Friday, June 18, 2010

Pieces of our puzzle

Random leg pain. Low muscle tone. Spinal cord minor malformation. 

These aren't things most of us think about when we think about our children. They certainly aren't things we could fathom to be potentially a good thing -- in a way. 

But when you have a child with issues that are not easily explained by a clear and present diagnosis, you live every day with a variety of symptoms and issues -- little puzzles individually that you hope someday just might come together. If you can't put the entire puzzle together, you hope to at least complete entire sections... with just that one right piece of information. 

And so today, while I was happy knowing that we have finally got occupational therapy sessions scheduled and insurance asking only for weekly $20 copays, I was also dealing with what I have always thought was an entirely different part of our puzzle only to find out that it just might fit together... a slight bone malformation that many people have to no ill effect and our son does have... could be leading to multiple other symptoms/issues including his low muscle tone (at least in his lower body) and his random leg pain complaints that seemed to go beyond growing pains but for which we have had no explanation. 

And so, in our world, getting an MRI and possibly needing an easy surgery could actually be a good thing -- one answer in our stable of myriad questions. As always in these matters, maybe not. The other constant is that just when I get a little excited about the prospect of helping my son and making things easier for him... I realize that this too is not going to be easy! An MRI requiring lower body anesthetic if I'm reading it right... needles did you say? Oh yes that should be easy - N*O*T! Ugh. And an overnight surgery now that the boy is old enough to understand all that might entail... even though he might think laser surgery sounds cool... I can hear the shouts of "I'M NOT GOING!" already. Anybody else think I can stay overnight with him at the hospital? 

And so in our world of different normal, there is a ying and a yang. A problem for every potential answer and we hope... .an answer for at least some of our issues. Will keep you posted.  


  1. Congrats on getting the ok for OT. And I hope you can make progress with your son's other issues. If he does end up having to have an overnight stay in the hospital, I would think you could get a cot or fully reclining chair to sleep there with him.

  2. We are pretty psyched re: the OT. Thinking I may call to move up the appointment re: orthodontia and I need to contact insurance today to make sure they will cover the MRI! Fun. Not sure if this is something you could or would want to do, but this is in your neck of the woods: