Ronald McDonald House, Here we come!

Quite the little airline traveler, stole my seat AND my hat!

Well, we're back from another trip to MN.

This time, it was to scout out lodging for the rest of the family Bella's BMT this summer. We flew in Friday evening, looked at 5 different properties Sat, and flew out Sunday morning. Oh, and we even planned a dinner party at the Mooreland's (founders of PUCK) on Saturday night! WHEW! Ali hung at out grandma's and Bella, mommy, and daddy made the trip. This was Bella's 4th airplane trip in her first 10 months! She's pretty easy to handle, but she is SO BIG that we can't do the lap thing any more! Holy cow, you should have seen her stretched out while napping. Our arms nearly fell off from the weight alone! Never again.

We checked out all different shapes and sizes of living arrangements. We saw brand new lofts downtown, an extended stay Marriott, the RMH (Ronald McDonald House), and two apt. complexes in St. Anthony, the town adjacent to the University just to the north. Like anything, there were pros and cons to all of them. RMH, though made it on both of our top 2 finalist lists immediately, and then from there is was an easy pick.

What's funny is that neither of us at 9 am were thinking about RMH as an option. That changed the moment we parked in front of the house.

First of all, it is across the street from a quaint little park and walking distance to the hospital. This means, that when we have to go back and forth for tests after discharge, we won't need to ride a shuttle or public transportation, which is a good thing, since Bella's immune system will be next to nothing.

Then ,we walked in through the front door and Ann, the weekend manager greets us, takes one look at Bella, and says, "Now let me guess, EB." Then she proceeded to speak personally of her affinity for each other EB child that has stayed there during this clinical trial by name. No explaining to do here.

After brunch, we toured the house... I mean HOUSES. Technically, this RMH is 4 houses connected by one massive first floor. Yet, every inch is cozy and comfy feeling. This is the complete opposite of the DORM we stayed in in San Diego atop the parking garage for Bella's G-Tube insertion. Night and day, folks. We were amazed by how different (and better!) this RMH was compared to San Diego.

I could go on and on, but suffice to say that this property is like a mini Disneyland for Ali. Also, the kindercare Ali is going to go to is also within walking distance of the house! Ang is going to work from home 4 days a week, which means she can walk Ali to kindercare, walk back, and work from our special, giant BMT suite we'll be staying in, and she can cruise over to the hospital to bring me real food (are you reading this, Angelique? wink wink) for lunch, then walk over to pick up Ali, and have dinner prepared every night of the week with Brunch on the weekends as well. Aoh, and Ali gets movie night twice a week complete with free popcorn in their own in-house theater room! KILLER. Good stuff all around.

Bella knows she can always lean on her big sister...

We are really excited, and quite frankly, I am ready to pack the minivan today and go. We are waiting till June so Bella can have her first birthday here with so many of the friends and family and faith community that helped her reach this milestone. Frankly, most first birthdays are for the parents for surviving the first year, but this one truly is for Bella. She's the one who's done the surviving. She is as strong as an ox and while she deals with blisters and teething, she is still sweet as a peach...

...until bed time... she reallllllly doesn't like the sleep thing. Someone actually called the front desk to complain at the hotel because she was WAILING at midnight for so long, that a neighbor thought she had been abandoned. No, really. The girl at the front desk said when I answered the phone, "Oh. there IS someone there with the baby. Okay, thank you." and hung up. Really. Not joking.

Get the coffee in the pot! Daddy's a grumpy bear without it!

We also want to close by saying thanks to the following people: Grandma and Grandpa, Joe Polish, Paul Ringgold, Jackie Gardella, members of the Disciple's Women's Group at church, and the anonymous donor from Harbor Christian Church. These people all donated cash or frequent flyer/rewards miles/friends & family rates to help us on our two trips to MN and one to NYC. Each trip we took, someone or ones stepped up and volunteered to help us along the way. There have been COUNTLESS examples of this generosity these past 10 months, but we just wanted to publicly acknowledge that these trips were made possible through the love and generosity of these folks. It really does take a village to raise a special needs child, and thank GOD, we have that village. What's really cool is that this village is stretched across the map, and thanks to the internet and email, we can be connected and reach out into each others' lives to lend a hand when a hand is needed. Thanks again. We promise to pay it forward.

Last but not least, if this series of shots doesn't melt your heart, nothing will...

Picture Essay from Bella's G-tube Insertion

Hi all!

Tonight's post is a little unusual. I am posting all the pictures from Bella's G-Tube insertion back in October. There is another EB Baby having one placed at the end of the month, and the family is not as lucky as we were in that their hospital doesn't have 30 years of experience operating on EB babies. So, we took tons of pics during Bella's procedure to share with the community. Originally, we took them to share with our local hospital, CHOC (Children's Hospital of Orange County), so CHOC could develop an EB surgical team, but then I got busy. At least all this work can now be used THIS MONTH somewhere else in the country, so it wasn't all for naught! Here we go:

Items to assist in securing intubation to face. I believe that is vaseline infused gauze.



Front of their EB cart that resides in the O.R.

How awesome is is that they have a dedicated cart???

Top of cart had supplies prepped for surgery. Here's a sneak peak at what was underneath... First up, bottom right corner.



Top right corner



Top left corner

Bottom left corner

Bottom Drawer... EXPOSED!



Specialty Dressings... UNDRESSED!

Dressings Drawer... what would be witty right here?

Wound Care Team. We convinced them to let us do Bella's bandages while she was under sedation. They were a little hesitant at first, but we apparently appeared "on it" enough to get access to the O.R. It was AWESOME. Ang and I make a really good team. The O.R. team was really impressed. That made us feel really good. That's a pretty qualified opinion!

Bella going under. Mask was covered in aquaphor before placing on her face. I sang to her during the process her Birth Song, and I didn't even get to the chorus before she was OUT.

Close-up of intubation set-up. There were no injuries to her head, face, mouth, or esophagus as a result of the procedure. Good job, docs!

Different view of head dressing. You can see the foam pad and air pillow better from this angle.

Close-up of surgical site. Incision was made for G-tube as well as second incision to anchor it about two inches to the center. Mepitel was glued over surgical incision and stayed on for several days. No harm done, scar healing nicely. We now use mepilex lite under button to protect against friction and absorb any drainage as the opening healed. It oozed stomach juice for several months at a slowly declining pace until now where it hardly oozes at all. We still clean the site daily with a Q-tip dipped in 50% water 50% hydrogen peroxide. the dark spot to the outside right of the button was a blister she had going in to surgery that was totally unrelated and ended up healing fine with no scar.

Little cherub out cold after surgery back in her room. Notice the IV placement was in the right foot, and yes it is a bitch for EB kids and yes they deliberated long and hard over where to do the IV. They did not use sutures to secure the IV, although (pardon my french here) an ASSLOAD of that gummy wrap you see above was used over a CRAPLOAD of rolled gauze to try to keep it in place for as long as possible. We had to do a cranial IV the week prior at CHOC (had to do three different placements as it kept coming out due to Bella being a squirmy (read: normal) baby. That SUCKED. Each placement took like 4 of us and never got done in less than 2 hours. Ugh. THIS was MUCH better. It stayed in till it could be D/C'd . How did it NOT get yanked out, you ask? ...

...because the poor girl was tied down for the next 3 days practically! No joke. Look at how each appendage is secured so that she won't a) wreck her IV and b) wreck her new button. She was a trooper through it all. Didn't hurt that we kept the happy drugs FLOWIN'. No time to be puritan about pain meds as discomfort causes maximum squirmitude. Yes. That's a word. No. you can't use it in scrabble.

Here's the little trooper recovering well enough to have her arms released! (how nice of us, I know) I recommend lite under the button rather than mepitel as it often (as was the case here) got stuck to itself and would bunch up easily. Double sided tape will do that to ya!

Alright, I hope this helps those of you who are either considering this procedure or preparing for it. It was the BEST THING we've done for Bella to date. As Dr. Eichenfield, the eminent Pediatric Dermatologist in San Diego and resident expert on EB said to us,

"The key to EB is nutrition, and the key to nutrition it the feeding tube."

Before the tube, we STRUGGLED to get 20-24 oz a day into Bella, and I mean STRUGGLED. It was awful. Feeds frequently took 90-120 minutes and had to be timed so that Bella was dozing in order to tolerate the bottle. If she was too alert, no deal, and if we waited too long and she fell asleep at the beginning of the bottle, no deal.

After the tube, we got 30-36 oz a day into Bella without so much as a whiff of trouble. Any time she couldn't or wouldn't tolerate a bottle, NO PROBLEM, snap that tube into place and go! Late night feeds were done without having to wake her. That was awesome in and of itself! But most importantly, we got her caloric intake up above what her GI doc and nutritionist wanted, and feeding became fun again! No more knock-down, drag-out bottles.

Now, 6 months later, Bella is 90th percentile in height and weight and 110% Weight to Height ratio, which is RIGHT ON for a typical child at her age. In other words...

SHE IS THRIVING!

We are extremely blessed that all is going so well, and that all went so well with this procedure. We recognize and give thanks that we have walked through the Valley of EB with a lot of success to date, and do so humbly in the memory and in the face of so many other EB kids who haven't fared as well. We take our successes with thanks and humility with full understanding that at any moment it could all change for the worse. EB is like that. Every day is a gift. Period. Thank you all for walking the journey with us. If you are reading this, you are walking this journey whether you realized it or not. We see you there, we feel you there, and we give thanks that you are there. You lift us up when we are too tired. Thanks for that.

Blessings,

Tim

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?

Hummmmmmmmmmmmmmmmmmmmmm................

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,

Tim

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 www.bellasblessings.com 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 loudest...it 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 www.bellasblessings.com, which Rodger, my stepfather-in-law, and I made ourselves from scratch, and....

...got 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.

Bella.

She rocks.

and she hasn't even spoken a word yet.



LET THIS BE A LESSON THAT HEALING PRECEDES AND TRANSCENDS LANGUAGE.

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.