What a Celebration!

On Saturday, May 29th, we celebrated Bella's first birthday in style. We were surrounded by "the Three F's" as I like to call them: our Friends, our Family, and our Faith community. We threw the party at our church fellowship hall and the food, cake, and fun was enjoyed by all, especially Bella!

We had the outdoor playground open for the bigger kids, the nursery open for the younger kids, soccer balls out on the lawn, and slide shows and video montages of the past year running in the main hall for all to enjoy, no matter what their age.

There was just so much JOY present. It was awesome.

Living through a year of Epidermolyis Bullosa has been the most challenging and rewarding experience to date. It has amplified everything in life. I don't take ANYTHING for granted anymore. The love felt from everyone on Saturday was so wonderful. We go to Minnesota filled with love and support from everyone around us. What a great feeling. Even the guys I play Sunday afternoon soccer with are praying for us.

In other news, PLEASE check out this month's Featured Partner! It's DebRA!!!! YAY! We are so excited to continue to return the favor by raising some more money for them this month. They have been so good to us since day 1, and last month, not only did we raise enough money to donate 100 books to their New Family Boxes, but we raised several hundred dollars over and above what was needed for the book drive! Well, let's keep it comin' this month!

We are sad that we are going to miss the Patient Care Conference DebRA is holding in Cincinnati this month. It's the first week/weekend we arrive in MN. That would be a little too much to bite off. It wouldn't be so bad except it is only held once every other year, so we are sad we will have to wait 2 YEARS to meet our community face to face at last.

Meanwhile at home, we continue to prepare for next week's pilgrimage to MN. I can't believe by this time next week, I'll be in Salt Lake City driving the minivan alone MN. There is still a fair amount to do, but we're getting a lot done every day. Thanks to my parents for coming out from CO to participate in the party and help here at the condo. Just watching the kids play while I run around banging out honey-do's is such a help.

I will close by asking you to comment on this post. Each family that has gone through the BMT has communicated in their own style on their blogs and have shared a different angle or view of the journey. We are asking you to tell us, "What aspects of the BMT journey would you like to read about specifically?" Please tell us. We plan to be a clearing house of information and inspiration throughout this journey. SO many gave so much to us through the web in our first days, weeks, and months, now it's our turn. So, PLEASE, comment.

Peace!

Happy Mother's Day!

Happy Mother's Day to all you moms out there!

Today, we shared the morning in a beautiful park in Huntington Beach with Ang's mom, brother, his wife, her mom and their two kids. It was a lovely morning filled with good food, kite flying, playground playing, and gifts. Ang is off shoe shopping, one of her favorite things to do if given a hall pass, while we watch "Yo Gabba Gabba" and "Miss Spider's Sunny Patch Friends." Ali and Bella can't get enough of Nick Jr. these days. I love giving Ang hall passes on the weekend to get out and just be. She gets so little free time; she's either working full time to keep the home fire burning, or cooking or bandages or laundry... it's nice to just switch out of 7th gear once in a while, right?

What is most amazing about Angelique is how well she manages moving between corporate guru by day, working out 5/6 days a week, then getting home and switching gears into cooking a wonderful, healthy meal for the whole family, giving Ali a bath, and putting Bella to bed every night. In addition to the fact that she does all that, it's how easy going she is moving between roles and how present she is in each situation she's in that is what is so beautiful about my wife. Ang and I really blur the lines of traditional gender roles of husband and wife (as do more and more couples of our generation), and this takes a lot of partnership, trust, respect, and communication. Ang brings all of that to the family with ease and a smile.

Angelique, it is a privilege to be your husband. I love you honey. You are AWESOME in everything you do.

I love you, too, mommy!

Here's an update from the Ringgold Clan...

This weekend Bella moved into Ali's old crib, and Ali got a loft, completely 'princessed out'. Thanks to the Thomases for letting us use their crib for Bella for the past year! It's really nice seeing Bella in Ali's old crib. It brings back a lot of fond memories. Ali's new loft is pretty cool, if I may say so myself. It took quite a lot of effort to transform it from the bare bones, blue, white, and raw pine loft from IKEA into the princess kitchen and tree house that it is now. Pimp my loft called earlier today to ask if they could feature it on their show. Just kidding.

Thursday, Bella, Ali, and daddy ventured to the San Diego Zoo for fun, discovery, adventure, and... MOUNTAIN CLIMBING! I say mountain climbing because the city of San Diego built this world class zoo in the steepest ravine known to mankind. The hills are pretty amazingly steep and big. So big and steep in fact that there are several "Watch out for runaway wheelchairs" signs posted on the hills. (Just kidding... not really. The words were different but that was the gist of it.) Now, tack on the double stroller full of a toddler and giant baby, and a diaper bag full of provisions, and lots of water and juice, and you get about 60 pounds of extra exercise!

The best part of the day (and there were MANY) was when Bella started crying and the GIANT panther looked up from his perch high above on the hill and licked his chops. The family standing next to us and I had a good laugh (mixed with nervous laugh) over it. I told them I wasn't above using my daughter as bait to get the lazy cats off their duff. It was right about then that they stopped laughing and awkwardly turned away.

What? What did I say? Oh well, can't take a joke, I guess.

Bella the mad scientist villain with her death ray stare... DON'T LOOK!

Friday, Ali had her 3rd swim lesson and Bella was SO ANIMATED the whole time. She loves when the bath is running and really loves being poolside for Ali's lessons. I think she's gonna really take to the water once her skin heals. Ali LOVES her lessons and is having tons of fun and progressing well.

Just imagining Bella in swim lessons doing what Ali was doing is so very surreal. Frankly, it's a mental chess match trying to measure ambition and hope for this clinical trial to be miraculous with the intense reality of the disease she has. How does one be ambitious AND content at the same time? Ambitious enough to dare to declare that "One day, Bella will look back on this and say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it just went away,"" and yet content in knowing that this present moment is all we really have, and that since we've already chosen to see her life and condition as a blessing, seeing her happy and animated NOT in the pool is okay, too?

Life can be a conundrum, huh?

The first Partner of the month check I got to write was to P.U.C.K. All from Bella's book sales!

Last but not least, Bella's birthday approaches! We are thrilled and blessed to be reaching this milestone. We recognize every day with EB is a gift, and some haven't gotten as many days as we have with their EB babies, so we are grateful. In lieu of gifts for Bella (we have already been given so many this entire year) we are asking people make a donation to a special program we have created.

We are giving away a copy of Bella's Blessings: a Humble Story of Providence to every family DebRA learns of who has a baby with EB here in the US for roughly the next 4 years. We are donating 100 copies of the book, and DebRA learns about approximately 25 new babies a year. They send out a "New Family Box" full of supplies and info to assist new families, and through this program a copy of the book will be included in that box! We received so much positive feedback from EB parents that we realized we wanted new families to have the info and experience and hope of our journey to support theirs.

We are also giving away a lot of great prizes (including free books) to those who donate at certain levels! Fun fun fun! Go to www.ebhope.com to read our funny entry levels and prizes!

Thanks to all of you who have supported us throughout this past year; our lives are enriched by your presence in it. We are blessed by you. Thank you.

Gotta love this sequence from Physical Therapy the other day... Bella's first High 5's!

Bella's First Bath

Big Day today! Bella's first bath.

Boy, that didn't go so well, but more on that in a moment.

First, the day started out at the Doctor's office. Of all the diabolical things for Bella to have...she got a mad case of BABY ACNE. It started out as what we thought was a rash, but over the past 24 hours, her face just erupted and began to look REALLY bad. Her pediatrician, Dr. Bindra, took one look at it and said, "Yup, baby acne, and I can see it's gotten infected in several places on her face." He used the "I" word, and we shuddered. Infections are one of the big 3 killers of DEB kids, and we swore we'd keep her infection - clean. It just happened so fast. Bella beats her self up with her hands and scrapes up her face despite the round the clock gloves and socks we put on her. Yesterday evening, her hand snuck out of the glove while she was swaddled, and while she was in my arms, I watched her reach up and gouge a inch long gash in her right cheek. By the time I got my hand to hers, the damage was done. It is INSANE how little effort it takes to peel off her skin.

Anyhow, he wanted to put her on oral antibiotics, but we asked if we could treat it topically first; Dr. Dahr at CHOC warned us that we were in for the long haul with wounds, and to use antibiotics judiciously so as not to create a tolerance for them over time. Dr. Bindra was okay with that idea, but he wanted us to switch the type we're using at home to a little more potent topical ointment for this to catch it off guard. So, we started her on the antibiotic ointment as well as another topical scar treatment, and her face already looks like its getting back under control...a little.

Okay, so we figured the worst was over for the day (Bella screamed just about the whole time at the Dr.), but alas, we were wrong!

We had heard that bath time and wound care are the most stressful times for the EB family due to the pain involved for the patient. We have really been waiting to get the left leg fully closed and healed before attempting any such endeavor. Well, today was the day. We decided there's no way to do it but just do it, so we got prepared (or so we thought) and stripped Bella down. There was a really great moment before the bath began when we took all the bandages off both legs. Diaper was off, and the only dressings were on Bella's hands. To see her two legs in their entirety, and her feet with all those cute toes...oh it was AWESOME!

That happiness was short lived however when we put her in her cute little tub. The moment the warm water hit her skin, she started to kick and swing violently like she did back in the first days home from the hospital. I was holding her arms from beating her face and trying to keep her far enough from the bottom of the tub so she wouldn't kick the tub and Ang turned for a second to grab the warm water when it happened...

With one kick of the right heal, Bella scored a direct hit on her fragile left ankle and tore the skin right off it. She left a hole the size of a nickel, but that was just the tip of the iceberg, The trauma ruptured the skin all the way around the hole another 2 inches in diameter, and it began to fill with fluid, then drain through the wound, then fill with fluid, then drain. It was surreal to watch. As I tried to dab bacitracin on the wound before wrapping it, the bacitracin stuck to my finger and stuck to the loose skin around the wound, and as I pulled my hand upward, a giant section of skin just lifted right off her leg, showing how big the wound really was. It was one part open wound, one part giant blister. To put it in perspective, the wound would be about 6 inches in diameter running up the inside of my shin from my ankle. One kick. What's worse is it happened literally as I was saying, "We gotta isolate that leg before she..."

Again, it just happened so fast. I was brought back to the day where the boot came off on the changing table, and we were out of hands. Today was one of those days. I don't know HOW we got her out of the bath and cleaned up, but we did. Normally, Bella's screams and cries sound like anger, but today, we heard pain like never before. Even after, while asleep, every couple of minutes she let out a cry that just cut straight through.

It took 6 weeks of wound care to close that leg. Now we begin again.

On the bright side, we received a welcome care package from DebRA yesterday that had a host of different wound care products and cloth diapers, all different from what Leslie brought out to us! In it was a product that works 100 times better on her fingers than the one we've been using, so I am really excited and re-energized about healing those fingers. You just gotta take the good with the bad.

I am also reading Sean Stevenson's book called "Get off your 'But'. When I spoke to him, he told me to read the first chapter because it details what it was like for him and his parents dealing with OI (aka brittle bone disease). When he would break a bone, his parents had to immobilize him at the location of the accident for 6 weeks....not the location of the break...of the accident...which means that on Halloween when he was 9 and broke his FEMUR crawling around the corner in the living room, he literally spent the next 6 weeks in that spot on the living room floor healing.

THAT is adversity.

Yesterday, I played classical guitar for a patient of mine who I used to play native american flute for when she would come in and receive her chemotherapy at the outpatient cancer center at the hospital. She was referred to me for "end of life" treatment. I didn't realize it was her until I walked in the room. Her husband was in the room as well, as he always was in the past, but now they both looked so very sick, and just beaten. It had been since mid May since I had seen them, and what a turn for the worse life took them as well. Normally, her husband was strong, but yesterday, he was so tired, weak, and distraught. He cried while I played. My suffering was quieted in the presence of theirs.

I used to think that due to earlier life tragedies I have weathered, that I somehow had 'paid at the office' and was therefore entitled to live out the rest of my life suffering-free. I am humbled by the vastness of the sea of live we swim through. It is so broad, and I am so small. There is comfort in this humility, because if God can pour such endless support over such a tiny being like my daughter, than there truly is grace and peace available to every living creature on the planet. It is our job just to look for it. It's there. In the face of the next person we pass. In the vista of yesterday's summer sunset that I watched with Ali in my arms. In the card from a church member. In the OVER 400 messages of hope and love you all have left us on the Care Pages site, not to mention the separate emails, phone calls, and cards. With all this grace and peace around, it truly is a shame that people go through life missing it. I am blessed not to be one of those people.

I thank God for blessing me with Bella, Ang, and Ali, and I thank you for blessing us with your love.

God bless you.

What a first month!

Bella turns one month tomorrow. Whew. What a first month! I know the 1st birthday party is more for the parents...can we have a first month party for surviving this past month??? :) I foresee things getting easier in the immediate future, however. God willing, Bella will continue to be stable and relatively calm at home. Developmentally, she won't be doing too much in the next couple of months in terms of walking/crawling/eating/etc. so that should give us time to really get her healed and strong for when she is ready to become more physically active.

What a gift she is. I know that breakthroughs in health and vitality are on our doorstep because of our devotion to creating the optimal nurturing environment for such a fragile being. Dr. Young puts it simply. Think of a fish in a fish bowl. The health of that fish is greatly determined by the cleanliness of the water it lives in. Now think of your body as the fish. Your body is 70% water. Bella's is much higher...closer to 90% water. We (our cells, organs, tissue) live in our own fishbowl. If you don't keep the water clean, the fish's health suffers, right? Same with the fluid in our body. Sounds logical. Sounds simplistic even. Yet, ignorance is BLISS. As I continue to drink acidic beverages daily (soda, coffee) and eat foods my body is not designed to digest (animal protein, sugar, yeast), I wonder why I am exhausted by 3 pm every day, I have chronic pain, and get recurrent headaches, injuries, and soreness.

Thinking of Bella's optimal health has made me think of my own in a new way, and as I learn more each day about nutrition, I am saddened a little by what I am choosing to give up, but yet inspired to finally honor my body as it is designed. I see a healthy family full of vitality and strength: physical, emotional, and spiritual strength. That's worth making some changes for. My affirmation is, " I am restoring the structural integrity of my body, mind, and spirit."

For example, last night, we switched to cloth diapers. WOW, THEY ROCK! They are so vastly superior to disposable...I can't even imagine Bella (or us) suffering one more day in those awful plastic nightmares. Not only are the cloth diapers 100% softer, and more comfortable, Bella's butt looks better today than it has since she popped outta her mommy! No more lathering aquafor all over diapers and bottom every diaper change. No more blisters on her thighs from velcro. No more ripping out inner elastic waistbands 10 times a day. No more cutting oragami shapes outta the velcro closures so they won't cut her legs any more. That stuff was L-A-M-E.

So, I am heartened by this first lifestyle change going so well. I look forward to more of that.

Other news...

Yesterday, I had to pick my first fight for Bella. Nothing like trying to get an appointment to see a referral. The referral was for a GI Doc, an integral part of a DEB patient. The customer service rep who was handling the scheduling tried to explain to me that the Doctor was booked through August, and I would have to see another GI Doc, and that they were all the same. Bella could see one next week. If they are all the same, why is Dr. Grant booked through August and the others available next week? I wouldn't have it. I simply told the gal, "NO. That's NOT how this is going to go. You are going to figure out a way for my daughter to see Dr. Grant. period. " "Well, I'll have to get my supervisor on the line." She quips. "Fine with me." That was 25 minutes into the call. Within 5 minutes, the supervisor understood the situation, said she would email the Doc and see what she could do. She called back today to say they moved their entire Monday schedule up so Bella could get in at the end of the day. Yeah, this Monday.

Pick your battles, folks, and never let ANYONE sitting in a call center tell you how it's gonna go.

So, Monday we go to the GI to check out Bella's reflux issues. Reflux comes on early and often for DEB kids, and she has been having a lot of symptoms, so no time to waste. She doesn't need another day of reflux damaging her esophagus causing any unnecessary scarring.

Still other news...

I got in touch with a woman locally who heads an EB support group who invited us to an EBMRF picnic in Malibu this Sunday! EBMRF is the west coast version of DEBRA, which is based in New York. It's a hike, but it's being thrown by David Arquette and Courtney Cox, so...pack the minivan! We haven't made up our mind yet. Malibu is a hike from Orange and we haven't set out on a trek away from home for that long yet. We'll see. I think it would be cool to plug in...but I'm the networking junkie in the family.

Oh yeah, Bella sat through her dressing change today AWAKE for just about the whole thing! Her foot IS SO CLOSE TO BEING CLOSED!!! Aw man...it's such a victory. Anyhow, her being able to chill out awake was a good sign that since she pretty much has no open wounds, the dressing changes are not as painful for her as they were, say, two weeks ago, or even last week. C'mon, Bella! Heal, baby, heal! Heal, baby, Heal!

Okay. Time to go pass out. Bella is out cold after being up both of the past two nights. I can handle one-all nighter okay, but back to back...I'm not the night owl I once was. This rock star is in retirement!

Best to you all. Thanks for the continued love and support. It is a bit overwhelming...but we LOVE it and welcome the overwhelm! Thank you for contributing to us so generously with your prayers, intentions, thoughts, emails, cards, food, errands, and donations. I learn of a new church EVERY DAY that has added Bella to their prayer list. Literally from coast to coast, people are praying for our Bella. We are so touched and inspired by this. It gives us the strength to stand in the face of DEB and continue to proclaim...say it with me...

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."

May the unending abundance that is God's love be with each of you this weekend.

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.

Glad Today Was Only A Day

Glad today was only a day.

Too fried mentally and physically to expand too much tonight.

New big blister on left thumb. Imagine you had a blister that went from the back of your fingernail to the base of your thumb and that it was as wide as your thumb and as high as the thickness of your thumb. All in one day. Fingers are tough because we have Bella's hands wrapped 24x7 and can't see new blisters forming until the next day's dressing changes. We remove yesterday's bandages with anticipation to see if wounds are getting better, and in the case of fingers, if dressings are staying on her tiny, wiggly, lubed up fingers.

Thus the game of EB, one step forward, one step back.

THe good is that DEBRA is flying a volunteer out to spend an entire day with us later this week. She is bringing tons of information, dressings, diapers, and wants to observe our dressing changes to offer advice....we get her ALL DAY for ... um ... free. This DEBRA group is pretty amazingly funded and organized to provide such personalized and in-depth attention.

The volunteer also wants us to get the Stanford Biopsy results by the time she arrives so she can counsel us on which form Bella has. So, focus your intentions and prayers that the test is done and we get the results tomorrow and that the results are delightful. We need a miracle. We are praying for the version of the disease that children grow out of. Thank you for focusing on this tonight/today.

Okay. need sleep. Bless you all.

Ready To Come Home?

Same bat time, same bat channel...11:21!

First off, thank you all for your love, thoughts, intentions, prayers, visits, and messages. They have transformed this journey into one of hope...from Tragedy to Triumph.

I really gushed last night...don't have quite the energy tonight. Today was so busy. We walked into the NICU and there were 5 staff members and 2 reps from the bandage company waiting for us. We're there 2 minutes before we're asked if we're ready for Bella to come home today. Before we can answer, we are told there will be no nurses visiting to assist with wound care till Monday.

...how about ...

NO WAY!?!?

She is still missing a large amount of skin on her feet and left knee. We're just not ready. We also need to come up with a car seat solution. Her car seat looks like it's made out of sandpaper. We haven't had time to figure out what clothes will work, and we need new bedding. 24 hours notice was just not enough to be prepared and not overwhelmed.

So...Monday is the day. It gives us 2 days to work with the attending nurse on perfecting wound care and have family and friends shop for necessities for home care.

Now, let me tell you about how prayer is driving this experience.

1) The reps from the dressing company sent us home with a week's worth of dressings for free.

2) That distributor isn't in our insurance network unfortunately. The in-network provider only carries 4 of the 6 products needed to dress Bella's wounds every day. Sooo, the case manager managed to convince CIGNA to change distributors so we don't have to order her supplies from 2 different companies. Insurance companies willing to serve their customers?

3) Bella's blisters on her face from yesterday...almost healed themselves OVERNIGHT. The same size blisters that formed in the first 2 days in her isolette are still healing. She is healing faster and faster from smaller and smaller blisters.

4) DEBRA ( national non-profit for EB patients and families ) has a dedicated EB nurse educator in Ohio who knows about Bella and is awaiting our call. DEBRA is sending us a welcome home basket full of supplies and resources!

5) I got my first referral for music therapy in the NICU today. A nurse came into our room during Bella's wound care to say a parent from the NICU pod where Bella started out called into the NICU this morning and asked for me to play for his daughter. I was happy to do so.

6) This may not be a prayer thing, but it was good. Bella's clinical nursing specialist, Beverly, said today that while this is only the 2nd EB baby she's seen in 8 YEARS, SHE APOLOGIZED for the slow learning curve of the nursing staff regarding Bella's care. It was really great for her to take responsibility for the reality that while this is a rare case, there were several things that could have been done to make Bella's care even better. She was a class act.

7) Lastly, I want you all to know about Daphne. She is a baby in the same pod (room of 9 beds) Bella was in. She was the most chronically agitated baby in the pod while we were in it. My heart went out to her. Her mom appears to be a young, single mom who we see waiting by herself at the end of each day for the city bus outside the hospital when we roll out in our comfy Toyota Sienna. Mom appears to only speak spanish, so I had never really connected with her, but I really wanted to try to calm Daphne while in there. Well, today, when I went in to play for Faith, my referral, Daphne was crying, clearly agitated, and mom was struggling to finish what looked like a diaper change. I decided today was the day, so I just slowly walked up to play, when I hear music coming from Daphne's crib! Mom had brought in a little wind up music device that played lullabies. Good for her, except it didn't appear to be helping. Right as I stopped playing so it would sound like chaos, the winder ran out and stopped. That was my cue. I started to improvise a gently lullaby about how much her mommy loved her and how everything was okay. Within about 3 minutes, Daphne was in mommy's arms, just staring peacefully at mommy. After 4 minutes, Daphne was asleep in mommy's arms.

Man, I was so grateful to finally get to connect with Daphne and her mom.

8) Oh, by the way...

...THERE WERE NO NEW BLISTERS ON BELLA TODAY! IT IS WORKING!!!!!!!! I can't even tell you the confidence in this miracle unfolding as I held and bottle fed Bella this afternoon. She felt stronger, bigger, healthier. We joked together (well, I joked with her as she slept while she was supposed to be eating). Things felt, well, normal.

9) Oh, p.p.s. Tomorrow night (Saturday) is Ali's POTTY PARTY! She is fully potty trained through the night with a 9 day dry streak currently intact....and...tonight is her first night in big girl underpants! YEAHHHHH!!!!!! You know what that means?

We'll have 2 WHOLE DAYS of diaper free living before diaper wearer 2.0 arrives on Monday! Cheers to another 3 years of diapers....but not till Monday, baby! WOOOHOOOOO!!!!!

Good times, good times.

Really, there is no bad today. It is really alllllllll good.

The request:

Please create this vision with me again. One day, Bella will be able to say, "Yeah, I had this rare skin condition when I was born, but when they brought me home from the hospital, it just went away."

Also, please pray for Bella's neighbors: Daphne, Faith, Elizabeth, and Jordan. Some of them will be in the NICU for many many weeks to come. Thank you for extending your love and generosity to them!

Oh, and don't forget go to www.myspace.com/timringgold to purchase "Bella's Song" at the bottom of the page.

Thank you all. We love you. Good night.