Well it's been a week since I said I would post.  Sorry about that.  we had a follow up appt with Ian's pediatrician on Tuesday of last week.  He seemed to be concerned about Ian's increased issues lately and asked if there was another geneticist we could see.  I told him no, not really, as the other one in the area had about 1 year of wait to get in to see him for follow up appointments.  I asked him why...he said he thought that Ian's condition/disease might be progressing some. I said "progressing"...to make sure I heard him correctly, and he said "yes."  Okay....progression is the last word a parent wants to hear when it comes to a serious health condition of your child.  BUT, I can say that our ped doc is not a specialist in this field, although he tries very hard to stay up to date with the latest info by doing research  frequently.  SO...although I'm fearful about believing what he says, might be true...I'm also very interested in seeing what a mito specialist would say.

 I told him I had already made an appt with the MDA clinic in Jacksonville, FL...unless he wanted us to go to Shands...and he said no, he would prefer the MDA clinic.  Unfortunately, our appt isn't until May 5th with this clinic...so more...hurry up and wait sort of thing.  In the meantime, we're just pushing lots of fluids and lots of rest...even though Ian resists at times with the rest, but what can I say.  He's a typical 7 (almost 8) year old.  We had a softball tournament this past week that we helped run and so Ian was out there some but was entertained by friends and family...so as not to tire him out by being out there all weekend. (THANKS to all of you who helped out!)

Ian is on Spring Break this week, so I'm hoping he can get a LOT of rest.  He was supposed to go to the gym today to work out with his trainer (kind of like physical therapy) but he said he was too tired today and he can only do that when he's NOT tired.  I'm really glad he's learning to know his body.  He's also got one day of baseball practice this week...but we'll have to wait and see how he feels to whether or not he'll participate.  His actual games start next week.    While resting today, Ian laid down and watched some Veggie Tales cartoons.  He still loves them! :)  He asked to look up a Bible verse that was quoted...so he did...

 "I will give thanks to you because I have been so amazingly and miraculously made. Your works are miraculous, and my soul is fully aware of this."   Psalms 139:14

Then Ian remembered another verse he wanted to look up...but couldn't remember where he heard it from...whether another veggie tales movie...or from church or school.  It was...

"Dear friend, I hope all is well with you and that you are as healthy in body as you are strong in spirit."   III John 1:2

I know you can take things out of context, but these two verses just hit me like a ton of bricks.  Nice little reminder for me as a mom, if you KWIM.  This wonderful child was miraculously made and given to us for a reason.  We try to live each day to the fullest (as much as possible) and enjoy every moment of it...even though we get in too much of a hurry at times and forget about the little things that are often overlooked.   

I'm sorry for being a little sentimental, but when you go through things like what we have over the past 5 years...it really makes you look at life VERY differently.    Please keep us in your prayers as we muddle through this next month in preparation for our appt with the MDA clinic.  I don't know if we'll have any more answers then or not, but we sure could use some.   Thanks!