Excited and nervous...

It's been a bit of an emotional roller coaster here these last few days. The Kidney Kickoff is truly looking to be a fun time and wonderful event, but boy have we been rolling through some old, tough memories as we prepare. We are so very blessed to have a wonderful family and group of friends. You all are the best and truly the wind beneath our wings.

Take care and hope to visit with you soon.

Kiki's Dad

A little weekend scare...

Well right on schedule... when things are trending well for quite some time there is always the hiccup that gets thrown in the mix to keep us on our toes.

This has been a really fascinating few weeks in Christian's care and physically things have been running rather smoothly.

Until Saturday night that is. We had our Friday "off day" from dialysis as is usual, meaning that his last treatment was Thursday evening. There was lot of family stuff going on Saturday so we planned to dialyze in the evening. That evening we set up the machine and then attempted access and had trouble with his "B" port. No problem we'll wait a few hours and try for a midnight treatment.

Midnight comes, we try again and have to give it up after an hour of  access attempts. Now we're getting worried. Christian and Aida were heading to Houston Sunday for his Soliris infusion and if we could not get access early Sunday then we were going to have to try to get a treatment scheduled in Houston for Monday. That would be nearly 3 1/2 days without a treatment and he was really getting full of fluid.

Thank goodness on the third or fourth attempt Sunday morning we were able to get the "B" port and got a full 4 hour session in before they left.

However, it reminds me that we get complacent when things are going good. Christian really should have 3 access ports and when we lost one earlier this year we have not made it a priority to get it re-created.

Kiki's Dad

Unbelievable news...

Well the power of the internet is an amazing thing. Recently we received several inquiries from potential "living donors" who have asked to be screened as a potential match for Christian. These are complete strangers who have a desire to give of themselves so as to better our son Christian's life. Words cannot describe the emotions that, possibly, someone may match and be a willing donor.

There are many, many factors in possibly getting from here (dialysis) to there (healthy donated kidney) and we have been well coached throughout the process from our support team at Texas Children's and home. Whatever the outcomes, we are grateful.

A quick update on the fundraiser - things have gotten off to a great start. We have had a wonderful response and have received many offers of help for auction items, parade of raffle items and general help. Please do not hesitate to contact Michael Billingsley direct or myself if you have any questions. I'll update the Kidney Kickoff page as Michael and the crew continue to put things together.

Fundraiser Announcement - Kidney Kickoff! Aug 26th 2012

Save the Date! Come join us August 26th for the Christian's Conquest Kidney Kickoff being held on the shores of beautiful Lake Pontchartrain at the Pontchartrain Yacht Club.

Raising funds and celebrating the incredible news of Christian's placement on the kidney transplant list, this fundraising event will feature a silent auction of exciting and useful items and services from local businesses as well as a Celebrity Raffle for a pair of 2012 LSU Season tickets in Sec 304 of Tiger Stadium!

In addition to the main event rooms, the fundraiser is being built as a family affair. For the Kickoff Kid's, there is a park located directly across the street for family fun and activities like face painting will be available.

Food, a cash bar and musical entertainment will be provided.

Event tickets are $40 Adults, $10 Teens (13-18) and kids 12 and under free.

For a quick catch-up on Christian's 17 year medical journey, see the following two videos:

WWL TV Feature: Keep Him Alive Until Medical Science Catches Up

Christian's Medical Journey Video

Check back often as we will update Christian's Conquest with news and enhancements over the next several weeks.

The event coordinator is Mike Billingsley. Please contact Mike for donations, volunteering, thoughts, ideas and even just plain encouragement!

Kiki's Dad

Approved!!!

Well, what a JOY it is to finally announce that Christian is now officially and formally approved for transplant and ON THE LIST for a new kidney!

What an unbelievable feeling this is for our family. Certainly this is the beginning of a new phase for Christian and us and we know it comes with it's own new set of problems and issues, but man it sure is hard to hold down the euphoria around the Billingsley household right now.

At this point there are two options: 1) We are on the list for a donated cadaver kidney, or 2) We are approved for a "Living Unrelated" donor kidney.

Please keep Christian in your prayers that a potential living donor emerges. There are several benefits to a living unrelated donor, and in this day and age we are seeing miracles happen all over the place along these lines.

FYI, there are 3 criteria for a "Living Unrelated" donor:

1- They must not be related to our immediate family (due to the suspected genetic origin of his disease),

2- They must be type B or O blood, either positive or negative,

3- They must be in general good health (no high blood pressure, other risks, etc)

I told Christian he wants BO but I don't think he got the joke at first. Heh, anyway, we'll have several more announcements in the coming weeks, but please begin to pass the word around.

Check back soon for more info! Thanks!

Kiki's Dad