Once Scout was diagnosed with Loeys-Dietz Syndrome, Dr. Dietz’s name started to be dropped to us by various Doctors in various situations via hospital or office visits. “I have his number”, “I met him at a conference”, “I studied with him”. He started to sound like The Wizard of OZ.
Scout will be visiting the wizard of connective tissue disorders in May. Try not to make too many parallels, I haven’t thought this analogy through all the way. I’m just saying he’s like this mythical creature in our circles these days.
This is a video we had nothing to do with, I mean Gabe didn’t shoot it. This was made a couple of months ago with some families that gathered together to talk about their experiences with Loeys-Dietz Syndrome. We had the honor and pleasure of meeting some of these wonderful people in Baltimore this summer.
Make no mistake, as non-dramatic (is that a word?) as we try to be in our everyday lives, we deal with some very scary situations with Scout more than we would like. With this disorder, it seems like when you think you’ve got a handle on one thing, another thing pops up. It effects her connective tissue, that’s pretty much your entire body. The disorder can manifest itself very differently in each person who has it. There have been numerous times that when we meet with a doctor, WE have to explain Loeys-Dietz Syndrome to them. There is still so much unknown about this syndrome. Please keep remembering Scout in your prayers and remember these other families too. I also ask that you pray for divine guidance for the doctors that are researching Loeys-Dietz Syndrome. They are ultimately helping to save lives. I’ll say it again, Thank God for modern medicine.
With all of that said, I still believe that there is a greater being than all of us that has a wonderful plan for Scout. We are humbled that we were trusted with the gift of raising her.