June 24: Day -8

Today's entertainment provided by... Mickey Mouse!

I have to laugh. There is a really big day-at-a-glance calendar in our room. It says TODAY IS... then shows the number REALLY BIG. So I am looking at a giant TODAY IS 24, then under that reads Thursday. Under that reads June, 2010. Why am I describing this to you? When I first walked into the room, I thought, what good does that do Bella? She can't read! Now, just three short days into this journey, I realize, IT'S FOR ME!

Time is a paper construct that we all relate to like concrete.

Minutes of the hour, hours in the day, days of the week, they all just fizzle away on this side of the world. Yet, on the outside, I rush through traffic to catch every green light thinking, "Every second counts." I am the architect of my own anxiety. Aren't we all?

Today was a good day! Mommy and Ali went to the annual "Turtle Derby" outside in the plaza. This is a giant fundraiser the hospital does each year where they race... turtles. It's quite possible the funniest thing I've ever seen. Picture this: A blue tarp on the ground that spreads 12 feet long by 12 feet wide. On this tarp is painted a giant circle, like a wrestling ring about 10 feet in diameter. In the center, there is an inner ring maybe 3 feet in diameter. Now picture a 12" tall cylinder that sits atop the inner ring. The turtles are placed inside this holding pen, then, when the announcer starts "the race", the pen is lifted off and the turtles take off in all different directions at once. The first turtle to cross the outer ring in its entirety is the winner. All the departments and nursing units raise money to put a turtle in a heat representing them. It is pure comedy. Then, add dancing, clowns, kids, food, and you have a good time. They even televise the event so we could watch it up in our room.

Needless to say, what's the first thing I see when I turn on the TV? Ali dancing with a clown. Awesome.

Then, Ali went off on an all-day play date with my friends the Spectors. They are sooo great. Logan is my childhood friend from CT who became a researcher of childhood cancer here at U of M. He knows Dr.s Tolar and Wagner. Anyhow, they have just opened their family up to us so generously, we are so grateful. Ali went to the pool, then got to go to soccer practice with the Owen and Ellery! That made daddy very happy!

Ang and I did our afternoon dressing changes with Bella watching an endless loop of Mickey Mouse Clubhouse. The great thing about kids DVD's is that they feature a "Loop Play" or "Repeat Play" feature where it just starts over, and over, and over... and over. This is good for dressing changes because Bella doesn't care! She was sooo peaceful during bandages today. Not a peep. All without any pain meds as well. It is only day 2 of busulfan, so she is not experiencing any side effects from the chemotherapy yet. I tell you, when we do her bandages, there is a serenity that comes upon her. It often leaves as soon as we are done, too. She will either become more animated (or angry!), but it's usually after, not during. I tell you, it IS as if she knows this is all central to her plan. I had the experience today while doing her dressings of being totally and completely present in the moment. There was no world "out there." There was no "Thursday," no "June". Just me, Ang, and Bella, together. This is why I want to thank Erin, Logan's wife, again, because I knew Ali was happy and safe. It allowed me to just melt into the moment. Bandage changes used to be stressful. Now they are sublime moments of care, compassion, and tenderness. I only wish Ali was bigger and could participate in it more, but alas, it is all simply perfect as imperfect as it is.

Bella ordering dinner for daddy...

We headed off the night-time anxiety attack by giving Bella some happy meds (ativan) with her nighttime bottle. This kept her out long enough to slip into a deeeeeep sleep. We also did all her meds in the bottle, and did vitals before the bottle so once she fell asleep there would be no poking or prodding. We get better every day.

Before the meds...

... and after!

Now it is time for sleep. The moment by moment management of Bella's tentacles has left my brain quite tired. She has a lot of lines coming out of her body with pointy valves and connectors. Some of them really tore up her back and aggravated her belly during last night's fits, so great care is given to make sure she avoids unnecessary contact with them. Having Epidermolysis Bullosa and a belly full of sharp valves, lines, and tubes does not make for a good combination!

Thank you again for your comments. You give us so much strength; I hope my words of gratitude somehow capture a glimpse of how GOOD your comments make me feel when they hit my phone throughout the day. Ang and I call each other throughout the day and talk excitedly about all the different comments. We feel so... cared for. Thank you again, and good night.

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!

Ripples in the Pond...

Ripples in the Pond...

...more on that later.

First the bad this time...

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

okay okay, now onto the good.

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

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

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

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

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

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

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

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

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

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

THAT SAME MORNING...

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

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

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

What ripples are you making?

The Five Percent Collective Has Been Born

Happy Monday! Since most of you will read this Monday morning...to those night owls on the West coast...go to bed already! (Listen to me...I should talk)

Well, I shouldn't have made that joke about once, twice, thrice a night. Thursday night, Bella let all Hell break loose and mommy and daddy pretty much didn't sleep a wink. During that night, Bella showed us a new scream that made our blood freeze. It happened on several occasions. She would be lying on the bed, legs and arms out, seemingly relaxed, when suddenly out of nowhere, her eyes would get big and she'd start screaming like someone was setting her feet on fire. It would persist for probably only 5-10 seconds, but it felt like eternity. The scream was louder and more violent than ANYTHING she has said or done to date. Ouch. I called in sick to work to stay home and 1) rest myself, and 2) monitor the situation. We did wound care that afternoon and her left foot was just awful. the wound spread further out in all directions and now the entire top, side, and part of bottom of the foot is a blister. This poor foot has had maybe 2 days since birth where it wasn't injured.

On the bright side, I'm learning how to wrap her hands and fingers with 1" gauze and a cotton ball in the palm in such a way that is preventing new blisters, and keeping her hands in a neutral position, so there's a victory.

Ali had a BLAST at my friend Vicki's house for the Chapman University Music Therapy reunion yesterday. That was a good thing as well.

The best thing was returning to church this morning for the first time since this journey began. Our church is our extended family. They have loved us and cared for us since we first arrived in CA 5 years ago. Not a day goes by that we are not gifted in some way by someone in the congregation. It was so nice to be able to bring Bella to church, have Ali resume Sunday school, and personally say, "Thank you." I also got to sing "Bella's Song" during Offertory and that was just great. When the chorus repeats at the end of the song, I spontaneously told the congregation to sing along, and they did! Even though it was their first time (for many) hearing it, they had internalized it and I could here their voices floating through the Sanctuary mixing with mine. What a wonderful moment and perfect symbol of the interlacing of love, passion, and community we share at Harbor Christian Church. God is Good...ALL THE TIME!

Lastly, a concerned member of the congregation sat us down with our pastor to make sure we were doing everything we could for Bella with respect to pursuing research studies and clinical trials, as well as couple's support groups. She mentioned that 95% of marriages end up in divorce when there is a child with special needs. I knew that in the Autism world the number was 80%, but I didn't know it was higher overall. I was immediately reminded of the conversation that young man Sean Stephenson had with me early on. He is a clinical Psychologist, and he said to me on the phone, "Tim, Bella's situation is going to do one of two things to your marriage. It's gonna tear it apart, or make it stronger. You have to decide which one it's gonna be RIGHT NOW." Well, I did, and we did. We choose Bella, We choose her EB, and we choose our marriage, exactly as it is.

We had a tender conversation over dinner discussing this, and out of the conversation, we came up with a new concept. It's called simply, 5 PERCENT. It is a support group of parents of children with special needs who are committed to being in the 5 % of the statistic. The way we have always seen our marriage and life in general is you can create it or react to it. Sometimes, it takes a little of both, but now that Bella is here exactly the way she is, we get to create a new level of power and support for others just like us, and for this, we are truly grateful and blessed to be able to be of service.

We are so grateful for the show of concern. Our friend was afraid of overstepping their boundaries, but the context was love and genuine care, not judgment or fear. In that spirit, we say again, "Thank you" for having the courage to step up and share! Thanks to that conversation, the 5 PERCENT Collective has been born.

So, if you or anyone you know has a child or children with special needs, and wants to be a part of a group that affirms their role as creator and not victim, please tell them about us. We want to hear from them. It's easy to feel the victim when something like this happens, but that leaves us with NO POWER, NO SAY, NO FREEDOM to create the beautiful tomorrow that is just around the corner.

Now, since tomorrow is creeping around the corner faster and faster every minute I type, I now bid you fare well. May God bless your day, giving you momentum to flow effortlessly through the week. May He open your awareness to the blessings He is surrounding you with RIGHT NOW, so that all you see this week, starting RIGHT NOW, is bliss. Wherever you are reading this, I want you to SEE one of those blessings and post it here as a comment. Let us all know! THIS is what should be news, folks, BLESSINGS, NOT TRAGEDIES. Let us make our own news headlines on this page today. Let us remind each other that there is good in the world everywhere. Now, tell us what YOU see!

Bless you all,

Good night.

Bella's Latest Milestones

Hi all!

Seems like I'm not getting around to this site as much recently. I think there are two reasons for that.

1) New developments on Bella's condition aren't emerging with the same speed as early on. We are in a routine of care that involves dressing changes every other day. We almost made it through yesterday's dressing without having to break out the needle (to pop a new blister), but alas, we found a big one on her left knee when we undressed the final appendage of the session. So, pretty much every dressing change follows the same sequence: right hand, right elbow, right leg - switch Bella around on table - left hand, left elbow, left leg. Each time, there usually is at least one new or recurrent blister, and the other existing blisters take 1-4 weeks each to heal, depending on severity. It still takes 30 minutes of prep and 1 hour of treatment. It's not getting any faster, but it's getting easier. The fingers are really Bella's biggest problem area. They just can't seem to withstand any impact with any objects without BALLOONING. We have to wrap 1-3 fingers on each hand almost all the time due to some recurrent blister blowing back up. That's a drag. The good news is that Bella's left foot will be totally closed again by tomorrow when we redress it. It has been healing fabulously. Take the good with the bad seems to be the name of the game.

(BTW - the Care Pages photo gallery is having issues right now or I'd post new pics)

2) I am working and just don't have much free time to update...(smoke screen to cover that....)

...really, I was fearing that you all would eventually wear out from the constant writings and would just go away. So, I beat you to the punch by pulling away first. Call it a trigger-finger defense mechanism...if I leave first, you can't hurt me! Yep...I admit freely that I made it all about me and not Bella. No biggie. Just me being a human.

Just typing this offers me the gift of reflection; I hadn't seen that this is what I was doing till I started typing this! Ah...insights. They never get old.

In other news, Bella's 2 month check up was yesterday. Can't believe it's only been 2 months. Feels A LOT LONGER THAN THAT. 10 pounds 6 ounces & 22 inches. 40th percentile in height and weight, 70th percentile in head circumference. Doc thinks she looks and sounds good. Music to our ears.

Tonight, Bella is sleeping with Ali in their room for the first time! Ali is SO excited! Ali started sleeping through the night the night after her 2 month check up so....[fingers crossed]

We took the family to Disneyland on Friday night! We went for a meal and a 2 rides for Ali in Fantasyland. It was a success! Ang bought an AWESOME new double stroller (1 up front & 1 behind) and we took turns going on rides with Ali while the other chilled out with Bella. Bella loved the lights! It felt great to do something 'normal' as a family. That is going to be key in all this I can see.

Ali started Horseback riding lessons on Saturday. She left crying because they didn't give us an itinerary for the 4 week program till we arrived on week one, and in session one, the kids learn to clean and bridle the horse, so Ali was really sad since she thought she was going there to RIDE a horse. Now that we have the itinerary, we can prep her accordingly. Good job, City of Orange. Maybe send out the itinerary in advance? I'll pay an extra buck to avoid having my kid crying after day one.

Gift certificates and food continue to flow into our home from near and far. We are so blessed by the abundance of love and support we ongoingly receive. Thank you all for all of it. It is overwhelming, and it is a great feeling.

Last but not least, BIG THANKS to grandma (Ang's mom - my mom goes by Nanny) for agreeing to:

1) come and clean our house once a week and
2) watch the kids for the whole weekend in Nov. so we can get away to Disneyland for our anniversary and be kids ourselves!

Ang's mom came and cleaned today while I was at work, and when I walked in the door...it was magical. It felt so...clean and orderly...I could feel it as soon as I walked in, even before I realized what had happened. Then, I went into the bathroom and as I was washing my hands, I could see my reflection in the faucet...that really gave it away 'cuz I NEVER clean the faucet that well! Having a clean house makes me feel so much more at peace, it's amazing. Thanks again grandma for providing that peace! We love you!

Okay, good night. When the Care Pages photo gallery is working again, I'll post new pics and send a quick update. Thank you all again for taking the time to read this, send prayers, cards, gift certificates, positive thoughts, energy, vibes, wishes, et cetera. It all matters, and it all contributes to all of us and we are eternally grateful.

God bless you all.

How Good God Is

First off, I forgot to share about another moment of Providence.

Monday morning, as Angelique opened the blinds to the back patio, we noticed our rose bushes were in some serious need of clipping. Normally, that falls under a mildly annoying, but necessary chore, but when we looked out at the patio...it just seemed like a jungle. We are regaining our functionality around the house - albeit slowly - but this one still eluded us. She said, "The roses really need trimming. [sigh]." To which I said, "Maybe we can have someone trim them for us!" I was thinking of all the wonderful people that live near us that have been looking for ways to help out. However, there was also this small feeling of shame - like I should be able to handle such a basic task. Angelique replied with, "Okay, WHO?" My first thought went to my minister Dennis, who helped me with my roses before Ali was born; showing me how to trim them and how to put manure on the soil in the winter. Then I thought, "How am I gonna get Dennis to come up here to do that?" He lives and works 30 minutes away and again, I felt ashamed to call and ask. My shoulders slumped, and I answered back to Ang, "I dunno." and that was that.

Or so I thought.

Later that morning, who calls? Dennis.

He says he's bringing food to the house from folks from church. Later that afternoon, he arrives with his wife Linda, and Linda immediately tends to Angelique and Bella as Dennis walks straight to the patio door. He says, "Those roses need trimming. Want me to trim them for you?" Then he says, "I already trimmed mine and my neighbor's this morning!"

As I get Bella's wound care supplies ready for her dressing change, Dennis goes to work on the roses. Linda remarked to Angelique while watching him out there," Oh, he's in his element now!"

God doesn't just send someone over who knows roses, but DELIGHTS in caring for them...and not just his own, but those around him he cares for.

That's how good God is! All the time!

Thank you God. Thank you Dennis.

Okay, onto today...

Our home health nurse, Kelly, visited today during dressing change for Bella's first weekly check-up. It is really great having someone come to the house every week to assess her condition. We know that NOTHING will EVER get out of hand with such vigilant care and oversight.

Anyhow, it's been a week since Kelly has seen Bella. She couldn't believe her eyes. She said she thought she was looking at a different baby; Bella had improved that much since she last saw her. She couldn't believe how good her skin looked and how fast her wounds had healed. She was also thrilled to hear that Bella was a big fat 9 pounds at the Doctor's office yesterday!

It was so great to hear, because while we know she's getting a little better every day, we see her every day, so to have that someone who has tracked her progress step away and come back...well it's like when your aunt or uncle says, "I can't believe how much you've grown!" Remember that?

So, 3 for 3 with recent medical assessments. There are NO blisters in Bella's mouth anymore, and only one small one on her lip yesterday which mostly cleared up today. Every wound on her body is now healing well, and that left foot...the tough one...is almost closed! God willing, by this time next week, there will be NO OPEN WOUNDS ON OUR DAUGHTER!!! That will be a first since she was born exactly 4 weeks ago today. What a journey those 4 weeks have been. They feel like 4 months to me. Bella just keeps getting better, and better, and better. You know what? One day, Bella's gonna 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."

Awesome.

You know what else? You were there. You were there through it all. You saw it all unfold, and you willed/prayed/CAUSED it all to go this way. Our communion of intent has been seen and heard by God and the Universe, and they have listened! I use that language to honor all the belief systems at work here. No matter what language we use, I believe that we have summoned a power greater than our own to our aid in this time of crisis. Call it what you want, but make sure you THANK IT because IT WORKED.

Love and Gratitude.

The two most beautiful states to be in. Our love and gratitude extends to you all for your inspirational support of our family. You are noticed, you are loved, and you are appreciated.

Blessings to all of you and good night.

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.

Chart the Course

At least, I think it's the 17th. I'm pretty sure it's Wednesday right now also.

We found out yesterday part of the biopsy results. "There was an absence of collagen VII in the immunomapping..." Dr. Metz rambled on. "Collagen VII connects the dermis to the epidermis," she went on to say. "This indicates that Bella has the Dystrophic form of EB."

My heart just dropped into my gut and my arms got cold.

"They weren't able to determine subtype do to some [blah blah blah] so they are redoing the second test and I'll let you know what it is either when I see you next Tuesday or before."

Thanks.

So, now the hunt for the next clinical trial of bone marrow stem cells takes place. In the mean time, there is another piece of the story that unfolded so fast, that I still am unsure it even happened.

As I sat in the dentist office two days ago awaiting an emergency crown, I called my friend Joe Polish, a close friend and marketing guru, to vent a little. Joe realized he was in over his head, that he had never been through anything like this, so he said, "I'm gonna put you in touch with someone who can better talk to you right now. His name is Sean Stephenson. I interviewed him recently and we've become great friends. Sean has a rare bone disease that left him with 200 fractures by the time he was 18. He's 3 feet tall. He's now a motivational speaker and Psychologist. Can you hold? I'll try to 3-way him in on the call."

As the nurse stands in the doorway waiting for me, I am introduced to Sean by Joe during taping of an A&E special they are doing on him right now. Sean gives me his cell number and says, "Any friend of Joe's is a friend of mine, and if there's anything I can do to bring peace, I will."

3 hours later, I come home from the dentist and hunker down for another long mostly sleepless night with a colicky baby wrapped in bandages.

The next morning (yesterday), I get a text from Joe "Did you call Sean?" I hadn't. It's too tough to make a single phone call right now at night. So, I call Sean on the way home from dropping Ali off at daycare.

We spend the next 45 minutes in an extraordinary conversation about what is at stake, who to BE in the face of this, and what there is to do. Sean says, "Don't listen to the Doctors, I was supposed to only live 24 hours." He follows with, "The only prognosis I listen to is the one I like!!" At this point, I still don't even know Sean's last name, when Joe said it, it went right by. I just had a hand scribbled name "Sean" and a phone number to call. Sean tells me that he wants to put me in touch with his Doctor, a microbiologist by the name of Robert Young. Sean started seeing Dr. Young about 5 years ago, and he hasn't broken a bone since. Not bad for someone who broke over 200 during the first 18 years of life. Sean said he'd let me go so he could call Dr. Young for me. A minute later, (10:04 to be exact) Sean calls back and says, "Dr. young is in London right now, but he said if you call him at this number in exactly 30 minutes, he will take your call."

It was during that 30 minute wait that Dr. Metz called me with the bad news. Without getting dramatic about it, we were hoping maybe Bella had the simplex version of EB which should could most likely grow out of. If it turns out to be Recessive Dystrophic EB (RDEB), it is fatal with subjects dying from malnutrition due to the erosion of the esophagus, infection from open wounds and/or resistance to antibiotics, or an aggressive skin cancer that usually comes in during adolescence. Most RDEB kids to live to adulthood.

So, at 10:34, I call the number and a man picks up the phone. It's Dr. Young. I explain who I am and he asks me to tell him what's going on with my daughter. Dr. Young is clearly a renegade. Within the first two sentences, he says, "Don't listen to the doctors. They don't have a clue. Here's what you need to do, you need to strengthen your daughter's blood. You strengthen her blood you strengthen her skin. Mom needs lots of green juices and get off sugar. Sugar is poison."

He then goes on to give me specific sprays he produces that he says will help Bella's mouth and skin be more blister resistant. He would like to see her blood tests results and any panels that have been done.

10:48. What just happened?

Other news:

Yesterday Ang and I were faced with doing Bella's wound care all by ourselves. Bella was awake and crabby, and we just didn't know how we were going to pull it off, but we were literally running out of time before we had to go pick up Ali so we just went for it. Well, all I can say is that Bella is freakishly strong, and not just muscularly, but constitutionally. She was a trooper. I also want to publicly thank the angel that was in the room with us. I don't who it was, but Ang and I were not alone, and Bella was somehow calm and soothed the whole time. (She went right back to screaming her head off 5 minutes later). At the end of the procedure, I felt closer to Angelique than ever before.

Total time of procedure? 50 minutes.

So, in all this there is ups and downs, Bella sleeps all morning while we run around trying to keep the house/ laundry / bills / paperwork / research / pumping / feeding up to speed, then turns at 8 pm into the most irritated, upset little girl who can't be put down for more than 5 minutes till about 4 am.

We know of the clinical trials at U of M and Stanford. There is also one at Rady's in San Diego where I interned and I am looking into that today. Now that we know the main subtype of EB, we can navigate what options there are. Really, until these bone marrow stem cell transplants occurred, all there was to do is bandage and love your kid and keep 'em as comfortable as possible for however long God intended them to be here. Now, with this new breakthrough, there is hope for a tomorrow beyond unending discomfort.

NOW, STANDING IN THE FACE OF ALL THAT, I SAY WILL YOU PRAY WITH ME?

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

The body IS a miracle. It does miraculous things every day. It defies "the experts" every day. God has the power to produce all the collagen VII God wants. It is to be His will. Sean told me yesterday, "Pray for a miracle. You HAVE TO CHART A COURSE. God may come and adjust the winds on you, but you HAVE to at least CHART the course."

Thank you all for helping my family "CHART THE COURSE."

Blessings.

The New Normal

Is that a smile in there?

There were a lot of prayers said for Bella this morning around the country at various churches and congregations. We could tell, because today was like no other day in this journey for us. It felt...normal.

It was the first day since Bella's birthday that we all started and ended the day under one roof as a family.

It was the first day Bella got to go to the park.

Thanks to our Pastor Dennis and fellow congregant Mimi coming over to deliver flowers from our church, we cleaned and straightened and things look almost back to...normal.

In grief healing, we talk about "the new normal." It will never be as it was, but there is a new stability available from which to reach out and take life by the reigns again. We saw a glimpse of that "new normal" today, and we are grateful TO ALL OF YOU who have held that vision in your hearts and minds these recent days and weeks.

Thank you.

Now to the good and bad of the day:

The Good:

Dressing change at just about an hour again. Ang and I have now worked out who does what and it is running very smoothly. Bless our next door neighbor Becky for stepping up and supporting us the past 3 days while home health care drops the ball.

Bella spent all morning awake and alert making eye contact, and visually tracking (at 6-12 inches), and appeared, like a normal, happy baby.

We stopped giving Bella the multivitamin drops they sent us home with. Passing gas and poop all morning without any pain at last! She's on breast milk+formula already, she's much happier now.

We walked to our neighborhood park today as a family, the way we thought we would all along. There were many many days where we thought even today was out of reach.

The Bad:

Bella is healing well in many places, but her left index and middle finger, shin, and ankle are all having trouble healing. We realized Bella kicks her left shin - more like rakes it - with her right foot, so she's beating herself up. The skin affected when I accidentally pulled her boot off looks like it has died and is going to slough off now. The fingers are tough because it is difficult to wrap them in such a way that keeps them covered and moist enough to break down all of the mangled dead skin on top from the giant blisters that formed in her isolette. She has to wear gloves on both hands now as she has knocked the skin of her lips more than once just today. Because of her GI pain, she has developed blisters on the ends of her fingers from squeezing her hands so tightly.

Ali spent so much time with Grandma recently that she has forgotten how to do what she's told! LOL. You can SEE the shock on her face when she asks mommy or daddy for something and they say no. It's mostly pretty funny and only occasionally annoying. Wouldn't have it any other way, though, grandma has been a LIFE SAVER over these past 3 weeks. We love you grandma!

The Request:

Even with all the success, blessings, and miracles around, it's gonna be a long time before some of her wounds heal. Being in charge of that job is both empowering, frustrating, and scary at the same time. Wound care / daily dressing changes is the high point of anxiety for the parents and pain for the child. We have to psych ourselves up for the task every day. Please pray that Bella's wounds heal fast and permanently, please pray for continued strength for mommy and daddy as struggle each day to recover and reorganize.

Hold with me the vision that says, "One day, Bella will look back on this and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."

Good night and God Bless each and every one of you for your love, generosity, and support.

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!

Update 0601109 "27:41"

I am inventing new time with these late night posts.

Good news. NO emergencies today. Wound care went very well. I think we got it down to 90 minutes today with almost no help from the nurse. Actually, she only helps with extra hands getting something we forgot or soothing Ali with a pacifier laced with sweeties. We found a new, better place to do it daily with a plan of how to integrate dressing changes into our family's daily routine. Eventually, once Ang is back working, we'll put Ali to bed in the evening, then change Bella's dressings and put her to bed. Just having that kind of rather simple plan gives us the vision that even while Bella deals with this unusual disease, we can somehow integrate her needs into a relatively normal home.

Btw, we just got 3 hours of sleep for the first time in 2 days and it was AWESOME. :)

Having to be patient to wait 3 days or so to see if the new formula supplement kicks this reflux was killing me. Actually, just about every facet of this experience was killing me. I think as I drove to pick up Ali from daycare this evening, I hit my rock bottom. But guess who was sitting at the bottom waiting patiently? God.

I realized that I have been trying to control Bella's disease and ultimately her fate. I thought, "If I just get enough people praying for her, I can cause her to miraculously get better." It became about me. As a parent, of course I want her to get better and I am praying, as all of you are, for that miracle. And yet, in that moment, I understood that, "Yes Tim, there are things at work that 1)are not about you and 2) are more powerful than you." Each new blister mocked me into realizing I am powerless over controlling her.

In that moment, I surrendered to EB. I have a beautiful, magical, miraculous daughter, and she has EB. Now, she may not have it her whole life, and yet she may. But either way, I'm walking down whichever road by her side grateful just to have her.

That's when God's grace flooded me with peace. The peace I have been without (with tiny exceptions) since May 27th. It's a conundrum; in order to have that peace I so desperately needed, I had to give up asking for it.

Then it showed up.

I'm sorry to steal the spotlight a little here from Bella, but it is a big day for me because since that moment, I have been at peace, and enjoying my daughter and the rest of my family immensely. I no longer have to put on the strong face to write this. In fact, I went to bed content, as did Ang, and we forgot to check the update page! (Sorry ... we had been up for 2 days straight ...)

This is a long, moment by moment journey, and thank God for it, because now I see Ali's perfect skin, and realize what a miracle every action, every activity, every game played...truly is. I got to fall in love with both daughters again today.

Last, you have to see Ang in action to witness the power of woman. She is Rock solid and cool as ice. A stronger woman I do not know and I cannot imagine being side by side through this without her...not to mention that she dropped just under 30 pounds in 2 weeks post-op. She is healing and strong, not just for herself, but for her children, and her overtly sensitive and emotional husband. She is the foundation and the mortar of this home. Thank you, Angelique.

Keep it coming, your prayers make moments like today possible.

Here it is again. Please hold this vision with me:

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

We love you all. Thank you for walking this journey with us.

Update 0601009 "25:55"

Did anyone get that?

Yup. It's 1:55. Ang is feeding Bella her bottle and we are rocking out to Mozart's Rondo Alla Turca on piano. Yeah, I know I used Mozart and ricking in the same sentence. That's what sleep depravation does to you.

The Good:

Bella's first pediatrician appointment went well in that she was 55-75% in each developmental area.

We started putting cotton balls in Bella's palms which is much healthier for her hands and little fingers to develop...keeps the natural shape of her grip while encased in tubing and socks.

Dressing changes look better and better each day...mommy and daddy are learning! It still took 2 houts though.

We tried a pacifier late the night before and it really helped with diaper changes.

The Bad:

Bella formed a giant new blister on her right elbow. The night before she literally beat the night before's blisters right off her face, so yesterday we tried to swaddle her. However, she is freakishly strong, a wiggle worm, and suffering from reflux on top of everything else (common in EB babies) so she spent most of last night wriggling and breaking free of her swaddle. We think the pressure of trying to pull her arm out caused the blister. It was little in the morning, but it almost wrapped around the back of her arm from one side to the other by 4pm. We had to lance it and drain it, otherwise it would just continue to spread. The way EB blisters work is that when a blister forms, it can just spread and spread because the pressure from the fluid building inside just continues to separate the adjacent skin. That doesn't happen to us; our blisters are restricted to their respective trauma site, because the healthy skin all around is bound down by that missing protein in EB.

Bella's reflux has made her REALLY irritable when awake (which is all night) She gurgles and hiccups in her cradle despite the 2" lift we gave her. Will try a higher incline later. Diaper changes at night have been wrestling matches which have also caused some new blistering. This evening, after the nurse left, while I was trying to change her diaper, she pulled her left foot COMPLETELY out of its dressing boot, which took three people to put on. I had to run next door to get our neighbor Becky, the OC public Nurse, to help feed Bella a bottle while we redressed the foot on the changing table.

Becky was reading my post from yesterday when I knocked at her door. Providence

Anyhow, we are tinkering with her feeding schedule, type of formula that is being used as a protein supplement for wound healing, EVERYTHING possible to try to make her comfortable. Oh, and diapers only get changed on a FULL tummy till Bella mellows out a little.

There will be good days and bad days, and there will be elements of good days in bad ones and vice versa.

Today, Ang had a good checkup and so did Bella. Today, hundreds of people prayed in their own way. for our daughter. Today, God placed my neighbor right where she needed to be.

Thank you all for visiting. It helps us soooo much. More than you know.

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

Download Bella's music!

Tim

We Made It. We're Home.

We made it. We're home.

One Chapter ends, another begins.

First of all, where do we put all the crap we came home with???

The house was already splitting at the seams...wow, wound care stuff...and there are literally BOXES of supplies en route from Indiana for dressing changes for Bella's limbs. Whew. Lots more to figure out!

Bella and Ang are asleep on the couch downstairs, and it would make a great pic if I could just get out of bed myself. Till today, I have overused or misused the word EXHAUSTION. Let me briefly recap the absolute drama of the day...

It all started when we thought that we had to be at the hospital at 8am this morning to meet Betty, Bella's Physical Therapist, to do the dressing changes on Bella's wounds. Thank GOD Ang's mom could be at our house at 7 this morning to help get Ali off to daycare. When we arrived, Betty informed us that Tara and Jen, our wound care reps, were coming out again to see what else we need and brainstorm one last time, but that they weren't coming till 10:30. Ang's & my mind immediately calculate the wasted 2.5 hours of sleep and growl under our breath.

I had my first anxiety attack this morning about 30 minutes into the shift. I couldn't catch my breath, was nauseous, and dizzy. I've never felt that way before. It was extremely frightening and uncomfortable. Luckily, I had the presence of mind to practice what I preach tom my patients and spent about 5 minutes doing DEEP breathing and it finally passed. We had so much to accomplish at the hospital, then we were coming home, and WHO KNOWS how that's gonna go. It just began to crush me form all sides.

HOWEVER, Betty rescued me with another breakthrough with Bella's wound care. Bella was asleep in my arms and Betty asked if we wanted to change the dressings while she slept in my arms...hmmmm...never crossed our minds that we could do that. Long story short, Betty did the hands and right leg in 30 minutes. Once the reps came, we designed a new strategy using a new product on the left leg. 30 minutes.

3.5 hours
2 hours
1 hour

We're figuring this whole thing out a little more with each day. The wound care reps COULDN'T have been nicer and more accommodating. We feel really well taken care of by them.

So, home health nurse was lined up by 8:30, wound care is happening early...discharge should be easy...right?

Wrong.

One of the neonatologists comes in to talk about yesterday's episode. I reiterate exactly what happened, and he felt he would be remiss if he let us leave without doing an EEG and EKG just so if something was going on, we wouldn't be doing a u-turn. Cool. We feel the same way, EXCEPT the results of the tests may not come in till TOMORROW...a la there's a good chance you're not going anywhere today. Our nurse yesterday prepared us for the possibility of a hurdle so I wasn't too surprised. Really, we were more concerned that whatever Bella was ding was alarming the people in the know...and that's always a drag.

So, we leave for lunch and return to have Bella dressed and sleeping in her car seat...one of the things left to do...carseat test. Okay. Check. So, Ang and I work in the waiting room setting up outpatient visits, talking to our insurance provider, who has been STELLAR to date, etc. As we are working away, suddenly I get this powerful sensation that my baby is at risk and I need to get back to her room. I explain to Ang I'll be right back.

I walk in to a scene out of a movie. A cameraman has two video cameras on tripods with various other gear set up right across from Bella's door. The EEG Team has also pulled up with their mobile cart. There are a handful of Doctors, some I recognize, some I don't standing around. It is chaos. Then, hearing test people show up, and while EEG team is there, EKG team shows up as well. I start dealing on people telling them who can do their tests and who can't and in what order...two of the teams wanted to "pumice the skin" or attach super sticky leads all over Bella's body. Nope. Not on my watch.

I was so grateful I had been listening again...call it intuition, gut, guardian angel, whatever. We were 2 for 2 with reaching out to my neighbor and keeping the techs away from Bella!

Anyhow, EEG came back normal as did EKG. Green light. Go home!

Bless the grandmas; they had been working all day to get the house ready with dinner on the table even!

We got home, tired, hungry, and exhausted by the 40 things that were done or attempted to be done to Bella. We had a wonderful meal with grandma (Ang's mom), Nanny (my mom) and Manny (my step-dad).

It is so peaceful here.

Part of me is sad to leave the NICU since it is where I want to work. The conversations I had with nursing and Doctors over the past 12 days has been really exciting, but having Bella at home recovering feels so good. I'll be back in a NICU soon enough. Now it's time to hunker down in the nest and get down to some serious healing.

Part of me also hopes you'll continue to come back to the site. I had this fear that once you saw Bella came home, you'd think," Yay! Glad that's over with!" To some extent that statement is true, but Bella's journey is far from over. We have some seriously big wounds to heal, as well as CAUSE the prevention of any new ones through proper, tender care, and the power of prayer and intention. When so many people put their mind and heart into one outcome, God, the Universe, the collective unconscious (again, whatever label works) responds.

What you all HAVE to know is that since the building of this page, Bella has had no new giant blisters like she developed in the first day-3 days. New blisters have been small in size, fewer and farther between, and have often healed themselves completely in the matter of 24-48 hours.

Thank you for all of your prayers, messages, thoughts, emails, and to those local who helped out in various ways THANK YOU. This wouldn't have turned around so fast if it weren't for you.

it's now 3:22 and Bella just went down for some serious ZZZ's and now so shall I.

Good night, and God bless all of you.

Last Night in the NICU

Big Shout out to our dear friend Jim Thomas whose birthday was Friday! Our bad, Jim!

In 24 hours, God willing, I'll be typing in this same position while Bella lies peacefully in her cradle at the foot of the bed I'm typing on.

In 8 hours, I'll be prepping for our final in-hospital wound care dressing change session with Betty our PT who is coming BRIGHT AND EARLY AT 8 AM to Bella's room. (Why Betty? That is just m-e-a-n. j/k we love you)

The fatigue is running deep, and anxiety high. The last two days have been exhausting, more so mentally and emotionally. Transitioning so quickly into EB wound care specialists has gone well, but has required every ounce of concentration and focus...two things we've been running in short supply of since the 27th. We realized that because of Bella's rare condition, we're going to know more about how to dress and care for her wounds than a nurse assigned to drop in each day. This has already become the case at CHOC. This is a little scary because, on the one hand, we expect of ourselves to be our daughter's first line of care, but learning about skin healing/infections, and types of dressings, how to apply what when...it's a lot when it's NOT your kid. I'll spare you the long tedious order of operations, but each limb has 8-10 steps depending on severity (left leg is still the doozy). However, each day, we troubleshoot and brain storm and learn a little more about how to do better for Bella. Wound care is the most painful part of this disease. EB patients liken their blisters and lesions to 3rd degree burns, so what we are concentrating on now is how to minimize the time the wound is exposed to air. That reduces pain and risk of infection, the two big hurdles this condition throws at you.

Having said all that, Ang and I completed all Bella's dressing changes in 2 hours flat today! Big improvement from 3.5 hours yesterday.

Katie, the PT today, said that CHLA (Children's Hospital Los Angeles) used to have an outpatient EB wound care clinic. She gave me the name of the PT Director there to follow up with to see if they still have that service. CHLA isn't anywhere close to where we want to be schlepping for any reason, but in case something gets too intense for us to handle with home care nurses, it will be nice to know a clinic specializing in this is only 50 miles away. (Let's hope they still have it!)

Bella is feeding like a champ with the Haberman Bottle still although we will have to fortify her breast milk with protein and extra supplements. That's cool. Mommy and daddy take supplements and protein shakes, why not our daughter?

Unfortunately, this afternoon, Bella started to display some unusual behavior that alarmed our nurse. She was twitching uncontrollably during sleep, and her heart rate spiked over 200 beats per minute during her afternoon bottle. She was also really upset whenever awake in between sleeps. She turned all sorts of dark red and purple today during her screaming fits. It was enough to completely break your heart. The resident on hand didn't think it was another seizure because seizures rarely happen in your sleep and the twitching needs to be more rhythmic and steady than Bella's was. No one had an answer for her heart rate. I walked in to the hospital confident of her medical condition, but nervous about her wound care. I walked out of the hospital nervous about her medical condition and confident (mostly) about her wound care. The switch was off-putting, and I am definitely scared about how tomorrow is going to go. Thank you for all your thoughts, wishes and prayers. All of us really need them at this crucial juncture.

Meanwhile, thanks goes out to so many for so much. I just don't have any more gas in the tank tonight.

The request:

Keep creating this vision with me: One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it just went away."

I hold on to this vision with a tired and fragile grip. So many have learned so much in such a short time since Bella's arrival. We pray that once she is home where she belongs, she sheds this disorder and blossoms into a fully functioning, inspirational child and adult capable of all the things her big sister is capable of.

Transformation happens.

Please keep the messages and comments on the photos coming, and please visit myspace.com/timringgold to download "Bella's Song" as well as several others to help support Bella. (edit- the songs can also be purchased above! Thank you :) )

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!