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, July 02, 2007

Williams Syndrome Awareness Event

Well the Summer Solstice Williams Syndrome Awareness Event was a big success and went off without a hitch. All of the nerves and fretting really were unneccessary. We are still getting in donations, but we think that we raised close to $10,000. All of the money is going to Dr. Bonnie Klein-Tasman's research lab. She was there and gave a 15 minute talk on Williams Syndrome and her research. Four of her graduate students were also there and really pitched in. The event was very much like a wedding, so many people to try and talk to and to thank for coming, but no really extensive conversations.
I did get a chance to meet 3 other area families with children with WS. I as well have been so apprehensive about meeting someone older with WS. I have been so disappointed in myself for feeling this way, but it really was just fear of the unknown. Well, when I met a little girl who is 12 years old with WS all I could see was Emerson. Emerson at age 12. It continues to amaze me the physical and facial similarities that our kids have. It wasn't the easiest thing that I've ever done, but the future certainly doesn't scare me. Brian and I are so completely in love, if not infatuated with Emerson, that meeting this little girl who looked like an older version of our beautiful 1 year old, what was not to love. Also at the event was a little guy the same age as Emerson, 16 months.
He was just diagnosed a few months ago and the parents still seemed in shock. I really could feel their pain and that they were still in the grieving process. We talked for a long time and I know we will be in touch in the future. And finally, there was a 17 year old girl who was very sweet and social, but I didn't get a chance to talk with her for very long.

PHOTOS: Photo 1: Emerson, the belle of the ball; Photo 2: Myself, Emerson, my brother and his friends; Photo 3: Some of my girlfriends and their new babies (we are in baby heaven over here!)

We are now just trying to get back to normal. Our new house is coming along and the 2nd floor just got built. It is so difficult not to go out there every single day to check on progress. So far, things have gone fairly smoothly and we absolutely love it. This week we are going to my parents cottage for a few days of pontooning and relaxing. Here is a picture of our last outing to Long Lake. We had to stop for some refreshments and Emerson had her first Slim Jim. I could not pry it from her hands. I let her gnaw on it for a few minutes and then pryed it out of her greasy hands when I got very paranoid about the obvious choking hazard. Yes, 16 months and belly up to a bar. LOL







Emerson continues to be a mad crawler. All she wants to do now though is stand up. She is pulling herself up on everything and has also mastered standing from a sitting position without hanging onto anything. Her legs continue to stay locked in place, she can balance standing for almost a full minute, but no signs of walking or cruising. I think that is still a bit away. She continues to be a pretty quiet kid, but we are starting to hear a little bit of giggling. We will tickle her or make the goofiest faces and 10 seconds after the fact she will giggle. She is starting to make some animal noises, panting for doggie, monkey sounds, and she can sign duckie. Slowly, I am seeing her start to catch on to things. She can imitate just about any face or mouth movement, but with no sound. Once in awhile, "mama", "dada", "baba".

Ella, Ella, Ella, what can I say about her. No one warned me about 3. We got through 2 with a beautifully behaved, polite, sweet little girl. Now we have 3 going on 16. Everything is met with resistence and then tears. It is high drama in this household. Ella is taking probably 10 time-outs a day. One minute she is making me laugh and the next minute I am shaking my head in frustration. I love her, but she is exhausting me lately. Hopefully, this week at the lake will be rejunenating for all of us. Sorry for the long post, but I wanted to update everyone.

7 Comments:

Blogger Nancy said...

Wow -- so glad to hear the event was a success. You should give me some pointers on fundraising.

Love all of those photos! What a treat!

7:46 PM  
Blogger Kerry said...

How great that your event went so well! Super job!

Sounds like Emerson is doing fantastic - so nice to hear how well she is cruising along :)

7:56 PM  
Blogger Katie said...

$10k What a wonderful effort! Thank you for sharing the photos.
Emerson sounds like she is powering ahead! :)
I know all about 3yr going on 16 - wait till they hit 4!
xxoo

3:26 PM  
Blogger Teresa and Shawn said...

Wait till Ella is 4... just kidding! (kind of) I understand your pain, Nicole!

Emerson is so beautiful - she has that crazy hair like Clare and Tatum (and Avery is getting there!). It sounds like Emerson is doing great!

11:01 AM  
Blogger Noel said...

Thanks for the update. Wow 10,000...you did a fantastic job!

Ella..all I can say is just wait until she is 8 going on 20! Hannah is there with full force.( It does even out a little here and there, that's so you fall back in love with them and then they go through this stage that never ends and the process repeats)

1:31 PM  
Blogger Lisa said...

glad it went well....3 is a trip have fun with that,I am hoping 4 is better for us :)

5:31 AM  
Blogger Aspen said...

I am so happy to hear that your event went so well! Congratulations for taking on such a gigantic task. Impressive!

Sounds like Emerson is doing amazing! She is already doing tons more than Daven is doing and he is 2 1/2. So proud of her!

1:07 PM  

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