Wednesday, June 20, 2012
Ari's vocabulary started to explode in the last 2 months. One day he woke up a talking machine and he knew the words for all of his basic needs. Though sometimes tough to decipher, he was pretty good at articulating himself. Since we have moved into the Motel 6North, his new words are indicative of his daily activities and his current needs and wants.
He very clearly says "doc-tor" every time someone in a white coat enters the room. He asks for "s-ghetti" and "suh-sage" and "kickle" at 1am, 3am, and 5am. And, he's even getting pretty good at saying "hee-moo-glow-bin" and "loo-kee-me-a." (Okay those last two were a lie...just some not-so-funny cancer humor for ya.)
And there's his new favorite word of choice that he says at least 100 times a day.
Can you blame him? 'Cause I can't.
We laugh (and sometimes take offense) when he gives this direction to those he loves...and those he does not love. You want to wake him up at 3am to change his diaper? "Move." You attempt to squirt a laxative down his throat? "Move." You dare stand within 5 feet of his crib when he's the least bit agitated? "Move."
Matt thinks he's become a tad "mean." I think if either one of us were in his position, we would be a heck of a lot meaner. (And our word of choice would be much more colorful.) Until today, everyone chuckled when they were told where to go or not go. But this morning we had a few visitors who were not expecting an angelic looking 19 1/2 month old to tell them off. Ari looked at them, waved his right arm, and said "move move move."
And he was not clowning around.
First a bit of housekeeping. We originally thought we would be here for 30 days (if all went according to plan) for Ari's 1st phase of treatment called Induction. We ignored the 2 weeks of the 2nd phase that are also in-patient which make this a 45-ish day initial stay. In addition, Ari has a strange leukemia chromosomal twist which adds a 5-day stay immediately after phase 2. There is a chance Ari will have a few days in between phases to sleep in his own crib, but we are preparing ourselves for a 50-day stay. (It's not the summer or anything.) That's the bad news. The good news is three-fold: First, this means there are new slots on the meal train. And the better news - as long as there are no complications or infections, this should be it for hospital stays. Oh, and best of all, this gets us back home a few weeks before we buy Ari a little baby. He loves babies. It's the least we can do for him.
(BTW, one of these days when I have nothing much to report, I'll give you a run-down of the 2 years of treatment. Many of you have asked so I'll try to do it soon.)
Tomorrow is a lumbar tap. Fingers crossed for another clear report. If the results are good, he will only have 1 more.
Guess what? Ari's viral infection is gone and he is now allowed to leave his room, play in the toy room, walk around, see other kids, and go outside. He's not feeling up to any of that just yet, but the "in theory" aspect makes this exciting.
But oy vey - Ari lost another pound. The doctors are suggesting a tiny feeding tube that goes in his nose and down to his tummy. The only downside is that some kids are bothered by the tube at first. Matt and I are 100% sure Ari will yank it right out of his schnoz (they claim this doesn't hurt). But, we may give it a try anyway. His nutrition is vital to the success of this process and we need to do everything in our power to get him back to a