9 months in, 9 months out!

Well, Bella turned 9 months old last week. Sorry for the lapse in updates. So much to catch you up on.

Last week the entire family was flown to Phoenix, AZ to attend the Molnlycke Healthcare National Sales Meeting. Molnlycke produces all of the dressings (except rolled gauze) that we use on Bella. When our Physical Therapist Betty had trouble trying to dress Bella's wounds in the NICU, she called Tara Keebaugh, the regional sales manager. I think Tara and the local distributor rep, Jennifer, were out waiting for us in Bella's room the next day. Might have been 2 days, but I seem to remember it being FAST. Anyhow, they were awesome; they really gave Betty some great advice on what products they had that would do a better job than the McGuyver- job Betty was doing with what she had. Tara and Jennifer were really helpful and supportive, and we were left delighted with that experience.

Fast forward to last month where I got a voice message out of nowhere from Tara explaining that Bella had been selected essentially as "Patient of the Year." Each year at their national sales meeting, they have a patient and their family come to the event and share their story so the sales force can see who really benefits from their products, since the sales people don't usually interact directly with patients. This year, Bella was selected to be that patient.

So Wednesday, we headed to the airport. They got a seat for all four of us on the plane, and had an SUV with driver waiting for us at the baggage claim! We were expecting to go to the Phoenix Airport Marriott, and in fact had family waiting there for us to have lunch when the Alan, the driver, says, "So, have you been to Desert Ridge before?" Desert Ridge? That's a different Marriott altogether! It's a waaaay nicer Marriott as well! Pretty cool except for the fact we had family meeting us at the other hotel! So, 15 minutes of scrambling to get various family members on the phone later, we're all on our way to the J.W. Marriott at Desert Ridge. WEEEEEE!

The property, accommodations, and service were all world class. We're waiting on copyright clearance for the video we made of the event. Even though I used my friend's music and cited him and how to get the CD in the video, youtube won't publish it till I submit a written letter from my friend giving me permission to use his music (no joke). A little draconian, but I get the idea. Good thing you don't have to do that with written intellectual property. Can you imagine?

Molnlycke also shot professional video and photography of the event and be sure that as soon as we get it, we'll share it!

They gave us 30 minutes to share our story. Tara began, and introduced Betty, and Betty shared for a couple of minutes. Then she introduced us to a standing ovation. There were about 100 people in the meeting, mostly sales, some marketing, and some admin. Ang started out with a killer slide she made about 10 things you may not know about EB. Most of the end users of Molnlycke products are burn patients, so the group only had limited exposure to EB. GOAL #1 EDUCATE THEM ABOUT EB. CHECK!

Then, we showed them the "Bella's Beginnings, extended version" video and explained the impact of Bella's song and how it assisted in every hospitalization to calm her down during painful procedures. GOAL #2 EDUCATE THEM ABOUT MUSIC THERAPY. CHECK!

Then, we shared about Bella's book, and everyone in the conference left with an egg shaker that had the butterfly from the cover of Bella's book, and www.bellasblessings.com on it. GOAL #3 EDUCATE THEM ABOUT BELLA'S BOOK. CHECK!

Finally, because of my training not only in music therapy, but in using music in corporate and employee wellness, I thought since we had so much time, we'd give them a gift and do a little group music making for team building, and a brief visualization exercise. At one point, I had the both the U.S. President and the worldwide CEO of Molnlycke on stage playing a heartbeat each on a frame drum I gave them. I distinguished them as "the hearbeat of the organization." While they laid down a steady heartbeat, I had one half of the conference shouting "DELIVER" while shaking their egg shakers up on their feat, and the other half responding, "THE DIFFERENCE!" while they were up on their feet shaking their shakers as well. That was the theme of the meeting and it was posted EVERYWHERE. I had the two sides competing for who could play and shout the loudest...it was awesome. Then, we closed with a brief visualization exercise to really bring home the point that they really have no idea how many people's lives they make better every day in their job, even though their job isn't to necessarily treat patients directly. After there wan't a dry eye in the house, the Prez and CEO presented us one of those "Publisher's Clearinghouse" cardboard checks with Anabella's name and a generous donation on it. We were back home Thursday evening.



All of that was amazing, but do you wanna know what the REAL bonus of the trip was? Getting to spend all day Wednesday and Wednesday night with my brother Paul, his wife Heike, their 9 month old daughter Liesel, and my mom Sheila and step-dad Ralph. We had lunch and dinner together Wednesday, and spent the rest of the day either relaxing together in our suite or shopping. I even got to babysit all 3 girls in the afternoon! It was a true celebration of family, not just for our little family at the conference, but for a portion of our larger family. After the conference, I took Ali on the lazy river ride at the hotel for some "just Ali" time as well. To prove to her my commitment to swim with her, she and I wore our swim suits under our nice clothes during the conference so we could get to swimming right away afterward!

Whew! On top of all that, on Thursday we launched 3 new pages on the blog here in case you haven't seen them, as well as www.bellasblessings.com, which Rodger, my stepfather-in-law, and I made ourselves from scratch, and....

...got our first copies of Bella's Blessings: a Humble Story of Providence delivered to our home! Talk about a labor of love. The book was 9 months in the making even though the story inside only covers the first three. I thought I'd have a book in hand by October 1st EASILY. HAHAHAHA. Writing, producing, and publishing your own book takes waaaay more time and energy than I realized! It was a great learning experience, though, and I'm really proud of it.

We are REALLY EXCITED to announce our first partner organization: Pioneering Unique Cures for Kids! (PUCK) They are working with U of M helping to fund the EB trial as well as other programs there. Up to 50% of the proceeds from March book sales will go to PUCK, and we are just so excited to get to contribute to an organization that is supporting Bella's BMT this summer!



In other news, Bella's 9 month check ups were yesterday. 90th percentile in height and weight. OFF THE CHARTS in head circumference. That part is actually a cause for alarm. Her growth chart for head size is pretty much vertical. She needs to get an ultrasound to check for Hydrocephalus because her head has been getting steadily bigger than the rest of her already gigantic body. Luckily, she doesn't seem to have any of the other symptoms associated with the condition, but our pediatrician likes to be cautious and that is a good strategy with Bella.

Her check up with her dermatologist was also yesterday, and when Dr. Metz heard her growth, she was so excited. She said she has NEVER had another RDEB baby grow so big despite her condition! When I told her about the BMT this summer and told her Ali was HLA identical (meaning the best possible donor out there for Bella), she looked at me, and with tears in her eyes, she said, "So the very etiology responsible for her condition will also be responsible for her cure!" It was a really tender moment, and to hear the clinician in the white lab coat get so emotional over Bella... well, Bella, you're just doing your thing: inspiring the world one person at a time.

We are so flattered, lucky, and blessed to be along for the ride.

Bella.

She rocks.

and she hasn't even spoken a word yet.



LET THIS BE A LESSON THAT HEALING PRECEDES AND TRANSCENDS LANGUAGE.

When someone you see or know is suffering, don't worry about having the right words to say. Just a smile, prolonged eye contact, and even a touch of the hand can do more than a snazzy quote.

With that, I thank you all for joining us on this amazing and wonder-full journey.

Thank You for Your Messages and Prayers

Hahaha...one minute off last night's post. Creatures of habit, OR WHAT??? :)

Hello all you beautiful people out there generous enough in your life to take the time to log in and read and follow and pray for us on our journey. You are the breath of life and strength keeping us moving through each day. Without you, this would all be going terribly different. Ang and I read each and every one of your posts at least once at day (once at night and if we have time, once in the morning). While we don't respond to them, please know that every one of you that has posted and visited (just seeing your name on the visitor list makes a difference!...but go ahead and post anyway! ;)) has been thanked by us. THANK YOU ALL.

Well, the day has arrived, and nearly gone. The biopsy was this morning. Armed with information for EBnurse.org, we strode into the NICU this morning with new confidence, clarity, and purpose. We were grateful to finally be pushed into reading about EB; that website is AMAZING. We learned so many useful tips that made a difference in Bella's care TODAY.

We actually told the staff a thing or two today! It was awesome because Dr. Metz was there to confirm what we were telling the staff. Here's the deal:

Dr. Metz felt Betty's wound care has been FANTASTIC and was impressed.

EB babies can deal with blisters in their mouth and still bottle feed.

Sooo....the big question was, "Was Bella averse to bottle feeding?" which the answer was, "No, she took it like a champ and was PISSED it was taken away and another tube stuck down her throat."

Sit down if your standing....

10 minutes later, Dr. Metz says to me in the nurses station, "They want to send [Bella] home tomorrow."

I just stared at her like a deer in headlights. Tomorrow?

Yeah, that's right, tomorrow, folks.

Now, it may be "as soon as" tomorrow, IF they can get the discharge planning complete by then, which anyone who knows hospitals knows is a daunting task to coordinate case managers home health, equipment, all within 24 hours. More than likely it will be early next week since the weekend will be a big waste of time since none of those people will be working.

BUT...

Bella is medically cleared to come home tomorrow.

She can feed orally on her own and wound care can be done at home. The risk of infection, believe it or not, is much lower at home than in an ICU...so they want her out of there for her own sake ASAP.

It gets better.

Because she is a medical marvel and everyone wants a pice of this story, the company that manufactures the wound care products Betty is using IS COMING TO THE HOSPITAL TOMORROW to find out more about what breakthroughs Betty caused and how to potentially re-engineer some of their existing products based on how she has modified them. They are bringing BOXES of supplies for her/our use.

But wait, there is more.

The PR team at CHOC got wind of this story a few days ago and has been trying to contact Ang and I about doing a story on Bella and her music, but GOD LOVE or social worker for keeping them at bay. today, she finally told us they would like to meet with us, and we agreed. The power of music therapy and prayer needs to be read about as often and by as many as possible.

Your prayers are being answered. I say it that way specifically because Ang and I are CLEAR that the power YOU all are generating GREATLY exceeds what we have been able to do on our own. We acknowledge and own that we have stood and loved and nurtured and prayed and played over our daughter to the best of our ability, and that first line of support has been vital and crucial to her progress, AND without YOU...our army of positivity, love, compassion, generosity, and support...we couldn't have been so strong ourselves being the parents we've always hoped we could be.

Thank you.

Thank you.

Thank you.

Now, to the bad...

One of the staff, bless her heart, didn't realize yesterday when she hastily taped the feeding tube BACK IN, that you cannot use adhesives of any kind on an EB baby. So today, as I held Bella, I watched from point blank range the nurse pull that tape off bella's cheek, along with a roughly one inch long by half inch wide chunk of her skin.

Man, that made us so mad. Mad at the nurse for making a knee-jerk reaction while we were at lunch to reinstitute that feeding tube. Mad at the staff for not having read enough on EB to have known not to use ANY adhesives. Mad at the system for giving us a new nurse every day, so that every day, it was her first time ever dealing with EB, so the collective growth curve was far lower than it could have been. And, mad at ourselves for not being brave enough to read up on EB sooner.

What can you do? I don't blame anyone for it. Her skin will heal as it is doing so well. This case is so rare, everyone is learning as they go, including us...but man, in the moment...grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr...

Bella's face today is covered in blisters from her rooting yesterday after getting a bottle, then getting it taken away for 24 hours. She was trying to eat her hands, suck her thumb, self soothe orally all night and her face llos the way it does today because of this trial and error method that could have been avoided if our dermatologist had seen our baby 7 DAYS AGO when she was first called.

Thanks for enduring this rant. I know that we "practice" medicine, heck, I "practice" music therapy. I know that this case is SUPER RARE...but knowing doesn't stop feeling.

So, the long and the sort of it is that her skin heals well, but blisters so easily that the slightest friction to her skin causes it to separate. She IS a miracle, you're right! AND, the miracle isn't finished manifesting.

The Request:

Bella's quality of life if her current level of severity persists will be debilitating. There are versions of EB that have "gone away" as children grow older. Here is the story I am envisioning, and I humbly request you do the same:

One day, years from now, Bella will say,"Yeah, when I was born, I had this rare skin condition, but somehow, it just went away when I came home from the hospital." She will speak of it with no conscious connection to her own words. It will be as if she is reciting an event from her history book.

However, this event will have left in its wake...faith strengthened in many all across the country, faith even restored in a few, and music, oh sweet healing music therapy for thousands of infants at CHOC over the years to come. Questions were already asked in meetings at CHOC this week as to why there is no music therapy in the NICU...they have a part time MT on the units...why not the NICU???

It all started with a song. Bella's song. Written by her mommy and daddy and recorded by her daddy in the midst of being totally sick. It was sung and played to her while in the womb for months, it resonated in the O.R. as she was delivered, and a tender, softer lullaby version floated through a NICU and helped heal the patients, their families, and the staff.

Oh, see the ripples in the pond you cause? YOUR PRAYERS gave strength for that third vital chapter to be written.

Hopefully, by the end of the day tomorrow, a new blogspot will be finished. My dear friend Jim Hornaday and his girlfriend Jody Gnant have been working hard on creating a public blog where you can go read about Bella, listen to her music, and if you feel like it, contributing to her care by downloading her song as well as a couple of others that are appropriate.

The site is www.careforanabella.com

you can also go to www.myspace.com/timringgold and hear and purchase "Bella's Song" there as well.

During the biopsy today, Bella started to have a meltdown. Before the third lyric of her song was out of my mouth, ( I was playing my guitar for her during the procedure), she stopped crying and looked up toward my direction of the room. She knows her song, and I think she likes it.

Finally, I just say publicly THANK YOU to my amazing wife Angelique and my beautiful daughter Alessandra. First and foremost, they the angels that keep me afloat each day. Thank you all for reading all of these words. I hope they inspire you as much as they do me.

Talk to you tomorrow.

So Much for Trying to Get to Bed Early...

So much for trying to get to bed early...

First off, Happy Birthday, Zoe! Our close friends' daughter (and one of Ali's bestest friends) turns 4 today! YAY!

We're still up because we are preparing for tomorrow morning. Tomorrow morning, we FINALLY meet the Pediatric Dermatologist, Dr. Brandie Metz from UCI Medical Center nearby. She is consulting with everyone at CHOC tomorrow morning as well as doing the very specific test to confirm diagnosis and determine subtype. There are staff literally lining up to pepper Dr. Metz with questions regarding Bella's care. The Director of Nursing, Linda Glenn, told me today that maybe one patient A YEAR comes through CHOC with this diagnosis...

...what diagnosis do you ask?

Well, we have been witholding this information to save you all from reading unnecessary information on the web about a very complex and rare disorder. Some of you (you know who you are) went out on the web anyway...I can see that it is very tempting, but I implore you to resist the temptation to try to peg this one.

Here's what we know:

Bella's symptoms present like Epidermolysis Bullosa, or EB. There are 4 types of EB, with multiple subtypes. Each subtype can vary in severity widely. It takes this very specific biopsy tomorrow to determine the type and subtype. EB affects 1 in 50,000. The biopsy will be sent to Stanford University (literally the nearest facility that can read this type of test) and we go from there.

For example, Bella presents with symptoms that both support AND confound a diagnosis of 2 of the 4 types. Even within one of the types, she presents like two subtypes...

So, more will be revealed tomorrow. Now, back to today's Summary:

The Good:

We walked into Bella's room and there was no feeding tube in her nose!

Mommy and Daddy both got to bottle feed Bella this morning!

Wound care looked GREAT after yesterday's breakthrough. Great job, Betty!

Bella was awake and alert during the day now that she is off morphine!

Daddy met with the Director of Nursing who thanked me for transforming the vibe in her NICU through the music I played in there since we got there last Wednesday. I asked her permission to continue to play in the main pod that connects three 8-bed units while Bella recovers in her new private room. She couldn't believe it. She gave me the green light and sent out a communique to all staff as a heads up that I've got her blessing.

When Daddy returned to the main pod, I started playing for a couple and their preemie. After talking to each other for a little while, we shared about how powerful prayer is. When I confided that I am conflicted about asking God for a miracle, they came to Bella's room and prayed over her and...prayed for a miracle. How do you ask for God's Will and a miracle at the same time? They seemed to have that figured out and shared with us.

The Bad:

Because EB is so rare, most of the tx team has never treated a patient with it. We are stumbling through the treatment a little. They used a special bottle on Bella, but didn't know exactly how to use it. The development team was not too happy about that.

After the bottle feeds today, Bella developed new blisters in her mouth and was really agitated for the rest of the day. Her feeding tube was then put back in. No more bottles.

Bella didn't get enough pain relief before her bath/wound care. She screamed and cried all the way through. That sucked.

The request:

There is a subtype of EB where patients claim to "grow out of it" by the time they reach grade school. Through the power of prayer, could she perhaps grow out of it sooner? Her skin is sooo sensitive. We really need a miracle. Please create in your thoughts, prayers, intentions, and meditation that her skin heals and stays healed forever, that no new blisters appear, and that this condition clears up for good.

God heals so many so often in so many ways and so many places. We humbly ask that this child is granted this same grace beginning today.

Thank you to all who share in this sacred moment.

We are blessed by your love and generosity.

Good night, be well, we'll talk to you tomorrow.