Friday, June 26, 2009

What a first month!

Bella turns one month tomorrow. Whew. What a first month! I know the 1st birthday party is more for the parents...can we have a first month party for surviving this past month??? :) I foresee things getting easier in the immediate future, however. God willing, Bella will continue to be stable and relatively calm at home. Developmentally, she won't be doing too much in the next couple of months in terms of walking/crawling/eating/etc. so that should give us time to really get her healed and strong for when she is ready to become more physically active.

What a gift she is. I know that breakthroughs in health and vitality are on our doorstep because of our devotion to creating the optimal nurturing environment for such a fragile being. Dr. Young puts it simply. Think of a fish in a fish bowl. The health of that fish is greatly determined by the cleanliness of the water it lives in. Now think of your body as the fish. Your body is 70% water. Bella's is much higher...closer to 90% water. We (our cells, organs, tissue) live in our own fishbowl. If you don't keep the water clean, the fish's health suffers, right? Same with the fluid in our body. Sounds logical. Sounds simplistic even. Yet, ignorance is BLISS. As I continue to drink acidic beverages daily (soda, coffee) and eat foods my body is not designed to digest (animal protein, sugar, yeast), I wonder why I am exhausted by 3 pm every day, I have chronic pain, and get recurrent headaches, injuries, and soreness.

Thinking of Bella's optimal health has made me think of my own in a new way, and as I learn more each day about nutrition, I am saddened a little by what I am choosing to give up, but yet inspired to finally honor my body as it is designed. I see a healthy family full of vitality and strength: physical, emotional, and spiritual strength. That's worth making some changes for. My affirmation is, " I am restoring the structural integrity of my body, mind, and spirit."

For example, last night, we switched to cloth diapers. WOW, THEY ROCK! They are so vastly superior to disposable...I can't even imagine Bella (or us) suffering one more day in those awful plastic nightmares. Not only are the cloth diapers 100% softer, and more comfortable, Bella's butt looks better today than it has since she popped outta her mommy! No more lathering aquafor all over diapers and bottom every diaper change. No more blisters on her thighs from velcro. No more ripping out inner elastic waistbands 10 times a day. No more cutting oragami shapes outta the velcro closures so they won't cut her legs any more. That stuff was L-A-M-E.

So, I am heartened by this first lifestyle change going so well. I look forward to more of that.

Other news...

Yesterday, I had to pick my first fight for Bella. Nothing like trying to get an appointment to see a referral. The referral was for a GI Doc, an integral part of a DEB patient. The customer service rep who was handling the scheduling tried to explain to me that the Doctor was booked through August, and I would have to see another GI Doc, and that they were all the same. Bella could see one next week. If they are all the same, why is Dr. Grant booked through August and the others available next week? I wouldn't have it. I simply told the gal, "NO. That's NOT how this is going to go. You are going to figure out a way for my daughter to see Dr. Grant. period. " "Well, I'll have to get my supervisor on the line." She quips. "Fine with me." That was 25 minutes into the call. Within 5 minutes, the supervisor understood the situation, said she would email the Doc and see what she could do. She called back today to say they moved their entire Monday schedule up so Bella could get in at the end of the day. Yeah, this Monday.

Pick your battles, folks, and never let ANYONE sitting in a call center tell you how it's gonna go.

So, Monday we go to the GI to check out Bella's reflux issues. Reflux comes on early and often for DEB kids, and she has been having a lot of symptoms, so no time to waste. She doesn't need another day of reflux damaging her esophagus causing any unnecessary scarring.

Still other news...

I got in touch with a woman locally who heads an EB support group who invited us to an EBMRF picnic in Malibu this Sunday! EBMRF is the west coast version of DEBRA, which is based in New York. It's a hike, but it's being thrown by David Arquette and Courtney Cox, so...pack the minivan! We haven't made up our mind yet. Malibu is a hike from Orange and we haven't set out on a trek away from home for that long yet. We'll see. I think it would be cool to plug in...but I'm the networking junkie in the family.

Oh yeah, Bella sat through her dressing change today AWAKE for just about the whole thing! Her foot IS SO CLOSE TO BEING CLOSED!!! Aw's such a victory. Anyhow, her being able to chill out awake was a good sign that since she pretty much has no open wounds, the dressing changes are not as painful for her as they were, say, two weeks ago, or even last week. C'mon, Bella! Heal, baby, heal! Heal, baby, Heal!

Okay. Time to go pass out. Bella is out cold after being up both of the past two nights. I can handle one-all nighter okay, but back to back...I'm not the night owl I once was. This rock star is in retirement!

Best to you all. Thanks for the continued love and support. It is a bit overwhelming...but we LOVE it and welcome the overwhelm! Thank you for contributing to us so generously with your prayers, intentions, thoughts, emails, cards, food, errands, and donations. I learn of a new church EVERY DAY that has added Bella to their prayer list. Literally from coast to coast, people are praying for our Bella. We are so touched and inspired by this. It gives us the strength to stand in the face of DEB and continue to proclaim...say it with me...

One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

May the unending abundance that is God's love be with each of you this weekend.


  1. Comments from Care Pages Site:
    osted Jun 27, 2009 9:19pm
    by Doug Gleason

    Blessings aboud! It's apparent that you all are facing this with tenaciousness, Go Bella Go! All our love and prayers...
    Posted Jun 27, 2009 2:37pm
    by Erica Thomas

    What beautiful two new posts. We're so happy that Bella is healing and that normalcy is around the corner or in the rose bushes! :)

    Continued thoughts and prayers are with you.
    Love Jay & Erica Thomas
    Posted Jun 27, 2009 11:26am
    by adrienne sandusky

    Tim and Ang: Thanks for the updates, It is a so wonderful to read of the Miracles God is performing each day for Bella...and the two of you. We prayed especially for her in my small group (ladies from ALL churches attend) Thurs., so I am sure they went to their "home" church and put her on their prayer chain....amazing!!GOD IS GOOD...ALL THE TIME!! Love Adrienne
    Posted Jun 27, 2009 11:02am
    by Barbara Dailey

    oh I forgot - I too have had a few battles to get Walt the immediate help he needed- that too can be done - you never want to take know for an answer when your heart knows better. Barb/Walt
    Posted Jun 27, 2009 11:00am
    by Barbara Dailey

    Tim - I relate to you as we are going through some of the very same things you are, including wound care for Walt threee times a week, changes in nutrition leaving out sodium, sugar, animal meat, etc etc, We have been at it for three weeks and Walt is improving every single day - every day we have a complicated regimen to follow and the Dr. visits every single afternoon. and so we and you know - that once again God will never take us to a place or give us challenges that he does not feel we have the ability to handle with his blessings and help. And in spite of extremely difficult times, everything works toward the good - love you guys - miss you and hope to see you before too long. Barb/Walt

  2. Comments from Care Pages Site, Part 2:

    posted Jun 27, 2009 10:10am
    by Carolyn Rhinehart

    The picnic in Malibu is an opportunity that has been placed before you, do not overlook it!

    Posted Jun 27, 2009 8:58am
    by MB Young

    Love the pics, Tim! They are precious and help keep her face in mind when I go before Our Lord at Mass each morning with your vision and intentions. "Little Miss Bella" is entered in our parish prayer book as well - my pastor even stopped me the other morning to ask, "How's our Little Miss Bella today - she and her family are always in my prayers." Remember our Lord created EVERYTHING from NOTHING - He hears your vision. Among my favorite scripture is 'Seek first the Kingdom of God'. Not only His Heavenly Kingdom, but the life He has planned for us here. His promise is if we surrender our human will to His Perfect Will, He'll take care of the rest - no worries. Know that you and Angelique are doing all He asks as Bella's earthly parents and that her Heavenly Father has the rest. Take comfort in His Perfect plan for your family.
    Posted Jun 27, 2009 1:49am
    by mary amen

    Thank you for such an honest and heartfelt account. Much love and prayers from HB. Keep rockin and taking care. oxoxo to you, Angie and the girls. Mary
    Posted Jun 27, 2009 1:24am
    by Kathryn Fulton

    Love it love it love it! Thanks for the updates. It's just incredible to read your story. Bella is such an amazing gift. Strength and love to you all!
    Posted Jun 27, 2009 12:38am
    by Megan McGuire

    I love the new pictures of Bella - what a beautiful, soft little baby sweetheart. Her eyes look so wise. Also, it is so wonderful to read a few posts in sequence full of really positive news for all of you. It is very gallant of you, Tim, to support Ang through the new nutritional plan and probably great for Ali, too. I hope your family can attend the picnic - it may just provide more points of providence and new contacts and information are not a bad thing. Our thoughts and prayers are that one day Bella will remember, "I was born with this really rare skin condition, but when I came home from the hospital it just went away." All our love, The McGuire family.
    Posted Jun 27, 2009 12:07am
    by Sara Cooper

    awesome. just awesome.
    good for you in winning that battle...many would simply accept it.
    it's no wonder bella is thriving...
    and i am typing with 1 hand, thus the lack of capitals...molly just crashed and i am enjoying a minute of snuggling (and snoring) before putting her down.
    hope you catch up on rest tonight!

  3. Hi. I just started to read your blog today, so I'm a year behind. But I just wanted to share something... People survive things that the human body was never meant to survive. Five years ago, I was going to die. The doctors said that my liver was damaged beyond repair, and that there was no way that I was going to get a transplant (I had damaged my liver by taking a huge paracetamol/acetaminophen overdose...) But somehow, maybe trough other peoples prayers for me, my liver decided to heal itself to the point were I could live.
    A couple of months ago, I nearly bled to death. The doctors said that due to the large amount of blood loss, I would most likely have irreversible brain damage. Yet here I sit, fully functional, writing to you.

    I guess what I wanted to say is... There is always hope! The human body is stronger than we ever can imagine. The doctors aren't always right!
    You're in my prayers.

    /Jennifer, Sweden