Sunday, December 1, 2013

T-1 Day And Counting

It's Sunday morning but I've been awake since 5 am.  I just keep spinning about what is going to happen in the next month.

This afternoon I will put Simon and Laura on an airplane to Orange County. They will live at Children's Hospital Orange County for *3* weeks while Simon does his intensive feeding therapy program.  I can't quite imagine what life is going to be like for them or for me. Those guys are going to live in a hospital 24/7 and I'm going to go to work M-F, coming home to a construction zone, and then going to Orange County for the weekends.  I'm going to stay for the 3rd week and learn the program too so both of us will be "trained" on how to get Simon to eat 100% by mouth.It's already been insane for the last 2 months as we've been in and out of our house that's under construction. This just feels like more of the same but also...HUGE.  Simon could get off the feeding tube.  And we will have to be working a "program" with him every time he eats without the safety net of the tube to make up for things (leaving the g-tube in for a while but the goal is to not use it).

The last few months have been incredibly intense. We moved into a sublet the first week in October, went on a week long trip, came back to the sublet for another week, moved in with my cousin and her 2 kids for 3 week and have been in our house while it's been under construction for the last month. (For the record, bean bag chairs are not as comfy as they look and it's really hard to eat dinner every night half-reclined and mostly sprawled on the floor.)
Where we spend 90% of our time at home

So it's been total chaos for the last 2-3 months, we go to a hospital for 3 weeks and then two days after we get back,  *BAM*, this new chapter of our life will start.  We will move all our stuff back into our apartment, Laura and I will have our own bedroom and perhaps have a kid who doesn't use a feeding tube. When school starts again,Simon will be in a new class (a special day class) for Kindergarten.  We're really excited as his class will go from 27 kids and 3 adults to 10 kids and 3 adults. Hopefully he will be able to thrive here instead of just feeling overwhelmed all the time.  That said, he's totally starting to read. More sight words than we can count and sounding out words everywhere we go.

That's what has been going on. Ya know.  No biggie.

What's about to happen is amazing. I keep saying the chaos and stress and disruption is "immediate but temporary".  I think that's how the next 3 weeks are going to be too.  I think Laura and Simon are going to get their ASSES kicked by this program and I think it's going to be worth it. We are in the home stretch to...something.  I keep wanting to say "an easier life" but I think it's more like "a new set of challenges to work with". My only hope is that it will hold more sleep and dinner parties and a kid who likes school...

The Wicked Witch!

Two fisted eating


Little Drummer Boy


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