Memoirs of a Work in Progress

Quoting one of my favorite movies, Wayne's World, "What I'd really like to do is something extraordinary. Something big. Something mega. Something copious. Something capacious. Something cajunda!"
I'm not sure if this is it, but it's something at least....

You know the creative juices just aren't flowing when your blog posts are only a recap, or a reminder of everything you have going on. Phew! Bear with me.
On Monday Martha had a Cranio-Cap appointment, which also included Cranio-Cap graduation. Hooray! I have a box of cupcakes to make to celebrate the accomplishment, but life has not allowed baking from a box yet this week. Graduating from the Cranio-Cap...

I think the biggest challenge in caring for a child with a rare syndrome is the lack of information available. In the age of technology, where you can learn anything about everything with a google search, having no search results becomes isolating.
In addition, the scope of a syndrome can be so great, that you feel like you must become an expert on everything in order to fully understand what is happening. This is where I am at with my daughter. I have a working knowledge of her gastric system...

Tomorrow Martha is going to get a new GJ Mic.Key button. The procedure is scheduled in the morning at the St. Paul Children's hospital.
This works out well for us because later that day Martha has a second appointment with a pediatric ENT to hopefully diagnose a possible mouth birth defect and/or cyst-like tissue in her mouth....