Megan's Carepage

Just to cover all my bases, I am posting this here:

http://www.2old2play.com/modules.php?name=Forums&file=viewtopic&p=308948#308948

Good day to all of 2old2play. I just wanted to briefly spill my guts for just a moment and thank all of you for everything, and I mean everything, that you have done and meant to my family. For those who don’t know, my daughter Megan was recently diagnosed with Mitochondrial Encephalomyopathy Complex I and Complex III.

This was a long time in coming, as over the last 15 months (pretty much since she has been born) we had no idea what was wrong with her. She was born, full term, and weighed 8lbs 15oz. We are saying 9lbs, because momma earned it with over 26 hours of labor. She would constantly vomit and her weight gain was pretty much minimal. In January 2007, 11 months in, she only weighed 13 lbs, when she should have been 20+ lbs. The doctors ran every test possible with no answers. Over 8 weeks were spent at Scottish Rite Hospital in Atlanta, over her first year, and all the doctors could do was try and keep her from losing any more weight than she already had. She saw GI doctors, Endocrinologists, Neurologists, Pediatricians and finally a Molecular Geneticist (Dr. Shoffner). Megan was put through the ringer and so were we.

Through all of this, our friends and family stuck by us and prayed for us. Sending us your thoughts and prayers are what have gotten us through the good and the bad. The donation late last year was totally unexpected, sneaky mods, and blessed us immensely. No words to describe the feeling of that phone call last December. I was going to try and use some of that to bring Stacy, myself and Megan to the LAN, but alas it is not meant to be. We will be there is spirit, believe me.

Let me get back to my main reason for this post. When we received the distressing news of her diagnosis, we were both relieved and stunned. We did some research online and I have to say the prognosis is not a good one. Children with this disease have a short life expectancy, though each child is different the outcome is the same. We went to her pediatrician on Thursday, he is like family, and he cried and said he was sorry over and over again. That hurt, and of course we shared the tears. We are trying to be optimistic, both for Megan’s sake and for the boys, and for each other. Stacy did not take the news well, at all. This particular disease is passed on by the mother and that, coupled with the ugly prognosis, has been taxing on Stacy’s heart. She constantly blamed herself and said it was her fault. Typical knee-jerk reaction and through prayer and talking, we have somewhat tried to stomp that thought out of her head. I am trying to be as encouraging as possible, but a mother/daughter bond is different than that of a father/ daughter. It does not mean I do not love Megan any less, but the mother carries the baby and forms that unbreakable bond with her. Whereas the father is more known as the defender/ protector, the mother is the nurturer.

So, as therapy, Stacy started a care page (medical blog) for Megan and I want all of you to be able to join in Megan’s journey. As, I was posting updates in my blog and in the forums, it was getting difficult to keep up with who got what, so we set up this care page to alleviate some of that stress. The website is www.carepages.com and you need to register an ID and password. The name of Megan’s page is megancochran (no spaces). There you will find updates, pics (just for you Zikan) and the ability to post comments. When Stacy updates her page, I believe you will get an email to log in and check, or you can just log in whenever you want to check on updates. We are still new at this, so bear with us if there are some bugs. I just want to give everyone at 2old2play the ability to see and register and that was going to be tough to post in every forum and my blog, so Derek is going to help me out to get the word out. I will also post this in my blog.

PLEASE DO NOT HESITATE TO LET ME KNOW IF ANY OF YOU HAVE APROBLEM SIGNING UP. JUST SEND ME A PM THROUGH THE SITE AND I WILL HELP YOU NAVIGATE. 


One quick note, Stacy and I are trying not to get too deep in becoming self-doctors and reading everything on the internet. Truth is, mitochondrial diseases are still new and not a lot is known about them. So, if you get a bunch of "I don't know"'s from me, please understand. :)

Words can not describe the love Stacy and I feel for the website and its members. You all have truly blessed us and some unbreakable friendships have been formed here. Stacy is not a visitor here, but I keep her well up to date. One day I hope she signs up, which I am fervently trying to get her to do. God bless all of you and thank you from the depths of our souls. We love you.



Jim, Stacy, Jimmie, Ian-Thomas and Megan