The Roller Coaster Continues

Me, Sean Stephenson, and his dad Gregg Stephenson

Well, up and down. This is the way with EB.

Up:

Getting to meet Sean and his dad, Gregg, this week at my good friend Joe Polish's annual conference. I asked Gregg if I could interview him and his wife for The 5 Percent Collective and described my vision. While describing my vision, Sean says, "You could build a MOVEMENT around that." My vision? To empower parents with children with special needs with the qualities that those 5% of married couples who don't split up have and use to stay together and raise successful children.

I want to create a monthly tele-seminar to interview those parents, but I want to create a retreat where families come and meet other families whose children have DIFFERENT special needs and diagnoses so they can see that while their diagnosis may be different, but the journey is NOT.

Left leg is (knock on wood) looking great!

Down:

I am in Phoenix while Bella has a fever that has spiked last night at 103.2 and today at 102. Mommy is bringing her to the doctor this morning while I sit in Phoenix. NO fun being so far away.

Bella is getting blisters on her neck, back, torso, and places where she hasn't had them yet.

Pray for Bella.

Love,

TIm

Well, sorry it's been a while since posting! I've been at a loss for how to keep you all updated without you having to come to the blog to check, and I've been a little laid up since my accident. NO worries, though. Just wanted to reach out and touch base again. You see, today, I finished "Bella's Blessings: a Humble Story of Providence." Today's task was to finish importing all of YOUR comments. I was really inspired all over again by your generous love. After all, there were over 500 COMMENTS on that page in just 3 months. You guys are AWESOME!

Now, what news to bring to you...

Well, Ang went back to work yesterday. She is happy to get back into a routine again. She was couped up in the condo all summer during the hottest months in SoCal, and since heat and humidity exacerbate Bella's condition, it was tough to get out. I'm back in the home for a month taking care of Bella. No worries, I had a blast with Ali for a month when Ang went back to work the first time, so I'm into it.

Bella's feeding issue is as follows. She will NOT take a bottle awake. We have to give her a pacifier and let her fall "almost" asleep...then slip the pacifier out and slip the bottle in without waking her. However, make sure that bottom lip doesn't get sucked in...when Bella pulls that bottom lip in when she's sleeping, you can forget getting a bottle in there! We are fortifying her bottles with extra formula; still using chlorophyl and Alkaline water (pH 9.5), and still using the culturelle and Zantac 2x a day. Despite her bottle aversion, Bella seems to still be growing every week, so we're blessed.

Regarding Minnesota, we are GO for consult in October, but STOP for anything else. Our insurance doesn't cover clinical trials. We are appealing, but it may be a mute point because Ang's company most likely is changing providers during open enrollment in October. U of M said that the new insurance provider usually works well with them, so keep your fingers crossed that the new plan covers clinical trials!

The best part about reading old posts was that I came across my vision for Bella. "One day, Bella will look back and say, "yeah, when I was born I had this rare skin condition, but when they brought me home from the hospital, it went away."

It dawned on me, that when we go through this trial, and Ali's cells start to completely heal Bella, we'll come home from U of M Hospital, and her condition will go away. When I made that bold statement, I never thought past CHOC, but GOD thinks a lot further ahead! Furthermore, she really will be young enough to where she'll have to read her own book to learn about this whole journey. Our hope and dream and vision and PRAYER is that one day, Bella will just have to take our word for it that life was anything other than typical.

Good to talk to you again. Please comment and tell us you're still here!

We love you, God bless you all.

Pack your bags...anyone have a PARKA?

Well, we're going to Minnesota, folks!

We have a consult with Dr. John Wagner at the University of Minnesota Blood & Marrow Transplant Center on Wednesday, October 15 at 9am (if you're going to be in the twin cities that day - or the night before - let us know! Let's share a meal!).

Things are moving along with the registration, paperwork, gathering of information. We are "in the funnel" as Tim at U of M, who is coordinating our care, put it. He expects that this whole process, including the bone marrow transfer and recovery, will happen within the year. That means, by this time next year, Bella could be potentially free from the clutches of EB.

She'll only be a year old.

I don't remember anything (consciously) from that age, do you?

You guys, let that sink in for a second.

She could grow up having NO MEMORY of this.

No memory of pain.

No memory of suffering.

THAT is an inspiring vision to hold on to.

There is a patient who is BMT +6 (6 days post transplant) right now and her mom is keeping us all updated through facebook. We are praying HARD for her daughter right now. I will ask if I can share her name with you all, but in the mean time...know that a girl is fighting for her life right now and needs EVERY ounce of energy, thought, intention, prayer sent her way TONIGHT. The good news is that there is an UNLIMITED amount of love and abundance available for all of us to channel wherever we choose! So SEND IT TO MINNESOTA RIGHT NOW, whatever time it is you are reading this, just take 10 SECONDS and pause, concentrate, focus on U of M BMT patient. Send light, love, laughter, healing, strength, peace, patience, persistence, FAITH, support, BELIEF, and trust...or any other you feel called to!

Also. I am planting the seed now. Remember PUCK. It is a non-profit being formed to raise $$ for U of M's program. Right now, even with all the various EB non-profits out there, NOT ONE OF THEM is financially supporting Dr. Wagner's trial. I refuse to get into any of the politics of non-profits and competing research teams at competing universities. I will just say that Dr. Wagner's program is on the verge of a massive breakthrough for EB and no one within the community is stepping up to help.

Weird. So, PUCK is being formed by an EB family that has moved to MN to help him out.

Lastly, www.the5percentcollective.blogspot.com is up! If you are parents of a child with special needs, or know of one, please go to the site or send your friends or family to the site so we can begin to build a support group that is based on power, optimism, and a desire to be cause in the matter, despite the circumstances.

In other news, we are moving to a mostly formula diet now and will be introducing rice cereal soon. Bella is really struggling with her bottles. We don't know what it is, but she just fights and screams through either the first few minutes, or 30 minutes, then passes out and it takes another 30 minutes to manually squeeze the bottle in one squirt at a time. Average bottle takes an hour to give to her right now. :(

Good news is that we've been using alkaline water for over a week now (pH of 9.5) and her skin looks GREAT. Virtually no open wounds on the outside of her body right now. Just some little stuff on the face, and existing wounds continue to heal wonderfully. Now if we can just get her eating without suffering...

Now, enjoy some wonderfully ridiculous adventures in the girls' room from earlier in the evening...



Cheers!

Tim

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!

Despite the Current Feeding Challenges, Bella is Sweeter Than Ever

ugh.

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.