Saturday, September 12, 2009

Saturday, September 12th, 2009

After much anticipation it was finally the day for the CCA picnic. CCA is Children's Craniofacial Association which is a wonderful organization that provides education and support to children and their families who like me have a craniofacial syndromes. Please check them out at! September is Craniofacial Acceptance month and CCA had families sponsor picnics in their communities. The CCA picnic closest to us was in Los Gatos which is 2+ hours away. Although it was a long drive, it was well worth it. We went to a great park and met six other children and their families. One little girl has a facial cleft, a 2 year old boy has craniosynostosis and a 2 1/2 year old girl has Treacher Collins Syndrome. The biggest surprise, though, was when I got to meet a girl in the second grade named Casey who has Nager syndrome just like me! I was officially the only child at the picnic with a trach although at least two of the children had a trach at some point. But you should have seen all the Mic-KEY buttons! Our picnic was hosted by Courtney and her son Seth - thanks guys for inviting us!
We started out the picnic with all the kids riding on a small steam engine. It was my first time on a train and it was so much fun! Then Mommy took me on my first carousel ride. Despite the expression on my face, I loved it! In fact, as soon as the ride stopped I started signing "more". The group headed back to the picnic area and I got some play time on the slide and swing. Later, Mommy and I talked to Casey for a little while. She is also a patient of Dr Schendel's and will be having similar surgery as I will soon as well. Casey was fascinated with my trach and kept touching it but I didn't mind at all. She just had her trach taken out about a year ago. She showed me her button and I showed her mine. She also had the same surgery done on her right hand as I did so we compared our hands since they looked exactly the same - three fingers and a thumb! She showed us her BAHA's that were implanted behind her ears and then told us about all 9 of her surgeries - she's been a busy girl. She had to leave to go to a swim lesson (yes she is swimming now that she doesn't have a trach) and we had a long drive back home. Mommy sure wishes we lived closer to everyone because in the short time she got to talk to the other parents it was clear that we all have a lot in common, but she will try to get email addresses so we can stay in contact.
We had a great day and hope to make this a yearly event!

Peyton Nicole Smith


  1. SO happy to hear that you were able to attend the picnic, and that you loved your first train and carousel ride! I am also SO excited to learn about Casey, and to hear that her trach has been removed and she is even taking swimming lessons! That is AMAZING, and something that we can look forward to with you over the coming years when your trach comes out.

    I also wish mommy was closer to this group of parents that she has so much in common with, as it would be great for her to be able to share her experiences with you, and learn from their's. Even though there are other children with Nager, you are one of a kind to us sweet girl, and you are the MOST special of all! I love you very much!

    Aunt Kristin

  2. Good morning Miss Peyton,
    You really look as though you are having a wonderful time on the carosel and at the picnic.We're so happy you were up to making that two hour trip both ways.Mommy said it would make for a long day,but earlier in the week indicated it was something she really wanted your family to do.
    How exciting to meet Casey and her family,and so many others in such a fun atmosphere,and supporting such a good cause.I think your mommy will manage somehow to keep in contact with the new friends you made yesterday.
    One day,in your future,we'll see you leaving the picnic early to go to swimming lessons,soccer,dance classes or whatever it is you decide you want to do and your family will be equally excited for you.Right now we're enjoying all the fun things your up to and watching you grow into a happy and
    mischievious two year old.Thanks again mommy for the wonderful blog
    you've created!
    Be sure and tell Lucille congratulations for us on her new little grandaughter.She has waited alot of years for another grandbaby
    to love.I think she is one of the luckiest ladies alive.She gets to spend most days with you,and her new grandaughter at other times.I
    could be very jealous of her,but I am equally grateful to have such a wonderful woman loving you and taking such good care of you.You are one lucky little girl!
    Have a great day sweetheart and take good care of mommy and daddy
    (and be extra good to your furry brothers).
    All our love,
    Granpa and Granma Mower

  3. Hi Tracy!
    This is Teresa Joy's mom; we met you at the picnic. Thanks for the email-- I will write you back later this week about Teresa Joy's school in Redwood City (its on the peninsula, near San Mateo). Just wanted to say that your blog is wonderful! I also just saw that Peyton is having jaw surgery next month-- best wishes. We will send prayers for as little discomfort as possible for Peyton and strength for you and your husband. Teresa Joy has had two jaw distractions, and though they are no fun, the outcomes have been outstanding-- keep your eye on the prize!
    Much love
    Deena Dyson