Tuesday, December 3, 2013

And the Fan has been hit

Here we are at the end of week one and it's amazing how much you can pack into one week. Err, I mean day. Holy heck friends. This is intense.

Our first session this morning went relatively smoothly with Simon eating mostly the way he does with me at home. Just a little pushback for therapist #1. No biggie.

Simon and I had a relatively simple snack an hour later and spent some nice play time in our room and the community room down the hall. Lunch time brought a new level of resistance with therapist #2 that I haven't seen in Simon for years around food and then by the afternoon snack, the child was almost unrecognizable in his resistance to therapist #3.  This boy likes to test and he does not like his routine changed (or his primary feeding buddy changed, or his sleeping arrangements, or his social life, etc etc). Where does he get these wild ideas about stability and getting into a groove that one should never ever get out of? This Taurus (Chinese zodiac Ox) couldn't tell you a thing about that. Nope, not gonna do it.

We have an hour here and an hour and a half there and volumes to record and turtles to talk to and nurses to charm and melt downs to have.

I grab handfuls of trail mix on the go and Simon snuggles a lot more when we stop for a moment. We walk the halls with kids on Chemo drips and colostomy bags.  We get handed knick knacks wherever we go by nurses and child life specialists.
Oh yeah and it's DAY ONE!!!

Rachel, the other kid's mom and I wave to each other as we head off at the same time for our respective eating sessions. Hers are downstairs while ours are just down the hall, our two Littles sitting regally in their red wagons as they get pulled from one moment to the next. We are on a tight schedule.  We are living in tight spaces with tight expectations. Even the language feels tight. No yes or no questions. Only two choices. Do you want to eat three more bites of watermelon or drink two big sips of milk? Do you want to go to Turtle Talk or the playroom? Do you want to ride in the wagon or walk? (sometimes there's a fire truck option as well)

It was really hard to watch Simon resist so much by the time we got to afternoon snack with the third therapist of the day. I knew that I could step in and comfort him and get him to eat more. But that's not my role right now and it's ok that he only ate 1/4 of a sandwich and not much else. They need to see where he's at and then meet him there to bring him the rest of the way. They are so supportive and so good about redirecting and keeping their cool. He leaves each session laughing with a clear and affectionate "bye Erin, bye Hemma, bye Grace." I know that he is taking it all in even if throughout a good part of the session he showing them the proverbial finger in his special five year old way.

Wait, have I mentioned that it's DAY ONE?!

There are more therapist to meet, more food to order, 5-7 components for each meal and snack, and more exploring to do (waiting areas are very cool here in this hospital).
There's really no poop hitting any fans. It's just wicked intense. I'm ok.
I even ate a salad tonight.  It's all good. 17 more days to go.


Kate S said...

hugs and love!!

Jeri said...

I'm exhausted thinking about it. You go, Mama!

Emkay Forest said...

I hope that the intensity of this program is balanced with some deep breaths, love from friends and family, small moments of relaxation, and deep sleep. I stand in awe by your journey.

lydia hernandez said...

Mycah misses you Simon!!!! Hugs :-)