What a Celebration!

On Saturday, May 29th, we celebrated Bella's first birthday in style. We were surrounded by "the Three F's" as I like to call them: our Friends, our Family, and our Faith community. We threw the party at our church fellowship hall and the food, cake, and fun was enjoyed by all, especially Bella!

We had the outdoor playground open for the bigger kids, the nursery open for the younger kids, soccer balls out on the lawn, and slide shows and video montages of the past year running in the main hall for all to enjoy, no matter what their age.

There was just so much JOY present. It was awesome.

Living through a year of Epidermolyis Bullosa has been the most challenging and rewarding experience to date. It has amplified everything in life. I don't take ANYTHING for granted anymore. The love felt from everyone on Saturday was so wonderful. We go to Minnesota filled with love and support from everyone around us. What a great feeling. Even the guys I play Sunday afternoon soccer with are praying for us.

In other news, PLEASE check out this month's Featured Partner! It's DebRA!!!! YAY! We are so excited to continue to return the favor by raising some more money for them this month. They have been so good to us since day 1, and last month, not only did we raise enough money to donate 100 books to their New Family Boxes, but we raised several hundred dollars over and above what was needed for the book drive! Well, let's keep it comin' this month!

We are sad that we are going to miss the Patient Care Conference DebRA is holding in Cincinnati this month. It's the first week/weekend we arrive in MN. That would be a little too much to bite off. It wouldn't be so bad except it is only held once every other year, so we are sad we will have to wait 2 YEARS to meet our community face to face at last.

Meanwhile at home, we continue to prepare for next week's pilgrimage to MN. I can't believe by this time next week, I'll be in Salt Lake City driving the minivan alone MN. There is still a fair amount to do, but we're getting a lot done every day. Thanks to my parents for coming out from CO to participate in the party and help here at the condo. Just watching the kids play while I run around banging out honey-do's is such a help.

I will close by asking you to comment on this post. Each family that has gone through the BMT has communicated in their own style on their blogs and have shared a different angle or view of the journey. We are asking you to tell us, "What aspects of the BMT journey would you like to read about specifically?" Please tell us. We plan to be a clearing house of information and inspiration throughout this journey. SO many gave so much to us through the web in our first days, weeks, and months, now it's our turn. So, PLEASE, comment.

Peace!

Happy Easter!

Well, we've made it to Easter, and we have so much to be thankful for. We spent Saturday at Grandma's and Grandpa's house with Bella, Ali, and their uncle Steve and aunt Dina and cousin Wil, and new baby cousin Molly. It was a beautiful day, and the older kids had an easter egg hunt and the babies, well, they did their thing as babies. Eat. Sleep. Lounge. You know, the good life!

Ali Delighting in the Easter Egg Hunt

On the book front, we are excited to announce our featured partner for the month of April, MUSIC TO HEAL. Music To Heal is a non-profit organization that funds music therapy programs in children's hospitals in Southern California, including CHOC, where Bella has spent 17 days this year, including her first 12 on the planet. Please read up more about them on our Featured Partner page! I had the opportunity to provide some training to their volunteers last week and they are just a great young organization full of life, passion, and a giant heart.

On the wound care front, things have been going very well for the most part, until today. We had our first sign of a possible Pseudomonas infection in one of Bella's wounds. When I took off one of her dressings, the underside of the dressing was neon green, a color we have never seen on her. Immediately, Ang thought it might be Pseudomonas because after reading about it in a number of other EB blogs and websites, she remembers that is was described as characteristically blue-green, bright green discharge. The interesting thing is that the wound itself didn't look at all infected. I guess the dressing (Mepilex Lite) must have wicked it all away from the wound? Still being relatively new to all this, we cleaned the site twice, but bactroban on it, and covered it this time with Mepilex Border Lite. We'll check it daily to keep cleaning it. I read on one site that Pseudomonas is antibiotic resistant, which if that's true is a drag. We'll be starting to add vinegar to subsequent baths to upgrade the cleansing campaign.

On the Transplant Front, we are officially beginning Bell's "work up" on Monday June 14 in Minneapolis, MN. It will be about two weeks of consults and tests, and then Bella would be admitted to the BMT Unit approximately on June 28. Ali will have her stem cells harvested around July 5th or so. Of course, these dates are approximate, but we are full steam ahead go for the 14th. Ang, Bella, and I will return to MN later this month to finalize lodging, then I'll drive the minivan packed the week prior to the 14th and Grandma and the girls will fly up that weekend. My goal is to have us unpacked and moved into wherever we end up by the time they arrive for the smoothest transition for everyone. I'm really looking forward to driving to MN alone! The last long distance trip I took alone was from CT to AZ in 1995 and it was the quietest 7 days of my life. I felt like I stepped off the planet for a week and just hung out with God. I didn't hurt that I had no radio in my car. We'll see if I choose to crack out on a bunch of books on CD or go for the monastical journey again. Which do YOU think it'll be?

How come I don't get to collect Easter Eggs???

Can I just also share my fears with you real quick? These are things you can pray for as we prepare for this journey. I know that these are just my own fears, but they linger and fester, so I would like to turn them over to you collectively to pray for. Thanks! I worry about Bella and how she wrestles so violently in bed when falling asleep. How's that gonna go with a Hickman line in her chest? I worry about Ang having to focus on her job in a new city each day while her baby is going through such an ordeal, and how much that will weigh on her. I worry about how we will keep Ali happy given I'll be in the hospital room 24/7 and Ang will be working full time. I worry about how I am going to keep my sanity in that hospital room for 50 days straight on little to no rest daily.

Thanks for taking those off my shoulders. I am reminded that this has always been beyond my control, and all of these fears are from me wanting to know how it's all gonna turn out before it happens. I am reminded of the quote, "God is in the results business." I just love trying to take back control over the outcome of everything in my world. Oh, man, that is mentally exhausting, though. Thanks.

I have to take a minute to publicly gush about Ali. Ang was away on biz this past week, and in the past, Ali would seize the opportunity to really out me through the ringer while mommy was away. Well, whatever it was, she has currently gotten it out of her system, and has just been an ANGEL with with Bella and me. I think I gushed about Ali last post, too, come to think of it. She's just been amazing.

Okay, outta here for now. Please go read about our new partner, MUSIC TO HEAL. They are very inspiring, especially because the founder is just starting his third year in med school! Get to know them. They rock. I am just so inspired by both these guys and PUCK as well, and thrilled to be making a difference in the world with them, albeit small here in the beginning. At least we're doing SOMETHING.

Happy Easter to you all and good night.

Happy New Year!

Bella's first gift from Santa!


As we all look back on 2009, we can truly see a wide array of events that have occurred to all of us, either individually, as a community, as a nation, or as the planet. As we consider each event, we tend to assign a value to the event i.e. it was "good" or "bad". The news outlets are chock full of articles about "the best" and "the worst... of 2009." I guess some of those valuations could be "objective," (i.e. the stock market went up or down, Bella was born, etc.) or "subjective" (i.e. Bella's condition is a blessing / curse). I am grateful that we can assign those valuations ourselves.

I have seen so many miracles this year.
I have seen trials and tribulations, too.
But what I am most grateful for,
May be different from you.

You may or may not believe
that it's all up to you
either way, you're right
we know this is true.

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

I saw birth and death
happiness, suffering
I saw some dreams come true
while others were vanishing

How do we make sense
out of all of this mess?
What kind kind of compass
Do we use to progress?

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

What does the new year bring
more heartache and pain?
or more promise and hope
more loss or more gain?

Remember the three F's
Friends, Family and Faith
Inside of each you will find
just what you need

For when you are down
and the world's knocked you around
just reach out a hand
and believe in the sound

of the hand reaching back
it will always be there
in one form or another
to help, love, and care

but don't be surprised
if it's not who you think
that comes to your aid
when life makes you blink

just be grateful a hand
is in front of you now
take it with humility
and you will find how

to make it another day
to make it another way
to make it and say
Thank you
Namaste

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

****

Well, that just popped out. Sorry for the diversion. When it hits, just gotta flow with it.
Man, I am so grateful I've learned to let God flow whenever God knocks. HAHAHA... wait a minute. Let me rephrase that.

I am so grateful that sometimes I have the presence to listen WHEN God knocks.

Okay... now for the actual update already! Geeeeez....

We had our 7 month appointment with the Early Development Assessment Center on Tuesday. It was over 3 hours long, but it was totally awesome. We met with an RN, PT, SLT, SW, RD, and MD. (Registered Nurse, Physical Therapist, Speech and Language Therapist, Social Worker, Registered Dietician, and Neonatologist). They did a PT/OT/SLT assessment and here's where Bella is at:

Cognitive Skills = 6 months
Receptive Language Skills = 9 months
Expressive Language Skills = 8 months
Gross Motor Skills = 4 months, 10 days
Fine Motor Skills = 4 months, 10 days

Weight = 20 lbs
Height = 27"

The dietician was thrilled with where Bella has come since getting her G-Tube. Bella is 2% above the ideal weight for her height at her age. Remember those 90 minute wrestling matches - I mean bottle feeds - and only 20-24 ounces a day? well, she's been getting 30-36 ounces a day since early October and it brought her from 50th percentile to 75th percentile in weight for her age. The catch is that she is 95th percentile in height, so she needs to have more weight on HER than on a smaller framed kid the same age to be proportional. Factor in the constant need for extra calories for wound healing and the fact that if we do the BMT, we want her as healthy as possible going in, the dietician told us WE ARE RIGHT ON TRACK!!!

That was possibly the best news of the day. I am reminded of Dr. Eichenfield's quote from when we met with him in SD in October...

"The KEY to EB is nutrition, and the key to nutrition is the G-Tube"

Having to endure certain people's repeated questioning of the G-Tube use has frankly been tiring on us, so this validation was well needed and, as it turns out, well deserved.

The other results didn't really surprise us, either. The one stat that looks lower than it probably is is cognitive. The SLT explained that because of Bella's deficiency in fine motor skills, the assessment for cognitive is skewed because what they observe to measure cognitive development relies on use of fine motor skills.

We did learn that Bella has an overall weakness across her entire left side. We didn't realize this. Between the left leg and the placement of the G-Tube (which is placed to the left of midline in the abdomen), her left side has been injured and/or healing since day one (literally).

The cool thing was the PT gave us very specific ideas for exercises to address the global deficits as well as the hemispheric deficits. When the Regional Center PT came out, she was really intimidated by Bella's condition and really didn't offer too much. The PT at CHOC was at the other end of the spectrum, where she was thinking about what Bella could do instead of what she couldn't do.

Other news:



Ali pumping iron with mommy's new hand weights

Christmas was a blast, but perhaps the real holiday miracle was the following Sunday. We drove to my brother's in Phoenix for their baby's baptism. At the party afterward, we watched as his little girl, Liesel, and Bella played together while Paul and I held them. They were both born in May. Watch the video and cry, because this was a LOOOOOOOOONG time coming. My brother and I have had a tenuous relationship over the years (that was very diplomatically put), and for our families to come together like they did on Sunday, it was our Christmas Miracle. It was the type of thing that for many years, just seemed impossible. Cheers to you Paul and Heike, we love you, and Liesel is an angel we are honored to know and help nurture over the many years to come.



Christmas is really about celebrating new life, and with our two little girls sharing their first holiday together, the truest spirit of Christmas was fulfilled on that couch.

Now, what about 2010?

How do YOU say it will go?

After all, it's really up to YOU...

...and God.

Here's how to balance THAT all out:

Pray like it's all up to God, but work like it's all up to you.

YOU are in the work business, GOD is in the results business.

May 2010 bring you everything your heart desires,

The Ringgolds