THAT FAMILIAR FEELING

the better part of last week was pretty rough.

i had a sharp increase in the intensity of my symptoms. it generally came on around 4pm and lasted until 9 or 10am the next morning...then for the most part i was able to push through the day until 4pm rolled around again...
but between 4pm and 9am was pretty brutal...drenching night sweats,shaking chills, tremors, comatose like fatigue, non stop headache, that gruesome internal pressure that slowly ebbs it's way up your spine until it has a vice like grip on your neck and your head feels like it will implode, and my brain turns to complete mush - i feel it coming on - much like you can see the misty fingers of fog rolling in over the ocean, so the fog creeps over my brain until it is a fuzzy, encapsulated entity of inability to reason, process (as in, 'i can see you and i can see your lips moving but i have no idea what you are saying') or cope with the noise or hustle and bustle around ...

reality is blurred out and insanity reigns...
and that familiar feeling of "this nightmare will NEVER end" is a hysteria that seizes your heart and threatens to knock the fight out of you

sigh.
all classic hallmarks of babesia
so was it the babs being active or the babs actively dying off (which would mean this could have been a herx?)
i am loathe to label this a herx
that would just be far too exciting a prospect to consider!
huh? how so?
well for starters i'm used to herxing leaving me bedridden for weeks on end
this one was relatively short lived and was relatively easy to cope with...of course, if you had asked me when i was in the throes of an episode last week i might have told you differently

but
i'm used to THINKING i am dying
rather
than just FEELING like i am dying

trust me, that alone is a huge difference!
dare i hope that this was a herx indeed ...and my body just more effectively handled the toxic load of a die off?
that would be so cool
and
it would certainly be in keeping with the progress i have been making since starting my green goo

and there has been progress
massive progress
and given the high level of stress we are dealing with in regards to parker, the fact that i am experiencing any level of progress, let alone such a remarkable amount of progress is nothing short of miraculous.

since the beg. of sept i have managed to go for a 20 minute walk almost everyday. in the beginning it was a stretch - by the time i'd get home my joints would ache, i'd be exhausted, have blurred vision and i'd be swollen and puffy. this was probably most likely due to the exercise helping to release toxins from my system.
as the weeks have progressed, my symptoms have become less pronounced and i've been able to slowly increase my walking pace. now i'm working on increasing my time from 20 to 30 min.

i've been to church. i had not been to church since early spring...and now i've gone 4 sundays in a row.
and
i've even made it to our Bible Study group. 2 times. i only made it to bible study a total of 2 times last year.
and
i've even seen a return to some of my ahem, "domestic skills"...like having the energy to make school lunches (when i don't forget, oopsy!)
and having the brain power to navigate a recipe and bake?
yup, been there, done that this week.

i made cookies for our bible study group.
disturbing? yes. appropriate? probably not.
bet they're glad i'm back.

yes, all this progress is awesome
and scary

i want to embrace it yet i hold it at an arms length
am i finally, really, truly at the place where my herxes will merely be speed bumps on my road to recovery rather than the cavernous pits they have been up til now?

it is overwhelmingly awesome and scary.

i've made progress before only to have ability ripped from my grasp time and time again...this recent progress has me experiencing a new found level of wellness. oh, how i yearn for THAT to be the familiar feeling.

i hate that i can so easily fall prey to that familiar feeling of "this nightmare will NEVER end"
but
but i will keep trusting that progress is being made...even in the moments when it doesn't feel like it.

ONWARD. UPWARD.

CROSSING THAT BRIDGE

today we crossed THAT bridge...we had parker tested for lyme


his blood was drawn here and was sent to the lab in the USA that specializes in testing for lyme and other associated tick borne diseases.
i think it will take about 2 weeks to get the results


it took a lot of courage to cross this bridge today...and not just for parker who had to endure this - his 3rd needle stick in 2 weeks. it's taking courage for all of us. i've spent a lot of time over the last couple of weeks asking and seeking to hear God's voice in this. petitioning Him to give me (us) something to hold on to for my (our) kids... just before we headed out this morning, i read the following in my devotions...

"what a joy to know that You are the same today as You were centuries ago in isaiah's day, when You promised to rescue Your people in a hopeless looking situation, when the enemy seemed to have prevailed. how i love the words You spoke to them: 'those who hopefully wait for Me will not be put to shame...even the captives of the mighty man will be taken away, and the prey of the tyrant will be rescued...

"for i will contend with the one who contends with you, and i will save your sons."

god has given us the courage to cross the bridge today. we don't know what is on the other side but we know that He moves ahead of us. we don't know what to expect - i think, as weird as it sounds, that we will be totally shocked by a positive OR negative result. until we know... we take comfort and find peace from knowing that nothing surprises God. absolutely nothing. and no matter what the outcome, we can look back on this day and these pictures and say,
"remember how, in spite of how hard and painful that day was, we felt God's presence there with us?"

JESUS CALLING - 33 MILES



over the course of the last couple of weeks, we knew that it was important (and necessary) to rule out the various suspected diagnosis that parker has been so symptomatic for... however we were painfully aware that time is of the essence if what we were dealing with is indeed lyme. i want to give a shout out and thank you to a special lady who assisted us in moving on the testing in a timely fashion.




we had ordered the testing kit from the US lab 3 weeks ago...and are still waiting for it to arrive (most likely because it has been tied up in customs). yikes! last week i put out a request for a kit on a lyme forum. hoping that someone in our area might have an extra testing kit on hand. a lovely lady responded to my request and then went out of her way to send us a kit. of course, personal info had to be swapped to make the drop and that is when i learned that she reads my blog...and we just happen to share a special affinity for crows.



and thank you to those of you who are spending time on your knees on behalf of our family. your prayers are felt. i have been overwhelmingly moved to tears by the messages...some that included phrases like "storming the throne for you", "on a daily basis we are battling in prayer for you", "our Father hates to see suffering".

thank you to those of you who are petitioning our Father with such heartfelt cries.
we are blessed.

DARK CLOUD OF SUSPICION

we still do not know what is causing parker's continued illness
last week the doctor suspected tuberculosis
and immediately sent us to public health to have parker tested for it
that was a 3-day wait for negative results

at the start of this week, parker was beginning to finally 'look' and 'act' like himself again. even though he was very tired and in a lot of pain, he went to school both monday and tuesday for about 2 hours. we were hopeful that he was finally on the road to recovery. then wednesday rolled around and he was down for the count again. yesterday he felt a lot better. today he is not so hot at all. he's up, he's down and so the yo-yo goes. while he has definitely shown some signs of improvement this week, any improvements have been sporadic and not lasting.

this is a difficult post to write

we continue to live under a dark cloud of many suspected diagnosis
riding out that emotional roller coaster of testing and waiting and 'ruling out'
at this point, we know a lot of what it is not - but nothing of what it is
but we find ourselves suspecting the unthinkable

the possibility that what is ailing parker is lyme

there are many reasons behind this suspicion...right now, i just do not have the strength to get into all that. i will say that this is not a new-found suspicion. this possibility has been on our radar for a long time. we have known that we would have to cross this bridge at some point...yet have desperately hoped that we never really would have to.

now that time has come.

right now, a diagnosis of lyme seems to be a strong possibility.
DR H has been consulted and has recommended we move forward with testing parker for lyme.
we will be doing that on monday.

we are endeavoring to approach this as "just one more test that will rule OUT a possibility".
yet, with each passing day, the knot in our stomach grows. on a good day, when parker seems to be getting better, it is easier to treat this as such and keep our fears in check. despite the knot in our stomach, we can be calm and face all of this in a matter of fact sort of way. on a bad day, when he is pale, fatigued and has to crawl to get around, well that knot in our stomach churns its way up our throats and grips our hearts in crushing fear. please understand that for us, facing diagnosis x, y or z has been nothing compared to facing this possibility. from our perspective, a diagnosis of lyme is a worst case scenario.

we take comfort in knowing that we have one of the best LLMD's on board. in the unlikely event that our suspicions are confirmed with a positive test result, we are one plane ride away from immediate and aggressive treatment.

more importantly, we take comfort in knowing that God goes before us on this too. He's crossing this bridge with us. He is our light in the darkness and we can trust Him with this journey too.

Psalm 91:1-6, 14-16

Those who live in the shelter of the Most High
will find rest in the shadow of the Almighty.
This I declare about the Lord:
He alone is my refuge, my place of safety;
he is my God, and I trust him.

For he will rescue you from every trap
and protect you from deadly disease.
He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.

Do not be afraid of the terrors of the night,
nor the arrow that flies in the day.
Do not dread the disease that stalks in darkness,
nor the disaster that strikes at midday.

The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
I will reward them with a long life
and give them my salvation.”

LAB RAT INVADES BLOG

so i figure i need to take a breather from all the needles, tests, and various poking and prodding that has accompanied the medical marathon we've been running for the past couple of weeks. i think we've set a new record here in the goertzen house - 7 doctors, 12 visits in 21 days.


running the gurney gantlet has given us ample opportunity to discover creative uses for surgical gloves but it has also left us exhausted and stressed out.
so when our beloved hamster Walter Warkentin was discovered MIA last week, my first thought was this is the LAST thing we need.
i can't handle anymore drama or trauma, Lord!
thankfully, much to our joy and immense relief, the prodigal Walter Warkentin was recovered alive...he was dehydrated, exhausted and a little gimpy but very much alive!

nice try, Walter

you can waddle...

but you can't hide!

why i feel so compelled to share this with this rest of the world, i'm not so sure...
maybe because i'm just so attached to the stupid hamster or maybe because i know everyone likes to hear a story that has a happy ending
most likely it has more to do with my weird rodent attachment issues and the fact that i'm dumbfounded that little rat had the nerve to run away from me!


and so, without further ado...
i give a nod to the rodent who has stolen my heart...and probably shaved 5 years off my life with his little houdini act.


walter is actually taylor's hamster. a gift for his 15th birthday. (yes, that was really what he asked for) of course, avery and parker are in love with him too. he's quickly become our "family pet". admittedly though, i'm probably the one who will be most traumatized by his demise when it occurs. he's already over 2 years old so i'm bracing for the inevitable and stockpiling tissue.



you know old walter and i have logged a lot of hours together. there is something very comforting about a cuddly, fuzzy animal when one is not well. hamsters are no exception to that rule. he's a pretty fine fellow and he is my buddy. if you give it some thought, old walt and i really have a lot in common. we keep odd hours, sleep for hours, are both past our prime, don't get out a lot, run in circles, see better in the dark, and like to watch reruns of "What not to wear" and Dr Phil. don't doubt it for a minute!


i've seen his ears perk up at the sound of Dr Phil announcing, "this will be a changing day in your life". and i could tell by the glint in his eye and the twitch of his nose, that he is hamster enough for the task! oh yes, during the long endless months when i am more or less a prisoner of my own body and confined to the couch, lucky old Walter has become my 'pet project' more than once. (funny what herxing will do to one's sanity.) i even attempted to toilet train him. many a time. he actually had a fairly successful run at that for a few weeks at one point.
yes, my best friend is a half potty trained, slightly portly hamster.
is it any wonder i have taken his running away so personally that i feel the need to blog about it?

there is great heated debate in our household as to whether or not Walter is brilliant or just brilliantly plump. he's so plump he's nearly gotten stuck in his tunneling tubes several times. we couldn't figure out why he was getting so fat because he 'exercised' so much - then we discovered that he actually just 'pretends' to run on his exercise wheel -no lie - we caught him red handed sitting beside the wheel just turning it round and round with his front paws. now that's brilliant. he is one slick trickster.

and this week he ran away
why?
well isn't that the million dollar question
why, Walter, why?
i've asked him a hundred times
i'm still waiting for an answer...right now he's too ashamed to even look me in the eye



or maybe, just maybe
he's not answering because his answer is top secret and classified
after all
he only ran away to the bathroom
well, that's where we found him anyway...
along with several strands of spaghetti, a couple kernels of rice, some undistinguishable bits and a single, gnawed on WOBENZYME...




wobenzyme is one of the medications that i am on. i take it for my arthritis and joint inflammation. it is stored way up high, on a shelf, in a closet, in a bottle that has a child proof lid.

graham is convinced that walter is moonlighting as a lab rat
who knows?
that would explain why he's keeping so tight lipped on his escape

at any rate, we'll let you know if his arthritis clears up...

WHAT ABOUT SPARKY?

sparky is our nick name for parker.
he's not so sparky these days.

thank you to the many of you who have checked in with us to find out how he is doing. we appreciate the concern and covet your prayers.
at this time, there is not much new to update you with. we still do not have a diagnosis.

we had another appointment with the pediatric specialist yesterday. this to get the results of all the testing he had done last week. both graham and i had a lot of anxiety going to this appointment. based on his symptoms and blood work, we knew what the doctor suspected and what those tests were looking for. Leukemia. that has been a tough possibility to have hanging over our heads.
we were very relieved to find out that parker does NOT have Leukemia.

while there is relief to rule something out, there still remains the mystery of what is making him so terribly ill. yesterday, the specialist indicated that we are most likely dealing with something very serious. we know the possible diagnosis that are being looked at... there is much anxiety over what it may or may not be. however, we are confident that the doctors involved are looking at every possible diagnosis and giving him a thorough evaluation. of course, the process of eliminating possibilities and searching for diagnosis is extremely difficult and stressful. it is scary to watch your child suffer and not know what is wrong.

parker has now lost 14lbs. he continues to fight some sort of ongoing infection in his lungs. this causes him shortness of breath. he has pronounced fatigue and low stamina (but he likes the way that word sounds). he has a lot of joint pain primarily in his hands and legs. his joints are very sore and stiff in the morning. this makes walking difficult.

the school and his teacher have been incredibly supportive. we are incredibly grateful for this. he is doing most of his school work from home as he has only been in school a total of 5 days in the past 5 weeks. this week we have been trying to get him to school for 2 hours each afternoon. it's hard on him physically but it's good for him emotionally. when i dropped him off today, his classmates were all so excited to see him...that did my heart good too!

for the most part, he is one sick little guy - he does have some sporadic days where he feels a bit better and we can catch a glimpse of our old sparky.

we'd like our little boy back full time.

please pray for our little sparky.

BACK TO REALITY

so now that i've duly butchered several fairy tales and pretty much beat the whole theme to death, i shall crash land back on planet earth...

although
the real version of events isn't nearly as interesting when not read as romanticized prose.
the short of it is this:
i had my in office appointment with DR H this weekend...actually he kinda came to me. He was speaking at a conference on Lyme in Seattle (which is about a 2.5 hour drive from our home). super doc that he is he agreed to see me in Seattle and spare me the expense of travelling out to SF to see him. really, i'm not that special - he did this for all his canadian patients (or those that could get there to see him) from what i heard he was booked solid from 8am-5pm for 2 days straight.

we are very grateful for this. we're pretty tapped out financially, so it was a huge blessing to be able to see DR H so close to home. and now given what is going on back home in regards to Parker being so ill, well, you can imagine how relieved we were to not be far away from home nor gone for as long as we are when we fly out to SF.



this in office visit/trip also nicely coincided with our 11 year wedding anniversary. as is tradition we went out for a nice romantic dinner...with Peter.
dinner with Peter? yes.
tradition? no. not yet anyway.
but who knows? after all, he picked up the tab!

and who is Peter? Peter is one of the first 'lyme' friends we made. we met him at the first support group meeting we went to. along the way, he has become a very good friend...and our travel buddy. he is also a patient of DR Hs. Graham, Peter and I have now made several trips together to SF to see DR H.


Peter and i have had a long running burrito bet. each time one of us has our monthly phone appointment with DR H we place bets in regards to how behind schedule he will be. for example, if your phone appointment is scheduled for 9:15am it is not way off to bet that he'll be calling around 11:00am then. whoever bets closest to the actual time he calls, wins. the loser has to buy the winner a burrito.
i happen to have an uncanny synchronicity with the clock that DR H runs by.
so yes, Peter is a stellar guy to pay for our anniversary dinner of burritos.
however
he owed me 2!

as for my how my appointment went...well, i'm not as far as long as i had hoped or thought i was. i think i thought (for the first time) that maybe we would hear that i was well enough to be done with the IV part of my treatment...rather what we learned is that i am actually not well enough to re-start IV treatment. according to DR H i have earned the distinction of being one of the worst herxers he's ever treated. lovely. just the lofty goal i was aspiring to achieve. not!

there have been some herxing exceptions but generally speaking my shortest herx lasted 16 days and my longest lasted 3 months. herxes render me completely disabled - both physically and mentally. my body has just never handled the toxic load that herxing produces. this is nothing we didn't already know. DR H thinks that he has identified part of the reason why my herx reactions are so extreme. some blood work i've had done has shown that my body is running very low on a certain enzyme (Alkaline Phosphatase) this enzyme is made by the liver and assists the body at cellular level to remove and neutralize toxins. we've been working at trying to raise that number for the past 4 weeks. it has not raised at all. DR H has made some adjustments to my current protocol and we are hoping and praying that these will help raise that number...this is critical and crucial - until we are able to raise that number, DR H cannot aggressively treat me.

so where things stand now. my body has 6-8 weeks to start producing AP! if it does not raise with the new therapies DR H has prescribed than i will have no other choice but to move forward with the blood specialist (DR LM in nevada) that DR H referred me to several months back. we are hoping to avoid this as the expense for this is horrendous. please pray for my AP numbers to raise.

other than that there were 2 other areas of major concern:

babesia infection

i have been on alinia and a micro dose of malarone (oral meds) for my babesia infection for the past month. i did briefly herx at the 72 hour mark of starting these 2 meds. 2 weeks ago, i began to experience what i knew was the start of one of my major herx reactions. i immediately pulled off of my meds for 7 days. as stated above, my track record with herxing is horrendous and given everything that we are dealing with at home, i just didn't feel like we could afford to have me rendered incapicitated for an indefinate time frame. at the time, i knew i was playing with fire, but i felt like i made the right decision for my family. DR H disagrees. i will not get well if i do this. in fact, i could make myself even sicker. needless to say, i earned the bad patient award for that shenanigan. of course, DR H understands our situation at home and that keeping me functional is needed but he nearly had a cow. i had to promise and commit to remaining on treatment now.

in one weeks time, i will be adding in an additional micro dose of malarone and switching out my alinia for tinidazole. i've never been on tinidazole before so that should be interesting. please pray for us as we brace for what feels like the inevitable. no time is ever a good or ideal time to herx...but right now, with parker so ill, the thought of me being unable to function, even in the limited capacity i do now, will take a tremendous toll on all of us.

lymphedema -

my lymphedema issues continue to be a major problem. despite our best efforts and all sorts of therapy, i continue to 'puff up' constantly. the primary concern right now is the swelling in my abdomen. it has been getting progressively worse over the past 3 months. fluid filled sacs in my subcutaneous tissues can now be felt. they feel like water balloons. they 'slosh' around like ping pong balls when palpitated. at this point the exact cause is unknown...but there are theories (remember the movie "alien") just kidding.

DR H has prescribed an injectible medication to try and deal with my weirdly abnormal lymph condition. i'll have to give myself subcutaneous injections 3x/week. he also suggested that i remove my navel ring from my jelly belly...i've had that piercing for 16 or so years so it seems a bit of a stretch that it could be contributing to my lymphyness. DR H admitted it is somewhat of a long shot but he did yak on something about naturopaths and body/metal connection...i can't quite remember exactly what he said as my mind was still reeling from the trauma of hearing i have to start injecting myself...but i will do as he says and remove my navel ring for 3 weeks to see if that makes any difference - but not before i find me some fishing line to preserve my piercing!

that's pretty much the gist of things. or what i can remember right now.
oh yeah. we found out my kidneys are in pretty rough shape. i've named them fred and ted. please pray for fred and ted.

one last thing
i took my green goo with me to my appointment...with the intention of giving DR H a taste of his own medicine. ha ha. i daringly plunked it down on the desk in front of him. he looked at it. he looked at me. he jotted something down in his in legible scrawl. he paused, the he thoughtfully gazed out the window, tapped his pen on the side of his head. he turned back to me with his game face on and said in a vaguely threatening sort of way,
"you know, Shannon, i know this doctor who actually chews and vomits up goo for his patients..."


i'm pretty happy with my manufactured green goo now.

OFF TO SEE THE WIZARD

prince charming swooped in and whisked snow white off into the southern sunset of a foreign land. his sturdy, reliable silver steed carried them down the i-5 to the emerald city to see the wizard. prince charming would have preferred to rocket straight to their final destination in the land of OZ but gallant knight that he is he sacrificially swerved off the directed course to indulge snow white's fixation of hunting for treasures and the cheapest of finery in a ross dress for less. he patiently waited next to his practical 7 seat steed whilst snow white gaily yet gingerly skipped into the store.



"yes," sighed he in one resigned heave..."what's a guy to expect when married to a modern day snow white?"

really quite funny how love works that way .... when 2 worlds collide in a match called love it tends to unite polar opposites from the ends of the earth. this fairytale is no exception to that rule, after all this one united a multi-pierced and tattooed modern day city girl with a clean shaven missionary man who avidly loves the great, wild outdoors...and, i might add, he's 8 years her senior. and not for a minute does she ever let him forget it!



once back on course, prince charming and snow white beat a straight path to their temporary residence in the land of oz. there was nervous anticipation on both their parts as to what they would encounter at said destination.

why? say you to i.

one might suggest securing accommodations through priceline.com is a risky venture at best. snow white being the industrious maiden she is, snow white's bid was an offensively low ball offer...one could only imagine what kind of place you could get for really that cheap.
boy oh boy do our characters hope that their home away from home will not have them lamenting 'there's no place like home, there's no place like home'

and just what might you ask, has driven our characters to the insanity of blindly bidding for cheap hotels in far off lands? if they can't afford luxury why not just stay home?

sigh. this is where the tale turns ugly.



enter the antagonist - the tiniest, teensiest creature of all, a minute little bug whose venomous bite left snow white with an insidious infection called lyme.
yes, lyme leaves snow white bedridden for weeks at a time. in a blink of the eye, lyme can morph snow white into a scarecrow, a tin man and cowardly lion all rolled into one.

this is where this tale goes from ugly to evil nightmare.
enter the villains, too many to name. but one thing for sure, there are winged monkey warriors screeching the myth they fervently perpetuate,
"you can't get lyme in the east or the west or the great white north."

and munchkins galore who condescendingly mumble,
"lyme doesn't exist in canada at all... it's all in your head if you think you might have it."

they are all loyal gate keepers of the truth they suppress...or maybe they fear putting their reputation or riches on line or maybe they are just puppets in a much deeper, more dark and sinister plan at play.

whatever the reason, imagine our characters disgust and dismay to hear so many doctor's say, " i can't and i won't help you at all... to do so would put my livelihood on the line"

"but this is my wife and HER LIFE you are so coolly dismissing" screamed prince charming over and over again.

his panicked pleas did nothing to melt their hardened cold hearts

"take her away. maybe they'll help her in the land of Oz...but forget about canada...we're just not your guys."


and so the choice became clear...
with snow white rapidly ailing and losing her sight, they knew they had no other choice but to seek the help of a wizard in a foreign land.
email and internet and modern day conveniences quickly found them a wizard (one who was not all smoke and mirrors)
and so with their faithful GPS companion, Mortimer, at their disposal, they set off to see the wizard of Oz...
if only it was as cheap and simple as the tap, tap, tap of little red shoes
but
snow white is no dorothy
and to date, the trips to the wizard have been many. too many to count.
turns out, snow white is a complicated and costly dame... and quite frankly, can't afford red ruby slippers


"whatever!" she sighs, "I much prefer the comfort of my high top chucks anyway"

now back to our story, after all, snow white and prince charming are about to discover what 50 bucks a nite will earn you in this day of age...

and so with bated breath, they hesitantly made their approach, rounded the corner and lo and behold, before them lay a most beautiful courtyard and the prettiest hotel...does it really matter that it bordered the freeway?
nope, not at all.



once in their room, perched high above the twinkling lights of the cars speeding by on the freeway below snow white opened the window and with arms flung high, she exuberantly declared to the subjects of the emerald city below,

"i am queen of priceline.com!"

satisfied that anyone in ear shot had most certainly heard her proud proclamation, she turned back to catch a glimpse of prince charming, exhausted and snoozing on the comfort of the enormous, pillowy-soft king size bed. a tear caught in her throat...poor prince charming most assuredly got more than he ever bargained for when he made the traditional marital vow in his most unconventional way...

"i promise to pretty much hang around with you til i'm dead"

wonder of wonders, it's 11 years today since prince charming took snow white as his wife. through thick, thin, 3 little dwarves and all things lyme, him and snow white have stuck it out together. yeah. he's snow white's knight with the shining chrome dome and she'd be so lost without him.

yes, 11 years of wedded bliss and happily ever after.
harumph. happily ever after?
i'm pretty sure our characters never quite imagined 'happily ever after' would include a tale this twisted and bent.
but really,
could anyone ever even dream up a twisted fairytale such as this?

what kind of twisted fairytale is this?
it's the twisted tale of the reality of life BUT our characters cling tight to the promised 'happily ever after' that awaits them in the hereafter.
and oh what joy to know that the promise of heaven is no illusion, tall tale or fairy tale story.
and so for the time being,
between now and then, prince charming and snow white know they serve a king they can trust so in spite of it all...or maybe because of it all, they have found joy in this crazy journey they travail...

HI HO, HI HO...IT'S TIME TO GO

snow white is tired of sharing her great big convalescing couch with...

sleepy, dopey and wheezy & itchy, bashful and grumpy

snow white has decided enough is enough
HI HO, HI HO...IT'S OFF TO SCHOOL YOU GO!

i wish.
sighed she.

itchy, bashful and grumpy (taylor) is significantly recovered.

itchy, bashful and grumpy is nicely crusting over - he had some new spots crop up yesterday but if no new spots have appeared overnight then hopefully he can go to school on friday. we are fortunate that the doctor we saw started him on anti-virals and so his pox haven't been as bad as they could have been. of course, he contentiously argues that. he thinks it's been pretty bad.

sleepy, dopey and wheezy (parker) is not recovered. every few days or so, he seems to be rallying but any improvements are short lived. yesterday afternoon, we sent him to school for 2 hours. this was not an easy thing for us or him to do. he is pretty dopey from all the meds he is on and is weak as he has lost about 9lbs in the last 2 weeks. but at this time, we feel that he needs to have a little bit of normalcy - and he misses being with his friends - we are very proud of him for sticking it out even though he feels so sick.

at this point, all we can do is wait on all the test results. we are waiting on the results of multiple blood work ups, the chest x-rays and tomorrow morning he has an appointment at the hospital for an abdominal ultrasound. currently, his symptoms are suspect for several different conditions. we are praying that all the test results will be accurate and definitive...and that IF there is a diagnosis that needs to be made, than God would clearly reveal it. and IF there is a bridge we need to cross, that we would have peace and strength to walk it. right now, we are just taking it one day at a time. it is incredibly difficult but we are trying not to worry about what tomorrow may bring. today is challenge enough.
AND, until proven otherwise, we are choosing to believe that he has just had a really bad run with a nasty viral infection that unfortunately has just really knocked the stuffing out of him.

my littlest dwarf (avery) continues to thrive amidst the microbes swirling through her environment....

in my books, she'll always be the fairest maiden of all.

and how is snow white fairing in all of this?
well, the fact that i am correlating our family to a fairy tale might suggest that i am somewhat delusional or in need of an escape from reality.

after experiencing a positive climb in my White Blood Cell count, this week it all came crashing down to flagged and low numbers.
this was very discouraging.

i continue to be very symptomatic but we are managing to keep my symptoms at manageable levels. everyday i live with episodes of uncontrollable muscle twitching, night sweats, shaking chills, air hunger, fatigue, word retrieval and memory issues, noise sensitivities and pain, pain, pain...but,
all things considered, i am doing remarkably well. as wierd as it may sound, i have a sense of well being that i have not felt in years. i am being able to function at a level that i have not experienced since getting sick. for this i am grateful. my boys have needed me and i have been able to be there for them.

of course, there is tremendous concern that the stress of what we are dealing with will undermine my progress. stress even in the healthiest of individuals weakens the immune system and can be detrimental.

but along the way i've learned that TRUST in God is a phenomenal stress reliever...

Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life.- phil 4:6-7

hi ho, hi ho....it's off to God i go.

IT'S NOT MONO

we saw the pediatric specialist this morning.
the secondary testing parker had for mono came back negative.

parker does not have mono

quite frankly, we are stunned.
last week one of the doctors parker saw was very confident that he fit the clinical picture of mono. based on his symptoms and duration (4 weeks so far) of illness we too felt that mono made perfect sense. this was very reassuring and comforting as the symptoms that he is experiencing are worrisome for us.

at this point, we do not know what he has.
the viral panels they ran on him last week have all rendered negative results.

the pediatric doctor is doing further testing.
chest x-rays were done this morning (he is having difficulty breathing)
and he will also be having an abdominal ultrasound done.

additionally, we are still waiting on the results of 2 other tests that were done last week.
these results should be back by the end of this week.
we will be meeting with the doctor again next wednesday when all test results should be back

we are asking that you continue to pray for us...

that god would direct our path, lead us to the right doctors and that test results would be definitive and accurate.

naturally, this is a very stressful time, however, we are trying to take this one step at a time....after all, parker may have nothing more than some weird bug that is just taking an extended vacation at his expense...

one of my wise aunts reminded me the other day, "KEEP STARING AT THE TATTOO!"
which made me smile

i'm pretty much totally cross eyed now... yup, my visual reminder to keep trusting is sure coming in handy ;)

DROPPING LIKE FLIES

yesterday afternoon taylor came home from school complaining of an itchy rash on his shoulder.
i took a look and concluded that it was probably hives.

last night, his hives spread down his back.
this morning, his hives were popping up on his arms, legs and face.


this afternoon, we found out his hives are actually the chicken pox.

nice.

doctor has said he must stay out of school for at least a week.

nice.

parker home with mono.
taylor home with chicken pox.

you know, at the start of september, i wasn't at all ready to send my kids back to school.
i think i've changed my mind.
this is getting ridiculous.

and really this could just be the beginning...
neither avery nor parker has had the chicken pox yet.
and
because of my weakened immune system, the doctor said that i am at risk to develop shingles.

nice.

currently, i am psychosomatically itching out of my skin
but
we'll keep you posted.

BACK TO SCHOOL?

First day of school

Wow!
October 1st already?
where does the time go?
along with the rest of the world, i am aware that i am number/date illiterate. this is not one of those 'moments'. i do realize that i am blogging about back to school practically one month after school started.
however, we're still waiting for parker to start school.



he made it for the 1st hour of the 1st day...
came home sick
and has been back less than 4 full days since.

currently he has a clinical diagnosis of mono. (despite having an initial mono test come back negative). he had a ton of tests done yesterday and will be seeing a pediatric specialist on monday. we would appreciate prayer...
1. obviously for parker as he is one sick little guy
2. that we would receive a definitive and accurate diagnosis
3. that i wouldn't get it!

it appears that parker will be home indefinitely. last nite was meet the teacher nite at his school. he suggested that he come along...so he could meet his teacher! his teacher has been wonderfully understanding and supportive. she's put together a whole package of school work for him to work on so that he won't fall too far behind in his studies...

so it looks like we'll be hitting the books at home for the time being.
he's not so thrilled about that.
and me?
i'm horrified...most of the work she sent home was MATH!!!



this is a pivotal school year for our family. taylor is graduating, avery is starting her first year of full time school, and parker, once he gets to school, is in grade 5.



didn't know that grade 5 could be considered a pivotal year?
well in my world it is...

grade 5 was not my best year. i think i spent more time in the principal's office then in the classroom. i won't elaborate less i further incriminate myself but let's just say that the thought of being the parent of a grade 5 kid makes me a little weak in the knees.

grade 5 is that year where you exchange the "primary" class for "intermediate" and in this day of age, are graced with the label "tween". of our 3 kids, parker changed and "grew up" the most this summer. it feels as if in the blink of an eye, he left little boy behind and entered this funny little "tween" stage of life. it has been quite remarkable to watch him morph before our eyes. this summer, he suddenly developed an awareness of the emotional differences between the sexes... his humourous observations about such things have left us in stitches.

one evening i was watching a 'girlie' show (Say YES to the Dress) and long suffering parker was keeping me company on the couch. a young bride on the show remarked, "oh, every girl dreams of shopping with their mom."
beside me Parker snorted and guffawed aloud, "lady, i can assure you,NO BOYS have EVER had that dream!"

yes, my quiet, shy middle child is rapidly changing and we are seeing a humorous, scientifically oriented side emerge. he has a keen sense and thirst for the mechanics of how and why things work. this was best evidenced in a 2.5 hour discussion we had on 'puberty' this summer. the general 'birds and bees' overview was not even close to satisfactory for his scientifically inquisitive brain... NO, this child wanted a university level tutorial which meant that his inquisitive questions such as "what is the name of the hormone that signals the brain to produce testosterone?" had me "googling" for the answers every 5 minutes.

this summer he made the rather astute observation that girls and women say the word "cute" ALL THE TIME.
and you know what?
he's right.
since he pointed it out
i noticed
i have "cute-itiss"
and so does the rest of the world
the word cute is everywhere!

even on the stapler in the tattoo shop!
Poor Parker nearly had a coronary when he saw that.

and now on to my bookends, taylor and avery




avery has adjusted well to grade one. or maybe i should say that grade one is adjusting to her! with a zeal and zest for life that is truly her own she has enthusiastically embraced this the start of her full time school career.

en route to school on the first day, she asked,
"so i just want to be clear about this... i'm still not allowed to kiss boys this year?"

oh my.
what a girl!
she keeps us on our toes but puts joy in our hearts at every turn.

First Art Work of Grade 1
"on summer holidays i climbed a big mountain with my family."

taylor is in grade 12.
i can hardly believe it...i don't want to believe it.



a couple of weeks back, graham and i accompanied taylor to the army base where he will be undergoing his training for the reserves this year. we met with his 2nd lieutenant, were introduced to his platoon leader and were given a tour of the base. at one point during our tour, we rounded a corner into a hangar that was a bee hive of activity. military vehicles and personnel were everywhere. i was completely overwhelmed with the sight of so many soldiers dressed in full fatigues. i think in that moment the full gravity of this hit me hard. or maybe it was the 2nd lieutenant saying words like "afghanistan, road side bomb, armored vehicles..." at any rate, i left that base feeling anxious (and went home to shed a few tears in private) - while graham and taylor excitedly exclaimed over the guns. sigh.



at the start of every new school year, i have always taken time to consciously choose to enTRUST my kids to God. somehow it always seems an appropriate time of year...i guess there is something about releasing them from the safey and security of your home and "sending them out into the big, bad world" that can do that. this year trusting their future to God has a whole new level of significance. yes. this year the world seems a whole lot bigger and badder.