July 31, 2011: Giving It Up For Good!

Heaveno!

It's official.  My 39th birthday is exactly one month from today, and I am giving it up for good.  When I first heard about giving up your birthday for a cause, I liked it.  So, yesterday Angelique asked me what I wanted to get for my birthday.  In one way, I can't get what I want (Bella back), and in another way, I am already getting far more than I could ask for (Julian's arrival), so the idea of being given anything other than that just seems trivial this year.

Here's how it works:  for anyone who is so inclined to do so, instead of getting me anything at all, make a donation to my Chipin widget on my blog.  Doesn't matter how big or small, either.  The money you donate will go (after chipin takes its 3%... we're working on how to get that covered as well) to PUCK, which means it will go to Drs. Wagner and Tolar at the U. of Minnesota to continue to finance their ground-breaking research in using stem cell transplants to treat EB.

I don't know if I've told you this, maybe it's just been a while...

Bella lived to Day +101 of her transplant.  The study was for 100 days.  She completed the study.  She held out.  Why?  Because on or within a day or two of Day +100, Dr. Tolar does another skin biopsy to see how much donor skin has grown in since day +60.  By holding out to Day +101, and dying then, Dr. Tolar got to do her biopsy during her autopsy...

What this means I cannot understate, and this might make those who are squeamish a little uneasy...

He was able to biopsy her throat.

You can't biopsy a living child with EB's throat, but as we know, EB affects the mouth, throat, esophagus, GI tract, the whole 9 yards.

Bella was growing Ali's skin in her throat... up to 24% of the skin was Ali's.

30% gets you functional skin.

There is no other treatment out there, folks, that is literally healing the kids from the inside out, and the GI issues are EVERY BIT a serious problem for an EB patient as any other wound.

THIS is what is unique about Minnesota.  THIS is why I believe they deserve as much funding as every other center has received to treat EB solely on the outside.  Other EB research centers have received tens of MILLIONS of dollars in EB research funding, and while that research is important, NONE of it has produced such a quantum leap in EB treatment.  Minnesota deserves their chance.

That is why I am giving up my birthday, for good.  Would you join in giving U of M their chance?  Just the cost of a card will do, if that's all you can contribute at this time.  Every dollar counts.  Thank you from the bottom of my heart, yet again, for stepping up and standing by our side in this journey!

:-)

In other news, if you haven't followed the roller coaster and miracle that has been baby Tripp's last two weeks, his amazing super-mom Courtney posted an update this morning that pretty much made it feel like I WAS in church today!  She posted two pictures that will curl your toes, so be warned, but they illustrate the DRAMATIC turn-a-round Tripp has experienced!  PLEASE GO see for yourself and make sure to send them some love with your comments!  CLICK HERE to check out her update.  

:-)

Last but not least, yesterday, we had the pleasure of being photographed by Jennifer Edling!  In addition to being Daylon's wonder-mom, Jennifer (as I'm sure you've noticed on her blog) is an awesome photographer!  She is launching a photography business and asked us if she could take some pregnancy photographs to build her portfolio... um, OKAY!

We went to Irvine Park nearby us and had a wonderful time, although it was a little warm!  We are blessed to have BOTH Jennifer AND Sara Cooper in our lives, chronicling this amazing journey we are on.  Sara is going to do delivery day hospital photos of the J-man, so stay tuned for more amazing pics!  Here are some of our favorites from yesterday, and I'll close with those.

We love you, we honor you, we thank you for being here with us still.

God night.