I *THINK*

parker continues to be ill. 

thankfully, we *think* the actual decent has been halted. we even *think* he may be on his way up. 

this means his pain and fatigue are no longer getting worse. he still sleeps late into the day and spends most of the day in bed and he is still in a boatload of pain. yet, the high intensity attacks (where he has to crawl to get around) are not happening as frequently nor are they getting worse. 

i type *think* because things here change in the blink of an eye. every time we *think* things are looking up, he has another flare and we find ourselves tumbling back down into another dark hole. 

last weekend is a perfect example.

on saturday he was a bit perkier. he was in bed nearly the entire day but his pain was less intense and more manageable. he begged us to arrange for his cousin (same age) to come for a visit. his current relapse and bed bound state started sept 20. that was the last time he spent any time out of the house or with kids his age. he has been far, far too ill to have even been able to tolerate company. i suppose the fact that he even felt "up" for a visit is an indication that there has been improvement. and that the visit actually happened should be viewed as monumental sign that, on some small scale, he is feeling a bit better.

the company and the copious amount of video gaming provided some much needed distraction. the visit helped with the loneliness factor too.  yet, interspersed between gaming, he'd quietly seek us out or curl up on the couch racked with pain. he'd rest, gather up strength, then will his body upright and put on a brave face. 
for what?  to shoot up the enemy on the screen or shoot the buzzer beater in an imaginary on-screen basketball game. 
to be with a friend. 
to do. 
to be. just for an hour or two.
imagine having to fight with all your might to just be a kid.
the desperation for that can drive the body for brief interludes.

yet, i know there is a point when the body cannot be willed to do - no matter how desperate - not even for the briefest of interludes. that has very much been parker's reality since sept 20. 

that visit occurred last weekend. 
we *thought* this was a sign that he might finally be turning a corner but in short order, everything intensely flared again. evenings tend to be the worst. they bring with them intensifying joint pain, shortness of breath, rages and faint-like episodes.

and so it goes. 

the last 72 hours have been better. 

we've managed to do a bit of school work. a very, very tiny bit. (i'm home schooling him again this year) since mid-october, school has been a futile endeavour. this has been incredibly disheartening. prior to this relapse, he had been plowing through an incredible amount of work each day. it took an enormous amount of energy and perseverance on his part but his ability to *think*, process and recall material day to day had improved by leaps and bounds since we wrapped up school late last spring. to "lose" all of that again has been very discouraging. 

he got out of the house twice this weekend. short trips. but he got out. aside from doctor's appointments, he'd only been out of the house once since sept 20. 

he's back to harassing and teasing his sister.
we *think* that is a good sign.

yet, even as i write this, i know that things could spiral downward again.
it's 12:30pm and he's still not awake.
i don't know what today will hold. i suppose none of us really do.
but i hope today will be better and tomorrow and the next and so on and so on.

i *think* he may truly be crawling his way out of this massive relapse because we are finally treating him for the cause.
and the cause?
multiple viral infections.

the diagnosis based on a multitude of lab tests
and
a thorough exam by DR D (seattle doc).
(we took him down to seattle to see her about 10 days ago.)

long drive to seattle

DR D prescribed anti-virals
he's been on those meds now just over a week.

we *think* that this is helping.
we hope.
always we hope.

unfortunately, his eyes (the nystagmus) has gotten worse.

the viral issues are just part of the puzzle. we *think* they are responsible for this landslide relapse. but as far as we know the nystagmus is a separate issue. several doctors have been consulted and they do not believe that viral issues cause nystagmus. google says differently. but google agrees that viral issues are 1 of 3 causes. none of the other causes are things one wants to *think* about. 

i *think* it'll be okay.
our doctors *think* an MRI is absolutely necessary but they *think* it'll be okay.
MRI has been scheduled for dec 11.

but it's getting worse.

he was seen by an optometrist on friday. 
the optometrist *thinks* there is definitely something wrong.
he referred us to a neuro-opthamologist.
that appointment is scheduled for dec 27.

here's what i *think*
i *think* that the wait for those appointments feels like an eternity. we're on cancellation lists and hope that we won't have to wait until then.

i, also, know that i *thought* he needed to have an MRI before the nystagmus occurred.


then, a few weeks later, the nystagmus presented
and
this sudden landslide relapse began

and
it's earned us an urgent referral for an MRI.
and
yes, dec 11 is considered an "urgent" date

i am thankful for that.

i'm sure you are *thinking*, "hold up, what? you mean you are saying you *thought* he needed an MRI prior to the relapse and nystagmus?"
yup.
why did i *think* that? 

just before the nystagmus started, our GP noted that parker had lymphocytosis (elevated b cells)
he didn't *think* this was particularly concerning
it is reasonable to assess that the counts are out because of lyme (and viral issues)
however, 
we saw an immunologist 
who *thought* this warranted further investigation
he ordered specialized labs
and
those came back abnormal

i spoke with the immunologist this past week
he does not know what they mean 
and
has had to consult a pediatric immunologist

waiting to hear back on that
but
he thought that an MRI was definitely needed

i *think* it will all be ok
but
quite frankly, i don't know what to *think* anymore

i don't know why i had that gut instinct about him needing an MRI in the first place. i don't know if that feeling was based on fear or an actual intuitive sense that something, in addition to lyme, is going on.

i *think* i can't *over think* this
i *think* it'll be ok
i *think* i have to *think* that to get thru today

WE CAN DO HARD THINGS

i know there has been an extended absence since my last post. and i certainly dislike popping in finally with a "hi there, things stink big time right now" but that is the truth. we've hit 'crisis mode' again and we could use an extra dose of prayers and support. 

over the last 3 weeks, parker has had a significant relapse.

at the end of september, he developed a type of nystagmus that is indicative of central nervous system dysfunction. this was a sudden onset. it is a new symptom. when the nystagmus first started it was only present in his central field of vision. it is now present in all fields of vision and he can no longer track side to side or up and down. his eyes bounce or dance so rapidly up and down and side to side, they appear to be rotating. it is very upsetting and worrisome to see.

our docs have been trying to trouble shoot what the cause is and have tried numerous interventions. they've addressed and treated all the obvious causes

neurotoxity. check. 
vitamin deficiency. check.
re-adjust meds. check.
medication side effects. check.
standard labs done. check. 

despite their best efforts, the nystagmus remains "unexplainable" and has gotten progressively worse along with an intensifying of his regular, run-of-the-mill symptoms...headaches, nausea, temperature dis-regulation, flushing, rages, insomnia, fatigue and most notably, his joint pain has returned with a vengeance. he is in agonizing pain again all day, every day. adding insult to injury, he will have sudden attacks of an intensifying of the pain. these episodes take unbearable to a whole new level. they come out of no where and leave him curled up in a ball writhing and moaning or screaming in pain.


his docs are worried. he is having countless investigative lab tests done to see if they can pinpoint the underlying cause of this sudden onset of nystagmus and his rapid decline. his GP has ordered an MRI. we are praying the referral will be fast tracked through the system and scheduled ASAP. 

parker says he feels as bad as he did when he first got sick 3 years ago.
that is an inconceivable place to be.

3 years ago, parker came home from his first day of school "sick". within 6 weeks, he was in a wheelchair. nothing could have prepared us for the horror that was to come. 

i have a vivid recollection of when parker began to lose control of his legs. he was walking down the school hall way and his legs just kept giving out from under him. he had a dramatic limp and then every few steps, his legs would buckle and he'd fall to the floor or grip the walls to steady himself and after a few moments, he would continue to systematically plod down the hall to his classroom...a tremoring limp, a shaky step, then stumble to his knees, and then the whole cycle would repeat one painstaking step at a time. it was a disturbing and terrifying sight. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in throat whispering, "this is breaking my heart." yet, his bravery and determination were equally breathtaking. 

his deterioration happened at lightening speed. his pain crippling. in short order, he went from this limp walking, to crawling, to belly sliding to not being able to ambulate at all. he lost 15lbs, had dark under eye circles, rashes, migraines, nausea,and difficulty breathing. he developed full body tremors and night time incontinence. he had severe rages and his cognitive abilities ebbed away. his agony and suffering horrifying. it was as if he was being sucked into a vortex and we were screaming and stretching out our hands to snatch him as he fell from our grasp. his pain levels were so high, and we could do NOTHING to alleviate his pain and suffering. there was absolute desperation to find something to bring relief. 

pain meds.
IV narcotics.
injections.
ice packs.
topical ointments.
epsom salt baths.

the warm baths aggravated it (often do with lyme) there were many times, as he lay whimpering in the bath tub that i sat on the opposite side of the door, my back pressed against it, knees pulled up against my chest, fetal position, head in my hands and bawling my eyes out. the sounds coming from my son, my child were not even human sounding.

these painful memories flood back as vivid as the day they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts... no, it's quite the contrary. i look back on those memories and am stunned that we are still standing today. it is a horrific journey yet there is no way it was survivable without God's presence. 

i look back and remember the "yesterdays" that have once again become our "today"...in order to remind myself that He is here now. just as we have had to carry our son's broken body, God has carried us. He still does and because He sustains us, we have the strength to stand today.

we can do hard things. 

LIVE. LOVE. CROW.

i'm not sure how it began. or when exactly. this obsession with crows. i think it started as a joke. and now i collect them. and i'm not a collector. not at all. but i make an exception for crows.

they are scattered through out my home. my 3 favourites are prominently displayed on my fireplace mantel. 

i love crows. i don't know why. i can't explain it so i won't even try to. i read the new fad for this fall is bird prints. if there is a crow one to be had, i'll be the first to buy into that fad. ohhhh, i can't wait.


i'm sure one day i'll be known as the 'crazy crow lady.' 
who knows... maybe i already am!

after all, i got crows for my birthday.

my dear friend and her precious daughters got me crow bling for my birthday! i nearly did a back flip when i saw them. spectacular.

yes, today is my birthday!
I AM HAPPY TO BE ALIVE. 
i haven't always felt that way.

I AM GRATEFUL TO BE ALIVE.
that is something to crow about.