Make-A-Wish Volunteers

Barry, Garrett and Janelle

Meet Garrett's Make-A-Wish volunteers Mr. Barry and Ms. Janelle! Monday evening we met them at McDonalds, or as Oscar calls it, the Scottish Playground. Initially, Janelle asked if we would meet them at a restaurant for a sit-down meeting to complete paperwork and get to know each other, but then I let her know Garrett doesn't do sit-down places so well, so we agreed on the Scottish playground! They had gifts for Garrett and the girls are were so incredibly kind!!! We signed papers and then talked about the possible wishes and dates. We had a Make-A-Wish employee spend time with me over the phone to get ideas. So Walt Disney World in Orlando was the first wish. And then dates. We have to be cautious not to try the hot, summer months as Addie and Garrett both have trouble with the heat. Then we talked about October, September or maybe March. Janelle and Barry wanted to shoot for March, so we left it at that. Then today we got a call from Janelle saying March would not work, but that they want to try for October. While we were excited thinking it might happen so quickly, I know that we will have fun preparing for our trip and helping Garrett better understand what is going on. We want him to know some things about Disney World and let him watch some videos and such. Maybe by October we will also have a bit more maturity under his belt. That would help with the travel part at least!!

We have not left the state with Make-A-Wish yet, and already I am humbled and thrilled and overwhelmed with people's kindness and generosity. It's just amazing.

And of course we will pray for continued good health as we wait for our trip!!

And speaking of good health, we are on the schedule to see Dr. Saneto in Seattle next month. I cannot wait to see him in person again and have my little Garrett with a closer doctor whom I respect so very much. I am interested in gaining his perspective on Garrett and his care and future. I met Dr. Saneto in Chicago last summer at the United Mitochondrial Disease Foundation's symposium, but never got to talk to him about Garrett's case. We did blood work for him here a couple of weeks ago, and all we have left is the office visit and possibly an MRI since Garrett has not had one since he was 16 months old. We will fly over on a Sunday and then return Monday night or Tuesday, depending on the MRI scheduling and recovery as he will have to be sedated for that.

Reading the Charles Stanley Life Principles Daily Bible, and my eyes are crossing and I haven't picked it up yet tonight, so I best sign off and get to "work!"

Godspeed,

Clara-Leigh