Sunday, August 16, 2009

Phew...the Weeks FLY By...

Check out that Smile

phew...the weeks FLY by...

The good:

I think (knock on wood) that the new "ABC Wrap" technique with 1" gauze on Bella's hands combined with a mitten is WORKING to keep her hands blister/wound/ and webbing free. We got a gift box from someone at church that had wonderfully thin mittens in it so we can actually hold Bella's hands and feel her squeezing our fingers with hers! When this is done in the middle of an attachment gaze and some doesn't get any better.

Bella slept from 12:30am to 6:30 am last night! WEEEEE!!!!

We switched (again) formulas to Nestle Good Start with Probiotics and this has seemed to get her painful gas under control finally! She is still on Zantac and Culturelle twice a day, but the Culturelle has different probiotics than the formula, so we're thinking the double action is really helping.

WE WENT OUT ON A DATE JUST ANG AND I ON TUESDAY NIGHT!!!! WOOOHOOOO!!!! THANK YOU THANK YOU THANK YOU to Grandma and Grandpa for taking Ali to spend the night and then go to the aquarium the following day, and thanks to our next door neighbor Becky for watching Bella! It was AWESOME! Don't get us wrong, we love our kids, but we HAVE to water the marriage FIRST and that has been challenging because it is so easy (mainly due to lack of sleep) to just take one day at a time and not plan out anything beyond the necessary, but GOD LOVE Grandma and Grandpa. They called us and asked if they could take Ali on Wednesday and pick her up Tuesday night. Once we had that in place, making the call to Becky wasn't so hard, and bless her heart for agreeing on one day's notice!

Susan Hermes contacted us today. She is the mom of an 8 yr old in neighboring Irvine also with DEB. She gave Ang lots of good insights and info.

We have a new contact at Byram...our Woundcare supply distributor. Our original salesperson was great out of the gate, but I don't think its her job to work with us ongoingly. So, when we were having trouble getting any gauze, after a month of patiently waiting, I threatened to fire them, and the next day the Customer Service Supervisor called to say he would be taking over taking care of us. That same day, what I had been waiting a month for arrived.

(This was such a good exercise...when I started typing, I was tired and run down. Then I wrote, "The Good:" and thought to myself, "Hmmm, so what's been good this week?" Then it started to flow. It was all up there in my head, but I just wasn't present to it, so it seemed like it wasn't there at all. Next time you're in a funk, write down, "The Good:" and make yourself write 5-10 things that apply. There in there!)

The bad: (yes, it's not all pollyanna)

Bella's infant hair is falling out on the sides of her head, so that nice friction buffer called hair is no longer protecting her delicate little scalp. She has tracks of blisters and wounds on both sides of her head and one heck of a gouge right under her left eye. The blisters on her scalp are weird. They are hard, and don't drain. They are often discolored and look more like psoriasis than EB blisters. Weird.

We've been trying to use breast pads for elbow, heel, and knee protection once blisters have healed, because Bella rubs the skin off these spots with great ease, but they just aren't working on the elbows. She continues to re-injure her elbows despite the pads, so we have to keep looking for a reusable, economical solution that will stay on and protect. The mepilex foam dressing we use when there is a wound there is awesome, but extremely expensive, and I don't want to burn through it as a prophylactic.

The inside of Bella's mouth is a mess. So many giant blisters. I do a good job of blocking it out and not imagining what that must be like, but it is hard when every bottle feed seems to begin with her arching her back and stiffening up like a board while crying and trying to suck simultaneously. The best feeds are the ones when she's still asleep, but those seem to be fewer and fewer lately.

Bless her little heart, Ali tried to help Bella with her binky (pacifier) tonight and rubbed a good chunk of Bella's bottom lip off in the process. Ang and I were loading groceries in the back of the minivan so we didn't see it go down. Ali has been politely relieved of binky command indefinitely. She is such a good helper and has a heart of gold, she had no idea.

That's enough.

Throughout this journey, we have recognized that there will be ups and downs and there have been. But really, it's all GOOD in the end. Life has been so much more...well let me give a couple of analogies...

Life just went from AM to FM Stereo
The volume on the Life Channel just went up to eleven! (think Spinaltap)
Life just went from a black & White with rabbit ears to HD on a flat screen!

It's all just a bigger game than before. What I have learned is urgency. The dreams of "someday"...they need to come NOW.

Live your life like your life depends on it.

God bless and have a wonderful day today (whatever day it is that you are reading this!)

The following is related to the CARE PAGES blog:
P.S. I will be transitioning over to in 2 weeks. Beginning on my birthday, AUGUST 31, I will only be posting to that site from here on out. Please go there and sign up as a follower. That way, you can elect to be notified when there is an update, just like on this site, but that site allows you to listen to music, link to videos, and even make a financial contribution if you feel called to. Plus, you can forward that site address with ease to your friends and family and they don't have to log in and become a member to read Bella's story. But, PLEASE PLEASE PLEASE sign up as a follower. We don't want to lose you!

I will continue to warn you of the upcoming transition so you have ample reminders! IT'll be like switching from analog to digital TV-oh wait, that didn't go well...nevermind! Just go to!



  1. This brought tears to my eyes.... guys are so strong and your little girl is so beautiful.....God has some amazing power and I definitely see it in you two. Thank you for shining thru in the midst of such a big trial....very inspiring.... You have my prayers and support and I know great things will happen for u all thru this...

    All the best,
    Kimberly (aka: Matt Fischer's lady, Audrey's mom)

  2. I hope you don't mind that I added a link to your blog on my family blog.
    I have a lot of praying friends...and they will add your family and Bella to their prayers...
    (I can un-link it if you want....)

  3. From Care Pages:

    Posted Aug 17, 2009 3:39pm
    by Russ Baldwin

    Why don't you just make 10 the loudest? Yes, but this one goes to 11.

    We will continue to pray for strength, love, and peace. Love & Prayers
    Russ & Jen
    Posted Aug 17, 2009 9:39am
    by Angela Ostermann

    what if you bought one of those super soft plush baby outfits, you know the fuzzy kind. and did a little doctoring with the material, cut it in strips, pad it and line it, and maybe sew a snap on it or something? You crafty ang?? Would that work?
    Posted Aug 17, 2009 8:12am
    by Trazona Montague

    I will be sure to switch to the newer, better channel. God Bless!!!
    Posted Aug 16, 2009 2:35pm
    by vicki hurst

    Hugs, prayers, thoughts and positive energy out to you all. Thanks for sharing your journey along with the ups and downs.