the scoop

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

Tuesday, December 22, 2015

Even Less Sugar: Gosh, I'm a Slacker!

Ok - so I finally came back to the blog to notice: WOAH! According to this, we're still in the hospital. Oopsie.

Here's the current scoop: We have been home for a few weeks. Ian is still on antibiotics, but there is currently no sign of infection. We will hopefully discontinue them in a week or so. Yay!

Physically he is stronger ... getting moving again. He has abandoned the walker and prefers to teeter along on his own. I still like to flank him because of balance concerns, but he has been known to trek to the bathroom and back without an escort. Progress. We've made it to church two Sundays in a row.

Mentally, cognitively, it's an uphill battle with some valleys. (In that metaphor, the valleys are a GOOD thing - less resistance.) Anyway, his occupational and speech therapists primarily work with him on sequencing events, naming, memory items ... that sort of thing. Last week it was REALLY a struggle to count money. An analog clock made no sense (think teaching a child what "a quarter past" means). This week the money thing went more smoothly; he could brain the values AND the adding. Yay! He can still only name about five animals, but those seem to come a little more quickly, so we'll call that progress.

Next on the agenda: tumor battle. No one can say definitively if his current cognitive issues are from the multitude of brain-poking that's been going on these last 6 months, or from the tumor itself (which is in the visual/language processing area). It's possible CSF pools, goo pools, infection pools, pressure (pools?), tissue swellage and downright jostling could account for some of the mental deficit. It could also be that undetectable, microscopic growth is causing problems. So once the antibiotics wraps up and we're satisfied the new shunt is functioning adequately, it's time for chemo again.

HE IS HOME AT CHRISTMAS, which is a present in itself.

I want to thank everyone who has given to us this season, in the hopes that we are able enjoy a precious Christmas. Every single item and monetary gift has been prayed over and treasured and hopefully put to good use. This will not be/has not been an excuse to lavish the kids with unnecessary things, and we won't make the over-compensating mistake, but it's been a relief to know that yes, we can go ahead and get those much-desired items. There will be unwrapping, cinnamon rolls, and laughter. And you've all been a big part of that.

As far as Nurse Rachel goes, I look forward to hanging up the scrubs. I prefer Wife. I have imagined many blog posts but have not written them (including one where I describe all the things I do in a day, to put in writing and validate that I am, in fact, busy ... but I was too busy to actually write it. How meta.), but please know that we are here, we have peace, and we are ready for our next adventure. This is the long haul part of illness ... the in-between crises time span. Aside from the Christmas festivities, we are open to visits and occasional field trips. Please keep us in mind if you are so inclined! :)

Merry Christmas and much love.

Sunday, December 6, 2015

You Keep Using That Word: Caregiver Blog Party

A lot of us are care-givers.

Parents of young children are obvious examples of caregivers: responsible for someone who has little to no ability to care for himself.

Pet owners are also caregivers: making sure Fido has his nibblets and walkies and shelter, etc.

Nurses, therapists, counselors, hospice workers ... now we're getting into paid occupations of caring for the sick or injured.

Family Caregiver is a unique role: caring for a family member with chronic illness, disability or injury. We didn't train for this service, and despite our intense love for our carees, it can be confusing at best and traumatic at worst to attend to their emotional, physical and spiritual needs 24/7.

This week, check out my fellow bloggers from Caregiving.com, my digital home for coping with the challenges I face in this season of life. We're a merry band of misfits, venting, asking, sharing, and cheering one another on. Perhaps you have reason to join us - please feel welcome to do so.

Holiday Progressive Blog Party