Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Monday, October 27, 2008

Just Because...

I thought I would post a video of Emerson. She is just so lovable and I hope this captures her beautiful, sweet nature. I haven't posted a ton lately on Emerson and what she has been up to because, frankly, we have been at a bit of a standstill. She is expanding upon her single word vocabulary, but not combining a ton of words. This is how it goes with her. Huge bursts of development and then not much. This child is increasing our patience ten-fold. We continue to work hard and hope that it comes. But, we love her and will just wait.

Did you notice in the video that I asked her to not eat the crayon. She eats crayons, candles, you name it. Everything, but food really. The other day I saw her chewing and asked innocently, "Whatcha eating?" Her response, "bugs". I held out my hand and out came a very unhappy ladybug.

Sunday, October 26, 2008

WS Awareness Event 2008

Well it was a lot of work, but incredibly worthwhile. This year's event raised a bit less money than last year (we should end up just over $7,000), but we kind of expected that given the economy. We had well over 100 people attend. Mainly our family and friends. Dr. Bonnie Klein-Tasman gave a short power point presentation on WS and where all of the funds go and what type of research she does. So many of our friends and family had conversations with Dr. Bonnie and I really appreciate that. They are interested in WS and what is going on with Emmie. We had some friends come whom we only see about once a year and they asked me what the future held for Emerson. Wow, such a loaded question. Brian and I told them that our long-term goal for her is independence. That one word makes it sound so attainable, but we are going to be working our butts off for the next 20+ years to try and achieve that. If that is not in her cards, then as independent as possible. Of course, happiness also came to mind and I hope that for her as well.

Thanks for all of the photos and blurbs that you sent. I made a huge display of photos and also included some of your descriptions. It was more of a posterboard display. So much for the video I was going to make. I am so NOT computer savy as I'm sure you can tell from this blog.

One of the areas I would like to improve upon for future events, is for more families with WS in the area to attend. I knew of about 5 families that I invited. Dr. Klein-Tasman said she sent out around 20 invites. Well, we only had 2 other families with children with WS attend. Where are all of you?!?!?!? I completely appreciate the 2 families that attended as I'm sure most of you can relate you have an instant connection. You can "talk the talk" and just feel accepted. One family even drove up from Illinois. I would also like to improve upon the fact that I only took 4 pictures at the whole event. UGH!!!