Tuesday, December 10, 2013


I'm really tired so this one might be short but I think we had a good day. We had a breakthrough yesterday at lunch where the child seemed to waver on his hunger strike. Then snack and dinner and last snack were wicked hard so I thought maybe I was tripping during lunch but this morning seemed different again. Morning snack, lunch, afternoon snack and even part of dinner seemed to follow the same trend plus I've never done any psychedelic drugs so....it seemed like we'd had a breakthrough.
Simon was eating again and taking in anywhere from 3-6 ounces of fluid, including some fruit smoothies at each meal so I could stop imagining him wasting away. We earned playroom time (I say 'we' since that's when I also get a break), had great times chasing each other through the hospital and playing DJ at the radio station. Simon was even called out during Turtle Talk for being a regular and got his name mispronounced by Dorie several times. He made several friends throughout the day and I felt a little of his and my old self returning.

Sadly dinner and last snack tonight were more challenging with the latter ending on such a weird and sad note.  Simon chose to not eat anything and therefore not get to go to the playroom for one last jaunt. After that, he made the choice to at least finish his juice so that we could read books or listen to music during bedtime. The child finished 5 out of 6 ounces and then for no apparent reason just threw the last bit in the cup across the table. I stuck to my guns and very calmly reminded him of our deal.
We brushed teeth, he got in bed, I kissed his forehead and turned out the lights.

"WHERE ARE MY SNUGGLES?! WHERE ARE MY SONGS AND STORIES?! I got these even during hospitalizations with IVs and picc lines!" the boy screamed.

Ok, it wasn't him.
It was me and it was inside my head because  didn't want to disturb my child and need to put away even more $$ for therapy for him later.

So again, let me just say this is really hard.
But I think there is light. I think there is.

Tomorrow marks the half point. When I blog tomorrow night we will have made it through more than we have yet to do. Here's to weight gain, pleasant meal times, and rainbows and unicorns.

Thank you again for all the love and support. It's huge.

1 comment:

Brook Pessin-Whedbee said...

It's almost hump day. You all are champs!