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2 steps forward 1 step back...sometimes the dance is no fun

Posted Jun 13 2010 10:24pm
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Hot. Food.

Normally I really like those two things together. Don't get me wrong, I am huge fan of a good gazpacho but for some reason I more often drawn to hot rather than cold food.

But for the last few days those two things together are enough to make me tired  and sad and wondering if it'll ever feel like we're only going forward.

Simon does not do well with heat. We are discoverng that around 75 degrees is about his limit. Crying, whining, lethargy, and yes, projectile vomiting are his body's way of speaking his truth. Heat and heart failure do not go well together.

It was really interesting to learn why and was one of those "duh, right!' moments.

In short, when the heart is not working well, blood flow 'round the body is affected, including blood flow to the skin and extremities where we let out body heat when our core gets too hot.  This is one of those 'in your face' reminders that Simon's heart is not working well.

Sadly enough, the vomiting is just enough to take him way back in terms of his progress with eating. What comes before expulsion................ Nausea.

The nauseated signals are back.

The dramatic hand up to the forehead. The odd poking himself in the eye (that I can only imagine is an attempt to disassociate from the feeling with another chosen feeling), and the long since departed friend, vomitus maximus, that lends itself so many other fun activities including extra wardrobe changes, laundry and the surprised exclamations from strangers on the street and at local parks.

(Hardest are the louder exclamations from kids that while are completely understandable, are still hard to hear. Nobody likes a "Dang, that is nasty."
Nobody.)

I am sad. Those pictures of Simon with all those different foods...I loved those. I loved the feeling of progress. Loved it.

I really hope we get back there and as joyfull and light as those two steps forward felt, that one step back feels like it's taken with lead shoes.

Pictures to make you smile instead of sigh....oh wait that's me.



How can you not love this boy?!
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