Walk for Williams Syndrome

A few weeks ago we got to participate in something really special. Two weeks ago was Williams Syndrome Awareness week. Because of this, many cities were hosting a walk for Williams Syndrome, including Draper, Utah. Draper is just 10 minutes from us! What are the chances of all this happening just 2 weeks after finding out that Dallin has WS?

The event started with a 2k walk. Some of my family members came to walk with us.

Grandpa rolled with us.

It was fun to have some family there to show support by walking. There were games for the kids to play, prize giveaways, a silent auction and even some hairstylists. A motorcycle group came and allowed all the kids with Williams Syndrome to sit on their bikes.

I think Dallin wants one when he grows up.

There was also a fire truck that the kids could go inside and take a look around.

I'm convinced Dallin could have fit inside this helmet.

Most of the participants were people supporting someone they know with Williams Syndrome. There were probably 20 or so people there that had WS. A lot of them were kids, ranging from babies to older teenagers. We got to talk to a few parents and they shared some of their experiences with having a child diagnosed with WS. They shared some of the health difficulties their children had experienced, and they talked about how WS had not limited their abilities. We saw a 12 year old boy with WS who got embarrassed when his mom talked about him and brushed food crumbs off his face, just like a typical 12 year old boy. We met a 19 year old boy with WS who likes to ride motorcycles and go four wheeling. He is getting ready to get his driver's license. His dad talked to us for a while and gave us a lot of insight. One thing he said that has stuck with me is to not think that children will be limited by having WS. They will still want to run and play, dig in the dirt, play sports and do everything that little kids do. He said to always be open to allowing him to try the things he wants to do.

It was great to see the positive side of things. I've been reading all about the medical concerns and limitations that can accompany Williams Syndrome, so it was good to see the wonderful personalities and optimism that go with it. I'm so grateful for our family who came to walk with us and support us. My mom even got to participate in the walk for WS held in St. Louis. It's good to know that we have supportive people who will help us as we discover more about who Dallin is and the potential he has.

Expectations and Diagnosis

When I was pregnant with Dallin I had certain expectations of what I thought he would be like. My baby would be perfect. He would meet all the developmental milestones early, and be crawling and walking by 8 months. He would be an early talker and would dazzle everyone with his amazing vocabulary and intellect. Our son would be smart. How could he not be with parents like us? He would be very gifted in math (like his dad) and be reading at an early age (like his mom). I had many thoughts like this, as I’m sure many parents do. My pregnancy was very straightforward with no complications. Labor and delivery was also very straightforward and what some might call easy (though labor is never actually easy). For the past 13 months I’ve been taking care of this wonderful little boy.

Many of you who have read this blog have heard of some of the health problems Dallin has had, ranging from heart problems to low weight gain. As Dallin has grown (or not grown as the case may be), some of my expectations have not been met. He is not crawling or walking yet. He babbles and makes little baby sounds but is not quite talking yet or recognizing words. At the recommendation of his cardiologist, Dallin had blood drawn for genetic testing. The results came back and Dallin has been diagnosed with Williams Syndrome.

Williams Syndrome is caused by the deletion of about 20 genes in the q11.23 region of Chromosome 7. For whatever reason, as Dallin’s cells were dividing when he was still a little microscopic being, some did not copy as divide as normal and this deletion was the result. As we’ve been learning more about Williams Syndrome, we’ve learned about many of the challenges Dallin might face, as well as the amazing opportunities he will have in connection with it. I’ve discovered a new set of expectations related to William’s syndrome.

Many people with Williams syndrome have exceptional musical abilities and often have perfect pitch. They often have less cognitive abilities but great verbal/language skills. Many will have some degree of mental disability, ranging from mild to moderate. They are very friendly, social people and are not afraid of strangers. Dallin’s personality definitely fits into this description. The heart and weight gain problems Dallin has experienced are very typical with Williams syndrome. A very sensitive gag reflex and early eating problems are also symptoms of WS, which explains Dallin’s aversion to solid foods. It’s not uncommon to have developmental delays with things like crawling, walking and talking. We are very lucky to have access to physical, occupational and speech therapies that will help Dallin to develop in these areas.

Each person with Williams syndrome will have different symptoms and challenges. So I’m trying not to worry about expectations. I’m doing my best to help Dallin with his challenges in any way I can. I’m not worrying about what milestones he’s not hitting that other typical babies are. I’m enjoying my perfect little baby and finding joy in the little amazing things he does.

If you want to learn more about Williams Syndrome on your own, here are some links to get you started:

http://www.williams-syndrome.org/

http://www.nlm.nih.gov/medlineplus/ency/article/001116.htm

http://en.wikipedia.org/wiki/Williams_syndrome

Recent Happenings

We’ve been pretty busy for the past month and a lot has happened. Mckay finished his classes and graduated with a Bachelor’s degree in Chemical Engineering and a Bachelor’s degree in Mathematics.

He has worked very hard and I am so proud of him for finishing 2 degrees in 4 years. The next step in his education: 5 years at Purdue University for a Ph.D. in Chemical Engineering. But that won’t start until August. In the meantime, we packed up and moved out of our little Provo apartment that we lived in for almost 2 years. Then for 2 weeks we lived as nomads, wandering from place to place. We went to St. Louis for my sister’s wedding. It was such a beautiful wedding and we had fun with the whole family together again.

We got to see a few of the St. Louis sites and go to a Cardinals baseball game. On the way to and from St. Louis, we stopped in Denver to visit our Easton family. We feel really lucky to have so many wonderful family members and to have seen a lot of them recently. While in Denver, we got to attend a Rockies Baseball game. Can you tell we like baseball?

With much dismay, we left our families and returned to the lovely state of Utah. Mckay has a summer internship with a company called WesTech in Salt Lake. His uncle Jeff also works there and was very helpful in recommending Mckay for the internship. As I mentioned previously, a different uncle of Mckay’s has graciously allowed us to live with him and his wife in Riverton. Dallin and I are pretty much doing the same thing, but now we’re in a different place. He still loves to be outside and go on walks. The other day we walked to a nearby park and played for a bit. I’ll leave you with some pictures from our outing.

We're still alive!

You may have noticed that I haven't posted anything for a long time. It's not because I didn't want to and it's certainly not because I haven't had things to post about. After Mckay graduated (more on that in a later post) we moved to the Salt Lake area to be closer to his summer job. Mckay's uncle and aunt were generous enough to allow us to live in their basement for the summer so we can be close to Mckay's work. We haven't figured out an internet situation yet, hence my lack of posting. Even now, I am posting this from a computer at the library. I don't have any of my pictures with me here, and I know the only reason most of you look at the blog is to see pictures of Dallin, so most of our updates and stories will have to wait for another day. Trust me, they're worth checking back on. Hopefully, I'll be able to post more things in a few days. For the time being, know that we are alive and well.