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

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...

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

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

First Day of Grade 1

It's the most,

wonderful time....

of the year....!!!!!

Back to School!!!

Yay!!

In This Lunch:

Green grapes

Green apple cut into apple shapes

Cheese whiz and ham sandwich on white

Cheesy heart crackers

Cheese slice letters

Marble cheese Lily

Since we made some changes over the Summer...

I now have another lunch to make!

Introducing... Craig's Lunch!

Since he's a grown man who could

make his own lunch, but chooses not to,

and I won't see him starve or waste money on take out,

he's getting kid lunches too, 

unless he makes his own :)

In Craig's Lunch:

Red and green seedless grapes

Cooked chicken with jalapeno havarti hippos

Salad with lettuce, green and red peppers,

mushrooms, and bits of jalapeno havarti.

(He also had Caesar dressing on the side)

All ready to go...

Cheese!!

A Few More June Lunches

Thursday, June 23rd

Over the Summer, 

I realized I'd forgotten to post the lunches from 

the last week of school...

So here we have it!

Friday, June 24th

As you can see,

I was in need of a break!

Little to no effort in creativity most days;

not even so much as a pretty background!

Monday, June 27th

And then...

I gave up all together and went with the 

Tinkerbell tin!

Tuesday, June 28th

Wednesday, June 29th

The Last Day Of School...

Thursday, June 30th

All in all, I am proud of of Lily's grade primary lunches,
and consider it a year well spent,

But I soooo needed the Summer off :)

The Broken Camera :(

Sooo... my camera broke :(

These are the best shots I could get...

How sad is that?!?

The date on the lower picture isn't even near close,

but while trying to fix my broken camera,

it became stuck on this date :(

Needless to say, come next pay,

a new camera became a top priority!

In This (Top) Lunch:

Strawberries

Checkered red apple

Strawberry jam sandwich on whole wheat

Fruit leather tulips

Cheesy pretzel stick stems

Spinach leaves

In This Lunch:

Butterfly apple

Carrot sticks

Chocolate chip granola bar

Cheese whiz sandwich on whole wheat

Cheddar slice butterfly

Update

Hello folks!

My sincerest apologies for being absent for the last month :(

It's been pretty crazy over here!

Where to start...?

So, it's been confirmed that 

Lily has juvenile arthritis :(

She's only at the onset, 

but she's had 4 bouts of symptoms

in the last 7 months, 

with the most recent being this week.

We are being referred to a new specialist

who specializes in joints, 

and will let you know how things go.

On a happier note,

we've been crazy busy house hunting, and...

We found a house!!

They've accepted our offer,

we've paid the deposit,

and the home inspection is Sunday morning :)

Keeping our fingers crossed,

and praying to St. Joseph

that everything goes well!

I've also been pretty busy since 

wedding season is now in full swing,

and I've got 3 weddings this month

I'm scheduled to sing at! 

All told, 

I'm averaging 3 scheduled rehearsals a week for various gigs,

and about 2-3 miscellaneous gigs each week!

And keep in mind I also have a day job!

Can you say busy??

I love doing it though, so really I can't complain :)

And here we are, and it's June already!

JUNE!!  

School's out soon, and I'm not sure I'm ready :(

I'm going to miss all the lovely social aspects of school,

For Lily and for myself.

I'll miss my morning chats with the mommies,

and Lily's going to be soooo bored without school!!

We'll definitely be scheduling 

as many playdates as we can this summer!!

So, what happens to the blog in the summer?

Well, I'm not sure :/

I do plan to post pictures,

however it won't be every week.

Come September though, 

we'll be back in full swing!

Thanks for reading Lily's Lunch!!

♥Michelle

Nanner Recess/Knee Update

This lunch was from April 27th,

the day Lils was scheduled for her follow-up 

with the pediatric diagnostic specialist.

Since Lily only went to school for the morning,

I only sent her a recess,

hence the lone nanner :)

So at the appointment, 

the doc looked at the detailed journal 

I'd been asked to keep,

chronicling everything Lily ate, where she went, 

who she had contact with, every activity she did

and any symptoms she'd displayed

for the previous 6 weeks.

She also revealed the results of the medical tests

that Lily had to do at our local children's hospital.

Everything came back normal except the x-ray.

Even though she wasn't having an episode at the time, 

It showed excess fluid on her knees :(

Not great news :(

The doctor thinks that it's very likely that 

Lily has juvenile arthritis, 

however, the diagnoses still isn't 100%.

If she does actually have it,

then the onset seems quite mild,

so she'll likely only need a daily

prescription anti-inflammatory

to keep it in check.

We just have to watch her very closely,

since the complications with this disease are

organ failure (kidney, heart), blindness,

and disfigurement if not caught quickly.

Kinda crazy worrisome,

but we're trying to be as positive as we can,

and just focus on the now.

She's healthy now, and there's no guarantee

that she'll ever have complications.

Of course she has no idea about the complications,

but she's aware of the other parts of the disease,

and I try to keep her as informed as I can 

at her level as we go along.

I'll keep you folks posted as we find out more information!

The Package

Today, we got a package!!!

For the first time, I ventured,

and bought bento supplies online :)

We got some little cups,

and some fancy new picks!

I can't wait to try them out!!!

Yippeeeee!!! :)