Some days are just bigger than others

As some of you may remember Andrew was going through genetic testing for Becker's Muscular Dystrophy. That process started back in early February and the wait for today's appointment resulted in some of the longest few months of my life. I was lucky enough to have gotten a bit of information from the clinic nurse when I called in to find out if the report was back yet. It sounded promising but without seeing the entire report or knowing what everything meant I certainly didn't want to get my hopes up.

As long as the last few months have seemed I can say that nothing prepared me for how long today would take. I swear time either stood still or went backwards....maybe both. We finally arrived at the neurologists office for our 1:45pm appointment and heard the results first hand. I am relieved to announce that Andrew does not have Becker's MD. All the results of the test were normal. This is of course fantastic news which also comes with a bit of a bite.

If it's not Becker's then what is it? The answer is....well we just don't know yet. He still has some muscles and ligaments that are a little bit stiff and some that are very loose. In fact while we were in the doctor's office he was laying on the table face down. He had bent his knees and brought his feet up to his bum. Then he relaxed and his legs kind of flopped down onto the bed......by his sides. The neurologist, the resident, and I all looked at each other with that "Ewww" look on our faces. It's like he was a human pretzel. Yet if you ask him to sit cross legged on the floor he can't really do it. One of the funniest things to Drew is bending his fingers backwards and grossing me out. Where he gets this flexibility I don't know.

Drew also lacks muscle tone and endurance yet his strength tests come back normal. The next step she explained would be a muscle biopsy where a piece of muscle is actually taken to be examined. Thankfully though she felt that for now the results were not worth the stress or suffering Andrew would have to go through. She explained that treatment would likely be the same regardless of any findings. We already know what areas he's struggling with and having a name for it or not will not change their management at this stage.

So for now we are to increase his activity level a bit. Swimming, biking, and whatever else he can have fun at. Basically anything that maintains his current levels of muscle strength is in order. I was afraid to ask if she thought he'd continue to decline over time but I'm on board with the plan. If I get brave enough I will ask at our next appointment in 6 months.

Initially when I got home tonight I thought the evening would be about celebration. After all we have a lot to be happy about. However after months of lingering stress it kind of all boiled over and I'd be lying if I didn't confess to just sitting in the middle of the floor and bawling my eyes out. It seems ridiculous to admit to that because after everything that we could have been facing....wheelchairs, surgeries, and medication cocktails I feel stupid crying that my kid likely won't face any of those things. We dodged a bullet and for that I am grateful beyond words. However I also know that I'm human and sometimes emotions don't make perfect sense.

I'd like to take the opportunity to give a big thank you to everyone who has sent their well wishes and support. It has meant so much more than you can ever know. Now that my immediate worries have passed I think it's time for a little fun. Not sure what that will be just yet but I think it's well earned whatever we end up doing. Bring it on.