Friday, September 4, 2009

Pack your bags...anyone have a PARKA?

Well, we're going to Minnesota, folks!

We have a consult with Dr. John Wagner at the University of Minnesota Blood & Marrow Transplant Center on Wednesday, October 15 at 9am (if you're going to be in the twin cities that day - or the night before - let us know! Let's share a meal!).

Things are moving along with the registration, paperwork, gathering of information. We are "in the funnel" as Tim at U of M, who is coordinating our care, put it. He expects that this whole process, including the bone marrow transfer and recovery, will happen within the year. That means, by this time next year, Bella could be potentially free from the clutches of EB.

She'll only be a year old.

I don't remember anything (consciously) from that age, do you?

You guys, let that sink in for a second.

She could grow up having NO MEMORY of this.

No memory of pain.

No memory of suffering.

THAT is an inspiring vision to hold on to.

There is a patient who is BMT +6 (6 days post transplant) right now and her mom is keeping us all updated through facebook. We are praying HARD for her daughter right now. I will ask if I can share her name with you all, but in the mean time...know that a girl is fighting for her life right now and needs EVERY ounce of energy, thought, intention, prayer sent her way TONIGHT. The good news is that there is an UNLIMITED amount of love and abundance available for all of us to channel wherever we choose! So SEND IT TO MINNESOTA RIGHT NOW, whatever time it is you are reading this, just take 10 SECONDS and pause, concentrate, focus on U of M BMT patient. Send light, love, laughter, healing, strength, peace, patience, persistence, FAITH, support, BELIEF, and trust...or any other you feel called to!

Also. I am planting the seed now. Remember PUCK. It is a non-profit being formed to raise $$ for U of M's program. Right now, even with all the various EB non-profits out there, NOT ONE OF THEM is financially supporting Dr. Wagner's trial. I refuse to get into any of the politics of non-profits and competing research teams at competing universities. I will just say that Dr. Wagner's program is on the verge of a massive breakthrough for EB and no one within the community is stepping up to help.

Weird. So, PUCK is being formed by an EB family that has moved to MN to help him out.

Lastly, is up! If you are parents of a child with special needs, or know of one, please go to the site or send your friends or family to the site so we can begin to build a support group that is based on power, optimism, and a desire to be cause in the matter, despite the circumstances.

In other news, we are moving to a mostly formula diet now and will be introducing rice cereal soon. Bella is really struggling with her bottles. We don't know what it is, but she just fights and screams through either the first few minutes, or 30 minutes, then passes out and it takes another 30 minutes to manually squeeze the bottle in one squirt at a time. Average bottle takes an hour to give to her right now. :(

Good news is that we've been using alkaline water for over a week now (pH of 9.5) and her skin looks GREAT. Virtually no open wounds on the outside of her body right now. Just some little stuff on the face, and existing wounds continue to heal wonderfully. Now if we can just get her eating without suffering...

Now, enjoy some wonderfully ridiculous adventures in the girls' room from earlier in the evening...




  1. Can you tell me a little bit about the alkaline water? Is it something she's drinking or you're using on her skin? (I don't really know what alkaline water is, so excuse me if that's a stupid question. :) ) You can leave a comment on our blog or email me:
    momtobabyjonut AT gmail DOT com

    You know, whenever you have free time (HA!)

    Thanks so much :)
    Praying for Bella

  2. Love the video, too cute...this is Jennifer, not Jim posting...Love you guys, Jen.

  3. The video is precious, love how 'Barbie' tries to steal the show....doesn't take after her Dad at all! :=O LOL!
    We love you all!
    Many Blessings,
    The Gleason's