Saturday, August 29, 2009

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 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

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!

Friday, August 28, 2009

Despite the Current Feeding Challenges, Bella is Sweeter Than Ever


It's taking Bella over an hour to drink a bottle. Her mouth is sooo beat up inside right now. She either screams in pain, rejecting the bottle, or, if we put in the pacifier, she falls asleep instantly, and doesn't generate enough force to suck even through the Haberman nipple...supposedly the softest, easiest flow nipple out there. Please pray that her mouth heals enough for her to simply eat.

Second, we got our list of to-do's from University of Minnesota to get the ball rolling for the BMT clinical trial. It's quite a laundry list, but that's okay. It's gonna take a few days to get it all together. Starting Monday, I scale back to only 2 hours a week of direct service so all things Bella can take center stage.

However, the whole BMT eligibility hinges on whether or not Ali is a sibling match with Bella. Again, I can't see, given the Providence through this whole journey, how they couldn't be, but please focus your prayers on:

1) healing the mouth
2) perfect sibling match (think 10 out of 10)
3) more milk

Ang's milk continues to dry up despite trying every suggestion and supplement known to womankind. The only bright side is that we use pure alkaline water with the Nestle Good Start formula, so it's as good as a substitute could be, but it's really no substitute at all for the real thing.

Bless her heart, despite the current feeding challenges, Bella is sweeter than ever and pretty much sleeps through the night for the most part. She is in sleeping with Ali every night now, and we usually have to get up maybe once to re-wrap her or occasionally feed her, but it's getting better in the night time! YAY! Thank GOD for little victories!

If you are still here, just type a quick note letting us know. We have the feeling (which is both understandable and natural) that most have left this site. We're usually pretty strong, but today really sapped us. At one point, I watched as Bella's top lip lifted off her mouth and peeled away with the bottle as I was gently pulling it out during a scream. I don't care who you are, that leaves a mark.

Last thought should be a good one, so here goes: :)

Yesterday, when I was on the phone with Tim Krepski at U of M, he winced when he heard we had Cigna for insurance because they have had trouble getting Cigna to play nicely in this trial. Just a couple of weeks earlier, we found out the Ang's employer is switching from Cigna to Blue Cross Blue Shield during the next open enrollment. At first, we were scared, so much of Bella's care has been covered so well up to this point. How could BC/BS be any better? or so we thought. Tim said BC/BS works much better with U of M...who knew?

God, baby, God.

Good night and God bless.

Tuesday, August 25, 2009

The Emails Just Keep Getting Better

The emails just keep getting better. This thread is between me and the dad of a girl who is doing GREAT after a successful BMT. You can follow her story at (sorry for the poor grammar)

Thank you for your kind email and sharing with me about Bella!! We will keep her in our thoughts and prayers. I will check out her page and your blog. If there is anything we can do to help support your fund-raising efforts, please let me know. Our hope from day one was to share with everyone, no matter what the outcome. We know how it feels to be so desperate, to worry about hurting your child just hugging her. They truly our a gift from God and we cherish every moment we have with her. Please let me know if we can help you or your family in anyway.
Many Blessings,

Tim Ringgold
August 24 at 11:04am
Hey you are most welcome! Say, do you know what the minimum age for eligibility is for the BMT trial? On the website it only mentions 25 or under. Did you go to MN to find out if Mason was a match, or can you do that locally?
Thanks for the info; we are planning on participating as well as soon as Bella is medically eligible.

Jason York
August 24 at 11:08am
I am not sure what the minimum age is, but do know that a family with a child less than a year old is going through the process soon. You can have the match test done through you local pediatrician... it is just done from a blood draw. Check with Tim Krepski, and he can let you know what you need to get locally. 888-601-0787, if he is not there or doesn't return your call....keep calling.... squeaky wheel gets the grease.

This next thread is between me and my childhood friend I found on Facebook last night that I alluded to in last night's post...

Hi Tim,
Good to see you on Facebook. I saw that your daughter has EB. It happens that I work in Pediatrics in Minnesota and know that my colleagues have performed transplants for EB:
Her eligibility depends on her particular mutation, but I thought I should let you know.
Best regards,

Tim Ringgold
August 24 at 10:40pm
WOW. Hey Logan! I was just on that very page this week! In fact, I was emailing back and forth with a EB dad who's daughter is around BMT day +130ish and doing great. He gave me the name of a Tim Krepski to contact to get the process started. Bella has Dystrophic EB. We are 99% sure it is recessive due to the complete absence of Collagen VII beneath the dermis. The original biopsy couldn't confirm the recessive diagnosis, so in the beginning of July, we did a blood test that got sent off to GeneRx to hopefully find out for sure.
Crazy, man. Do you know Dr. Wagner or this Krepski guy?
Thanks for reaching out. It's an even smaller world thanks to facebook and the internet, huh? How long you been in MN? Good place to practice medicine I imagine judging from The Mayo Clinic and U of MN.
We'll be heading your way at some point. Let's make sure to connect when we end up your way!

Logan Spector
Today at 6:26am
Hi Tim,
Yes, it's a small world. The internet's definitely opened up possibilities for everyone, but especially the parents of children with rare disorders.
I do know John Wagner and all the pediatric transplant docs very well. They're all in the division of pediatric hematology/oncology and since I study childhood cancer we work closely together. I don't know Tim but he's a nurse rather than faculty, and so would be coordinating care rather than directing it.
It looks like the trial is for kids with collagen mutations rather than keratin mutations, so your daughter may qualify. If you do come it's a great team and (not that this is a primary concern) a great city to stay in. I've been here seven years, since graduating with my PhD (I'm not a physician). My wife and I have a boy and a girl, and we just this week moved into our second house.
Let me know if you come up here and I will help any way I can. If nothing else I can lend you a parka- those might not be so common in Orange County.

Watch as the Providential hand of God gently moves us through our lives, connecting and reconnecting. Who is He connecting you to?

Many blessings to all,


P.S. Don't forget...I am closing the Care Pages site on August 31. Please visit this blog only to continue to follow her story. Put the address above in your bookmarks/favorites. You can receive updates by creating a blogger/gmail account, become a follower and we will show up on your reading list each time log in. You can also check the options as you may be able to turn on an email option each time a post is made. When you become a follower to our blog, it Lets Ang and I know that you are still reaching out over the internet and walking this journey with us. YOUR PRESENCE through all of this has given us the strength to seem so strong. As the saying goes, YOU are the wind beneath our wings! (Can't believe I just went there - oh's true!)

Monday, August 24, 2009


Okay, I wasn't gonna update tonight (I only got two hours of sleep last night - thanks Bella!) but after the 2 emails I just got - I HAD TO POST THIS.

First off, my friend Jim wrote back to say that he pitched me to EMI Records and they "warmly embraced" the idea. So we are meeting in the studio up in LA next Tuesday to go over the details.

Second, I was on facebook linking up with some old friends from elementary/middle school. I got an email back from one old schoolmate:

Hi Tim,
Good to see you on Facebook. I saw that your daughter has EB. It happens that I work in Pediatrics in Minnesota and know that my colleagues have performed transplants for EB:;
Her eligibility depends on her particular mutation, but I thought I should let you know.
Best regards,

It "Happens" that I work...


The above link is where I went to register for the clinical trial that I wrote about last week! I think we're on the right track.

Good night and God bless.

Friday, August 21, 2009

Providence...The Book

Ahh, bath time!

Good old fashioned snail mail still sends us your love and abundance almost daily. Thank you.

Don't forget to sign up as a follower. It's easy! Go to the heading-Followers in the right column, and sign up as a follower.

Okay. First, before I forget. We sent in our inquiry to the University of Minnesota EB Clinic regarding the stem cell BMT clinical trial happening there. We have decided that as soon as Bella is eligible, we are going to pursue that option. HOWEVER, it only works if Ali is a "sibling match"


Put on your prayer hats and PLEASE generate some serious power that Ali is a perfect match for Bella.

I genuinely believe at this stage of this faith journey that she MUST be. It just wouldn't make any sense for her not to be. However, I believe that a large majority of the glory that has been these past 12 weeks has been from YOUR power, strength, love, and prayers. After all, it's been 12 weeks, AND YOU'RE STILL HERE. Thank you for sticking with us! Check out the new photo of our mantle. It is OVERFLOWING (like this message board) with your love and support.

Bella's blisters are increasing of late. We don't know why. EB is just EB and it does its thing. Her head and face are really beat up right now as are both thighs. Elbows are healing, but fingers got banged up between Monday and Wednesday. Also, the crease behind her right knee basically split open today from too many wraps rolling down and causing too much friction. That's gonna be a tricky one to get to heal do to the fact that Bella kicks like a mule several times a day, every day. Again, send the prayers.

Nevertheless, after a MONSTROUS blowout of her diaper this evening, she was happy as a clam and smiling and chatting up a storm...GOD LOVE HER!

In other news, I am working away on the first 48 hours of Bella's life. It will be combined along with the blog and its comments (private messages will be omitted) into first an eBook, followed by a printed book. The working title is currently "God Wraps Gifts in Mysterious Packages: a Humble Story of Providence." I know I's a really long title. I'm open to suggestions, as long as they have the word providence in them. ( I bought today) It has been very difficult to write as it is still a little raw, so I work on it a little at a time. We will be giving the Ebook away for FREE online. All anyone has to do to download it will be leave their name and email address. We are also combining a fundraising opportunity with the book. For those who want to pay what they feel the book is worth, they will be able to pick one of 5 charities that will be related to EB and Music Therapy, and 50% of what they pay for the book will go straight to one of the charities on the site of their choice. Then, at the end of the month, I will match the charity that has the most contributions, essentially giving them 100% of the revenue generated by its followers. This way, I get to experience giving most of it all away, and get some compensation to help out the family. Each month, I will rotate in new charities, so each charity has an incentive to drive its members to the page. I would like to also make the book and audiobook and give that away free as well.


Yesterday in the am, I was thinking about who I still knew in the record business. There is an album of material already recorded related to this and prior journeys of faith, and I want to make it available in CD format as well as mp3. I sent out the vibe that I need someone to help me with the production and distribution. I don't know that I have the know how and time to handle all that.

Yesterday in the afternoon, an old friend of mine called. We had played phone tag over the past couple of weeks. He and I were in bands together in Phoenix back in the day, but were never in the same band together. We maintained our friendship and affinity for each other as our career paths diverged. Anyway, I ask him what's new and he tells me...

...wait for it...

...that he has a record label now. He has full distribution through EMI including marketing and tour support. He can sign 12 artists/bands a year, and has a full recording studio in his home in the Hollywood Hills. After I tell him about Bella, and that I had this body of work I want to get out there to help raise money for her care, he says, "Dude! I can help you! We can finish your record here!" Then, he proceeded to get all excited explaining what he could do with the label behind him. The best part is, after so many years as friends, we would FINALLY get to work together!

So, I think I just landed a record deal yesterday. I don't quite match the style of the other artists on the label, but what the heck, when your friend owns the label, I guess it's okay?

GO to to hear the new song, "Providence" that has been written to describe this walk I've been taking these past 12 weeks. I'm pretty sure that will be the name of the album as well at this point.

Good night and God bless you all. Thank you again for your love and support. Please continue to send us messages, even if you think we already "know" that you love us and care for us, we never grow tired of reading it, seeing it, and hearing it!


Wednesday, August 19, 2009

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... 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?

Sunday, August 16, 2009

Phew...the Weeks FLY By...

Check out that Smile

phew...the weeks FLY by...

The good:

I think (knock on wood) that the new "ABC Wrap" technique with 1" gauze on Bella's hands combined with a mitten is WORKING to keep her hands blister/wound/ and webbing free. We got a gift box from someone at church that had wonderfully thin mittens in it so we can actually hold Bella's hands and feel her squeezing our fingers with hers! When this is done in the middle of an attachment gaze and some doesn't get any better.

Bella slept from 12:30am to 6:30 am last night! WEEEEE!!!!

We switched (again) formulas to Nestle Good Start with Probiotics and this has seemed to get her painful gas under control finally! She is still on Zantac and Culturelle twice a day, but the Culturelle has different probiotics than the formula, so we're thinking the double action is really helping.

WE WENT OUT ON A DATE JUST ANG AND I ON TUESDAY NIGHT!!!! WOOOHOOOO!!!! THANK YOU THANK YOU THANK YOU to Grandma and Grandpa for taking Ali to spend the night and then go to the aquarium the following day, and thanks to our next door neighbor Becky for watching Bella! It was AWESOME! Don't get us wrong, we love our kids, but we HAVE to water the marriage FIRST and that has been challenging because it is so easy (mainly due to lack of sleep) to just take one day at a time and not plan out anything beyond the necessary, but GOD LOVE Grandma and Grandpa. They called us and asked if they could take Ali on Wednesday and pick her up Tuesday night. Once we had that in place, making the call to Becky wasn't so hard, and bless her heart for agreeing on one day's notice!

Susan Hermes contacted us today. She is the mom of an 8 yr old in neighboring Irvine also with DEB. She gave Ang lots of good insights and info.

We have a new contact at Byram...our Woundcare supply distributor. Our original salesperson was great out of the gate, but I don't think its her job to work with us ongoingly. So, when we were having trouble getting any gauze, after a month of patiently waiting, I threatened to fire them, and the next day the Customer Service Supervisor called to say he would be taking over taking care of us. That same day, what I had been waiting a month for arrived.

(This was such a good exercise...when I started typing, I was tired and run down. Then I wrote, "The Good:" and thought to myself, "Hmmm, so what's been good this week?" Then it started to flow. It was all up there in my head, but I just wasn't present to it, so it seemed like it wasn't there at all. Next time you're in a funk, write down, "The Good:" and make yourself write 5-10 things that apply. There in there!)

The bad: (yes, it's not all pollyanna)

Bella's infant hair is falling out on the sides of her head, so that nice friction buffer called hair is no longer protecting her delicate little scalp. She has tracks of blisters and wounds on both sides of her head and one heck of a gouge right under her left eye. The blisters on her scalp are weird. They are hard, and don't drain. They are often discolored and look more like psoriasis than EB blisters. Weird.

We've been trying to use breast pads for elbow, heel, and knee protection once blisters have healed, because Bella rubs the skin off these spots with great ease, but they just aren't working on the elbows. She continues to re-injure her elbows despite the pads, so we have to keep looking for a reusable, economical solution that will stay on and protect. The mepilex foam dressing we use when there is a wound there is awesome, but extremely expensive, and I don't want to burn through it as a prophylactic.

The inside of Bella's mouth is a mess. So many giant blisters. I do a good job of blocking it out and not imagining what that must be like, but it is hard when every bottle feed seems to begin with her arching her back and stiffening up like a board while crying and trying to suck simultaneously. The best feeds are the ones when she's still asleep, but those seem to be fewer and fewer lately.

Bless her little heart, Ali tried to help Bella with her binky (pacifier) tonight and rubbed a good chunk of Bella's bottom lip off in the process. Ang and I were loading groceries in the back of the minivan so we didn't see it go down. Ali has been politely relieved of binky command indefinitely. She is such a good helper and has a heart of gold, she had no idea.

That's enough.

Throughout this journey, we have recognized that there will be ups and downs and there have been. But really, it's all GOOD in the end. Life has been so much more...well let me give a couple of analogies...

Life just went from AM to FM Stereo
The volume on the Life Channel just went up to eleven! (think Spinaltap)
Life just went from a black & White with rabbit ears to HD on a flat screen!

It's all just a bigger game than before. What I have learned is urgency. The dreams of "someday"...they need to come NOW.

Live your life like your life depends on it.

God bless and have a wonderful day today (whatever day it is that you are reading this!)

The following is related to the CARE PAGES blog:
P.S. I will be transitioning over to in 2 weeks. Beginning on my birthday, AUGUST 31, I will only be posting to that site from here on out. Please go there and sign up as a follower. That way, you can elect to be notified when there is an update, just like on this site, but that site allows you to listen to music, link to videos, and even make a financial contribution if you feel called to. Plus, you can forward that site address with ease to your friends and family and they don't have to log in and become a member to read Bella's story. But, PLEASE PLEASE PLEASE sign up as a follower. We don't want to lose you!

I will continue to warn you of the upcoming transition so you have ample reminders! IT'll be like switching from analog to digital TV-oh wait, that didn't go well...nevermind! Just go to!


Monday, August 10, 2009

The Five Percent Collective Has Been Born

Happy Monday! Since most of you will read this Monday 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.

Friday, August 7, 2009

If She Gets Up Thrice...It's Down Right Diabolical!

I just accidentally erased this whole thing, so here goes TAKE 2....

So, the whole sleeping through the night thing? Just a fluke! Rats.

I figured it out...
If Bella sleeps through the's a MIRACLE
If she gets up once...we get our 5.5 hours and deal with it, BUT
If she gets up twice...this represents an exponential loss of rest, AND
If she gets up thrice...(hehe I said thrice...a la LAST NIGHT)'s down right DIABOLICAL!

Having put a moratorium on the caffeine weening has helped me a little at least. Ang, well, she's beat! I realized as I was drifting on the freeway the other day that I'd rather be full of caffeine and alive, rather than caffeine free and dead! So, Starbucks, I'M BACK HONEY! DID YOU MISS ME?

The sleep interruption may have something to do with the two big new blisters Bella gave herself on each foot. :( She was kicking like a mule the other night due to a bout with gas, and yesterday we found to biggies. The one on the left foot wraps all the way around from the top to underneath. Too bad too; the "bath incident" wound finally just cleared up.

Meanwhile, we have implemented a token economy with Ali and it is working like gangbusters (for now). She eats all her food, stays dry, and listens (for the most part). In return, she gets a new toy or DVD come each Sunday. It's good leverage, because she knows she can lose the privilege at any time during the week, and it's stuff we would have bought for fun anyway. Gotta love the proverbial carrot at the end of the stick trick!

In other news, there is a family with TWO new babies in CHOC with EB right now. Crazy. We have reached out and look forward to hearing from them. We have learned SO MUCH SO QUICKLY, it would be GREAT to pass it all on to save them some of the unnecessary pitfalls that can occur in those first few weeks. I sent them an email through Betty, our Angel of a PT, that outlined some basic steps to follow while still at CHOC to keep their babies safe as possible and offered to come consult on dressing changes. I really hope they call us. It would feel so great to pay it forward so quickly.

Lastly, here's the Providence story of the day:

In NICU music therapy, there is a device invented that stimulates preemies who are having trouble transitioning from feeding tubes to oral feeing. It never really got off the ground after just a few prototypes, and 7 years later, a second company attempted to pick up with a second generation of the device. I had met over the phone the Dr. who was heading up Generation 2 last summer. After being in the NICU, it dawned on me just how many babies NEED this device, and last week I pledged to myself that I would be instrumental in deploying it nationwide. Problem is, I heard rumors it was in a legal battle between the two companies. I tried to get in touch with the original inventor, but she is out of the country, so I rang Dr. Wren, the "Gen 2" developer, and she confirmed today that is is in fact d-e-a-d. The company that made Gen 1 and the company that made Gen 2 couldn't come to an agreement over transferring the license so it died.

I told Dr. Wren that I just had a baby with a rare skin disease that may or may not be fatal in the NICU, and as a NICU MT, I realized that this device needs to be in every NICU, just like the feeding pump that fed my daughter for the first week of her life. I told her that one way or another, I am going to be instrumental in making it a reality.

Dr. Wren replied, "Is it Epidermolysis Bullosa?"

Stunned, I replied, "Why yes, it is!"

To which Dr. Wren began, "Oh I am so sorry, Tim. However, you should know that I developed the first (some scientific name for a type of wound care product for EB) while doing research with Children's Hospital of London...." She continued for a minute describing exactly what her product does for EB patients. Her words faded away as I looked out the sliding door up to God in Heaven. I thought I was calling about NICU MT, but God had much more planned. Providence. What are the odds that this Doctor who is from London, who lives in Reno, who I meet while in San Diego, shares the same passion for NICU MT and EB? PROVIDENCE.

It doesn't end there, though...

Dr. Wren asked, "So, you're in San Diego?"

"No, I did my internship in San Diego. I live up in Orange County."

"Really? One of my companies has a manufacturing facility in Costa Mesa (only 20 minutes from me). Maybe next time I'm in town we can get together for a cup of coffee."

"No, Dr. Wren. The next time you're in town, I'm taking you to lunch to find out what exactly it is we are meant to do together."

"Well then, I look forward to it, and I'll call you when I'm coming to town!"

We part ways.

IF you believe in the Silver Lining, you will ALWAYS find it, IF you don't give up. God will NEVER give up on you, BUT the Silver Lining may take more looking than you at first expect. Do not be discouraged; God alone can see the big picture, and you may be standing right in front of the Silver Lining, but if you either give up or don't believe, you'll miss it. If you are having trouble finding It in any given situation, ask for clues. God will reveal them. Just be willing to deal with the fact that It may not be what you originally were looking for.

Just remember Bella's Song:

Don't be afraid
to ask for help.
God will always answer you
in His or Her own way.

God's love and peace to you all.

Good night.

Tuesday, August 4, 2009

Bella Slept Through the Night!



You should have seen the look of panic on my face as I rolled out of bed at 7:30, looked at Ang, who was pumping, and realized I hadn't moved since I went to bed at midnight. I said, "I am so embarrassed! I'm so sorry! Did you try to wake me up?" Se just looked at me and replied," I didn't wake up either."

Then, we realized the truth: Bella hadn't either! We only get up when she cries, so no cries, no get up!

Oh, it was like a dream, though I must admit that I was so delirious from sleeping 7.5 hours that I almost fell over trying to get to the bathroom. I was quite a sight.

Oh, and the best part was that when I put Bella down in her crib in her and Ali's room, she was awake! She fell asleep on her own and slept through the night with her big sister!

[sound of Culture Club singing "It's a's a's a miracle...]

Gooooood stuff. Ang and I had so much energy today!

It gets better! Bella was awake and alert and mostly calm during dressing changes with no pain meds. There are currently five blisters that are mostly on her left knee, one on left elbow, one on her right cheek, one on left middle finger, and right calf. Left thigh has a bandage that can stay on for up to a week, so the blister under it is probably healed by now. We'll take it off Wednesday to monitor.

If all goes well on Saturday, she should have no open blisters anywhere, and we plan to unwrap both hands to do a little baby photo shoot in the home before re-wrapping for a music therapy pool party/reunion Sat evening! I can't wait to get a picture of her hands! You've never seen them! All the while, Bella coos and and smiles and locks eyes most of the time. She still is dealing with a little spit up and gas which brings on the crabbiness, but it's totally manageable. She ROCKS.

On a separate note, THANK ALL OF YOU who wrote "I AM IN" on the site! What a huge and wonderful response from all over the country! Here is the deal: I don't want to pursue that vision using this site, this is for Bella's progress. So, I made a new blog for all those who want to play in the manifestation sand box.

It will be located at soon, but I am having challenges getting the name and the blogspot site to talk to each other! For those interested, please go there and read the post for more instructions. For those who want to just stay on the sidelines, feel free to come visit us on that site! I am going to restrict how much progress on that front I publish here. I want to keep this more about Bella than me, and even though that vision affects and involves her, it's better left on its own page I think.

See you over there!

May God's blessings shower you with all good things in this divine moment. Thank you for being a part of our lives. This whole journey would have gone very differently without you. Good night.