One Step Forward, One Step Back

Well, hello everyone. Sorry it's been a while since any updates. Well, that's because there hasn't been much to update about. Bella's old wounds get better, but she continues to get new ones. One step forward, one step back. We are struggling with the reality that this is what it will be like every day of her life. We've been praying so hard for things to just "go away," that new or recurrent blisters almost feel like slaps in the face. We feel like somehow we are letting her down. Some of the blisters go away and stay, some just keep recurring. It makes us question whether Bella will ever be un-bandaged. One day at a time. One day at a time.

The good news is that her gas is subsiding. After just about a week on Zantac and Culturelle, coupled with Ang discontinuing spinach (spinach gave Ali bad gas as a baby), Bella has been mellow, almost serene today. That's a good thing because yesterday she was miserable all day and evening. We were told there would be good days and bad days, and those EB parents were right!

Here's a great Providence story from this past week I forgot to write about.

While at the EBMRF picnic last Sunday, a woman stopped me to ask me if Bella was an EB baby. She said her granddaughter had EB and she wanted us to meet her. Her name is Noelle, she's 8 , and lives in Irvine. The grandma wrote Noelle's mom's name and phone number on a piece of paper for us and we all went on our way.

Two days later, our neighbor Robert dropped by. Robert and his wife Katherine gave birth to a boy, Julian, three weeks before Bella. We don't know them well at all, but when they found out about Bella's condition, Robert came over and told us if there was ANYTHING they could do, let us know. Anyhow, Tuesday, Robert appears at the door with a gift for Bella! We talk for a little, then get back to dinner. As I open the box, a cute baby outfit awaits inside along with a card. As I read the card, there is a P.S. paragraph on the left side of the card. (You know, the part where you actually write something personal). Anyhow, the paragraph reads, "We want you to know that my sister in law has a daughter with EB and would be happy to talk to you and help out in any way. She lives in Irvine and..."

The name and number? Same name and number that was written on the note from Grandma.

Katherine had no idea we met her niece just two days prior.

In a metropolitan area filled with millions, and with a diagnosis of only 10 in a million, what are the odds? Too great for coincidence, leaving once again, only Providence.

On a separate note, I went back to work at UCI Medical Center this past week. I work in oncology, and the two sessions I had with two patients while they underwent chemotherapy were two of the best sessions of my brief career. The level of empathy and empathic listening was unparalleled, and the authenticity I was able to tap into created such a safe space, the two patients opened up about all sorts of things related to their journey through cancer. One patient even recalled the birth of her child and having to go home from the hospital without her due to her being only 4 pounds. No one can explain to you what that is like. It is the most "wrong" feeling on the planet...like there is something terribly wrong with the planet and there is nothing you can do to undo it.

I realize that my own suffering has created a new level of connection with my patients, and I am grateful for the tender sessions we had this week.

There really is always something to be grateful for, sometimes it just takes a little reflection to see it. Thanks to you, this site allows me the opportunity to reflect and share these reflection with you. Your feedback continues to strengthen us as we brace ourselves for the marathon that we thought was just a sprint.

May the abundance of God's blessings be upon each of you today.

EBMRF Picnic

Well, the EBMRF picnic was today, and we packed up the minivan and went for a trek up to Malibu. It was at a cool outdoor shopping mall (although, much smaller and hipper than a "mall" per se). The weather was a little warm, but there was plenty of shade. it was extremely well run, with TONS of activities for kids. Ali got her face painted, planted flowers, filled a butterfly shaped glass jar with different colors of sand, made and ate a cupcake, and danced away the afternoon trying to master the hula hoop. She's got a ways to go with that. Free valet parking, free food, free giveaways...it was a nice event.

We got to meet several EB families from Southern California with kids from 5, 8, 10, 11, to a woman who is 30, all with DEB. Most were more severe cases than Bella, and it was a little frightening to see the fused hands, and flaky, bandaged arms (and legs) and two wheelchairs. However, we met two kids who looked and led rather normal lives, one of which lives in Irvine, the city next to ours!

We all exchanged horror stories of nurses putting tape on our babies' faces and how the docs don't know as much as we do about this bizarre and rare disease. Out of all of Southern Califronia, there were maybe 5 families from the region today, all who knew each other.

It is a small brotherhood/sisterhood/familyhood...community. The parents couldn't have been nicer to us, and each offered their help with anything.

Ang's high point however, was the help she received in the ladies room while changing Bella. Women were ogling and cooing over Ang's shoulder as she was changing Bella, and then one voice said, when hearing Bella squak, "That's my favorite sound in the whole world!" The woman stepped up and helped Ang clean/straighten up...who was this woman? Brooke Shields.

Yup, Malibu did have a few stars in attendance today. We also ran into Tori Spelling and Denise Richards. I was yaking it up with some guy at one point, and we were talking about the superiority of the balloon lady, and how we'd never seen anything like her work...a few minutes later, I see people taking pictures with the guy...I still have no idea who he was. The interesting thing about the social dynamic of the scene was that we live in Orange County, where at most high-end malls, no one makes eye contact because they all think they are the most important person there anyway and filled with self importance. At this mall, everyone was making eye contact with each other to see if the other person was someone they knew from TV. I never had so many strangers make eye contact with me...only for a second before they realized I wasn't REALLY Brad Pitt after all. I know, I know...A LOT of double takes...yeah, in my dreams.

All in all, it was nice to meet some parents who KNEW...one guy and I talked about what it was like having your wife in one hospital and your infant child in another...the feeling that no matter where you were, you weren't at the other. I remember walking the tunnel alone that connects St. Joe's and CHOC time after time in those first 3 days in a daze...it was so nice to meet someone else who had made that same voyage.

Ultimately, we learned today that you learn from other parents whose kids are older than yours...NOT from the medical establishment. Then, when a new baby comes along, we'll help its parents the same way we're being helped. That's what Leslie's trip out to see us was all about. Solidarity.

Thanks to those who encouraged us to make the trip today. We were on the fence, but your words of encouragement pushed us off. THANK YOU!

Oh, and to see a new video of Bella, Ali, and Mommy that is SUPER CUTE, go to

http://www.youtube.com/watch?v=EjIbUiUd__E

Good night and God bless. Tomorrow, we meet Bella's GI Doc!

What a first month!

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

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

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

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

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

Other news...

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

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

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

Still other news...

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

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

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

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

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

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