Monday, April 25, 2016

Joe ache.


I wish Joe could talk. 

I wish it so much it aches. 

Some times he can say "Muh" for Mom, or "luh" for light,  or "eh" for egg. He was sitting next to me when I heard him clearly say "Mom" for the first and only time in his life. My eyes lit up and I repeated it back to him and he could only manage "muh" again after that. 

He's frustrated, too. 

The trouble about being non-verbal is that when things are wrong, it is hard to get someone to understand that something is happening. I worry about this a lot.

Joe always has massive amounts of ear-junk. Orange, brown waxy stuff that piles up in his ears, everyday. So, I clean his ears everyday. This week I found green-ish brown stuff that filled his ear canal and looked shiny. We head straight to the pediatrician. Double ear infection. 

I know what this probably means. It (probably) means his ear tubes have fallen out, and it means surgery on his ears, again to put new tubes in. I don't like surgery. 

Once, when Joe needed a CT scan, they were not prepared to put him under full anesthesia, so after a few false starts and a lot of waiting around, the full team assembled and Joe was put under. They had me help hold him. I felt him go from fighting like a wild man to completely limp in seconds. 

When he woke up, he coughed out a 4" plastic hook used to hold his airway open. Both of us were ready to leave. And that was only a CT scan.

Am I ready for surgery again? No, not at all. But I will get up and call his ENT and make it happen, because that is just what you do. One foot in front of the other, one day at a time.

But, oh, I ache. 

Maple Syrup Festival

  We went to the Maple Syrup Festival @Cunningham Falls State Park today. The weather was *gorgeous* and the crowds not horrifying.  We star...