Throwback Post: The 2013 Chromosome 18 Conference

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July 26 2013: Almost ready to board …. The 2013 Chromosome18 conference adventure has begun!

Team TLC at 30, 000 feet … Overflowing with gratitude for all we are blessed with!

Next part of the 2013 Chromosome18 conference has begun … Las Vegas to Atlanta …. I’m in the middle of a Thomas and Lillian sandwich!

Last stop today on the 2013 Chromosome18 conference adventure …. The adventure continues tomorrow! Atlanta to Savannah!

July 27 2013: Next phase of the 2013 Chromosome18 conference Adventure …. Planes, buses and automobiles!! Planes are done, now for the bus and then automobile in Savannah! Now, this is truly an adventure!

Team TLC is on the bus! A first for all 3 of us … pretty cool! Plugins at every seat and free WiFi! Onward with the 2013 Chromosome18 conference adventures! ETA in Savannah is 1:30!

We made it to Savannah! Thanks Mark Sogard for picking us up at the bus station!!! The adventure TO the 2013 Chromosome18 has come to an end! About to check in at The Marriott!

Grateful for yummy fulfilling food …. had our 1st meal of the day! Been giving and getting lots and lots of hugs! Beautiful hotel, beautiful riverwalk.

Hmmmmm ….. They had to make a law for this? Hmmmmmmmm ……

July 28 2013:

Beautiful walk in Savannah this morning. Nature had some heart warming beauty to share. Absolutely AWEsome!!!!

Swimming adventures for Team Member T & L last night! They both slept sooooooooo good!

Yum!!!!!! I’ve got crab in my hair and all over me!!! Muscles, clams, shrimp and crab adventures!!! Thomas loved the shrimp, muscles and crab! Lillian had fries! Overflowing with gratitude …. And seafood!

FUN 1st night y’all! Thomas kissed a parrot and pet a tortoise! Lillian hung out with her friend Katie!

This is how Team TLC rolls … we come to Savannah, Georgia to the Chromosome 18 conference and spend 45 minutes on our deck playing with shadows! Thank you to our beautiful neighbor, Robin Krueger, for playing with us and lending her flash so we could have darker shadows. Huge Thomas, Camilla’s boot, a gigantic heart, and Robin’s bunny!

August 1 2013:

Thomas with his friend Oliver yesterday in the hotel restaurant, blue …. Thomas just loved Oliver …. Oliver was telling everybody about Thomas, even the wonderful lady working behind the lunch buffet counter. I had Thomas go introduce himself to her so she would know who Thomas is! When I picked up Thomas yesterday from the care/playroom, Oliver showered him with kisses on top of his head. Thomas doesn’t even let me kiss him that much! Oliver loves Thomas and Thomas loved playing with him! I’m sure Oliver’s parents are tired of hearing Thomas’ name!

Farewell dinner and dance …. Team TLC‬, Lillian, Katie, and Rebecca and Thomas and Kellan Guthrie! FUN and LOVE!

Last lunch in Savannah ….. YUM!! So grateful!

More farewell dinner and dance adventures … Lillian, both Katie’s, Rebecca, Kaylin, Remy and I cannot remember the other sweet young lady’s name …. Thomas playing the guitar, and Lillian and Pam.

River ferry ride adventures for TEAM TLC! That’s our hotel as we pull into the ferry landing. Ran into IM too!

Thank you to Jon Baker and Kaitlin Baker for taking Team TLC to the Greyhound bus station this afternoon! We are grateful for and blessed with the love and kindness of the entire Baker family! Team TLC loves all y’all ….Abby Baker, Missy Baker. We’ve got about 30 minutes left before we arrive in Atlanta.

C18 2013 Trip Katie and T and L

Thomas on dolphin cruise …

August 1 2013: I love this AWEsome man … He listened to his beautiful soul years ago about the true meaning of beauty and simply exudes love with every smile and hug he shares. Rick Guidotti lives and breathes and shares his passion ….. and it benefits humanity by creating a positive shift in this World.

C18 Trip 2013 Camilla and Rick

July 30 2013:

Good Gosh! Mother Nature shares some beautiful stuff down here y’all! It’s gonna be a GREAT day! Grateful for waking up this morning, the air I breath and being able to go for morning walks!

Words of Wisdom from the Self-Advocates during their presentation this afternoon. As I listen and take in their wise and knowing words, I think to myself ….. “What the heck excuse have you got for anything!”

We all have something that is similar about us. -Megin Smith
Don’t give up, keep on trying. -Katie Bentley ( Rhonda Bentley)
Life is complicated but hey, no one’s perfect. -Megin Smith
Don’t listen to anyone putting you down. You can do it! – Liz Cody
Have fun and be positive
Have fun and don’t stop – Don’t know who made these last two comments … had my eyes down typing!

Candy factor tour adventures for Team Member Thomas! He got paired with older sibling Dalton. FUN! Katie wanted her picture taken with T and L. She loves them …. and they love her. Me, Thomas and Lillian went out for a walk after dinner …. great time!

After dinner walk along the river adventures for Team TLC! Love!

August 2 2013:

“Idiots” ….. Lillian’s descriptive for Atlanta airport TSA …. I’ll take that Lillian ….

Team TLC at 30,000 feet above New Mexico bringing our 2013 Chromosome 18 conference adventure to a close. I’m a Camilla sandwich again!

Home Sweet Home …. Let the unpacking begin! What an absolutely GREAT adventure!

Conference crashers ….. the kind we like! Some of Rick’s friends live in Atlanta. They came to see him and hang out with us some! They just got married and are members of NOAH … National Organization for Albinism and Hypopigmentation. They met at one of the NOAH conferences! Such great people! What FUN that they got to see Rick Guidotti and hang out with us too!

More day after conference pictures …. Lillian, me, Oliver, Thomas … Me and Susan Moran …. Lane, Colin and Thomas … Beautiful people!

Not so great of a picture ….. yet wise and knowing words from the sibling panel ….. “Siblings are okay with things being DIFFERENT as long as their needs are met.” – Catherine Cody Larson …… “There will be more people who stand up for them than make fun of them.” – Unknown ….. and lots of “They can do lots more than we give them credit for” ….. Love these siblings!


August 3 2013:

Last of the Savannah pictures …. More that I took on my morning walks … Such a GREAT time!!

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August 3 2013:

GREAT picture Mark! I was just thinking that I should have taken a picture of this! YAY YOU!! This was our lunch buffet … 402 people!

Photos from the open album  go here …

Last of the 2013 Chromosome 18 conference pictures y’all!

Throwback Post: Chirping Smoke Alarm With Guinea Pig Olympics

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August 15 2015:

A miraculous event happened this morning! It’s gonna be an amazing day! The smoke alarm did NOT start chirping for battery change until everyone was awake this morning!! How often does that happen?? Wahooo!! Here’s wishing a blessed day to all y’all!! xoxo

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August 15 2014:

We had the Guinea Pig Olympics here last night. Lovey is the champion at paper towel roll throwing!! Go Lovey!!

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There was a party in my office chair earlier! They left room for me too! Everybody needs a green gorilla in their life … xoxo

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August 15 2011:

First day of kindergarten for Team member T!!!

Throwback Post: Parent to Parent

**THROWBACK POST**

August 15 2015:

It’s finally here! Today’s the day I get to facilitate the Parent to Parent Support Volunteers training sponsored by Family TIES of Nevada. Participants are parents of children with special healthcare needs or disabilities who want to provide emotional support and information to parents who have a child with the same or similar condition and are in need of support. We have an absolutely beautiful and perfect location for the training and a GREAT group of parents (including one dad!! YAY!!) I’m so excited! Gonna be fun and inspiring!! xoxo

What an amazing, fill me up day!!! Just got home from facilitating the Parent to Parent Support Volunteers training. Doing this was absolutely in line with my inner ding! Glad I answered when Melanie Kauffman rang that bell! I thoroughly enjoyed myself and have so much respect for the amazing parents who volunteered their Saturday to learn how to be and sign up to be a support parent. xoxoxo

Chad Basil the First – One Month Update

January 8 2022

Basil has been with us a month now. I finally got to take my own photo of him last night.

He’s making great progress. He actually lets me see him now, will play with his favorite toy with me, has smelled my fingers and toes, and doesn’t run when he hears my voice.

He’s getting more comfortable with Thomas, letting Thomas touch him, and coming out from under the bed more often.

He’s also getting more brave, and mischievous. He’s been exploring the house in the middle of the night, leaving bits of his findings on the living room floor.

Look who came into the living room last night, while I was still awake! 🥰🥰🥰 I think he would have stayed longer, but he heard voices coming from outside, and got spooked.