Day 81!

So I've been watching some American Idol with Mommy and Daddy lately and Jonathan loves to play his keyboard for me so I'm wondering... where's the Ray Charles songs? Since I haven't heard any I decided to do my own rendition... "I feel good! na na na na nana na! I know that I could, yeah!" ....Just trying to talk myself into it... really I'm pretty sleepy and out of it, but here's another shot of me awake today when I was enjoying my binky.... I think I actually like my binky better than that bottle thing that Mommy keeps giving me. Although today she gave me something called Pedialite that tasted like apple juice and that wasn't so bad!

The ultrasound results are in (to detect biliaria artresia) and they are INCONCULSIVE! Oh, all the starvation gone to waste! My fabulous pediatrician called today and let us know that because there was no viewing of the Common Bile Duct, they cannot conclude anything. But they did get views of everything else and there are no blockages. Good news is there is nothing visibly wrong.....bad news, I STILL HAVE TOXINS IN MY BODY that turn me shades of yellow and orange and can cause servere neurological problems and death. Hmmmmmm, that is really bad news. So, what are they going to do? Well, there really isn't much to do. My pediatrician spoke with a Gastro-Intestinal Specialist and she suggested we try "ursagol/actigal" which is mediaction that "promotes bile removal". So we are going to try to promote it and see if it moves on to bigger better things.....like my diaper. It's kind of a shot in the dark but like Mom discussed with the peditrician over the phone "what have we got to lose?" Me. The T18 is how I am made, this is the course I have to take and God will be glorified through it all.....that is the course.

Mom got her special necklace in the mail today. It is an "Eliot" necklace..... named after Eliot Mooney who was also a trisomy 18 baby who survived for 99 days. You can read his story at http://www.ninetynineballoons.com/ and see his story on video at http://www.youtube.com/watch?v=th6Njr-qkq0. If you're interested in ordering one of their necklaces to help support "99 Balloons", a non-profit being established in Eliot's memory and for the purpose of helping families with special needs children, then go to http://www.virginiabead.com/pins.html and order one for yourself! Mom loves hers!