Wednesday, January 20, 2010

Good Start To The New Year!


Sorry, it's been busy around here. Angelique is currently in Texas on business; I leave for Vegas on business Friday, we both head to NYC with Bella on 2/2... not to mention I am g-r-i-n-d-i-n-g through the last of what I can edit before I turn Bella's Blessings: A Humble Story of Providence over to an editor for the final (cross your fingers) draft to be uploaded to for printing! I give up; I've gone as far as I can with the editing. I am stuck 5 problems that I cannot find the answers to despite days and weeks of trying on my own. Really, I have no business taking the editing as far as I did. It would have been more efficient to hand it off sooner and pay my editor, but I have more time than money in my pocket right now so... I thought it would be romantic to take the book all the way through the creation process myself... you know, like delivering a baby with no pain meds... Well, I've been in labor for weeks (actually months) now and I'm ready for the epidural! Give it to me!

Okay, okay, enough about all that...


We have a consultation on Feb. 3 with Dr.s Chairo and Christiano in New York City. We fly in on 2/2 and out on 2/4. We're very excited to return to manhattan; it's been a few years. We also can't wait to hear what is so special about their experiment and why it would be better than going to MN. We spoke via email with Dr. Wagner just this week and let him know we were headed to NYC and he thought that was a great idea. We also penciled Bella in for transplant in MN for June 1. That way, at least we're in the queue in case Columbia fails to win us over. We feel very confident in Dr. Wagner and the entire tx team there in MN. We're going to wait till June 1 because Bella's first birthday is May 27, and we want to celebrate it here in Orange County with so many that helped her (and us) make it this far. We would then be there until mid October most likely.

check out the look Bella's giving Ali...too funny


Bella is really struggling with itching. She has open wounds on her left knee, shin, ankle, heel, foot, and arch right now, and they are driving her NUTS. She GRINDS her legs together in an effort to scratch the itch and in the process, is giving herself more blisters on her right leg as well as exacerbating the left. Worst off, she does it IN HER SLEEP. We do the best we can wrapping and isolating the legs from each other, but you can't stand over her 24/7 and hold her legs apart.

Angelique has developed a BREAKTHROUGH in the A-B-C hand wrap for EB kids! We're gonna make a 2 minute video and upload it to youtube soon enough. Bella had been falling behind in her fine motor skills because her hands were so wrapped up. When we went to the Early Development Assessment Center, the PT asked if there was a way for us not to wrap the palm of her hand so much. It was the gauze criss-crossing the palm that was preventing Bella from grasping and gripping. So, Ang figured out a way to wrap the hand virtually the same way, but with the palm wide open, save for 1 single 1" gauze strip. Well, the results have been nothing short of AMAZING. Bella's ability to grip, grasp, and even pinch have exponentially skyrocketed from before the EDAC Consultation! She almost pulled my plate off the table recently at dinner, and she reaches for EVERYTHING now! It's as if she knows she CAN hold something, so she WANTS TO. It is so exciting watching her play with toys, and transfer them from hand to hand. I remember the disappointment in our Pediatrician's voice at her 6 month appt, when he asked if she was transferring toys from hand to hand and I said, "No." "Hmmm." was the reply as he checked off some box on his little clip board. Well Dr. Bindra, ASK ME NOW, ASK ME NOW!

In other news, Bella has been awarded PATIENT OF THE YEAR from Molnlycke Healthcare, the manufacturer of most of Bella's wound care supplies! Crazy, huh? We got the call from the Territory Sales Manager that Molnlycke is having their annual sales conference/meeting in Phoenix in late Feb, and they would like to fly the family out there, put us up in a hotel, and do a 30 minute presentation along with Betty, our PT from CHOC ( Who we LOVE and can't wait to hang with again). Then, they're going to give us some sort of Honorarium to help with her ongoing health care costs! Pretty neat, huh? We're also talking about them buying 100 copies of Bella's book for all the attendees... say a prayer that works out, and that I get the book done in time! We are totally blown away by this generous gesture, and appreciate the opportunity to share our story. GOD IS GOOD! ALL THE TIME!

Anyhow, there is so much to be grateful for in this new year, despite the all the suffering and strife that co-exists, from our own wound care table, to the world at large.

Is it ever any different?

Thanks for being with us. This journey wouldn't be the same without you.


  1. i can't find ur contact info!!! call me!!! or page me or email me :) :) i am so excited about the monolyke conference next month! i've been searching all over the place for your phone #'s!!!! can't wait to hang out and see your family again soon!!!!!!!!!!-betty

  2. tim it makes my little inside beings smile so big to hear all this great family news!!! lots and lots of love to you, ang, ali, and bella xoxo, saradeeeeeeee

  3. That was a really good post. It helped me to make sense of some of the issues with the subject.