This past Monday night, friends hosted a reception event to honor Ella which truly touched Katie and I so dearly. The event's main purpose was to raise money for Ella's as well as for any other child with EB in our church medical expenses (currently, Ella is the only child in our church with EB) not covered by insurance. There were terrific silent-action items that people bid on, and the event was a huge success raising approximately $30,000. We were incredibly floored by this outpouring of love and generosity! Words cannot express how much this effort means to us!
There were many caring people who lended a hand in putting the event together (from gift sponsors to volunteers), and we would like to specifically mention and thank a few who led the effort:
Karen Johnson, my former colleague at Valente & Associates, was the brain-child of this event. From the day Ella was born, she had been diligently scheming to create such an event to help us out. Like many, she loves little Ella, and felt compelled to lead the charge to seeing this event culminate in what it did. She enlisted the interest of others who comprised a host committee including Mike Bell, another friend and Valente & Associates colleague; Amber and Jeff Burton, Eric Dell, Jim Ellis, Scott Fleming, Mike Gula, Joe Rachinsky, and Mike Gula. All of you are such wonderful people and cherished friends!
Others who played an instrumental role in the event include Mark and Claudia Valente, my former boss, who opened up the 9th floor penthouse of the office to host the event; Katie Horgan, Rachel Evans, Jenni Stein, and Beth (i forget your last name, sorry) who all worked so hard to ensure that the details of silent-auction items were in place, guests had nametags, and overrall, all necessities were in place.
We can't forget to thank the hundreds of you who contributed to the event by mailing in a check. Thank you from the bottom of our hearts! These resources will help us cover Ella's hospital bill as well as a very expensive genetic test that we hope will provide us a more clear medical prognosis of Ella's EB.
One of our favorite Bible verses is, "Where your treasure is, there lies your heart." We know that the hearts of many our with Ella and her Mom and Dad!
As for little Miss Ella, she was dressed to the 9’s in a beautiful navy blue dress with a pink onesie. It had ballet slippers on it! She acted pretty good considering it was nap time. She did ok for the first 2 hours, then she was done. As soon as Joe sat down to feed her she fell asleep and slept through the drawing and presentation of the auction winners, and Barbara’s talk about EB.
As far as life with Ella, she is really enjoying her voice. It’s hysterical! She makes all sorts of noises in a wide variety of ranges, and she even seems to carry on a conversation with us. We will start talking with her, stop, and then she starts talking. And she has started chewing on her hands. This poses a problem because she gives herself blisters on her fingers. We try to keep mittens on her hands, but she has figured out how to get them off. It’s so funny to watch. We put the mittens on…she rubs her hands against her sides until the mittens come off…we put the mittens back on…she rubs her hands again. We have a smart kid.
Not much else to report on the home front. Joe is in the thick of classes, and I am back in the swing of things at work. We’re both exhausted and wonder when Ella is going to start sleeping through the night. The bad news is that I was 2 years old before I slept through the night, so it may be a while.
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