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

Tuesday, July 24, 2007


Life continues to go at a frantic pace. We sure are keeping busy over here. Our new house is continuing to come to life and is just so exciting. Along with it, however, are daily decisions on things and not enough time in the day.

Emerson is growing and changing everyday. She continues to be my little snuggler and complete "momma's girl", which I love. She now crawls all over the house searching for me and once in a while I even hear a "momma". When I pick her up she gives me the sweetest hug and breathes deeply into my neck, smelling me, and makes me fall more and more in love with her. She is now also waving and starting to say "Haaah" and "Baaah", like we live in the South. Just today, when her daddy left the room she started crying and said, "dada" and was waving. It's that cute little wave where the fingers are clenching in and out towards her own face. Now, I probably won't see that again for a few months, but that's how it goes with Emerson. I also thought there was no way she would ever attempt the stairs, but this past week I found her five stairs up our staircase just sobbing. I think she started to go up and then panicked. Poor baby. She is starting to SLOWLY cruise along furniture, but only if there is something she really wants to get. Usually it is a center-piece at grandma's house that has stones in it which she very swiftly puts in her mouth. She is such an incredibly easy child right now. So pleasant and happy.

Ella has also eased up a bit. We are still battling once in a while, but the daily tears and frustrations with her have lessoned. I have really realized that how I handle her really makes or breaks her behavior. If I get frustrated with her and don't handle a situation particularly well, she acts even worse. If I just go back to the basics, make a behavior chart and really reinforce positive behavior she is so much easier. She is so much fun and so incredibly creative that everyday is an adventure with her.

We met with Emerson's Geneticist recently and also had Emerson's 18 month appointment (a bit early). Emerson is 21.4lbs (10-25th percentile) and 30 1/2 inches (25-50th percentile). Her calcium continues to be at the very top of the normal range so it looks like we won't be trying whole milk yet. She is still on a boosted up combo of Good Start and Calcilo. I am really hoping we can be done with the Calcilo soon because it is so darn expensive.

Brian's cousin is a photographer and spent the afternoon with us snapping pictures of the girls. I made a slideshow of a few of the best ones. They are about a month and a half old, but better late than never!

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.