Christmas Wishes

Every year, as Christmas rolls around people start asking, "What do you want for Christmas?"  Truthfully, what I want isn't something that anyone can give. Well, other than God Himself.  I want a cure for Shwachman-Diamond Syndrome and Mitochondrial Disease.  I want to never bring my children to the hospital for medical tests and procedures.  I want my children to be healthy and not have daily health problems that impact their lives.  Sounds like I'm asking for a normal life, doesn't it?

Over the last several years, we've had to make 15 out of state hospital trips and every fall, we end up having several surgeries-- this on top of the routine bone marrow biopsies and other testing.  This fall was the first fall in 5 years that we didn't have an extra surgery scheduled.  That certainly doesn't push us into that elusive land called normal.  We've had high blood pressure (one child, not mine!), dizzy spells, severe migraines, and lots of their continuing pain issues over the last six months.  I wish that we knew there would be an end--- if this next battery of tests were the end and we could fix it, then we could fix it and get on to regulalry scheduled life. That would be a gift-- fix it-- find a cure! 

Yesterday, I was thinking about our oldest son.  He is "normal" and healthy.  I was wondering if, perhaps, the problems my other two have on a daily basis might be in the realm of normal.  Our oldest rarely, if ever, complains of pain, headaches or anything.  He has never had trouble walking -- except for the time he sliced his leg open when running into a metal bleacher.  His blood pressure is normal.  He is rarely sick...and when he is, it never gets too bad.  Just small colds.  When I do this, I realize there REALLY is something wrong with my other two boys.  Sigh. 

All I want for Christmas is a little slice of health!  If the tilt-table test isn't normal, then we won't have to repeat the MRI (he has a small lesion -left temporal lobe) and we will have an answer.  I don't think the lesion is an issue-- we found it in 2006, repepated MRIs with and w/o contrast and an MRA tat same month, then repeated the MRI the following year (2007) and the lesion showed no change at all.  His headaches have gotten worse and the dizzy spells seem more frequent, but that really could be any number of things.  We are trying to get the youngest in to see the MDA clinic PTs.  We've heard they had experiecne with Mito.  The last time he went to PT, the PT made the pain worse.  Here's praying the MDA clinic PTs know how to help him.