Sunday, March 28, 2010

Life is Good

Even as I listen to Bella bellowing upstairs as she wrestles with sleep, I know life is good. Have you ever taken the time to write out a Gratitude List? That's when you just write all the things you are thankful for in life one after the other. It's a great tool to help you get out of any funk you're in. Well, I'm not in any funk, but these past days have just felt like one ongoing gratitude list. Not that there haven't been clouds in the sky, but man, overall, things have just been great over here.

Ready for a morning at the park. Photo by Ali

Bella is as big and strong as an ox. She is standing up assisted by mommy or me and loving it! We were so worried the left foot and leg would be problematic when it came time to tackle standing, but it's been quite the contrary. In fact, her left leg is currently entirely closed (knee/shin/ankle/foot) and she feels quite comfortable putting her weight on that foot! We usually put a johnson and johnson disposable breast pad under the right heel to help prevent trauma to the left leg, but it's messing with her ability to bear weight on that leg, so we're gonna drop the breast pad and see what happens. We still wrap both lower legs as a protective measure, but currently they are both wound free!

Hey dad, is it true I can cook this just by staring at it?


I can't tell... did it work? You take it...

Oooh ooh ooh, it gets better! Bella has successfully returned to the bathtub! WEEEEE! I don't know if you remember back to when we first tried to give Bella a bath. She kicked a big hole in her left leg at 6 weeks old. We've been giving her sponge baths ever since, just procrastinating until the last possible minute before trying THAT again. Well, bless Ang's heart, she bought an inflatable bath, just like the one we used for Ali, and a special foam base and marched in with Ali in support and DID IT! TWICE! We are two for two with successful baths! We take all of Bella's bandages off except for the left leg. We just let that soak. The skin is sooooo fragile still on that lower leg and foot, we don't want to leave anything to chance.

It should be noted that Ali has become quite the little helper around the house. She has kicked into a new gear of sweet and adorable in the past week. We are so thankful for this, because she went through quite a period of acting up and pure defiance. Now, she INSISTS on helping feed Bella, bathe Bella, MOP THE FLOORS! I know - I know, it's amazing. All this and she doesn't turn 4 for 3 more weeks! She's a saint. She just loves her baby sister SOOO much, and Bella simply IDOLIZES Ali. You should hear Bella CRACK UP when Ali goes up or down the stairs in front of Bella and me. It is the cutest sound on the planet, particularly since she is so fat, her laughs are HEARTY! LOL.

This is what happened when Ali realized she could take her own picture...

In other news, we are excited to announce our FEATURED PARTNER for the Month of April... this Thursday on April 1st! In the mean time, PLEASE purchase a copy of Bella's book so that we can send the biggest check possible to PUCK for all the great work they are doing getting established up at U of M and in Minneapolis. I have been grinding away on a marketing packet to submit to my agent, so I have read and re-read the book twice in the past 2 weeks myself. I am present to the unbelievable outpouring of support that occurred during those first 3 months. I am also present to the GIFT that Faith is. Man, if we didn't have faith that something wonderful couldn't come out of all this...whew. I just don't think we'd still be walking. It was/is stressful enough, but the hope that we carry each and every day that this entire journey will actually be the source of WAY MORE INSPIRATION AND HEALING than suffering... well, that keeps us going.

Thanks so much for being here and walking this most unusual path with us. This disease is so bizarre. It's hard to fathom even for us, and we deal with it day in and day out. We are just so grateful we don't have to walk alone.

Peace, love, and gratitude,


Sunday, March 21, 2010

We Have a Giant Baby

It's true.

Bella is approaching 10 months old, and is currently wearing anything from 18 month to 2T clothes! Rarely does a 12 month article sneak into the mix. This is a great thing. The only problems (if you can even call them that) are that she is too big for a walker or jumper already, and since her head is off the charts big, she hasn't quite figured out crawling or tummy time too well.

In fact, she does yoga in her crib when she tries to crawl. Her butt goes straight up when she's on her tummy, legs straighten out, but head and shoulders remain planted in the crib, resembling a baby version of Downward-facing Dog. It's pretty hilarious to watch, right up until she moves into her "head-plow" move where she starts crawling with butt still up and head still down. This is not good for her face. Someone should tell her that. Her forehead really doesn't tolerate the head plow very well, so she's got some wounds on her head, but she really doesn't seem to mind.

Through it all, she remains happy, cheerful, and generally sweet.

Bella is also finally teething like a champ! She has her top 4 front teeth, but we can't see if she has any on the bottom. The only reason we can see the top teeth is when she yells or cries when she's in one of our arms. She sticks her hands over her mouth and sometimes she sticks her fingers in her mouth when she's crying, and we can tell it's not a tired, hungry, or diaper cry. She will mouth all over her bottle, but not necessarily drink it... seems like the nipple is comforting to "chew" on.

If you swallow the syringe, do you hallucinate?

Bella's wounds are currently GREAT. She has a couple of small wounds, one on her left thigh, one on the right thigh, and behind her right ear, but they are all relatively small. All the major problem areas are currently closed! While we know this will probably be temporary, but it is a nice break for all of us. Wound care goes quickly and painlessly, which means less stress all around. We'll have plenty of stress to enjoy this summer in MN, so this little break is a nice, and needed, break!

"Hey, I want a blue tongue, too. If I can just get my hands on that lollipop..."

In other news, THANK YOU to everyone who has bought a copy of Bella's Blessings! We're slowly selling Bella's book, but we'd like to sell more so we can write a big fat check to PUCK at the end of the month. They are the only non-profit funding Dr. Wagner's research (i.e. Bella's treatment this summer!), so we want to offer as much as we can to them while they are our featured partner.

Sooo..... please, if you haven't done so yet, order your copy right now! Just CLICK HERE, and it'll take 2-3 minutes TOPS! If you have read the book, will you leave a comment on here and/or a brief review on the page where you bought it? We are really counting on word-of-mouth to spread Bella's story to the many who could use an infusion of inspiration that faith matters.

Doesn't look like whatever was in that mug helped too much...

Thanks for being with us through these good times as well as the bad. Your presence, support, and prayers fuel our strength.



Wednesday, March 10, 2010

Bella's head is 'normal!'

A rare moment of exposed skin in between bath and bandages...

Well, we dodged one bullet this week. Thank God.

Bella's head has been steadily growing off the charts. Her growth curve is vertical! Her pediatrician ordered a head ultrasound to rule out Hydrocephaly. We went on Tuesday, and got the news later that day that is was negative. So, Bella just has a big melon. We'll take it! In a week that saw big, fresh new wounds to both upper arms/armpits, and reopening of "The Big Two," (left knee and foot), as well as matching holes in her cheeks from digging her thumbs into them whenever she's tired, it's been a long week for all of us. She's in a spell where once again, we can't console her once she gets into a tirade. It's like she's "stuck" when she's pitching a fit and can't get out of it until she literally collapses from exhaustion. Kind of lame. Last night, I had to resort to a new wrestling move I affectionately call "the Python," where I hold her against my torso as I rock on the couch or in the glider, isolate one leg on either side of my right thigh, then wrap my arms around her torso in a sort of reverse bear hug to isolate both arms to keep them away from her face. I end up cradling her with her back to me and she really doesn't like it since all she wants to do when she's tired is dig holes to China by way of her face, but it keeps her from further injuring herself, as bad as it may sound. Poor kid. I don't know what we're gonna do when we go for the BMT. How is she gonna fall asleep in her cradle all wired up with IV lines everywhere? Luckily, I don't have to have the answer to that. It's 3 months away, and even then it'll be in God's hands, not mine....

...which brings me to a point I want to share about. Recently, I heard "God doesn't give us anything we can't handle," for the four millionth time since the day Bella was born. While I appreciate the sentiment, I disagree with the statement. Let me explain. Here is how I see it. God gives us things we perceive we can't handle ALL THE TIME in order for us to grow spiritually. For me, spiritual growth relates to the connection with a higher power, a power in which I can "give over" my troubles, fears, prayers, concerns, and that entity will in turn manage those things for me. I love the line, "God is in the results business." In other words, what can we really control? If we were really in control folks, nothing bad would ever happen to us or our loved ones, because we'd never wish it upon them or ourselves. The more of life I can entrust to God to manage for me, the more peace and serenity I have, regardless of the situations at hand.

On my own, I can't handle EB. Even Ang and I together... we can't handle EB.

It's precisely because I give it to God to handle, that in turn it looks like I can handle it as well. I'm in the delegation business. Anything too big for me... goes to God. "Here, YOU handle this. It's too much for me."

So, my line goes more like this, "God doesn't give us anything HE can't handle. It's up to us to give it back!"

Alright, other news...

Bella attended her first community drum circle at the wonderful Soul at Home yoga studio I recently told you about! A colleague of mine, David Van Dorn, hosted the event, and there were about 25 people in attendance. Bella sat on mommy's lap and grooved and bounced and smiled and shouted just about the whole time. In fact, she was more into than Ali was! At one point in between grooves, an elegant older woman by the name of Merle, who was playing the most fascinating bass drum of her own, said something to the effect of, "If anyone wonders whether or not we were designed for this [drumming], just look at that baby." To learn more about what drum circles are or where you can find one, CLICK HERE.

The molnlycke video is up! I had to buy a license to use my friend's music. No biggie. 5 bucks. Go check it out HERE.

The book is selling, slowly. Folks, PLEASE don't put it off. GO BUY THE BOOK, then go watch the video. Then, buy a couple more after you've read it to give as gifts. Seriously, I don't remember the last book I read that wasn't either a recommendation or gift. You have to give at least 2 gifts away in the next year, so kill two birds with one stone. Please. I worked my tail off for months and months to give life to that book. Please support us, and support the organizations we're partnering with. If nothing else, go read the amazing book review on the sales page. Just click here and scroll down to the review and read the whole thing. If that review doesn't get you to want to buy the book, YOU CAN EVEN DOWNLOAD IT FOR FREE to take it for a test drive! Right under ADD TO CART is a little link that says "Also available as a download." Check it out. I guarantee that if you give it 5 minutes, you'll be hooked. If you get hooked, be nice to your eyes and buy a printed version.

Okay, Okay, enough plugging... wait.. no... one more thing. =D

Pretty please tell others about the book! Whether over email, or twitter or facebook status, let people know! Just give 'em and let them click on from there. People won't know about Bella's story unless her story is shared, and I only know so many people. But, through EACH of YOU, that reach is expanded EXPONENTIALLY. I think they call it "viral marketing." It's the newest thing, except that it's not new at all. I think they used to call it, grass roots, or word of mouth. Whatever. Pass it on. Let people know about Bella. Please. Her story matters in a world of hopelessness and drudgery that is spewed forth 24/7/365 though multiple media outlets. Hers is a story of hope, and of faith. Those are two things that pretty much everyone could use a second helping of these days.

Now I'm done (for now).

Wednesday, March 3, 2010

9 months in, 9 months out!

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

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

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

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

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

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

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

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

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

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

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

Whew! On top of all that, on Thursday we launched 3 new pages on the blog here in case you haven't seen them, as well as, which Rodger, my stepfather-in-law, and I made ourselves from scratch, and.... our first copies of Bella's Blessings: a Humble Story of Providence delivered to our home! Talk about a labor of love. The book was 9 months in the making even though the story inside only covers the first three. I thought I'd have a book in hand by October 1st EASILY. HAHAHAHA. Writing, producing, and publishing your own book takes waaaay more time and energy than I realized! It was a great learning experience, though, and I'm really proud of it.

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

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

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

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


She rocks.

and she hasn't even spoken a word yet.


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

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