Thursday, June 18, 2009

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'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 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.


  1. Comments from Care Pages Site:

    Posted Jun 21, 2009 8:55pm
    by Angela Ostermann

    What a relief to be able to talk to someone who actually knows something!! That had to feel excellent! I am so happy to hear she is ranked as MILD! Excellent post! And you sound in great spirits.. keep it up :)
    Posted Jun 21, 2009 8:14am
    by Jan Pflaum

    Tim, Happy Fathers Day. What a great father you are. I observed you in the hospital and you are so loving and caring to your family. What a guy.............. That does not come by osmosis, it comes from good parenting from your parents................ You are so blessed.
    How wonderful is life for you now? Everything is looking up for all of you............good news. Uncle Bill and I will becoming down sometime in July to see all of you.......... We will let you know plenty of time in advance. We are looking forward to seeing Bella and Ali........ We will stop by Carolyn's first and she probably will come with us......
    Happy Fathers Day to a fantastic father and to a terrific mother as well..Love Uncle Bill and Jan.
    Posted Jun 19, 2009 9:21pm
    by vicki hurst

    Wonderful news I am grateful for even the small hang in there I see light at the end of the tunnel.
    Posted Jun 19, 2009 8:59pm
    by Barbara Dailey

    good to hear of your continuing incidental blessings you are receiving - I heard a woman on Oprah yesterday who has a small daughter with a possibly terminal illnes - she said "I have made up my mind - I will be sad later, but today and every day I will enjoy, love, and be happy with my baby" what a gret thought - love you guys - Barb/Walt

  2. More from Care Pages:

    Posted Jun 19, 2009 8:49pm
    by lauren hicks

    It was SO good to see you Tim! Your ability to find the silver lining and the greater purpose is inspiring. Sending lots of prayers and positive thoughts to you and your family...
    Posted Jun 19, 2009 2:12pm
    by Lynne Boschee

    Once again, your post has me in tears. Tears of gratitude for the help God sent you. Tears of joy for Bella's healing and her categorization as "mild." Tears of awe for who both are for your beautiful girls and who you are in the world. Love to all.
    Posted Jun 19, 2009 11:55am
    by Kristine Gorman

    Hi Tim - I am in Cincinnati. Kinda shocked that we have 1 of the 2 wound care centers . Is there anything I can do/get for you locally?

    Kristine Gorman
    Posted Jun 19, 2009 11:25am
    by Treisa Cassens

    What a wonderful thing. Each day I wake up to Bella, and she and her parents are an amazing set of people! All our love to you all!
    Posted Jun 19, 2009 9:00am
    by Marie Bresnahan

    I am now including Leslie in my throughts and prayers! What a wonderful resource she must be. So cool that she is htere to help you.

    Posted Jun 19, 2009 8:45am
    by terri wiener

    What a wonderful report!
    Posted Jun 19, 2009 6:23am
    by MB Young

    That's good news! Surrounding yourselves with those who actually know what they're talking about should make a difference in your strength, too. Sorting through/processing guess work must be exhausting. Go Bella!
    Posted Jun 19, 2009 3:24am
    by Jim Hornaday

    Tim, you are amazing! And you are extremely blessed to have a wife as awesome as Angelique. What a wonderful environment for your two daughters to grow up in! LOVE... it's where it's at. The Ringgold family love is incredible! OVERflowing. brings tears to my eyes.

    One day, Bella's gonna tell her friends that she had a rare skin condition when she was born, but after she came home from the hospital, it went away.
    Posted Jun 19, 2009 1:54am
    by Albert Alva

    It seems like hope is all that you were praying for, and it finally arrived. I'd say that overall, it was a pretty good day.
    Posted Jun 19, 2009 1:53am
    by Jose Alfredo Martinez


    Indeed, there are no coincidences. It is possible with God!

    God knew exactly the kind of parents it would take to help Bella heal. Keep up the good work!
    Posted Jun 19, 2009 1:43am
    by Megan McGuire

    Dearest Ringgolds,
    I'm so glad to read of the positive experiences, interaction, and feedback you received today. Our hearts and prayers are with you daily. Yesterday, Marissa sang the words she knows of "Twinkle, Twinkle, Little Star" to Bella as we looked at new pictures of "Baby Bella" and she started the song - I think she was inspired.
    I am aware of the EB clinic at Stanford and John and I discussed it last night, but we want you to know you are absolutely welcome to stay with us at any time should it be necessary for you to make a visit to LPCH. We are about an 1 1/4 hours drive away in rush hour traffic, but it beats spending money on a hotel in Palo Alto. Of course we will hope you don't need to go there, but if the need arises you have friends in NorCal, too.
    Love to all of you,
    The McGuires
    Posted Jun 19, 2009 1:37am
    by Jim Thomas

    Keeping the positive flow going. Yes, she will.