Wednesday, October 7, 2009

The Team is introduced

Okay, it's amazing what can happen in 24 hours.

We feel SOOOOO much better about EVERYTHING.

Lot of changes to the plan both in and out of the hospital.


Nanny came down with the flu today and Grandma stepped up on NO NOTICE to come down and help with Ali so we could keep the family together through this hospitalization. We are SO GRATEFUL to her for doing so. She's gonna be a little out of her element, but we hope to revive the adventurous spirit within her by sending her and Ali on all sorts of missions and excursions. Say a prayer for Nanny that she gets better, and for Grandma that she survives and enjoys the journey down here in SD!

Thanks to our friends Pete and Maria who are taking ALi with them to Disneyland tomorrow. Thanks to Mike and T for taking her last weekend. Ali LOVES D-Land, so anytime our friends are going and Bella's in the's a win win for everyone.

Thanks to my friend and esteemed NICU MT colleague Kat for having Starbucks for Ang and I delivered to the front door each morning! Kat, I walked by the meeting room where we presented the research on NICU Music Therapy to the Cardiology team here last fall and smiled fondly of that experience.

Thanks to Susan Hermes and Danial Jones for their strong recommendations to work with Dr. Larry Eichenfield down here. The guy is amazing. He trained our current Pediatric Dermatologist in OC, Dr. Metz (of which he in turn spoke incredibly highly of). The guy has been in EB for decades and is still hip to all the latest research happening at home and abroad. He knows EVERYBODY, but has NO EGO AT the combination!

So, onto business. The surgery is set for 10:10 tomorrow morning. Dr. Cling, our surgeon is AWESOME. She has experience working with EB kids, so this is nothing new to her or the rest of the team. We are trying to get our NICU nurse from CHOC, Tanya, into observe the procedure to see how they prep an EB patient.

They will be putting in a g-tube with a button on it so it is low profile from the start. We'll remain in the hospital till at least Sunday to make sure it works and we have a successful feed strategy in place that gets Bella back up to the calories she needs daily to grow and heal.

Please pray with me...

Dear God, thank you for providing us with such a wonderful, experienced team to make our family's life better by safely implanting this cute little button and feeding tube in Bella. Thank you for keeping her infection free while here in the hospital.

God, thank you for providing our friends in Minnesota the Sheridan Family with continued strength, peace, and healing.

God, thank you for providing a fellow EB dad Greg with a speedy recovery from a stroke he recently suffered.

God, thank you for providing Dr. Wagner's family peace and comfort during their time of mourning the death of his mom.

God, thank you for bring peace, strength, and healing to one my mentors and friend Barbara as she deals with some scary tests and surgery related to Melanoma.

God, thank you for swiftly healing my friend and MT colleague Chelsea's dad from his recent illness.

Thank you so much for praying with me.

Good night.

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