Monday, November 26, 2012

All Knotted Up: Muscle Biopsy

If this post comes across as a little scatter brained there's a reason for that...I feel very discombobulated right now and I don't believe that will stop until after Friday. I hope you can make some sense of what I'm writing...

Tomorrow we head to Atlanta, GA for a muscle biopsy. I feel sick to my stomach. I didn't feel like that a month ago, a week ago, or even a day ago, but now I feel the anxiety swelling inside. At some point, it's going to overflow and I'll probably end up snapping at someone that doesn't really deserve it (that or I'll cry for no reason at all) and I'll have to apologize.

I haven't done much research on muscle biopsies (it can be dangerous) and last night I thought I'd be brave and try to prepare myself for what is happening this week. I entered "muscle biopsy scar child" into the google search engine and I found a picture at Quinn, Krista, and Lila, a blog about a young family in a similar (but oh so different) situation. The scar took me by surprise. It's much larger than I was anticipating. I started to cry. Then I wanted to know more about Lila. What I read made me cry even more. My heart goes out to them.

I don't want to research this anymore. There are too many variables that I just don't know or understand. I'm scared...very scared. The biopsy may give us the answer that has eluded us for over a year (not very long in comparison to others) or it may only leave us with more questions and no answers. As much as we'd like to have a specific name, this will not become my white whale. I refuse to let this consume us....but that's going to be hard at times.

Wednesday we meet with the doctor at Medical Neurogenetics. I don't have any clue what to expect at that appointment, but I know I'm taking my giant binder containing all Rae's medical information. Thursday we are going to have a day in Atlanta...just the three of us. I've never been to Atlanta. Usually, we're just going through it to get to Indiana. Friday, we check in at the surgical center and then we wait.

I probably won't be writing much while we're gone. I hope you all have a great week and if you can spare a few moments...say a prayer for us. I don't know about Jacob, but I'm feeling pretty weak and angst ridden right now.


  1. My thoughts and prayers are wuth you on your journey. Kimberly Belzer

  2. Good luck. I understand completely your "white whale" feeling as I have been chasing a diagnosis for nine years with no luck. Then, at an appointment with Tessie's geneticist one day I had my light bulb moment. The doctor looked at me and said, "You need to understand that a diagnosis won't change anything. She will still be the same Tess after the diagnosis as she was before." Bingo. I still would like to know just to KNOW, but I am no longer on a crusade for it anymore. :)