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Cali Trip – Part 2 July 6, 2014

Filed under: Uncategorized — ryangrace11q @ 7:07 pm

The Sunday after the Angel’s game we headed back down to San Diego and checked in at our hotel for the conference.  We stayed at the same hotel the conference was held in which was super convenient for Ryan’s naps during the week.  We quickly headed back out to watch my brother play with a band at a nearby gig and get some dinner before crashing after a long week.

Big sis loved helping little sis with her iPad!

Big sis loved helping little sis with her iPad!

Dave's gig

Dave’s gig

Dave

Dave

Ryan loved dancing to the music!!

Ryan loved dancing to the music!!

Back at the hotel we recharged for the conference starting the next day!

Back at the hotel we recharged for the conference starting the next day!

The conference started bright and early on Monday morning.  The schedule for the week was jam-packed full of sessions from everything about various health issues, break-outs led by family members of 11q kids, and panel discussions to share results from current research to advocacy, IEPS, and legal issues.  We were able to pick and choose what sessions applied to our family and Katie and I took turns attending.  Child-care was provided and when both girls were there, we were able to go to sessions together.  I can’t express how great the sessions were.  The speakers were very informative and provided us with opportunities to ask questions.  They even live-streamed most of the sessions so the 11q families that couldn’t make it were able to ask questions live online.  So cool!  That first day, each family made a poster about their 11q child and they were displayed all week.  We also had a really nice opening-night dinner where all the families were introduced.

Poster making

Poster making

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Opening night dinner

Opening night dinner

Amy and Tyler

Amy and Tyler from Texas

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Keeping Ryan busy during the dinner!

Keeping Ryan busy during the dinner!

They talked about rare diseases at the dinner!  FHS raised money for Rare Disease Day this year!!!

They talked about rare diseases at the dinner! FHS raised money for Rare Disease Day this year!!!

We got to meet Sydney from Kansas City!

We got to meet Sydney from Kansas City!

Amy, an adult with 11q, spoke about her life.  It was very inspirational.

Amy, an adult with 11q, spoke about her life. It was very inspirational.

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Another adult with 11q sang at the dinner – One of my happy tear moments.

Another adult with 11q sang at the dinner - One of my happy tear moments.

Charlie loved playing with Sydney!!!

The best part about the conference was the opportunity to meet other 11q families.  As soon as Ryan was diagnosed with an 11q deletion, I joined some support groups on Facebook.  The first was for Jacobsen Syndrome because we thought she had that.  I also joined the 11q Resource and Research Group and Unique.  Unlike Down Syndrome, where there is a large community of support and many individuals with Down Syndrome all over the world, 11q deletions are very rare.  These groups on Facebook became our support system.  The families, from all over the world, were the experts.  Ryan’s doctors, although very good, were not.  If we ever had a question about Ryan, I knew that if I posted it, I would get answers within minutes.  Since Ryan does not have Jacobsen Syndrome, I especially connected with a few families with kids that have an interstitial deletion like Ryan.  One of those families is from Texas and they have a son who is just 1 month younger than Ryan.  Tyler’s mom and I started messaging each other on a consistent basis and talked about everything from health issues to how we were feeling.  It was so nice to have someone who knew exactly what we were feeling.  So… over 2 years later we finally met!  It was like we already knew each other… oh wait, we did!  And our little ones played together well too!!

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Our Texas friends, Amy, Tyler, and Ryan B.

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Enjoying a little mexican together!

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Like a lot of 11q kids, ours have red hair!

One night we had an adult reception.  We had a few cocktails and got to know the other families.  Talk always came back to the kids though – it’s what bonds us together as one big 11q family.  This year there were not only families from all over the states, but also 2 families from England, 1 from Norway, and the family that traveled the farthest was from India!

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OLYMPUS DIGITAL CAMERADuring the week we had time for a little R & R too.  When we weren’t at sessions, hanging out in the room, or chasing Ryan around the hotel, we had a few meals out and Charlie got to spend more time with Chloe and Uncle Dave!  The conference is every 2 years and because our trip was such a success, I can see us going back again real soon!  Special thanks to Dr. Paul and Linzee for making it such a special and educational week!

 

Lunch out with my girls

Lunch out with my girls

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A little down time in the hotel while Ryan naps.

A little down time in the hotel while Ryan naps.

We hit the Padres team shop.

We hit the Padres team shop.

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Ryan says, “Where’d everyone go?”

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Sea World!!

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The beach!!

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The redeye and Xanax

 

 

2 Responses to “Cali Trip – Part 2”

  1. Bonnie Nuxhall Says:

    Great pictures and blog. I am so glad you had the opportunity to go and meet the other 11q parents. I know how important that support has been for Jeremy, as Faith has grown and experienced changes and medical issues. Dr. Paul is amazing! I did live stream some of the sessions. Bonnie

  2. Rebecca Pelkey Says:

    I found your blog a few weeks ago and have read through it multiple times already. I laughed and cried at your journey with precious Ryan. I have a son named Owen who was diagnosed just a few months ago with 11q deletion syndrome (interstitial deletion not Jacobsens) and we have faced many of the same trials. I am Looking for support and information from fellow parents in order to learn more about how to help our sweet baby boy.


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