Look for the Hidden Blessing

Look what was hiding under Bella's headband

Oh boy...

Well, Bella isn't finishing her bottles. we're adding hemp oil to increase the fat content to keep calories up, but she either screams and bucks in protest, or passes out and refuses to suck. It's taking a lot out of us besides time. Every bottle becomes an hour-long struggle. That adds up to a lot of time and a lot of stress.

Wound care has hit a new hurdle as well. Bella has blisters on her abdomen now. They're not particularly that bad, but with her extremities, we can swaddle all but the leg/arm we are working on and keep her under control with a swaddle blanket and a pacifier. Even still, it takes 4 hands usually. But with the abdomen, we haven't figured out how to isolate the torso...we have 4 flailing appendages and an arching back that levitates off the changing table. We've been doing the abdomen last, but we may need to move it up to first to get it over with.

Good news is that U of M called today to start the registration process! The first step is to get Ali and Bella's blood drawn and sent to U of M to be read to see if they are a perfect match thus eligible for the study (Which of course they are)...

Samantha Sheridan began her BMT today by receiving stem cells from her little sister Chloe's bone marrow. We are all very excited and praying for the Sheridan family. Please include them in your prayers. Samantha is the 7th person to go through this trial.

CRAZY Providence Story of the day:

So, it was (supposed to be) my last day at work at Del Amo Hospital today. DAH is about an hour away, with a lot of very busy SoCal freeway between home and work. I have been enduring the commute 2 days a week since October without too many complaints.

Till this morning...

At 8:34, I was cruising in the left lane of the northbound 405 at Cherry Lane North Exit in Long Beach.

At 8:35, my stopped car was being catapulted into the car in front of me by the car traveling behind me.

That's just a fancy way of saying, "I GOT REAR-ENDED!" I was the meat in the morning commuter sandwich!

Two cars in front of me...the guy locks up his brakes and grinds to a halt...in the left lane mind you. The guy behind him sees this and locks up his brakes and stops in time. I see him, lock up my brakes, and skid to a stop about a foot from him. Phew!

Then, there is that moment. That split second after you realize you made it, and your gaze shifts quickly to your rear view mirror to see if the guy (or gal) behind you is gonna make it as well. The "Oh ****!" Meter was PEGGED when I looked in my rear view mirror this morning. I saw a black sports car hurtling at me, and it took NO TIME to ascertain that given his distance and velocity...there was NO WAY he was gonna make it. Then, before I knew it, BOOM....BOOM! The first BOOM being him hitting me, the second BOOM being me hitting the guy in front of me. LUCKILY, we were the only three involved. I COULDN'T BELIEVE more cars didn't pile up. I was ready for the worst.

Anyhow, we pull over and exchange info. My back end is totally messed up, but my care miraculously is drivable with no flat tires. On the side of the road, I start to feel a little sick to my gut and dizzy, but just a little. I call work to explain the TOTALLY anti-climactic news. No time for long goodbyes I guess! I drive the car straight to my chiropractor and get looked at. We both agree I have whiplash and a slight concussion.

While waiting for my appointment, I began to think about why this happened on my last day...I mean, what a coincidence, right? Why today? I was reminded of the story of Khidr, how Moses traveled with Khidr and watched him do things that he couldn't understand. Great story if you don't know it. Anyhow, I decided to trust God that there was an important, but not yet revealed reason for this, and just trusted that it would be revealed sooner than later.

When I got to the rental car counter, I looked at my insurance card. It dawned on me that the issue date was TODAY, but I had replaced the old card over a week ago, so even though I'm sure I'm in the system, I've been driving without proof of current insurance for that time period. Then, the rental associate reminds me that my Driver's License expires on my birthday, which happens to be MONDAY.

So, I had 3 days in which to crash that car and not suffer some additional legal headache! PHEW, I was LUCKY!

It gets better...

At lunch, the guy in front of me emailed me pics from the accident from his iphone. He volunteered to do that and was totally cool at the scene. In his email, he included a web address. Well, I clicked on it, and laughed. He's a graphic designer and photographer. I have a book, and a record coming out soon. Think I need someone like that involved? YOU BET! Think I know anyone out here personally to help me out? NOPE.

So, I call Mike, and I thank him for taking such good pictures and being willing to send them to me, but also to explain that I have been looking for someone out here in Socal with his EXACT qualities and capabilities. Yup. Anyhow, on Mike's splash page, there are the following quotes:

C.S. Lewis said:

"I believe Christianity as I believe the risen sun. Not because I see it, but because by it I see everything else."

“There is neither Jew nor Greek, slave nor free, male nor female, for you are all one in Christ Jesus.” (Galatians 3:28) (Read by Max McLean. Provided by The Listener's Audio Bible.)

Powered by BibleGateway.com

I told him that after viewing his site, I realized that God wanted us to" run into each other" (hahaha) and since this was my last day, there wouldn't be another chance like that to hang out. I told him that I am practicing lifting my faith muscles recently, and he laughed because he asked God the same questions I did about where was the blessing inside the accident. He agreed to go visit Bella's Blog and learn more about us and our faith story.

So, I really HAD to have this accident THIS MORNING in order to have all 3 events (insurance, license, Mike commuting to work) taking place.

In summary, by lunch time, I couldn't believe my luck today. I'm sure my colleagues at DAH weren't too happy for me, but I can't wait to work with Mike! I told him what was about to be released and he said that he has worked with converting a blog into a book and knew just how to get it out there successfully.

Okay, off to bed. Remember, the things the God does, you may not understand. Don't question it, just look for the hidden blessing. It is always there, you just need to be willing to see past the illusions life throws at you like smoke screens to get to the good juice! Well, I found the good juice within 4 hours of the accident, and I am so grateful to the kid for hitting me!

Good night and God bless!

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

Well, What a Difference a Day Makes

Leslie Brader, the DebRA Volunteer New Family Advocate, came to our home today. Man, she was AWESOME. She is a EB mommy as well. Unfortunately, she lost her child to Junctional Herlitz EB when the child was only 7 months old. Now, 5 years later, she holds an annual fundraiser in her daughter's memory to raise money so she can fly around the country and meet all the new EB families (like ours) and equip them with as much knowledge and tools as possible. Pretty awesome. She brought all kinds of the latest wound care products, cloth diapers (if you haven't seen one of these lately, go to www.fuzzybunz.com...they're not your parents cloth diapers), et cetera, as well as showed us a great EB family website that has all kinds of great forums for EB families. She was with us from 10 till 4:30, helped feed Bella and gave us some GREAT new tips on dressing changes. I think that went even quicker today. The best part was, after surveying Bella's wounds, Leslie told us to stop dressing daily and move to every 48 hours.

That's a 50% reduction in weekly wound care, folks! We were so excited to hear that as wound care is definitely the high stress point of the day. The products we are using are designed to be left on for multiple days, and there are no gaping wounds right now, no signs of infection, just a lot of healing skin, so we have graduated to a new level with Bella! The three fingers that ballooned in the hospital are now completely healed. Her right foot is about 90% healed, and her left knee has finally closed over completely with new skin. She was born with NO skin on her left knee, shin, and foot, so this is huge.

We also found out there are 2 EB wound care clinics in the country, one in Cincinnati and one at Stanford U. where you can meet with an entire treatment team from dermatologist to GI to nutritionist to PT. While I am grateful they are there, I am creating that we won't need to visit them. We were thinking that an annual or semi-annual checkup there might be in good order, but hopefully we won't need to go for any emergencies.

She also showed us pictures of lots of RDEB kids who look great, and who are leading fairly normal lives. She also told us about a guy WHO IS 42 and has RDEB. We are pretty sure at this point that Bella has the recessive version due to the report that there was NO collagen VII present in the immunomapping. Recessive indicates there is no collagen VII, while in dominant, there is Collagen VII, it is just dysfunctional. The good news about that is that all the research and clinical trials are focusing on RDEB, so there is promise for breakthroughs in RDEB first.

Leslie also commented that Bella was the most relaxed and calm infant she had seen ever during a dressing change. She was also impressed by mommy and daddy's teamwork. She said her husband wouldn't even help out; that it was too much for him, so Leslie was left to wrap her daughter alone...her single fasted wrap was an hour and 45 minutes. Go teamwork!

Here's why today was so magical. Leslie is the first person who has seen our daughter who ACTUALLY KNOWS WHAT SHE IS TALKING ABOUT. No other person who has commented on her had ever seen an EB baby before. Dr. Metz, who took the biopsy, did not comment at all about her, so this was the first informed opinion we've gotten about how Bella looks in the grand scheme of EB. I forced her to categorize Bella at the end of the day into "MILD, MODERATE, or SEVERE" since that is what everyone talks about, and she said MILD. Music to our ears.

Providence of the day:

Last weekend, A grief & loss retreat was held in Phoenix, AZ at the Franciscan Renewal Center. I am usually one of the facilitators along with my mom and another colleague, but I backed out of last week's back in December when we realized Bella's due date (good thing, huh?) I missed being there, because it is an occasion where I get to realize my purpose, which is to heal with music. Leslie, today, confided that she was dealing with grief of her own, and we had the most tender conversation about how pain and memories are distinct from each other, but during grief, they get collapsed. I helped show her that as she heals, that pain will lessen, but the memories will endure. We realized that her daughter's life and death led her to her purpose...to our home, and because of my daughter's life, I wasn't able to express that purpose last weekend. Inside of our conversation, we both realized that sitting together in the living room today, we both got to realize our purpose for each other, and that neither of us had thought that would be how the day went at all.

So, pay attention to the people God puts on your path, and especially, "in your way." There are no coincidences.

Finally, thanks again for all the posts. We are so touched by each and every post. It means so much to us and gives us strength and confidence to continue being who we are being and doing what we are doing. Thank you for your prayers for Bella's healing. They are working. Her body heals every day, and for every little blister or flare up, there is faaaaar more healing occurring.

One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God bless all of you.

Providence Story of the Day

We ran out of the most important product for Bella's wound care yesterday. No problem; box loads of products were en route and would be here today. However, on Thursday the home health nurse says she can only come at 9am...products won't be there by 9 am. I'm gonna have to use a different dressing...something less than what the wounds need right now.

9:05 am: The nursing manager calls to say the nurse called in sick with the flu.

Products show up at 10:30.

We head over to CHOC for Lactation Clinic, come home, and home health leaves a message: no coverage. (By the way, they already said no coverage over the weekend, too. So much for the 7 consecutive days of nurses the CHOC Case Manager promised me)

1 hour later, Becky ,my next door neighbor the nursing administrator indicates not only will she come Sat Sun, but tonight as well.

8pm: We dress Bella's wounds in 90 minutes listening to relaxing classical music, and use the RIGHT dressings for Bella's left leg with the RIGHT amount of people.

Bella slept well last night and today, crashing from her two day long scream fest. The Isomil formula supplementing the breast milk seems to be working.

While her fake looks a bit worse for wear today, ALL of Bella's wounds look better than yesterday.

Thank you all for visiting this site. Please go to www.careforanabella.com and buy Bella's Song.
I need to sleep now.

We love you all!

NICU Weekend #2

Happy birthday to my guitar hero and inspiration Steve Vai today.

Day number ... [I lost count] ... in the NICU ... [seems ... like ... 30]. I think it is actually day 11.

Our brains are mush. Ask me how long did wound care take today. Go ahead. Ask me.

I think 3.5 hours is right. 2 hours for the hands, groin, and right leg...then a break. Then, 1.5 hours just on the left leg.

Three and a half hours of wound care dressing changes today. Why, because I was doing it for the first time myself. Luckily, our awesome favorite day shift nurse Tanya was on a different floor but came down to help Ang, the new nurse du jour and myself. Otherwise we would have been up the creek as our hero Betty does not work weekends.

We're hoping to get it down to 2 - 2.5 hours tomorrow.

We just may be doing it at home on Monday. we're hoping we get one more session with Betty watching us before we venture home.

Having said all that, it was AWESOME and EXHAUSTING at the same time. Bella tolerated the two sessions really well, which helps immensely. The four of us in the room worked together AMAZINGLY. We really worked like a think-tank; constantly brainstorming and bouncing ideas off each other. Really great teamwork today!

But, let me tell you about the latest act of Providence.

I have to give you the short version because I am falling asleep writing this, but it's gooood.

This morning, I saw my next door neighbor while out walking my dog. I wanted to avoid him and not get into it all, and as I was retreating from him, I felt a tap on my left shoulder and a voice/feeling that said "Mike's wife is a NICU and pediatric nurse and has volunteered to to help if ever needed. GO TALK TO HIM." So, I walked up to Mike and asked him if she is still in the biz.

He then proceeds to say that she is in charge of home visits for OC nurses Dept. of Public Health. If we ever call the county for a nurse to come visit...turns out Becky is that administrator who sends the right people to the right cases. In fact, she has a nurse who has a EB kid in her case load who she will send when we are ready for her.

Turns out my next door neighbor is a key player in this journey once we enter the outpatient world. What are the odds?

Who cares. It's Providence in motion.

To other events...Ali's potty party was awesome! Tonight after I played guitar for her in bed and sang her Bella's Song AT HER REQUEST, she began to improvise lyrics to a new song and asked that I play guitar.

Her are her lyrics:

God is healing her
Because she is a strong girl
Because she drinks her milk
Because she drinks a lot of milk.

I didn't ask...she just went there on her own. She is the greatest daughter ever.

Okay, I can't see straight any longer. Thank you all for your continued support. Please keep posting comments and messages. They are the wind beneath our.....collective wings.

Please check out www.myspace.com/timringgold for more songs available for download.

Good night and God bless every one of you.

Namaste.

The bad?

1 small new blister on the left arm and two medium sized blisters showed up inside existing wounds under the dressings. Betty, NO blisters from the pulsoximeter!