The Emails Just Keep Getting Better

The emails just keep getting better. This thread is between me and the dad of a girl who is doing GREAT after a successful BMT. You can follow her story at http://www.acureforhannah.com... (sorry for the poor grammar)

Tim,
Thank you for your kind email and sharing with me about Bella!! We will keep her in our thoughts and prayers. I will check out her page and your blog. If there is anything we can do to help support your fund-raising efforts, please let me know. Our hope from day one was to share with everyone, no matter what the outcome. We know how it feels to be so desperate, to worry about hurting your child just hugging her. They truly our a gift from God and we cherish every moment we have with her. Please let me know if we can help you or your family in anyway.
Many Blessings,
Jason

Tim Ringgold
August 24 at 11:04am
Hey you are most welcome! Say, do you know what the minimum age for eligibility is for the BMT trial? On the website it only mentions 25 or under. Did you go to MN to find out if Mason was a match, or can you do that locally?
Thanks for the info; we are planning on participating as well as soon as Bella is medically eligible.

Jason York
August 24 at 11:08am
I am not sure what the minimum age is, but do know that a family with a child less than a year old is going through the process soon. You can have the match test done through you local pediatrician... it is just done from a blood draw. Check with Tim Krepski, and he can let you know what you need to get locally. 888-601-0787, if he is not there or doesn't return your call....keep calling.... squeaky wheel gets the grease.
Blessings,
J


This next thread is between me and my childhood friend I found on Facebook last night that I alluded to in last night's post...

Hi Tim,
Good to see you on Facebook. I saw that your daughter has EB. It happens that I work in Pediatrics in Minnesota and know that my colleagues have performed transplants for EB:
http://blog.lib.umn.edu/bmt/ebtrial/
Her eligibility depends on her particular mutation, but I thought I should let you know.
Best regards,
Logan

Tim Ringgold
August 24 at 10:40pm
WOW. Hey Logan! I was just on that very page this week! In fact, I was emailing back and forth with a EB dad who's daughter is around BMT day +130ish and doing great. He gave me the name of a Tim Krepski to contact to get the process started. Bella has Dystrophic EB. We are 99% sure it is recessive due to the complete absence of Collagen VII beneath the dermis. The original biopsy couldn't confirm the recessive diagnosis, so in the beginning of July, we did a blood test that got sent off to GeneRx to hopefully find out for sure.
Crazy, man. Do you know Dr. Wagner or this Krepski guy?
Thanks for reaching out. It's an even smaller world thanks to facebook and the internet, huh? How long you been in MN? Good place to practice medicine I imagine judging from The Mayo Clinic and U of MN.
We'll be heading your way at some point. Let's make sure to connect when we end up your way!
Blessings,
Tim

Logan Spector
Today at 6:26am
Hi Tim,
Yes, it's a small world. The internet's definitely opened up possibilities for everyone, but especially the parents of children with rare disorders.
I do know John Wagner and all the pediatric transplant docs very well. They're all in the division of pediatric hematology/oncology and since I study childhood cancer we work closely together. I don't know Tim but he's a nurse rather than faculty, and so would be coordinating care rather than directing it.
It looks like the trial is for kids with collagen mutations rather than keratin mutations, so your daughter may qualify. If you do come it's a great team and (not that this is a primary concern) a great city to stay in. I've been here seven years, since graduating with my PhD (I'm not a physician). My wife and I have a boy and a girl, and we just this week moved into our second house.
Let me know if you come up here and I will help any way I can. If nothing else I can lend you a parka- those might not be so common in Orange County.
Logan


Watch as the Providential hand of God gently moves us through our lives, connecting and reconnecting. Who is He connecting you to?

Many blessings to all,

Tim

P.S. Don't forget...I am closing the Care Pages site on August 31. Please visit this blog only to continue to follow her story. Put the address above in your bookmarks/favorites. You can receive updates by creating a blogger/gmail account, become a follower and we will show up on your reading list each time log in. You can also check the options as you may be able to turn on an email option each time a post is made. When you become a follower to our blog, it Lets Ang and I know that you are still reaching out over the internet and walking this journey with us. YOUR PRESENCE through all of this has given us the strength to seem so strong. As the saying goes, YOU are the wind beneath our wings! (Can't believe I just went there - oh well...it's true!)

PROVIDENCE HAPPENS!

Okay, I wasn't gonna update tonight (I only got two hours of sleep last night - thanks Bella!) but after the 2 emails I just got - I HAD TO POST THIS.

First off, my friend Jim wrote back to say that he pitched me to EMI Records and they "warmly embraced" the idea. So we are meeting in the studio up in LA next Tuesday to go over the details.

Second, I was on facebook linking up with some old friends from elementary/middle school. I got an email back from one old schoolmate:

Hi Tim,
Good to see you on Facebook. I saw that your daughter has EB. It happens that I work in Pediatrics in Minnesota and know that my colleagues have performed transplants for EB:
http://www.facebook.com/l/;blog.lib.umn.edu/bmt/ebtrial/
Her eligibility depends on her particular mutation, but I thought I should let you know.
Best regards,
Logan

It "Happens" that I work...

PROVIDENCE HAPPENS!

The above link is where I went to register for the clinical trial that I wrote about last week! I think we're on the right track.

Good night and God bless.

Providence...The Book

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"

Soooo....

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!

Blessings,
Tim

Ripples in the Pond...

Ripples in the Pond...

...more on that later.

First the bad this time...

Bella's head...well...let's just say she is now doing her best Kareem Abdul Jabaar impersonation (see photo gallery). The blisters were coming so fast and so many on her head we had to wrap her head to try to help keep it under control. Now, she is roasting due to covered limbs and a bandaged head. She has three wounds on her face: one under the left eye which is healing well, one over the right eye which is healing well, and a new giant wound across the bridge of her nose down onto her left cheek which, though it looks huge and MUST be painful, it is clean and responding well to aquaphor. We are now adding colloidal silver to her feeds to boost cellular recovery and aid the immune system. She will receive colloidal silver for only 7 days, then off. It isn't intended for long term use. We are also using Mepilex Ag (foam pad infused with silver) again on the left foot as it has just been such a mess for so long...not to mention I have a stockpile of Ag in the garage and very little straight mepilex. Mepilex works the best on elbows, so we are using it up on elbows. Hands continue to look clean and blister free.

okay okay, now onto the good.

Ready for The Ultimate Dose of Providence? Check this out...

Sunday morning, it was my turn to do the offertory at church. What that means is I go up in front of the congregation and say something about giving. Then, music plays as they pass the plate for contributions. I like doing the offertory, because I get the chance to preach a little! I have been on the schedule doing this maybe once a quarter for maybe two years, and the congregation always gives me really nice compliments for whatever it is God happens to say through me, as if I am the source. I always thank them graciously, but I am just a conduit - a transformer. It's not from me, it's through me. Simple as that.

Anyway, there I was, up in front with a wonderful plan. I led the congregation through a guided imagery/visualization experience. Oh heck, I'll lead you through it, too. However, you can't actually do it since you would have to close your eyes...and then you wouldn't be able to read on! So, here it is (approximately)...

"I want you to close your eyes. Close 'em! Remember, I can see every one of you, and I can see if your eyes are open so, close 'em! Picture you are 8 years old again. Just a boy or a girl. You are standing on the edge of a pond. It is summer, and it is early evening. The crickets are cricketing, and the bullfrogs have just started doin' their thing. You look out over the pond. The sky above is waning, and the water is still and looks like a sheet of glass. You look down and see a large pebble, and you just can't resist. Being the 8 year old that you are, you pick up that pebble and lob it into the center of the pond. It makes a piercing splash, darting through the evening peace and serenity. You see the splash, and you are happy. Then, you begin to notice the ripples in the pond's surface that the pebble caused.

Now I ask you: does the pebble know the blade of grass growing at the edge of the far side of the pond that its wave just fed? Does it know the baby dear that will eat and be nourished by the blade of grass? Or how about the little child who will gaze upon that dear in awe in a different field on a different day? You just threw that pebble because it was fun.

Now I tell you: You have no idea how far your gifts reach. YOU have NO idea how far your gifts reach."

Then I broke into an abbreviated, a cappella version of a song I wrote called "Ripples in the Pond" I sang,

"Sometimes you never know
How far the ripples go
When you throw yourself into the pond called life.
Sometimes you never know
How far the ripples go
But you throw yourself back in again and again
With a smile

But Jesus what you need to know is who you are for us
For we are now the cause of the ripples in the pond
Who knows where or when we first threw ourselves in
But we all know what's true is that we're still splashing
Because of you

Sometimes you never know
How far the ripples go
When you throw yourself into the pond called life.
Sometimes you never know
How far the ripples go
But you throw yourself back in again and again
With a smile"

THAT SAME MORNING...

...in a church in a nearby city, a minister was giving her sermon. She was a visiting minister to the church. The details were delivered to Ang's mom at a car club meeting in a third different city Sunday night. A club member mentioned to Carolyn that the minister was telling the story of a little girl who was recently born with a rare skin disease, and of her parents and their faith, and this woman realized that this minister was indeed speaking of Carolyn's grandchild! The woman merely said the minister's name was Karen...

...could it be Rev. Karen Reddick? Our old choir director and friend? Although Karen left our congregation a few months ago, she has followed Bella's story on this very site. So, while I was preaching, "You have no idea how far your gifts reach," Karen was preaching about us.

We are all connected, my friends. Our thoughts, our feelings, OUR PRAYERS, our actions. They resonate throughout this world in ways we barely understand. But make no mistake, we cause the ripples in the pond every day.

What ripples are you making?

Phew...the Weeks FLY By...

Check out that Smile

phew...the weeks FLY by...

The good:

I think (knock on wood) that the new "ABC Wrap" technique with 1" gauze on Bella's hands combined with a mitten is WORKING to keep her hands blister/wound/ and webbing free. We got a gift box from someone at church that had wonderfully thin mittens in it so we can actually hold Bella's hands and feel her squeezing our fingers with hers! When this is done in the middle of an attachment gaze and some cooing...life doesn't get any better.

Bella slept from 12:30am to 6:30 am last night! WEEEEE!!!!

We switched (again) formulas to Nestle Good Start with Probiotics and this has seemed to get her painful gas under control finally! She is still on Zantac and Culturelle twice a day, but the Culturelle has different probiotics than the formula, so we're thinking the double action is really helping.

WE WENT OUT ON A DATE JUST ANG AND I ON TUESDAY NIGHT!!!! WOOOHOOOO!!!! THANK YOU THANK YOU THANK YOU to Grandma and Grandpa for taking Ali to spend the night and then go to the aquarium the following day, and thanks to our next door neighbor Becky for watching Bella! It was AWESOME! Don't get us wrong, we love our kids, but we HAVE to water the marriage FIRST and that has been challenging because it is so easy (mainly due to lack of sleep) to just take one day at a time and not plan out anything beyond the necessary, but GOD LOVE Grandma and Grandpa. They called us and asked if they could take Ali on Wednesday and pick her up Tuesday night. Once we had that in place, making the call to Becky wasn't so hard, and bless her heart for agreeing on one day's notice!

Susan Hermes contacted us today. She is the mom of an 8 yr old in neighboring Irvine also with DEB. She gave Ang lots of good insights and info.

We have a new contact at Byram...our Woundcare supply distributor. Our original salesperson was great out of the gate, but I don't think its her job to work with us ongoingly. So, when we were having trouble getting any gauze, after a month of patiently waiting, I threatened to fire them, and the next day the Customer Service Supervisor called to say he would be taking over taking care of us. That same day, what I had been waiting a month for arrived.

(This was such a good exercise...when I started typing, I was tired and run down. Then I wrote, "The Good:" and thought to myself, "Hmmm, so what's been good this week?" Then it started to flow. It was all up there in my head, but I just wasn't present to it, so it seemed like it wasn't there at all. Next time you're in a funk, write down, "The Good:" and make yourself write 5-10 things that apply. There in there!)

The bad: (yes, it's not all pollyanna)

Bella's infant hair is falling out on the sides of her head, so that nice friction buffer called hair is no longer protecting her delicate little scalp. She has tracks of blisters and wounds on both sides of her head and one heck of a gouge right under her left eye. The blisters on her scalp are weird. They are hard, and don't drain. They are often discolored and look more like psoriasis than EB blisters. Weird.

We've been trying to use breast pads for elbow, heel, and knee protection once blisters have healed, because Bella rubs the skin off these spots with great ease, but they just aren't working on the elbows. She continues to re-injure her elbows despite the pads, so we have to keep looking for a reusable, economical solution that will stay on and protect. The mepilex foam dressing we use when there is a wound there is awesome, but extremely expensive, and I don't want to burn through it as a prophylactic.

The inside of Bella's mouth is a mess. So many giant blisters. I do a good job of blocking it out and not imagining what that must be like, but it is hard when every bottle feed seems to begin with her arching her back and stiffening up like a board while crying and trying to suck simultaneously. The best feeds are the ones when she's still asleep, but those seem to be fewer and fewer lately.

Bless her little heart, Ali tried to help Bella with her binky (pacifier) tonight and rubbed a good chunk of Bella's bottom lip off in the process. Ang and I were loading groceries in the back of the minivan so we didn't see it go down. Ali has been politely relieved of binky command indefinitely. She is such a good helper and has a heart of gold, she had no idea.

That's enough.

Throughout this journey, we have recognized that there will be ups and downs and there have been. But really, it's all GOOD in the end. Life has been so much more...well let me give a couple of analogies...

Life just went from AM to FM Stereo
The volume on the Life Channel just went up to eleven! (think Spinaltap)
Life just went from a black & White with rabbit ears to HD on a flat screen!

It's all just a bigger game than before. What I have learned is urgency. The dreams of "someday"...they need to come NOW.

Live your life like your life depends on it.

God bless and have a wonderful day today (whatever day it is that you are reading this!)

The following is related to the CARE PAGES blog:
P.S. I will be transitioning over to www.careforanabella.com in 2 weeks. Beginning on my birthday, AUGUST 31, I will only be posting to that site from here on out. Please go there and sign up as a follower. That way, you can elect to be notified when there is an update, just like on this site, but that site allows you to listen to music, link to videos, and even make a financial contribution if you feel called to. Plus, you can forward that site address with ease to your friends and family and they don't have to log in and become a member to read Bella's story. But, PLEASE PLEASE PLEASE sign up as a follower. We don't want to lose you!

I will continue to warn you of the upcoming transition so you have ample reminders! IT'll be like switching from analog to digital TV-oh wait, that didn't go well...nevermind! Just go to www.careforanabella.com!

:)