Cool Liver Info

I went to West's check up today at the Liver Clinic. Nothing much up, just scaring me into taking care of him better (even though he hasn't been sick for a looong time now - thought I was doing pretty good) and watching for bleeds since his white count is low. He tested positive for EBV, which basically is a virus that effects his white count. If he has a severe bleed, he could be in trouble getting the white cells in quick enough before he loses too many, etc. I get made fun of or get people upset around me as I am probably the epitome of a hovering mother. I wish they had to go to my appointments with me and receive the guilt trip I do - even though it seems like a world record that we've only had one hospital stay at all since West's transplant.

Anyways, I came in contact with a girl from California who had a daughter with Biliary Atresia, the liver disease that West was born with. I told Dr. Book and the nurse about it and what a neat experience it was to get to talk to her. Then she gave me this Utah liver blog and I checked it out. It seems like they have such a great support group now and I never really had anyone to talk to!! It is so surreal to have people describe the exact feelings using sometimes the exact words I have used for the anxiety that I still suffer from. A lot of which I felt while reading some of the blogs and reading this article that I had friends tell me about also that was in the Deseret news (for clarification - I had much criticism and shock at their DNR, but I discovered after reading their blog that she was asleep for a month when they had the bleed before).

I also thought this was amazing/ridiculous. I apologize if this completely grosses you out, but I was fascinated and had to share. It is a picture of the little girl in the article's scarred, diseased liver. It is green because of all the bile build-up.



I know it has been forever since I have blogged. I have had plenty to blog about, but lack the motivation to get back into the blogging world. Maybe this will launch us back into that world, who knows?

We have some really exciting news to share soon...but in the mean time, keep us in your prayers...Weston is being tested for Celiac Disease next week. I really don't think he has it, but of course there is a permanent paranoia that exists at the possibility of it coming back positive. Especially since they took part of his intestine to create his bile duct - that influences his digestive system also. There are already so many foods he can't have - beans (like kidney, black beans), corn, oranges (any kind), grapefruit, blueberries, grapes, peas, raisins, and dried fruits and anything else that might cause his diarrhea to flare up. I have recently discovered a new one to add to that list - yogurt. You'd be surprised at how just knowing you can't have it in the house makes you want it that much more.

However, I have to laugh when we are in the produce department at the grocery store and West says in a toddler's loud voice: "Hey mommy, this is an orange!"
"Yes, honey, it is. Good job."
"We can't have those, they make you poopy!"
"Yes, honey. Good job."