happy being trevy

Trevor has felt nauseous since December. He's complained every.single.day of feeling "tired sick" or "throw up sick" or "tummy sick". His appetite has decreased dramatically and he's lost 10 lbs since his symptoms cropped up. We are working with his specialists (and adding new ones to the team) to try and get to the bottom of what's going on. In the meantime, this is the very reason why, at last year's physical, when he was at the top of the BMI scale, I was secretly thrilled on the inside. It was the first time in a long time that he physically looked healthy, regardless of what the charts say. I despise standardized anything, not excluding those silly healthy weight charts. I knew that anything could crop up medically to change his health and weight. It did. And here we are.  He is unable to swallow pills, so I crush his pills and sprinkle them in food. We've used everything under the sun, but applesauce has worked best for a...

He was told "no" this morning when he suggested eating breakfast at three different establishments. My theory that home is best for breakfast did not impress him. He stumped upstairs whining. I heard the whining subside but was unprepared for the heart-melt moment when I found he had comforted himself by making a pathway of books to his bed. He's never successfully build a block tower during neuro-pyche testing which is one of the markers of intellectual disability. I think we need to re-vamp the test to include making book walkways instead.

He looks so sweet and diligent in this picture that I just know you won't believe me when I tell you it was a meltdown kinda morning for us. Sigh. At least he's cute.

I convinced Jonathan to visit an estate sale with me this morning.  I was looking for a small bookshelf. I found one. I also found books to fill it. And beautiful paintings. And little thises and thats. I felt like a cheap skate because I got it all for a steal at $40. Also a little sacrilegious to be prowling through the belongings of someone who is gone. But the paintings made me weep a little. And the books I chose filled my soul with joy. And the little thises and thats are meaningful. I thought to myself that I hope someday when I'm gone, a mom like me will rifle through my things and weep and rejoice and enjoy. On the ride home I thanked my husband for letting me buy so many things. Particularly more books. I have truly become a book hoarder. His response, "I kinda love this Charlotte Mason thing you're doing." 

I haven't been blogging much because...well...Life. We be busy. I am persuaded this is good. It means we're living and learning. But because I love sharing our miracle moments in a world that is drowning in the opposite... here are a couple video clips for your enjoyment. The first video is a game that Trevy made up by himself in which he tosses a rock into the air and rotates which hand he uses to catch it. This is amazing on so many levels. Also, he makes it incredibly hard to believe that he has right sided hemianopsia & hemiparesis ! This second video was taken at Trevor's request. He was super excited that he "leveled up" (as he likes to call it) in his reading program today!