NO MORE STEPS BACKWARD

this has been a tough week


parker has now been without access to IV treatment for nearly 4 weeks
and
we are seeing a slow but steady deterioration in his condition

DR H and DR D have been trying to stabilize him with oral treatment but
clearly, this is not going well

his pain levels continue to escalate and have intensified enough to bring him to his knees on some days. he had not needed to rely on crawling as a mode of transportation in over 9 months. his fatigue levels have plummented and he is unable to get out of bed before noon. he is once again struggling with cognition functions and is beginning to exhibit more neuro-psychiatric symptoms. 


this past fall, there was a leveling out of his extreme symptom fluctuations and we were finally seeing some really solid, sustainable progress and an ability to resume some regular kid stuff - go to church and youth group, tackle (home)schooling, sleepovers, shooting hoops - and he was able to do those things with growing frequency. he wasn't well by any stretch of the imagination and he still had bad days but he was SOOOOO much better than where he had been. 


we are now seeing a return to the extreme fluctuations in his symptoms. his physical or mental health can go from functional to dysfunctional in the blink of an eye. just like the old days. these extremes can be hard to explain or help others understand. here's an example;


last saturday he felt well enough to go to church, so we went. afterward, he was still "ok", so we stayed to have coffee (ew, church coffee) and chat with friends. we were all sitting around a table visiting when very suddenly, parker was hit with a sudden flare of pain and impaired cognition. the pain was severe enough to drain the color from his face, he became faint and had difficulty speaking. graham needed to carry him out to our van. he spent the remainder of the evening lying on the couch moaning and crying out in pain.

This past week

i look at my son and the intense suffering he is enduring and it's hard to believe now that a mere 8 weeks ago, while he was still on IV, he had felt strong enough and able bodied enough to ski. having spent the majority of the past 2.5 years reliant on a wheelchair, it was truly a sight to behold and a feat that we marveled at and greatly rejoiced over.

8 weeks ago

what a difference 8 weeks can make.


we are heading back to seattle to see DR D on monday,
an emergency phone appt has been scheduled with DR H's office for wednesday
and
we'll be flying out to see DR H in about 4 weeks time


we'd appreciate your prayers. for wisdom for our doctors, for a treatment plan that stabilizes parker and for no more steps backward.