Manny, the youngest, has a condition called Merosin Deficient Congenital Muscular Dystrophy. If you've never heard of it, don't worry, neither have most doctors...it's just that rare. Merosin is the word that is now called Laminin, the "glue" of protens. You can be missing some or all, Manny is missing all. It affects every skeletal muscle in the body (those are any muscles connected to bone). But for some reason, Manny's smooth muscles (not attached to bone like heart, stomach, gut) are also being affected in a progressive fashion and no one knows why.
We adopted Manny the day he was 9 months old. He's been in and out of the hospital. But he seemed to be making huge strides and getting stronger. Then mid august, he took a turn for the worst. He was not tolerating feeds. So after many hospital stays (understatement), it was decided to put him on TPN (which is "food" via the veins ... similar to IV fluids). And with that comes risks too.
His "semi-permanent" line (A central line, called a broviac) was placed on November 14. We made plans for life as he was doing so great! Best he's ever done.
December 2 he ended up with a fever and positive blood culture (showing something was growing that shouldn't be ... turned out to be a version of Staph and Candida Albicans, a fungus that's very dangerous in the blood stream). He was admitted to the hospital and they started aggressive therapy. By Dec 6 he was in the ICU in critical condition.
So now that you're caught up, I've been posting all these gut-wrenching photos of him in the ICU. Thought I'd put up a few "happier times" pictures so you can better get a sense of Manny.
I just thought that you've been seeing too many "sad" pictures lately, it's time to remind everyone what we're praying for ... who we're fighting for. His quality of life is very high and he (obviously) has many, many people who love him.
And speaking of pictures, my friend Val inspired the great idea that people send in (via email or snailmail, etc) pictures of the people who are praying for him. We'll print off the pics and hang them on the wall so we can be surrounded by YOUR faces. So send away ... goredan@hotmail.com or
St. Joseph's Children's Hospital
Manuel Gore
3001 W Martin Luther King Jr Blvd
Tampa, FL 33607
Also, people are asking ways they can help (besides prayer). First, thanks for you offers and your love for a family and baby that most of you have never met. We're humbled and overwhelmed at the outpouring of love. I was thinking of some tangible ways we could use some help. And I want that help to count for something. I decided an Ipad for Manny would be the perfect gift for him. Once he's up and alert again, he'll love having that. His mind is so bright that it's hard to keep that brain fed ... so the never ending supply of apps sound like a great idea to me! We will be installing a "chip-in" for those who would like to contribute to the fund to purchase that. So stay tuned if you're interested in chipping in.
Other ideas include gas cards and visa gift cards. Those would always come in handy. People are shopping for us, for example, so it's helpful to hand them the visa gift card and voila!
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