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

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

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!

Easter Egg Surprise/The Knee Appointment

The surprise being that egg shapes are seemingly

everywhere!

In This Lunch:

Cucumber eggs

Red grapes

Chocolate chip granola bar

Cheese whiz sandwich on whole wheat

Cheddar cheese eggs/leaves

Gummy flower on green toothpick

Today's lunch was eaten at the local children's hospital :(

Half asleep, I packed Lily's lunch, drove her to school,

then came home.  

It was then that I realized that she had 

a long-awaited doctors appointment 

with the specialist for her knee...

about 1 hour from that moment, 

and it's a 30 minute drive to get there.

Long story short, we made it just in time, phew!

Doctor ran every non-invasive test she could,

then ordered some more to be done at the hospital.

X-Rays, blood and urine.

Poor munchkin had a hard day :(

We never did make it back to school,

since the tests took up the whole day, 

so after blood work, 

she was finally allowed to eat her lunch.

You see, the going theory is

Juvenile Arthritis :(

And it started back with this unexplained "injury"

of a swollen knee that was hot to the touch:

http://lilyslunch.blogspot.com/2010/11/hearts-and-bears-lunch.html

Until that day, it was just another medical term.

Now, it has her dad and I worried sick.

Being that it's classified as an auto-immune disease

I'm now second guessing every thing I've done as a parent

and scrambling to find answers.

We still have more tests to go 

before we get a diagnosis.

I'll keep you posted!

Wee Sick Munchkin/Spring Break

There are only two posts from last week 

as Lily was out sick from Wednesday on :(

Luckily it hasn't been even half as serious 

as the pneumonia she had last time.

This time, it's just a nasty flu bug!

She had a fever for a full 7 days with this one, 

and has hardly eaten all week.

The two lunches posted from last week came home 

largely untouched :(

Combine this with Lily's pneumonia, 

(which she's still coughing from), 

and it has made for a VERY skinny Lily!

Poor kid can hardly keep her pants on her butt 

on a normal day!

Luckily, she woke up today without a fever, 

and is gaining her appetite back.

September, (Pre Flu Season)

Post Dec Flu and Jan Pneumonia, Pre Feb Flu

Post Pneumonia and Flu 1-2 Punch :(

In other news...

We are on spring break!

Here where we live, the Canada Games are being held,

and they last for two weeks!

So instead of taking a week in March,

we get two weeks in February :)

We'll be posting over the holidays,

so keep checking back!

Lily's Pneumonia :(

So, Lily's been very sick :(

I apologize for not keeping up with the blog as I had said that I would.

I never anticipated that she would ever miss as much school as she has :(

She has been to the walk-in clinic once

The ER twice

Seen 3 doctors for follow-ups

Was on an antibiotic for 10 days,

and a strict regimen of alternating advil and tylenol 

every 3 hrs for a number of days.

Poor munchkin had some crazy high fevers,

even accompanied by twitching,

shallow breathing, loss of appetite,

and she averaged 18 coughs a minute for about 2 1/2 days.

Poor little munchkin is on the mend, but is still not quite herself.

Her cough and a low-grade fever have returned as of late,

and it's something we're watching.

She has follow-up chest x-rays on Wednesday,

and I'll keep you all posted on her recovery.

Thanks for reading Lily's Lunch

And please, stay healthy!

Hearts and Bears Lunch

Today, sweet Lily is home from school with an injured knee :(

Doc says to watch it, and for her to take it easy, so we have a stay-at-home lunch today.

What's for lunch:

Peanut butter and strawberry jam sandwich on whole wheat

Snow peas

Teddy grahams

Kiwi hearts