Latest News: 20th Annual Chromosome 18 Registry Family Conference – Part 3


(Thank you Steve Marshall for the picture of our sign!)

20th Annual Chromosome 18 Registry Family Conference

News & Recognition
Positive Exposure
Research Updates
Syndrome Breakout Groups
Self Advocate/Sibling Mixer
Moms’ Night Out
Special Needs Planning Program
Yoga Interactive Session
Lifetime Care & Estate Planning
Play as Therapy
Home Control & Ownership
Diagnosis Discussion
Self Advocate Panel
Transition from School to Adult Life
Therapeutic Feeding
Syndrome Breakout Groups
Self Advocates’ Dinner
Dads’ Night Out
Ear, Nose & Throat Issues
Dental Issues
Behavior Management
ADHD Owner’s Manual
Specialty Roundtables – Neurology, Endocrinology, Developmental Pediatrician, OT, PT, SLP, Genetic Counselor, OB/GYN
Sibling Panel
Farewell Dinner & Dance


(Thank you Marianna Kuortti for this great picture!)

That’s it. The full schedule of the conference. Ton of information. Right? Becky and Steve Hobby did a fabulous job of putting together and facilitating the conference this year. Look at all those fantastic and information packed sessions! I’m almost positive The Registry will be posting the handouts and slides from the sessions on the website. They did last year. Keep your eyes peeled for an update in the facebook group or The Registry newsletter for that announcement.


(Thomas at the Welcome Reception … Happy Boy)

I am so grateful and blessed that this particular conference was Thomas’ first one. He was blown away. He got to experience what I experience at every conference. This was my 5th conference to attend. It’s as if we have arrived “home” right in the middle of a huge, fancy hotel. Not everyone knows your name …. However, with that magical name tag hanging around your neck, you instantly receive a smile, and most times a hug too and are enveloped in kindness. You can walk down any hallway, be eating in the hotel or nearby restaurants and know that you will see familiar faces. You are content and at peace letting your kids have a little freedom in getting out of eye sight as you know there are others who are looking out for them.

This is what keeps me coming back year after year … the families. The information sessions are great. Yet, I feel sure I could gather the information with my research skills. It’s having others in similar situations to discuss the information with that’s the clincher. Being able to share a meal together, a glass of wine or beer or cup of coffee and simply share and compare notes is a feeling like no other and can shed light where in the past there has only been darkness. That’s the magnet that pulls me back every year.

And now Thomas has experienced it. He felt right at home. He melted right into the Chromosome 18 family … and my heart melted experiencing him bonding and falling in love with siblings and affected individuals as well. My heart burst with gratitude for the two outings where the younger siblings were paired with older siblings for a candy factory tour and a dolphin tour.


(Lillian at the Welcome Reception – Happy Girl)

Seeing Lillian join right in with her friends Katie Baker and Rebecca Parker is a feeling like no other. The awesome Katie Baker has claimed Lillian and Thomas as her younger brother and sister. That young lady is something else! Just love her and her entire family. The Baker family has adopted Team TLC as part of their family and we are blessed and grateful for their kindness and love.


(Thomas before the dolphin tour with older siblings)


(Team TLC at the Farewell Dinner & Dance)

I asked Thomas and Lillian for their input on the conference experience:

Thomas:

Even though it was my 1st conference, I know it was the best conference. My favorite was swimming the first night we arrived. The dolphin tour was my favorite activity because I saw dolphins and it was nice. My favorite people to meet and play with were Oliver, Colin, Brittany and Jason. Everyone was so kind and I didn’t want it to be over. I liked the Marriott because I liked the feel of it, the river view, the balconies and the pool. I liked the Savannah River and the thunderstorms. I liked meeting Robin Kehoe, Rick Guidotti, Daniel, Katie Baker, and Kellan Guthrie. I’m glad we had the conference in Savannah. I liked riding the airplane and the bus on the way to Savannah. I really liked riding the bus at night time on the way back.


(Thomas on the Riverwalk along the Savannah River … Sunset walk after dinner)

Lillian:

I liked the hotel abstract designs and I enjoyed seeing my old friends ….. Katie Baker, Rebecca Parker, and meeting a new friend … Brittany Kehoe. My favorite part was swimming in the indoor pool on the first night. My favorite activity was swimming and seeing the Savannah River. I enjoyed meeting Robin and Brittany Kehoe and Allison Weatherhead and seeing Katie Baker and Rebecca Parker again. I liked the bed at the hotel. It was so comfortable. I enjoyed riding on the Water Ferry Boat, the beautiful sunrises (thanks to my Mom’s photos), and the beautiful river. I liked eating at the Crab Shack and Spankys and The Shrimp Factory. The trip down was good except for the guy smoking in the bathroom on the bus. The trip back was fabulous except for TSA at the Atlanta Airport. I liked riding the bus at night time on the way back because I liked the sunset.


(Lillian on the Riverwalk – Sunset walk after dinner)


(Hotel abstract designs Lillian mentioned – She liked the ceiling!)


(Camilla & Rick Guidotti of Positive Exposure … Love this Man!)


(Team TLC on a River Ferry Ride)


(Thanks again Marianna Kuortti for the great picture!)

Go here for the first installment and Part 1 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here for the second installment and Part 2 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here if you’d like to see more pictures of our adventure …

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