Wednesday, February 11, 2009


On Tuesday Vinny and I were able to meet with our CdLS friends. I have been talking with Angie and Carrie over the phone and through email for many months, we have just never had the opportunity to all get together. The day finally came and it was so amazing! All three of us met as strangers, and by the end of the day when they left, I knew I would have forever friends!!!! It is funny how one syndrome brought us all together. I tell you God does work in amazing ways.

Both of these women are amazing people and mothers! We talked non stop for over three hours about EVERYTHING. It was so helpful to learn from each other, hear their stories, and to just know that I am not the only one living with a child that has CdLS. All three of us have experienced the same thing in one way or another and it was just nice to know that each one of them understood!

Forever friends

Angie & Sarah

I met Angie through an email when Vinny was just two weeks old. The CdLS foundation contacted her when Vinny was born. I felt that I was not ready to chat with other families with children with CdLS, however, Angie's email was so welcoming and warm...I just had to call her. She invited us all over to their home....boy that was great! We went when Vinny was only five weeks. You would never believe how just spending a few hours with her family helped us! I was able to sit back and see that "life" goes on. We have a lot of common with this family. Angie has five children, two girls and three boys. Her boys are the same ages as Avery, Leo, and Frankie. They are from Utah as well.

Sarah is 20 months old and is so beautiful! She has this crazy curly hair and big blue eyes. She loves to smile...this little bugger weighs 10# 11oz...She drinks from a cup and can even feed herself avacodo from a spoon!

Izzy & Carrie

I met Carrie through a wrestling mom who went to school with Carrie. Ginger called me all excited one afternoon to tell me about this great classmate that also has a child with CdLS. I called Carrie right away and spend over an hour on the phone with her. She had so much great information to offer regarding medications, doctors, reflux, the "g"tube/button, etc.... She also provided me with a lot of hope for the future of Vinny. Her little Izabella (Izzy) is an amazing little girl. She is about 27 months and weighs 13#'s. This little gal is a firecracker! You should see her move. She crawls all over the place and pulls herself up on everything! Carrie said that Izzy stood for a few seconds by herself the other day. Little Izzy has the cutest giggle and laugh!

I feel so blessed to have met these amazing women and their beautiful little girls! I now look forward to the time when we can all get together again and share stories. It will be so fun to watch our babies grow up and see what kind of little people they become.

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