Support Batten Disease Research and Awareness

Most of you heard in some form that the Batten Disease Awareness Days were this last weekend. Out of our love for Celia, we want to take this opportunity to thank most of you for sharing her story, information regarding Batten Disease, and ways to support ongoing research and care for her. I also want to take this opportunity to share with Andy and Jenni that so many of our friends and family continue to share their concerns and many thoughts and prayers for them -- too numerous to be certain we’ve shared each one . . .

And let us share again about how you might be able to support awareness and research for Batten Disease. (Just in case some of your emails end up lost in the thousands you receive each day. I know I can’t keep up! Or perhaps it’s been on your to-do list but you never get that far down the list . . . I can relate! These are really easy things to do, though. And of course it’s well worth the few minutes! And maybe posting the info here will make it easier for you and for sharing with others.)

1. As of May 1, 2009 you can use your KrogerPlus card in Ohio and parts of WV to support research and awareness. With your KrogerPlus card in hand, sign in or create an account at http://www.krogercommunityrewards.com/. Click on Edit Kroger Community Rewards information and input your Kroger Plus Number located on the back of your card. Enter the new NPO (non-profit organization) code for BDSRA which is 83592 and click on Confirm. To verify you are enrolled correctly, you will see the organization's name on the right side of your information page.

2. You can also switch Google for GoodSearch or GoodShop and designate BDSRA as your charity of choice. Visit www.goodsearch.com to learn how a few mouse clicks can earn extra money for BDSRA.

Art 101

A few weeks ago Vanessa drew her first really sensible-like drawing. She concentrated really hard to control the pen. It would be hard for me to believe she set out to create something in particular, but when I asked her what the drawing was, she said mommy. I told her that I was convinced it was a dinosaur. :)

And Grandpa created a four-sided figure for Vanessa to color in. Not that any of us expect her to stay within the lines, but she likes to use her remarkable fine motor skills to try, and Grandpa knew that.

Also a few weeks ago, Vanessa found a post-it note on the floor. I had my back to her, ducked down in a cabinet fetching some drawing paper when I turned around to see Vanessa trying to color on this post-it note. It was very interesting to watch . . .

Washing your mouth out . . .

Vanessa has lots of words but so far she hasn't used any to warrant a washing out of her mouth (not that we're considering this route of discipline, especially at such a young age, and since I didn't learn a thing from it when I was younger . . .) However, when asked to wash off after meals, Vanessa prefers to wash her tongue first. She's pretty good about washing her hands, chin and neck, and she likes to describe the process as she goes, but for some reason she loves the feel of a clean washcloth on her tongue. This isn't some weird family ritual we're teaching her. And when we talk about it with her, we end up encouraging her. I'm sure our uncontrollable laughing doesn't help either -- but one can't help but laugh since she always looks so serious when doing it!

Nectar Overdose

I wasn't surprised to lift this bloom and see a dead bee clinging to it. The Evelyn rose is known for its beautiful blooms and for the fragrance of those blooms. I wonder if the bee had a little too much nectar. I nudged it to see if it was just nectar drunk, but it didn't appear to be.

I've also heard that people can be stingy with sharing Evelyn blooms. So I hope you'll consider us generous for sharing a picture. :)

We purchased this rose a few years back in honor of Vanessa's maternal great grandmother, Evelyn.

Jade

Vanessa's cousin Jade recently turned 10. She's now a tween! Do you remember how cool that was?! (I remember making quite a deal out of my tenth birthday -- like I had entered a rite of passage . . .) We don't get to see Jade as often as we'd like but we think of her often.

Jade is blessed with an incredible artistic ability and has participated in a gifted program. She loves horses. And she loves her kittens (now cats, I'm sure.) She's never been a girly girl but she doesn't refuse nice clothes and nail paintings every so often.

We love Jade and hope she had a great birthday!

By Jade ~ May, 2009