Saturday, March 02, 2013

Goodbye, February

And none too soon! 

Oh, hello.  It's been a few months, I guess.  Crazy times here - trying to hold All the Things together in reasonable form and to a reasonable standard of function.  Sometimes these efforts are more fruitful, sometimes less.

Q's been sick.  After a day of vomiting (post nasal, etc.) and several days of being reluctant to swallow anything that wasn't precisely as viscous as water, we went to ER for IV fluids and breathing treatments.  Poor guy was just becoming more lethargic, even with tea and honey, even with the coaxing of sisters who got him to swallow the formula supplement.  The loss of sleep over the last week or so has been a bit staggering, perhaps literally.  One should not have to choose between being able to stand up and being able to think through dosing and feeding schedules.  He's better, but still with the gaggy mucus crud that requires saline and suction and albuterol unless we're okay with more vomiting.  This makes me wonder if the bug wasn't RSV.  Ew.

To complicate matters, we're down in Medicaid Personal Care hours, which seems ludicrous, but hey, whatever.  At this point, the state's algorithm says that Q requires 97 additional hours of care per month beyond what a typical child his age would require.  So I'm not sure how to put this, but what. the. heck!?  That's used up on meals and meal prep alone, never mind anything else.  I asked for a re-evaluation, and we're waiting now to hear if the request for more hours has been approved.  The not cool EEG results (positive for epileptiform activity - January) may help Q to have more hours.  For this I have a response that you might expect - rather mixed emotions, and kinda frustrated out of my mind that this is what it takes, when the standard baseline number of hours used to be 200 per month.  Since this illness, we're back to needing the nebulizer, at least for the foreseeable future, so hey!  Another item to pop into the formula!  (insert indeterminate cursing)

Somehow, amidst all this (waves arms) the girls continue to trundle along, scoring well on assignments and tests, working their little tails off for their opportunities.  They're saving to buy violins, pay accompanist fees for violin recitals, and working off parts of piano and violin lessons, as well as the summer violin camp.  I'd wish for a little less work and a little more play for them, except that it seems to be serving them well.  Sometimes organic lessons in humility can be tough to come by, but not so much these days (she says, ruefully). 

I suppose most of what we're doing these days is figuring out how to make do with very, very little, plus the occasional sweet kindness of friends and even (seemingly) random strangers (entertaining angels unawares?).  I don't know how this works, except that so far, miracles of every size and shape keep popping up, just in the barest nick of time.  (Whispering.....  To be perfectly honest, it's wearing on me a bit.  Or it could be the crazy stupid pathogen and lack of sleep...)

So that's enough of that. 

I popped in here to write a quick update, and found that my playlist is loading again for the first time in I don't know how long.  The music is playing now as I type, and making me smile.  I have no idea what I was thinking for some of these songs, but the eclectic selection has me grinning.  The heart is abloom...  See the bird with a leaf in her mouth...  It's a beautiful day, don't let it get away...  What you don't have, you don't need it now...

One wildly unrelated note...  This week several teens and preteens around the country have performed really cool acts of sacrifice and service within their families.  Whether for parents, siblings, grandparents, or other miscellaneous relatives, each of these kids has put him or herself out when all other options were exhausted.  These kids have lent succor to those exhausted caregivers, good people just trying to hold the family together and keep everyone alive, pain-free, okay enough to heal...    People, we have some really fantastic young folks about us.  Notice some of them and say so, eh?  The tasks they've taken on over the last week or so are more than many reasonably well-functioning adults can manage under the best of circumstances, and these kids have been glad to help where they can, only wishing they could do more.  May they be blessed in their endeavors.  May you be blessed for knowing them.

We've got church in the morning, busy afternoon activities, and a full Sunday after that.  Here's hoping we, et tu, successfully carve out some really quiet, really calm, really, truly restorative time over the next 36-48 hours, and in the middle of it, do take kind care of someone who means the world to you - gentleness is such a revel-worthy thing.



Carroll said...

This is short because my last comment vanished into cyberspace. Suffice it to say you are an inspiration and prayed for. Will see if this gets published. Can't believe I've been kicked off your list.

Carroll said...

Well - I know not how to change my pic. This is me holding Darwin in the hospital when he was hours old. Carrie, I am trying to figure out how to help in a tangible way. You have so many challenges, and your folks can't magically add hours to Q's paid-for therapies. Praying for them and all you need. It was a joy to see your smile (staggering nonetheless) and to exchange a few words with your darling youngest daughter. Hang in there.