Monday, May 31, 2010
Tuesday, May 18, 2010
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:
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.