Update from Kay McClure:

“Hi Gina,
Long days as you well know. Grayson convulses all day. Up to so much medicine in his port:(

His exome sequencing was done thru Baylor but our insurance payed most of it. However, almost everything else we do is out-of-pocket. His port medicine run about $3000 a week. We’ve been spending this amount here in Reno for four years now.

I wanted you to know that the NIH had networked their undiagnosed disease department in Bethesda to about six other hospitals in the country. Soon, there will be a new application process online where you can choose where to send your records. I’ve been talking back and forth with Dr. Lee, geneticist at Baylor in charge of their network. Praying we can go there. Right now, we’re hanging on by a thread. We’ve already been turned down three times:(

Grayson is a 24/7…can’t I’m really all on my own. He hasn’t been out of his condo in two years. He has major memory problems. Just for him to express his needs during the day, exhausts him. Hard to explain his exhaustion just to get from the bed to the den once a day. Really no functioning except basic skills.

When I ‘m sitting in the dark “cave” (his room), and I call out for help…and nothing…no sign, no angel, makes you wonder about everything.  I was brought up Baptist, Christian, and know all things are for a reason….Just can’t figure this torture out. I lost a brother when I was 25yrs old, he was 26yrs old, to a brain tumor. But he lived more in his 26yrs than I would in five lifetimes. It was horrible, but he touched so many lives…

I see what it must be like to be dead…watching life of others from the peephole of chronic illness. No calls…no cards…But really too tired to talk or care.

I do not cry very often…just pretty stoic. Have to be in order to survive. Listening to his grunt jerk right now and trying to wait on the next round of Dilaudid…

Too much…”
Kay