Glad today was only a day.
Too fried mentally and physically to expand too much tonight.
New big blister on left thumb. Imagine you had a blister that went from the back of your fingernail to the base of your thumb and that it was as wide as your thumb and as high as the thickness of your thumb. All in one day. Fingers are tough because we have Bella's hands wrapped 24x7 and can't see new blisters forming until the next day's dressing changes. We remove yesterday's bandages with anticipation to see if wounds are getting better, and in the case of fingers, if dressings are staying on her tiny, wiggly, lubed up fingers.
Thus the game of EB, one step forward, one step back.
THe good is that DEBRA is flying a volunteer out to spend an entire day with us later this week. She is bringing tons of information, dressings, diapers, and wants to observe our dressing changes to offer advice....we get her ALL DAY for ... um ... free. This DEBRA group is pretty amazingly funded and organized to provide such personalized and in-depth attention.
The volunteer also wants us to get the Stanford Biopsy results by the time she arrives so she can counsel us on which form Bella has. So, focus your intentions and prayers that the test is done and we get the results tomorrow and that the results are delightful. We need a miracle. We are praying for the version of the disease that children grow out of. Thank you for focusing on this tonight/today.
Okay. need sleep. Bless you all.
Tuesday, June 16, 2009
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Comments from Care Pages Site:
ReplyDeletePosted Jun 19, 2009 1:19pm
by Cisa Payuyo
Praying for healing and mercy on Bella and the whole Ringgold family. Surrounding you with love and comfort.
Blessings,
Cisa Payuyo
Posted Jun 17, 2009 9:10am
by Tracy Seem
Hang in there, you are all doing so well.
We all have Bella in our thoughts and prayers and hope her biopsy results are encouraging.
Lots of love, Tracy Jon and the boy's
Posted Jun 17, 2009 8:48am
by Angela Ostermann
Hi Guys! Hoping to hear that Bella's thumb has made a good head start towards healing, praying for it! Also praying for the best possible biopsy results. Keep your strength up, give yourself permission for a break, take care of eachother.
xoxo
Angela
Posted Jun 17, 2009 8:15am
by Robin Setto
Dear Tim, Angelique, Ali and Bella,
Thank you for taking the time to keep posting the status day by day. Stay strong our friends, stay strong.
Michael and Robin Setto
Posted Jun 17, 2009 12:28am
by Brianna Peckham
Tim and Family,
I look forward everyday reading Bella's updates as I hope and pray for her and your family. You are all so strong and continue to remain positive.
Much love,
Brianna
Posted Jun 16, 2009 8:10pm
by Lauren Teger
A prayer for the Ringgold family:
There is but one God operating throughout the Universe. This is our Source and our Strength. We rely on It's blessing through all our difficulties and know that our family is duly and unconditionally loved. We use this Source as a beaken of light to wash over Bella and cure her dis-ease. Any thought or indication that Bella is not healed is dissolved effortlessly by God and replaced with all the resources and opportunities to bring wellness upon Bella. In order for this prayer to be so; we must all believe from the bottom of our hearts in this single, unending truth of a loving Presence bound by nothing, but goodness expressing through us on behalf of our angel on earth, Bella. ~~Virtual hugs, Lauren Teger :-)
Posted Jun 16, 2009 6:09pm
by Shane Hamilton
Hi Tim, I just wanted you to know that "the Boys" did great at the performance to "Born to be Famous." It was the hit of the night. I will try to get you a copy so you can see it.
Good thoughts and prayers are being sent your way from all of us at The Country School.
Shane Hamilton
More from Care Pages:
ReplyDeletePosted Jun 16, 2009 4:52pm
by sam b
Tim. Still praying and practicing for you all!
Sam B.
Posted Jun 16, 2009 3:30pm
by Brian Barr
T and A,
There is a continuous hum of prayer for Bella and she is cupped in God's hands today, safe, beloved.
But, just for you two, "There is a Balm in Gilead, to make the wounded whole..." you know the rest. I wish for you both its soothing mantra.
Love,
Brian B
Posted Jun 16, 2009 12:11pm
by Jeff Cogan
Tim,
I'm exhausted just reading all of this. I can't imagine what you are feeling as you are going through this challenging time.
Best wishes and strength be with you.
-Jeff Cogan
Posted Jun 16, 2009 10:36am
by Sandy Everett
The "Prayer Warriors" are out in full force praying continuously for Bella's complete healing and strength for all of you. Through it all, no matter what it looks like, God is still in control, stirring the pot, making the miracles happen. Bella will be healed. Amen!
Sandy Everett
Posted Jun 16, 2009 10:35am
by Jan Pflaum
Our thoughts and prayers are with you Love Uncle Bill and Jan
Posted Jun 16, 2009 9:38am
by Cindy Barr
Your Vision will be recognized - Through it all. I send you Peace, Love, and continued prayer for the complete healing of Bella.
Cindy
Posted Jun 16, 2009 9:32am
by Russ Baldwin
We will continue to pray for Anabella's healing and that she has a version of EB she will grow out of. We will also pray for your continued strength.
Love & Prayers
Russ & Jen
Posted Jun 16, 2009 9:19am
by Lynne Boschee
Praying for miracles and sending love.
Posted Jun 16, 2009 8:42am
by Sheila Marchetta
We're keeping you all in our thoughts and prayers -- with the intention of the best possible results from the tests.
What a blessing to have the the Debra volunteer coming to see you!
We're off to Durango...
Love,
Mom & Ralph
Posted Jun 16, 2009 8:40am
by Becky Stone
Wonderful news about DEBRA! So sorry about the thumb.....I'm praying the volunteer has fresh, new ideas on prevention, too.
Always praying,
Becky
Posted Jun 16, 2009 7:21am
by Angela Ostermann
Sending postive thoughts, hugs and comfort to you all, hang in there. Don't forget to take a break.. mentally and physically. I know you don't want to or you don't think you can but your body and mind needs it.
Love and Prayers,
Angela
Posted Jun 16, 2009 6:13am
by MB Young
We love all the pictures - thanks for posting them! You're putting a puzzle together with this EB - without all the pieces. That's exhausting. Leave it in the Lord's lap - it will all begin to fall into place soon. Off to Mass with your vision!
Mary