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.
