Oh my - I have never been so happy to see a Friday!  We had a big drama this week where Cody had that mysterious pain re-surface.  Long story short, I laid him down to change his diaper - and I witnessed something I won't go into much detail about because it's too scary and gross.  He was straining and straining to have a bowel movement but nothing was coming out - then I witnessed Cody's rectum prolapse outside his body....right there on the changing table.  I nearly passed out.  So we rushed him to the E.R. - his seizures out of control (I think he had aobut 60 yesterday) from the pain he was in.  He was diagnosed with a prolapsed rectum and since then we've been doing X-rays, consults, enemas, and everything in between.  It did go back inside, thankfully.  Sometimes they stay out and you have a much more dire issue on your hands.  But the Dr. said once it is prolapsed, it will very easily pop back out any time he strains.  I feel like we're starring in a horror movie sometimes.  I just stood there at the changing table thinking, 'did I really see what I think I just saw???'  Apparently it's because his muscles simply don't work and don't push waste thru his body properly.  So he can strain and strain at the rectum, but nothing comes down from the upper intestine - no matter how many laxatives we use or how soft the bowel movement is - it is just 'stuck' because he can't push it through.  UGH!

And this...my friends.....is mito disease. I LOATHE this disease.  Every single body system is affected - and life just revolves around managing the current fire.  When you put it out, a new fire comes up.  So I have no idea what we'll do next.  I was on the phone to our Gastro Dr. and two nurses today and they are tracking him closely.  They wanted to admit him today but I begged them to let us try to manage this from home.  I just don't have a hospital stay in me.  So this weekend we do a 'cleanse' using daily enemas, milk of magnesia, miralax, sennacot.  Then we go in Monday for more X-rays and consults once his colon is totally empty.

I just feel so so bad for the little guy.  He just can't catch a break. 

Luckily I did catch a break today and had a 'benign' diagnosis on my thyroid nodules.  So that was good news. 

I'm just way too tired to write more.  Poor Don - we got home from the ER at 1am overnight....and he had to get up for work at 4:45!  We are exhausted, frustrated, and feel helpless to make Cody's life any different.  There are just days that this disease is so over-powering....so overwhelming.  This is one of them.

We haven't slept in a few days becuase Cody's been up all the nights with this pain....so hopefully tonight will be different.

Love to all and thank you for your prayers.

~ Shawna