Annual Chromosome 18 Conference Part 2

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Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

June 30th: 

I woke up at 8:30 am the next morning to plug up my electronics. After I did that, I fell back to sleep until 10:00 am or 11:00 am. Once I woke up again, I felt much more relaxed and relieved.

So I took my time eating breakfast, getting dressed, and eating candy (it was Candy Day). After I finished eating my candy, I went to the elevator area to head down to the lobby.

So I waited for the elevator to come. I got down there at 11:30 am and I stayed down until 11:40 am when I started to get hungry. I ran into a lot of my 18 p and q friends as well. So I headed back to the elevators to head to the room, I ate a fruit bar and grabbed a sip of water as well in the room.

The elevators had funky music playing and had blue lights on. It took some getting used to that. Anyway, the elevators were interesting. You could actually hear the robotic voice of the elevator on a different floor and you could hear the elevator stopping at your floor before it even opened.

Once again, I headed back down on the elevators. I got back down there exactly at 11:50 am and I chose a good spot to sit where I could greet my friends. Camilla came and gave me french fries.

After I finished eating lunch, I chatted with Macy through Facebook Video Chat. I took a selfie right there too as well. I went up to the room again at 5:00 pm to eat dinner and decided to check out the 5th floor early so I was comfortable with where everything was.

After that, I went to the 7th floor to take a sneak peak of the pool. When I finished, I went up to the room to get ready for bed and finish chatting with Macy for the night.

Around 12:30 am, I fell asleep as I knew that Sunday would come more quickly if I went to sleep earlier.

A selfie of me.

See part 3 here…

Annual Chromosome 18 Conference 2018 Part 1

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Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

June 29th: 

We woke up early to get to the airport and through security. This time I went up the escalator with Camilla holding my hand since I was scared while Thomas went up the stairs.

We got on the airplane right on time. We saw a beautiful sunrise as we were flying up into the sky. The sunrise was amazing. We sat on the first plane for about an hour and watched clouds go by.

I only had apple juice and water for the first plane flight since the flight was quick and because I wasn’t hungry. I also played a few games on my phone and tablet as well and read a book. Once we landed at the McCarran International Airport which is in Las Vegas, we sat down for a couple of minutes before we pre-boarded the second and final plane flight.

That flight happened to be the longest flight ever. Anyway, on that flight, I had honey roasted cashews, Fritos® chips, and lightly salted peanuts (they stopped making the honey roasted peanuts).

I also had apple juice and water again on this flight. I played some games on my tablet and on my phone. I even read a chapter in the book I was reading. We sat on the plane for about 4 hours. Once we got closer to Baltimore, I started recording our landing in Baltimore.

Once we landed, Camilla only found one suitcase sadly. Around the same time, Camilla’s friend was here to drive us to the hotel. So Camilla discovered the other suitcase was held back in Colorado but it came in 2 hours later.

Camilla’s friend eventually went back to get the suitcase for us. We discovered that we were the first ones to arrive at the hotel so it was a little boring but I was able to keep myself busy.

I talked to Macy Miller (a close 18p- friend of mine) through Facebook Messenger. We were both very excited to see each other again in 2 days. I also texted Rebecca Parker (a close 18p- friend of mine) and Katie Baker (a close friend of mine) to let them know I was at the hotel.

Camilla ordered dinner from room service which was french fries for me. I was so tired that I fell asleep without cleaning off the bed of my stuff and without turning off the booklight.

A selfie of me on the airplane

Pretty sky.

Awesome sky.

Pretty sky.

Outstanding view!

Striking view!

Cool sky!

See part 2 here…

Fundraising for the 2018 Chromosome 18 Family Conference – Rainbow Balloon

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Hey, everyone! Remember in previous years when I sold prints or copies of my art? I have interesting news!

I’ve decided to sell prints or copies of Rainbow Balloon to fundraise and help my family attend the annual Chromosome 18 conference. The print will be about an 8 X 10 size and mounted on foam board or similar ready to hang.

The Chromosome 18 conference helps me get over my fears and my emotions. It helps me feel brave, courageous, and enjoyable. Here’s an example: Last year in July when my family and I were inside the airport, I was fearful, nervous, tired, and afraid; yet, the view I got from the airplane was amazing and it was all worth it.

The really fun part is that YOU get to choose your own price! The base price is $15 – $25 to cover cost of printing, mounting, and shipping (US Only – Our overseas friends can email my mom at Camilla Downs @ gmail.com if you’re interested in purchasing a print).

Use this Paypal link and enter your own amount over the $25 base price. For example, if you want to donate $50 towards my fundraiser, then you would enter $75. Go here.

OR …. If you simply want a photo quality print (minus the mounting), the base price is $15 to cover cost of printing and shipping. For example, if you wish to donate $25 to my fundraiser, then you would enter $40. Use this Paypal link. (Please note whether you want “Just the Print” or “Mounted Print” and the Name of the print you are buying)

The Chromosome 18 conference means a lot to me because I get to meet new friends and spend time with old friends. It also means a lot to me because I get to travel to a new city with my family.

I want to check out the swimming pool and have fun with new and old friends. I also want to explore the city if the weather and temperature are good. I also want to check out new restaurants.

Please visit this link to see a summary of all the drawings being offered. Thank you! https://lilliandarnell.com/2018/06/06/fundraising-for-the-2018-chromosome-18-family-conference-in-summary/

Here’s a story inspired by Rainbow Balloon:

Once many years ago, there lived a smart unicorn who longed to travel the world. The unicorn was named Rainbow. So one day, Rainbow found some harmless fire and Rainbow found some rainbow paint, rope, a small piece of metal, a basket, and plastic.

Rainbow also managed to find a picture of what Rainbow wanted to build. So Rainbow set to work on making the thing in the picture. First, Rainbow used the plastic since she already had a mold to work with.

Second, Rainbow used the rainbow paint to make the thing look outstanding. Third, Rainbow used the rope to connect the basket to the first part of the thing. Last, Rainbow attached the brake (metal) and fuel (fire).

Now Rainbow needed a name for the thing. “Why not just name it after me?”, thought Rainbow. So she figured to call her project Rainbow Balloon. So Rainbow traveled all over the world at last.

So if you see Rainbow the unicorn and her balloon, wave and she just might wave back with her hoof.

Here’s a story inspired by how I feel about attending the Chromosome 18 Conference:

Once many years, a little girl named Rainbow loved traveling to new places. One day, Rainbow decided to write a story. “Hello! My name is Rainbow. My family and I have been going to a conference called Party Dancers for many years”, wrote Rainbow.

One day at the Party Dancers, she faced many fears in just 1 day. Rainbow was very determined to conquer more fears. A couple of years later at the Party Dancers, Rainbow met a friend she connected with through Bookworm the previous year and had so much fun. Rainbow knew many friends and people that year.

Rainbow even tried to get in the cold pool. This year, Rainbow was pumped to go to the Party Dancers again since she found out most of her friends would be at the Party Dancers. Rainbow traveled to Sugary Land for the Party Dancers.

Again, Rainbow met the same friend again and chatted and had fun. Now, Rainbow was pumped to go to the next Party Dancers conference. Rainbow finished her story and sent it off to the publisher.

The publisher was very impressed. Many years past and Rainbow’s story was now a best seller book.

That’s the end of the 2nd story.

My Adventure To Surprise Part 13

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 9th, 2018:

I woke up at 7:10 am and we got into the car at 9:00 am but we stopped by the store so Frank could get gas, Patty could get breakfast, and have fun. Anyway, at 10:00 am we were on our way.

The Motel 6 had some decent beds. I was really comfy at 7:10 am so I didn’t want to get up at all. I knew that I had to get up sooner or later though. Once I was out of bed, I was very relaxed and refreshed.

At 12:00 pm, Frank stopped at a gas station. I also ate my lunch when Frank stopped at the gas station. After 12:00 pm, we drove to Fernley and saw the Love’s gas station where Frank stopped for gas the last time.

I saw the mountains that hide Reno and Sparks shortly around 2:26 pm which is always awesome to see. Around the same time, we arrived back in Reno. This is where the 2-week vacation ends.

Selfie of me

That’s the end of My Adventure In Surprise! Thanks to Patty and Frank for making the trip a great experience!

My Adventure To Surprise Part 12

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 9th, 2018: 

I woke up at 5:30 am (surprisingly) but laid there until 6:30 am. When I got up, I went directly to the restroom. Once I came out, I went into the bedroom to put on my clothes.

After I got dressed, I went to eat breakfast and eat my candy. Then I sat down and relaxed until 9:30 am when I was getting anxious. Around 10:00 am, we stopped so Patty and Frank could have their adult beverage.

Anyway, by 11:00 am we were on our way to Kingman. As usual at 12:15 pm, got some french fries in Burger In-N-Out but fortunately didn’t need to go to the bathroom. We were back on the road and we took in views and I talked to Rebecca through text.

We arrived at Beatty at 4:00 pm. We pulled into the Motel 6 parking lot and we got most of the stuff we needed for the night out of the car. By the way, Robert came too but anyway, we went to Denny’s across the parking lot in the heat.

When we were done, we went to the store that has candy, food, and more. We went through the back door to get to Motel 6 (the hotel we stayed at). Anyway, I finished eating dinner and jellybeans. After, I got ready for bed and stayed up. I fell asleep at 11:30 pm.

Selfie of me before going to bed

Selfie of me in the car

See part 13 (last part) here…

My Adventure To Surprise Part 11

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 8th, 2018: 

I woke up at 8:00 am with itchy ankles. When I went into the living room, I noticed familiar swollen bumps (mosquito bites). So I spent the day trying to stay off my ankle but I did get up to pack a few things throughout the day.

I ate lunch at 1:00 pm. I also colored that afternoon until evening. After dinner, I colored until 9:00 pm. I started my schedule and finished at 9:35 pm leaving me 35 minutes to spare so I started playing games on my phone until it went dead.

By that time, it was 9:57 pm so I just helped Patty and Frank with decisions for the trip back to Reno until 10:00 pm when I got into bed. I tried to go to sleep at 11:15 pm but realized I needed to go to the restroom so it wasn’t until 11:30 pm when I went to sleep.

Mosquito bites on my ankle

Mosquito bite on the bottom of my foot

See part 12 here…

My Adventure To Surprise Part 10

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 6th, 2018:

I woke up around 8:00 am. I decided to have a resting day. After breakfast, I played on my phones and read. After lunch though, I got ready to get in the pool and only stayed in the pool for 30 minutes.

Afterward, I got dressed and headed into the living room to color some more in the giant coloring pad.

After dinner, I continued coloring and played on my phone some until I started my schedule. As usual, I got in bed at 10:00 pm but stayed awake until a little past midnight.

As you should know, I went to sleep past midnight.

June 7th, 2018: 

I woke up around 7:00 am. So I got up and decided to feel relaxed until the end of my trip. Anyway, I ate breakfast and decided to color in the giant coloring pad. I started feeling hungry again. After I ate, I colored more, read, and played on my phone.

After dinner though, I started coloring some more. Afterward, I took a long break and sat outside until I had to do my schedule. I managed to get into bed at 10:00 pm. I went to sleep shortly after midnight.

Me with a pool noodle

Me with Frank Romano

Amazing sunset

Gorgeous sunset

See part 11 here…

My Adventure To Surprise Part 9

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 4th, 2018:

I woke up around 8:00 am. I decided to make that day a relaxing day as well. So, I just played on my phones, ate meals, and colored in my giant coloring pad until my finger hurt. While I took a break, I sat outside and got to see an awesome sunset and a real hummingbird. I was able to get a few pictures (the hummingbird is now a guest visitor at the Romano Duo backyard)

Anyway, I got into to bed around 10:00 pm that night but I stayed up until 12:30 am that night.

June 5th, 2018:

I woke up at 9:00 am that day. Shortly after breakfast, I played on my phones and read. After lunch though, Patty and I went to the Surprise, AZ library (has a real name) to get me new books.

We were in and out in just 30 minutes which was crazy because I usually take 1 to 2 hours in libraries. Anyway once we got back, I colored some more. I managed to take a picture of a fully bloomed rose plant as well that day.

Around 8:30 pm, I sat outside to get fresh air. I also got more magical photos of the sunset. Again,  I got into bed around 10:00 am but played on my phone and read. Around 12:00 am, I went to sleep.

Me wearing a beautiful new shirt.

Sunset

Beautiful sunset

Beautiful clouds with trees

Gorgeous sky

Awesome sky with the sun shining

A camouflaged clock that shows the time and temperature

Magnificent sky!

Unique sky!

Beautiful rose

See part 10 here…

My Adventure To Surprise Part 8

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 3rd, 2018: 

I woke up at 10:00 am that day. After breakfast, I got ready to go to Michael’s. After I got ready, I went into the bedroom to put on my sandals. After I got my water, we headed to the car.

We went to Trader Joe’s before Michael’s to get some more food for me. After we got back in the car, we headed to Michael’s so Frank could drop Patty and me off at Michael’s while Frank went to Wal-Mart.

We took our time looking and found a giant coloring book and a wooden birdhouse to paint as well as some special pens and dual markers. After we finished, we explored and winded up finding me more canvas for paintings.

By the time we were done at Michael’s, it was 3:00 pm so I had a short lunch and saved the rest as a snack.

It was 4:00 pm when I was eating but at 4:30 pm, I was hungry again so I ate the rest as a snack. I was still hungry when dinner was ready so I was able to eat a lot.

After dinner, Patty found a movie for us to watch. After the movie was over, I started my schedule. Once again, I was able to get into bed at 10:00 pm.

I went to sleep around 1:00 pm that night.

Rainbow ball. I borrowed this photo from Google Images

See Part 9 here…

My Adventure To Surprise Part 7

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Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 2nd, 2018:

I woke up around 8:00 am that morning. I was excited to start a new day in Surprise, AZ. I got up and started the day just like any other day. After breakfast and candy, I played on my phones and read a little. After lunch though, I was talking to Patty and Frank.

I also worked on a blog post which is https://lilliandarnell.com/2018/06/05/fundraising-for-the-2018-chromosome-18-family-conference-happy-world/ if you want to check it out.

After dinner, we started watching a movie on Patty and Frank’s TV (don’t care about TV but I was bored so I was grateful for something to do). Around 5 minutes into the movie, I stepped out front to see how hot it was.

It was a warmish kind of hot that night so Patty, Frank, and I went on a short walk to the empty park. I took a couple of pictures as well that day.

Once we got back, we started the movie back and finished watching the movie shortly after 9:00 pm. Afterward, I started doing my schedule. I finished up and got in bed at 10:00 pm. I stayed awake until 2:00 in the morning.

Me messing with an old-fashioned selfie stick.

Me with Patty

Tree. A little blurry though

Lamppost light shining on a tree.

See Part 8 here…