We got a package in the mail yesterday from a friend. Inside was a precious, handmade gift and this letter: Ryan and Elizabeth,I’ve been tracking your journey with Grayson through Elizabeth’s blog. I was especially moved by your friend’s description of living with a special needs child. I don’t have a child, but I could…

Grayson’s surgery was 4 weeks ago today. We were told we wouldn’t get the results of the muscle biopsy for about 10 weeks, which to most sounds like an incredibly long time of torturous limbo. But for me, I was ok with that timeframe. You see, I am terrified to get the results. I am…

Dear Grayson, Today you are 17 months old. One more month and you will have been with us (on the outside) for a year and a half. I’m trying to remember life before you, and I can’t. I can’t imagine not knowing you, or not having you here with me all the time. Oh sweet…

G normally goes down for bed between 5:30 and 6:00 and sleeps 12 hours without waking. We started him on the Mito cocktail supplements a week ago, and they are affecting his sleep somewhat. He’s been waking up crying about an hour after we put him down, and generally seems more restless. Tonight he absolutely…

My littlest Valentine…one year later. He’s grown so much…sniff sniff. I had a pretty good day with my lovies. Ryan knows better than to buy me flowers or chocolate, and the key to this girl’s heart is Mexican food. So after his dentist appointment this morning, he stopped and got me breakfast tacos. He also…

Oh Monday, Monday, Monday. I hated your guts this morning. You redeemed yourself around 11 and things turned around for the most part, but you still wear me out. Yesterday I thought we were turning a corner. Grayson didn’t vomit at all, all day- the first vomit-free day since his surgery. But early this morning,…

This week is Feeding Tube Awareness Week. I guess I am so immersed in all of this and have done so much reading, research and hands on learning about tubes that I forget most people don’t know much, if anything about them (I know I didn’t prior to October). The organization Feeding Tube Awareness is…

I don’t normally use the phrase, “It’s a God thing” but what happened yesterday just might qualify… We walked into the neurologist’s office and a woman held the door open for me so I could get in easily with G and his tube. She was there with her son, who was in a wheelchair. I…

I don’t even want to write a post right now, because I’m just so tired of writing post after post of bad news about Grayson. I have no pictures of him smiling, because he has barely smiled in 7 days. But I know people are praying and want to know what’s going on, so here…