

Thanks for reading Lily's Lunch!!!

Michelle

Saturday, November 12, 2011

Happy Halloween!!


In This Lunch:
Cucumber slices with pumpkin cutouts
Apple ghosties
Green grapes
Celery bats
Marble cheddar pumpkin
Soy nut butter sandwich on whole wheat
Chocolate chip granola bar


Miss Lily was Rapunzel from the movie "Tangled"

Her costume was the first dress I had ever sewn,
and it was entirely sewn by hand with no pattern...
Not a terrible job if I do say so myself :)

Happy Halloween!

And then one day... she stopped :/


Lily does not like bentos, creative lunches, cookie cutter designs,
or anything fun in her lunches.

It happened somewhere near the end of last school year.

She wanted "normal" lunches!


Assuming perhaps that someone had said something at school,
I persisted in making them,
just to show Lily that 
no one should make you stop doing things you like.


September came, and I was psyched for another year of lunches!

I had some new bento supplies, 
and was going to go to town on those lunches, 
and was taking Craig's lunches with me!


Well, one can only stay excited for so long,
when each morning their efforts are met with 
disgust, whining, and discouragement :(


Lily: "Maaawm!  Why can't I just have a nooormal lunch??"
"It's easy, you just put things in the bag, and I eat them!"

Me: "I love to make you smile with fun lunches!"
"It's another way to show you I love you!"
"and they are just as easy!"
"I put things in the bento, and you eat them!"


But it persisted,
and lunches I'd spent time lovingly making for both Craig and Lily
would end up largely untouched.
and after weeks of this each day,
one day...
I just stopped being creative.

I had lost the desire.


Gone.


Some mornings, I'd try to sneak in a little something,
like the pumpkins in this lunch,


But they came home untouched.

A silent protest of creativity :(


I just don't know what to do :(

Part of me says it's the arthritis; it's known to decrease appetites.
Even with the lunches shown in this post,
she only eats about half the sandwich
1 snack, and drinks her juice.

Some days she's hungry, and eats it all,
but it's rare.
On the off chance she's having a hungry day though,
I always put in a little extra.

Lunch for school covers recess, lunch and after school snack.
Considering it's supposed to feed her for 6-7 hrs,
she really hardly eats :(

So, as per Lily's lunch... well...

I might just have to find other creative outlets!

I'll blog as we go...

Mmm, Gluten-Free Apple Crisp, om nom nom...


In This Lunch:
GF Apple crisp (Made with apples Lily picked herself)
Green grapes
Whipped cream
Soy nut butter sandwich on whole wheat

Recipe for Crisp to follow...

Mishmash Lunches


In Lily's Lunch:
Soy nut butter sandwich on whole wheat
Fruit-to-go "L-O-V-E"
Green grapes
Carrot sticks
Apple slices
Marble cheddar pumpkins


In Craig's Lunch:
Chicken Stew

Ingredients:
Chicken
2 cans of Cream of Mushroom soup
Water
Fresh crushed garlic
Onions
Potatoes
Carrots
Snow peas
Green pepper
Broccoli
Celery
Spices
Rice

Happy Thanksgiving!!


In Craig's Lunch:
Roasted turkey breast sandwich with lettuce and tomato on w/w bread
Mozzarella heart
Marble cheddar turkey
Green grapes


In Lily's Lunch:
Marble cheddar turkeys
Green grapes
Chocolate chip granola bar
Strawberry jam sandwich on whole wheat
Fruit-to-go pumpkins

Leaks and Fires... Oh My!


In Craig's Lunch:
Gluten-Free Chicken noodle soup from scratch!

Ingredients:
Egg noodles
Chicken
Potatoes
Carrots
Snow peas
Onion
Summer savory
Fresh basil
Spices
Tbsp MSG-Free GF Chicken soup powder


In Lily's Lunch:
Green grapes
Carrot sticks
Marble cheddar umbrellas
Soy nut butter sandwich on whole wheat
Fruit to go Lily and flames
Chocolate chip granola bar

So the day before this lunch was a crazy day!!

We had started the morning off with our first leak,
(See previous post),
and then had some house guests for the morning 
who had come from Pictou, and I was so glad to see them :)
They left, and it all went downhill after that :(

I apparently left my brain somewhere,
and went to pick Lily and my 3pm Wed voice student
up from school while leaving the dryer on downstairs.

I was gone about 20 minutes, and when we got home,
we immediately smelled smoke!
We went around to the back door, and saw smoke billowing 
out of the dryer vent!!

I ran inside, 
(Which I'm positive is the exact opposite thing I should have done),
telling the kids to stay out,
and turned off the dryer.
There was no smoke in the house,
but the inside of the dryer was smokey,
leaving the clothes with the smell.

Long story short,
We had a clog! 
Our vent is easily about 20 ft long,
and goes up inside the walls of the house to reach the outside.
I don't know what the culprit was, but it's in my vaccume bag now!

Yeesh, it was a close call!
What if I'd gone out for the day?
Would I still have had a home to come home to??

I knew better than to leave with it on, 
but as I said, 
I left my brain somewhere :/
Never again, (hopefully!)!!

Our First Leak


It's raining it's pouring...

And also, leaking!!!

This particular morning,
I got up, walked into the bathroom, and stepped in a puddle :(

We have concluded that it's all the wind's fault.
The direction of the wind, blew rain in around the bathroom vent,
causing it to run down the pipe, pool on the ceiling, 
and drip onto the floor from the above pot light.

Wonderful.

Luckily this was the first and last time this has happened.
Hopefully winter doesn't hold any surprises :/

In This Lunch:
Green grapes
Marble cheddar umbrellas
Green pepper bush
Cucumber window
Carrot stick door
Celery stick chimney
Blue chocolate bits for rain
Soy nut butter sandwich on w/w for the house

Teddy Bear Lunch


In This Lunch:
Strawberry jam sandwich on whole wheat
Teddy grahams
Chocolate chip granola bar
Green grapes
Carrot sticks

Oatmeal and Tomato Sandwich Lunches


In Lily's Lunch:
Carrot sticks
Green grapes (The only kind she'll currently eat)
Oatmeal with brown sugar and cinnamon


In Craig's Lunch:
Tomato, lettuce and sliced meat sandwich on whole wheat
Green grapes

Normal lunch and... Chili!



In Lily's Lunch:
Carrot sticks
Cheddar cheese bits
Vanilla Yoghurt
Apple slices
Strawberry jam sandwich



In Craig's Lunch:
No-Bean Chili!

Ingredients:
Hamburger (1lb)
Red, green and yellow peppers
Chopped onion
Chopped fresh parsley
Chopped mushrooms
Fresh chopped garlic
Spices
Tomato paste
Fresh tomatoes
Dollop of olive oil
Dollop of ketchup
Dollop of BBQ sauce
Several dashes of hot sauce
... Cooked in slow cooker for 8 hrs on low

"Love"ly Lunch


In This Lunch:
Half a Banana
Strawberry jam sandwich on whole wheat
Cheddar hearts
Cheesy heart crackers
Green apple hearts

Wednesday, September 28, 2011

Fall 2011 Update

Hey Folks!

First off...
I can't thank you enough for following Lily's Lunch
And want you to know we REALLY appreciate it!

So, we had a wonderfully busy summer,
filled with new and exciting changes :)

We bought a house, and are now fully moved in!


Craig and I... GOT ENGAGED!!!!!




...And Lily's Arthritis is now fully diagnosed,
and she's now on a whoooole lot of Advil :/

She's improving though, 
and with the help of keeping active, 
she's still pretty much a normal kid :)

Thanks again for following Lily's Lunch!

Here's a few shots from our summer:

Last day of school, with her teacher
(Photo by Janette Marshall)
Day at the beach in Hubbards, NS with Maddy and family
(Photo by Karla Shaw-Rogers)
Dancing with the bride
(Photo taken by me at friend
Desiree's wedding)
Riding with Daddy at our new house
Posing at our cottage

Lovey-Dovey Lunches


Feeling particularly lovey-dovey this morning,
and wanting to show my loves some lovin,
We have hearts today :)

In Lily's Lunch:
Strawberry jam and crunchy soy-nut butter sandwich on italian white
Strawberry and raspberry fruit-to-go hearts
Green grapes
Carrot sticks
Cheddar hearts
Chocolate chip granola bar


In Craig's Lunch:
Strawberry jam and crunchy soy-nut butter sandwich on italian white
Strawberry and raspberry fruit-to-go hearts
Chocolate chip granola bar
Cheddar hearts
Cheesy heart crackers
Cucumber hearts
Green and black grapes

Butterfly Lunches


In Lily's Lunch:
Strawberry jam sandwich on enriched white
Green beans
Gummy butterflies
Cantaloupe flowers
Green grapes


In Craig's Lunch:
Carrot sticks
Black grapes
Chicken and cheese sandwich on enriched white with
lettuce and mayo
Chocolate chip granola bar
Gummy butterflies

Fall Lunches


In Lily's Lunch:
Green grapes
Cheddar pumpkins
Cheddar rice crackers
Carrot sticks
Green beans
Chicken and cheese sandwich on enriched white bread
Pumpkin picks


In Craig's Lunch:
Carrot sticks
Green beans
Cheddar rice crackers
Jalapeno havarti pumpkin
Black grapes
Chicken and cheese sandwich on enriched white with
lettuce and mayo
Cheddar and jalapeno havarti acorns

First Day of Fall Lunches


It's the First Day Of Fall!!!

In Lily's Lunch:
Carrot sticks
Sugar snap peas
Green grapes
Apple slices
Buttered Whole wheat bagel
Cheddar pumpkins


In Craig's Lunch:
Apple slices
Sugar snap peas
Carrot sticks
Sliced chicken breast sandwich with 
lettuce, mayo and cheddar on a whole wheat bagel
Cheddar leaf

Shapes and Stars Lunches


In Lily's Lunch:
Green and red grapes (Ovals)
Cucumber triangles
Cheese whiz sandwich on enriched white
Green beans (lines)
Cheddar shapes



In Craig's Lunch:
Carrot sticks
Cucumber stars
Black grapes
Cheese and chicken sandwich on enriched white
Sugar snap peas
Cheddar stars

Hen Lunch


In Lily's Lunch:
Sliced chicken and cheese sandwich on enriched white
Cheddar hen and chicks
Chocolate chip granola bar
Carrot sticks
Red and green grapes
Strawberry
Cheddar scraps
Crackers
Sugar snap peas

Girly Lunch


In Lily's Lunch:
Chicken and cheese sandwich on enriched white
Cheddar heart
White cheddar flowers
Gummy butterfly
Green grapes
Strawberries

Dinosaur Lunches


In Lily's Lunch:
Green grape dino eggs
Cucumber mini dinos
Dino fruit snacks
Lettuce foliage
Ham and cheese sandwich on enriched white
Chocolate chip granola bar


In Craig's Lunch:
Dino fruit snacks
Green grape dino eggs
Lettuce foliage
Cucumber mini dinos
Ham and cheese sandwich on enriched white
Dino cheddar slices
Lettuce pterodactyls
Chocolate chip granola bar

Up In The Sky Lunches


In Lily's Lunch:
Cheddar cheese stars
Carrot sticks
Strawberry jam sandwich on enriched white
Strawberry Fruit-to-go stars


I had been teasing Craig the day before,
that I might just start making themed lunches
for him, too, if he doesn't start making his own lunch...

In Craig's Lunch:
Carrot sticks
Red, green and black grapes
Mayo, white cheddar and ham sandwich on enriched white
Jalapeno havarti space ship with
Carrot stick flames

Dino's and a Normal Lunch


In Lily's Lunch:
Strawberry jam sandwich on whole wheat
Strawberry fruit-to-go dino's
Cheddar cheese scraps
Green grapes
Cucumber coins
Carrot sticks


In Craig's Lunch:
Mini Cucumber chunks
Green and black grapes
Mayo, white cheddar slice and sliced chicken breast on whole wheat
Carrot sticks
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