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Happy Ryan Week!!! November 15, 2012

Filed under: Uncategorized — ryangrace11q @ 3:12 am

Ryan is a very unique little girl… In fact, as far as we know, there is NO ONE else on the PLANET with her exact chromosome deletion (11q 14.1-23.2).  So, we decided to celebrate her uniqueness, and her accomplishments, by naming November 14th through November 23rd as Ryan Week!  If you haven’t figured it out yet, those dates match Ryan’s deletion: 11/14 – 11/23!  Why not, right?  October was Down Syndrome and breast cancer awareness month and November (or Movember) raises awareness for prostate and testicular cancer.  If boobs and ball sacks can have an entire month then I think Ryan can have 10 days!

Today, Ryan Day, was awesome!  Friends near and far helped us celebrate our little lady by wearing their Rooster’s Boosters shirts, wiggling their Rooster combs (you know, the cock’s comb!), and sending love all day long to Ryan via text messages, emails, and Facebook posts.

Wiggle it, just a little bit!!

The girls spent the day at home with Katie, just hanging out and relaxing.  Ryan had PT in the afternoon and since she’s still not able to get her arms moving to crawl, she got some new Kinesiotape to help her pectoral muscles.  She rolled, sat, and climbed some stairs.  We tried to strap her into some sort of big walking contraption but the vest she was in upset her so much that she cried and puked.  We decided to try again in a couple of weeks.

Getting taped

Aren’t I cute???

Ryan with Kelly, our awesome PT!

After PT, we went to Katie’s parents house for dinner.  The girls got to play and spend time with grandma, grandpa, Aunt Sarah, and Uncle Mike.  Their great-grandparents were there too!  Ryan was all smiles, all night!  We all had a lot of fun and it was so nice to be able to relax as a family.

Playing the piano

There goes Aunt Sarah!

At one point, as I was looking at Ryan laughing as Charlie and Sarah ran through the kitchen for the 100th time, I thought about how far she’s come in a year.  Twelve months ago we had just gotten her diagnosis, she wasn’t eating without writhing in pain, she wasn’t looking at us, and she definitely wasn’t laughing.  She has such an amazing spirit and I know that I’ve said this before, but we are so lucky to have her.  Times may become more difficult and not knowing what is in her future is scary, but our life is better for having her in it.

I wish all of you a happy Ryan Day!  Wiggle your cock’s comb not only for our little Roostie, but for all the unique people that touch your life!

Rooster’s biggest booster!

 

2 Responses to “Happy Ryan Week!!!”

  1. Jenny Says:

    Waving my rooster comb in CLE! Happy Ryan day!!!

  2. jenny Says:

    Hi there, just found your website by chance as I was looking for some information about the 11q interstitial deletion.I work in a primary school in the UK as a support for a girl with this same chromosome deletion- not sure if they are exactly the same bits as Ryan has lost. I thought you may like to know that at 7 years old she is coping well at school, I work with her every morning to help keep her focussed on her work, she does have problems with her handwriting as she finds it tricky to grip the pencil and has poor fine motor skills, and she is still a bit wobbly on her feet, but she is a really lovely little girl and has a really positive attitude and is determined to do everything her friends do. I really hope your little girl is getting on, she sounds like she is and it looks like everyone is determined to get her up and mobile. All the best.


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