Thursday, April 3, 2008

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 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 and see his story on video at 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 and order one for yourself! Mom loves hers!


Patty said...

Praying as always Jacob! I hope the new meds work some magic!

Rebecca said...

You are so wonderfully made! We love you!

Jessica mommy to Alex/ RTS said...

My son has special needs, I love the necklace.
Thanks Jacob, and your mom and dad. Im going to get one too.

Praying for you.

Anonymous said...

Jacob, you are very cool in your shades! Inconclusive results are so very frustrating for all of you. I continue to pray for you and your family. Have fun with your brothers this weekend. Hugs - Lynne B.

Mandy said...

I love my Eliot necklace too. Thinking of you and praying for your family.


amanda said...

Praying for you Jacob, and I second the second comment;)

I love the necklace and thanks for sharing. I have a precious nephew with special needs so I will get 2 of them one for me and one for my sis and one for my mom-make that 3, and what a great cause it benefits!

Holly said...

Love the shades, Jacob! As always you are cute as a button. Please know that we keep you in our thoughts and prayers.

Holly & Morgan (fellow t18 traveller)

Anonymous said...

Praying,Praying,Praying! Love ya!
I have my own "Eliot" necklace; it is beautiful!
Randi Booth

boltefamily said...

You are just about the cutest little man I have ever seen! I love the shades!

Barb Nower said...

Hello Jacob, Well how is your little hiney bottom today? Did Mommy try the scorched flour thing? It sounds crude and nasty but it does work pretty well. Hope you and your family are doing well on this cool Saturday. I have a Son who with his family live sort of in yoour neck of the woods. They live in Palmyra outside of Rochester. Prayers, Barb

ajc4ever said...

I love the shades Jacob. What a beautiful boy you are!

Angela in central Ohio