Sunday, October 11, 2009


So much to share...gonna hit you with a photo essay this time...

We had to strap Bella down after surgery like Sampson so she wouldn't 1) dig out her eyes like she likes to 2) smack into her new button or 3) kick out her IV with her heel.

Ali striking a pose in daddy's chapeau in their room at the new Ronald McDonald House. Please donate to them wherever you are. They saved us $500 in hotel fees over 4 days we were there and fed us, too...not to mention being walking distance to the hospital.

Out to dinner with Ali and Grandma the night before we discharged. Thanks again to Grandma and Grandpa for stepping up and helping us keep the family together through this ordeal. We can't tell you how important that was to us.

Bella's temp ran cold throughout the stay and the room alternated between meat locker and sweat lodge...this shot was taken during meat locker hours.

Check out my new button! (Sweat Lodge hours....)

No words necessary

Something tells me Bella knows more than we think...could it be...HER EYES??? What an old soul as several people have pointed out. We agree. We learn from her daily.

Ahhhh, happy to be back home chillin' in her favorite lounger in the living room. Victory!

The G-Tube is AMAZING! Thank GOD we got it because as soon as we got home, Bella had NO INTEREST in her bottle after 2 feeds. No problem! Pop it in the gravity tube and slide it in! It is sooooo easy to deal with feedings now. And, because of all the fluids she's been getting and all the extra fluid from flushing her tube after every feed and medication, Bella's skin is looking GREAT!

Dr. Eichenfield (Pediatric Dermatologist) and Dr. Waldman (Anesthesiologist) have been at it for over 50 years with EB collectively. They both said that the key to EB is nutrition, and the key to nutrition is the G-Tube. They congratulated us on being so proactive with getting the G-Tube and really flattered us for getting her so fat despite her condition! It really made us feel great to hear that from those two guys...they KNOW EB. We also really appreciate all the support all the EB families gave to us in encouraging us to get the tube early. That really gave us the confidence to put a feeding tube in a 4 month old that is 50th percentile in weight for her age and 75th percentile in height. One thing Dr. E. mentioned that will never be forgotten by mommy or me is that once you fall behind with EB, you never catch up. THAT is why we have been so militant in feeding this little angel. Seems like it's working.

Now, we wait with baited breath for the kangaroo pump that will be arriving early in the week...can you say...



Good night. God be with you all.


  1. sleep, Bella, sleep!
    sleep, Bella, sleep!

    everyone looks so happy...and relieved!

  2. Wonderful wonderful wonderful! She looks like she is feeling good and ready to get into some trouble. So glad it all went smoothly!