Friday, August 21, 2009
Ahh, bath time!
Good old fashioned snail mail still sends us your love and abundance almost daily. Thank you.
Don't forget to sign up as a follower. It's easy! Go to the heading-Followers in the right column, and sign up as a follower.
Okay. First, before I forget. We sent in our inquiry to the University of Minnesota EB Clinic regarding the stem cell BMT clinical trial happening there. We have decided that as soon as Bella is eligible, we are going to pursue that option. HOWEVER, it only works if Ali is a "sibling match"
Put on your prayer hats and PLEASE generate some serious power that Ali is a perfect match for Bella.
I genuinely believe at this stage of this faith journey that she MUST be. It just wouldn't make any sense for her not to be. However, I believe that a large majority of the glory that has been these past 12 weeks has been from YOUR power, strength, love, and prayers. After all, it's been 12 weeks, AND YOU'RE STILL HERE. Thank you for sticking with us! Check out the new photo of our mantle. It is OVERFLOWING (like this message board) with your love and support.
Bella's blisters are increasing of late. We don't know why. EB is just EB and it does its thing. Her head and face are really beat up right now as are both thighs. Elbows are healing, but fingers got banged up between Monday and Wednesday. Also, the crease behind her right knee basically split open today from too many wraps rolling down and causing too much friction. That's gonna be a tricky one to get to heal do to the fact that Bella kicks like a mule several times a day, every day. Again, send the prayers.
Nevertheless, after a MONSTROUS blowout of her diaper this evening, she was happy as a clam and smiling and chatting up a storm...GOD LOVE HER!
In other news, I am working away on the first 48 hours of Bella's life. It will be combined along with the blog and its comments (private messages will be omitted) into first an eBook, followed by a printed book. The working title is currently "God Wraps Gifts in Mysterious Packages: a Humble Story of Providence." I know I know...it's a really long title. I'm open to suggestions, as long as they have the word providence in them. ( I bought www.providencethebook.com today) It has been very difficult to write as it is still a little raw, so I work on it a little at a time. We will be giving the Ebook away for FREE online. All anyone has to do to download it will be leave their name and email address. We are also combining a fundraising opportunity with the book. For those who want to pay what they feel the book is worth, they will be able to pick one of 5 charities that will be related to EB and Music Therapy, and 50% of what they pay for the book will go straight to one of the charities on the site of their choice. Then, at the end of the month, I will match the charity that has the most contributions, essentially giving them 100% of the revenue generated by its followers. This way, I get to experience giving most of it all away, and get some compensation to help out the family. Each month, I will rotate in new charities, so each charity has an incentive to drive its members to the page. I would like to also make the book and audiobook and give that away free as well.
PROVIDENCE STORY OF THE DAY:
Yesterday in the am, I was thinking about who I still knew in the record business. There is an album of material already recorded related to this and prior journeys of faith, and I want to make it available in CD format as well as mp3. I sent out the vibe that I need someone to help me with the production and distribution. I don't know that I have the know how and time to handle all that.
Yesterday in the afternoon, an old friend of mine called. We had played phone tag over the past couple of weeks. He and I were in bands together in Phoenix back in the day, but were never in the same band together. We maintained our friendship and affinity for each other as our career paths diverged. Anyway, I ask him what's new and he tells me...
...wait for it...
...that he has a record label now. He has full distribution through EMI including marketing and tour support. He can sign 12 artists/bands a year, and has a full recording studio in his home in the Hollywood Hills. After I tell him about Bella, and that I had this body of work I want to get out there to help raise money for her care, he says, "Dude! I can help you! We can finish your record here!" Then, he proceeded to get all excited explaining what he could do with the label behind him. The best part is, after so many years as friends, we would FINALLY get to work together!
So, I think I just landed a record deal yesterday. I don't quite match the style of the other artists on the label, but what the heck, when your friend owns the label, I guess it's okay?
GO to http://www.myspace.com/timringgold to hear the new song, "Providence" that has been written to describe this walk I've been taking these past 12 weeks. I'm pretty sure that will be the name of the album as well at this point.
Good night and God bless you all. Thank you again for your love and support. Please continue to send us messages, even if you think we already "know" that you love us and care for us, we never grow tired of reading it, seeing it, and hearing it!