Saturday, June 16, 2012

Almost summer

Sometimes when I reach the end of a week and look back over it, I can't figure out why I'm so tired.  This is not one of those weeks.

The girls have been busking at a local farmer's market to raise money for violin camp and new instruments.  They've decided that Q is their muse, since they got a LOT more cash when he was parked right there.  And if they could play only Danny Boy, over and over again, they'd be able to fund everything, right through grad school.

E had a grad celebration here last Sunday.  A wee open house, with friends hanging out, nibbling the first local strawberries and ganache with madeleines.  It was crazy fun, with great conversation.  What was probably the best thing that could have happened seemed at the time to be a disaster... 

Saturday night Q threw up his whole supper.  It was one of those moments when things will break hard one way or the other, but there will be no middle ground.  I was not in the room.  By the time I returned, the girls had mopped, cleaned the magnetic letters he'd been playing with, cleaned him up, changed his clothes, and resumed life.  At that point, there was nothing to do but keep moving.  It was clear that the rest of the party prep wouldn't be happening that evening.  So we all took a deep  breath and went to bed.  (I did stay up and finish tidying the kitchen a bit...)  The next morning, we folded laundry and headed out for the aforementioned busking.  There just wasn't really another option, you know?  And  it was good.  Dropped the expectations of having everything "just so" right off a cliff.  We were much more relaxed.  Could this be the next trend - pre-party puking?  Yeaaah.  No.

Monday we began the annual year-end stuff in earnest, writing summaries for each subject, and submitting paperwork for this year and next.  Once that was done, we moved on to testing.  The kids did MSP testing earlier, but we have continuity with CAT and I wanted to see how they lined up with previous years, so away we went.  Watching them work was informative.  I have one who needs more work with dictionary skills, one who needs a little clarification on map reading, and I got to see real leaps in language skill.  It's hard not to just cheer wildly when they get some difficult thing just right and they know why they did it.  Goosebumps!

Q's little incident Saturday night was especially tough because we've been working hard to keep calories in him.  Since the surgery, he's had persistent vomiting, often resulting in the loss of 2/3 of his meals over a couple of days.  He'd lost weight, which was expected with the surgery and casting, but the vomiting was happening at least every 72 hours for too, too long.  I kept watching him, and noticing how there was sometimes a few more hours added to the stretch.  After one of the more spectacular events, we happened to have a rehab appointment.  This doc is the head of the department at the children's hospital, and a prof at the local U school of medicine.  And she. is. awesome.  I asked her if there was any reason to think that we couldn't give him Zofran, break that cycle, and then just move on.  (Q's pediatrician was appropriately concerned that the Zofran would be masking something and did not want to prescribe without an all clear from specialists.)  She agreed that since Q was having slightly longer stretches of time in between, that shooting for a week of no puking would likely break the cycle.  The pediatrician wrote for the meds (which required a wrangle for coverage - apparently they only allow ODT anti-nausea/anti-emetics for people on chemo, but since Q has an established history of dysphagia, there was less arguing than there might have been...), on the condition that we get in ASAP for a GI consult.  So we did. 

Tuesday Q saw a doc who was there, I am convinced, because he was supposed to be.  He's new, recently moved from the southwest, and could not stop exclaiming how much Q reminded him of a particular kid he used to treat, from diagnosis to physical appearance (it's the wicked long eyelashes).  He explained that the same interruption in neuronal waves that caused Q's neuro and motor difficulties, also caused a less active gut.  We talked about Reglan, which had significant and immediate side-effects for Q (he was not surprised).  The upshot is that I got props for Q looking positively great for where he is post-op (huge credit goes to the therapists who busted their schedules to get him into the pool four times a week for four weeks running), and looking great overall (he was surprised that Q hadn't required surgeries or had hospital stays before now).  He was hugely and specifically complimentary (especially about my having insisted on breaking the puking cycle with Zofran - only three doses!), engaged with Q,  and identified immediately what we needed to do next: tests. 

The girls will fly out in a few days.  E will be flying north again in a couple of weeks to earn money for school and camp and a new violin.  K and S will be staying for a whole six weeks, which has me positively nauseous.  We've talked about this being longer than they've ever been gone before, and they're both excited and a little sad - I'm sure it's pretty much the same mix of emotions they experience when coming back from a visit.  It's tough to be split between two places, poor punkins.

I'm trying to keep things light and productive here, with a smidge of school to finish Monday, around a set of piano and violin lessons that we're cramming in before they go.  Every day will be full, with their last busking effort Father's Day from 11-1 (come by!).  I'm hoping to have enough help with Q to allow time for projects: the garage needs to be cleaned out and reorganized, the "guest room" needs the same, and there are a bazillion little maintenance projects (starting with paint touch-ups).  And then there's the back yard...  Oy!  Between three or four teams of people, there might be hope for rendering the space user friendly for Q, while knocking back the Rampant Meadow theme.  Grandma and Grandpa have loaned a flame thrower - satisfying to watch the blackberry canes sizzle.

We've got our last orchestra commitment in the morning.  Q's asleep so I'm crashing.  More about the car seat adventures next time.  XO.

No comments: