The Annual Chromosome 18 Conference 2019: Part 6

Posted on September 6, 2019 by lillian

Hey, everyone! I just got back to Colorado Springs from the conference on July 27th. This blog post is a summary of what I did at the annual Chromosome 18p- conference this year. In case you are wondering, these are Thomas’s, Camilla’s, mine, and Chromosome 18’s website.

Here are some related blog posts: https://lilliandarnell.com/2018/07/06/annual-chromosome-18-conference-2018-part-1/, https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/, https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/ I hope you enjoy!

July 23rd:

I woke up at 9:39 am. I then looked at my phone to see if there were any messages from Macy and sure enough there was. Eventually, Macy asked where I was and I told her I was up in the hotel room eating.

Then around noon, Macy went to her hotel room to eat lunch. Then about 9 minutes later she asked where I was again. I told her that I was still in the room but I told her that I was dressed.

So she told me that she was on her way to our hotel room. Then 2 minutes later, she was at the door. So I walked over to the door to open it. So we hung out in the hotel room for a little bit before heading to her hotel room.

During that time, Macy went to the restroom there. Once she was done drying her hands, she asked Siri what the weather was in Kentucky. After she got the answer to the weather, Macy asked what time it was in Kentucky.

Then she told Siiri to type a message to me saying we were in the same room together. After she sat down for a minute, we roamed the hallways and as we approached the 6th floor I asked if she wanted to see Patty, Frank, and Debbie’s hotel room.

She said sure so we did. Once we got to the door I pulled out the room key and looked at the room number to make sure it was the right door. Then I opened the door to show her what their room looked like.

I let her see the view then I closed the white curtains again gently. After that, we went to the 4th floor again. So we could ask Camilla about the pool. We went on a mission to find the age limit of going in the pool by ourselves.

Macy and I went outside and looked on the sign on the gate but to our surprise, there was no age limit on the sign. We went back to Camilla to tell her and she suggested we go look at the sign outside of the pool on the second floor.

So we went to the second floor to look at the sign and sure enough, the age limit existed. The age limit was 14 and under. So we went back to Camilla and told her. She told us to double-check with the hotel staff in the lobby.

So we went back down to the lobby to ask. The staff said it was okay for both of us. We headed back up to our hotel room. Camilla said good but she pointed out the pool had people in it.

We waited until 3:00 pm. At 3:00 pm, people started coming back from the zoo. In about 15 minutes, we got in the pool. I kept an eye on the time too to make sure it wasn’t 10 minutes yet.

When there were about 3 minutes left, Camilla came in the pool and I told her to let me know when 10 minutes were up. When the 10 minutes were up, Camilla helped me and Macy find a spot in the shade to dry off.

Once we dried off, we headed out of the pool gate and down the steps where we ran into the rest of Macy’s family. I followed them right into the elevator and managed to get a spot next to the elevator buttons so I could press the 4th-floor button.

Once Macy and I got off the elevators, we went in opposite directions so Macy could take a shower and so I could get dressed. While I went to the restroom, I Facebook Messaged Patty to talk to her about getting the presents Patty got us from exploring The Garden of the Gods and Pikes Peak.

Eventually, I began figuring out what to put on. I finally decided upon black baggy pants that are very comfortable with the shirt I wore before going to the pool. At 4:00 pm, I arrived at their hotel room on the 6th floor.

I sat down to hang out and before I left, they handed me a bag that said Garden of The Gods and Pikes Peak while Camilla got some ‘replacement’ earrings while Thomas got a dream catcher.

At around 4:30 pm, I found Macy in the elevator room on the 4th floor waiting for me so I quickly changed my pants into my blue skirt. Then I went down only to realize I forgot my sunglasses and my little white cape so I went up quickly to grab them.

Once I came to the elevator room, the elevator that came was crowded but there was just enough space for me to squeeze in (being small has its advantages). In the elevator, among the crowd was Katie and her father who were heading down to the lobby as well.

At around 5:00 pm, I saw this party/tour bus we were getting on. I could hardly believe my eyes. The music I must say was interesting. Camilla went inside the bus to get photos of the party bus full of self-advocates like me, Macy, and Lauren.

Camilla danced to the music which was very funny. Once she left, we started riding with no seatbelts which were awesome! All the bumps made me feel like I was dancing. Macy said that she was not expecting seatbelts but she liked it like me.

Too soon though, we arrived at the restaurant called Front Range Barbqeucue and again I had another friend hold it while I got off. Once I got off, I followed Macy and the other self-advocates to the entrance of Front Range Barbqeucue.

Then we turned left and I saw three steps with no railing but I looked around and found a temporary railing. Macy went first, I went second, and Lauren went last.

While I was going down the steps, I looked down to ensure that my feet were stepping in the right place. Once I was down, I walked into the room that the self-advocates would be in.

Macy, Lauren, and I all found a spot to sit down together at. I got some water and a straw so I could drink that water instead of my thermos water. Unfortunately, when I was about to message Camilla my phone went dead so I had no way of knowing the time.

Shortly after that, the food was ready and I went to at least get two things of food. Chicken and a muffin. I knew I might not be able to eat both so I chose to eat the meat. Although, immediately I regretted my decision. I immediately wished that I had chosen to eat the blueberry muffin.

After I ate, my stomach was grumbling, gurgling, and unsettled. So I just rubbed my stomach and drink water in hopes that would settle my stomach. My stomach took it a while but eventually, it settled down some.

I was wondering about the time. I was practically talking to myself about it but Macy heard me and showed me the time on her phone. (Thank you for that, Macy!) It was almost 8:00 pm.

Soon it was time to go so I went outside and went back up the steps using the temporary railing. I found Katie and she helped me get to Macy and Lauren. We got to the party tour bus and this time my hair was blowing around due to a window open behind me.

We saw the sunset on us while on the bus. It was a magnificent sunset. I really wished I could have taken a picture of it. Macy showed me the time again on the bus. Macy and Lauren’s mothers’ all went to get tattoos and Macy asked me if I wanted to hang out with them while they waited.

Then all too soon, we were back at the hotel. We walked back inside together. And so the waiting began starting with a stop at the restroom for all three of us. Once we were done, Macy’s father asked about us having fun in the bathroom through text message.

We burst out laughing. Once we stopped laughing, we headed into the lobby and I sat with them for a while. When they were on their phones, I went to scout out a plugin outlet but couldn’t find one.

Eventually, Camilla came by and helped me find a spot for my phone and I eventually went over once it was on and messaged Macy through it. Then Macy and Lauren went up to grab their iPhone plugin cords.

I decided to go up with them so I grabbed my phone plugin and went up with them. Once Macy and Lauren got their plugins, we all found a perfect spot for our plugins that weren’t being used. So we plugged up our phones and sat down together on the floor,

Camilla stopped by to take pictures of us and I also asked for a cup of water as I already drank all my water. We sat there until almost midnight. We had a great time together.

Macy set up this group text with Lauren and I because she figured it would be easy to message us through. (Awesome idea, Macy!) I also dropped Macy off while Lauren continued on the elevator alone. I got ready for bed and then I used my phone until my eyes wouldn’t stay open.

So I got up and finished getting ready for bed. Then I went to sleep at about 3:00 am. (Yes, I know it was late but I was having fun on my phone and didn’t see the time until it was too late.)

Me, Macy, and Lauren hanging out aka Starfish Triplets! Taken by me!

Me, Macy, and Lauren.
Taken by Macy!

The Starfish Triplets aka me, Macy, and Lauren on a party tour bus! Taken by Camilla.

Self Advocates on the Party Bus! Taken by Camilla.

What do you like to do with your friends? I would love to hear your answers in the comments if it feels right to you!

Click here for Part 7!!!

Sparkle: A Sparkly Life as a Fairy Princess

Posted on January 12, 2016 by lillian

Hello, everyone! If you have a holiday you’re celebrating, enjoy it! This story is a fantasy version of my life. Hope you enjoy my story!

Once upon a time, there lived two parents who wanted at least a daughter and a son. So one night on September 13 in the year 2000, a daughter was born at 9:00pm. Her name was Sparkle because her eyes sparkled like diamonds ever since she opened her eyes for the first time. When Sparkle was 4, her mother discovered that her daughter had a short arm deletion called 18p- and her mother decided to find out as much as possible about 18p-. When Sparkle was 5, her parents had a son on November 12 in the year 2005. His name was Ocean because he had ocean colored eyes ever since he had opened his eyes for the first time. When she was 9, she went to her first 18p- conference in Las Vegas. She made 2 friends named Rainbow and Shimmer and she had a lot of fun at her 1st conference! Ever since then, she liked the conferences. She had gotten books, clothes, homemade stuff, and other store-bought stuff for Christmases to come. When she was 15, she got almost everything she wanted especially the laptop and telescope. She even got what she wanted for her birthday. So far, they live happily ever after!

Please note that I changed some of the details for safety reasons! Thank you for reading my story!

I got this at https://s-media-cache-ak0.pinimg.com/236x/73/f2/42/73f242994aa7b7d8eb50009e89b4add0.jpg but orginally I got it at Google Images.

American Tree Sparrows

Posted on June 18, 2015 by lillian

Hi there! My mother, Camilla suggested that I write a series of posts about birds on my blog since I’ve been talking about them and learning about them. Please let me know if you have any bird books, CDs, or a website you’d recommend! Here is the part about American Tree Sparrows.

American Tree Sparrows are small, round-headed birds that often fluff out their feathers, making their plump bodies look even chubbier. Like other sparrows, they have fairly small bills and long, thin tails. Their color pattern is a rusty cap and rusty (not black) eyeline on a gray head, a streaked brown back, and a smooth gray to buff breast in both male and female American Tree Sparrows give an overall impression of reddish-brown and gray. A dark smudge in the center of the unstreaked breast is common.

Small flocks of American Tree Sparrows hop about on the ground, scrabbling for grass and weed seeds, calling back and forth with a soft, musical twitter that might make you twitter, sing, or dance. A single American Tree Sparrow may perch in the open top of goldenrod stalks or shrubs, or on low tree branches. Look for small flocks of American Tree Sparrows in the winter in weedy fields with hedgerows or shrubs, along forest edges, or near marshes except for Reno, NV. They readily visit backyards, especially if there’s a seed feeder.

American Tree Sparrows breed in the far north and are hardly seen south of northern Canada in the summer. 4-6, usually 5. Pale bluish or greenish, with brownish spotting often concentrated at larger end. Incubation is by female, 11-13 days; male visits nest often, but does not incubate. Young: Both parents feed nestlings. Young leave nest at age 8-10 days, when flight feathers not yet fully grown.

Parents may lure them away from nest by offering food. Young are able to fly at about 14-15 days after hatching; parents continue to feed them for about 2 more weeks. 1 brood per season, but may attempt to renest if 1st attempt fails. Diet in the winter is almost entirely seeds, from grasses, weeds, and other plants; also a few insects and berries.

In the summer, they eat mostly insects and other small invertebrates, plus a few seeds. Young are fed mostly insects. Pairs form shortly after birds arrive on breeding grounds. Male actively defends territory, chasing away other members of same species.

Nest site is on or near ground, in grass clumps beneath shrubs. Sometimes on hummock in open tundra; rarely up to 4′ above ground in willow or spruce. Nest is an open cup of twigs, grasses, moss, lined with fine grass and with feathers (usually ptarmigan feathers). Female builds nest in about 7 days.

All wintering areas are well to the south of breeding areas. Migrates relatively late in fall and early in spring. Apparently, migrates mainly at night. On average, females winter somewhat farther south than males.

The American Tree Sparrow is a small sparrow with a long notched tail. The adult has a streaked back and wings, with two white wing bars, but is otherwise unstreaked, while the juvenile is streaky overall. Adults have an unstreaked gray-brown breast and belly, with a dark spot in the center. The tail, rump, and nape of the neck are all solid gray.

The upper mandible of the bill is dark and the lower is yellow. The head is mostly gray, with a rufous crown and eye-line. American tree sparrows (Spizella arborea) breed throughout almost all of Alaska, the Yukon and Northwest territories, the very north of Manitoba and Ontario, all of Labrador, and in northern Quebec. Their winter range includes a very small part of southern Canada and all of the United States except for the western most 250 miles, the southern most 450 miles and all of Florida.

American tree sparrows usually breed near the tree line in open scrubby areas with willows, birches, alder thickets or stunted spruce. They may also breed in open tundra with scattered shrubs, often near lakes or bogs. They spend the winter in open forests, gardens, fields, and marshes. Baumgartner followed birds for the first 22 days of development.

Order of hatching was not dependent on the order of laying. Earlier hatched birds took the lead in development. During the nine and one-half days in the nest, the four feather tracts of the birds (dorsal, ventral, alar, caudal) go from completely bare to the back covered, lower belly slightly bare, wings 2/3 grown, and tail still a stub, and the birds grow from 1.62 gm to 16.7 gm, while their length goes from 33 mm to 75 mm during the same period. They lose 1.5 gm the first day out of the egg but have gained 3 gm by day 21 (Baumgartner, 1968).

On the second day after hatching the young were able to stretch for food. On the fourth day their eyes were half open, after the fifth day, wide open. The first sounds were made on the fifth day but were very soft. Fear was acquired between 7.5 and 8 days as demonstrated by their raucous calls when touched by humans.

During the first 12 days of the fledgling period (which lasts until about a month after leaving the nest in (Spizella arborea) the birds showed a steady increase in both tail length (14-47mm) and wing length (46-68mm). At the end of the first 21 days the wings were still slightly shorter and the tails about 2/3 the length of mature birds. A tree sparrow was observed to fly 30 or 40 ft fifteen days after hatching, and a little before one month after hatching, the birds could fly all around their territory. American tree sparrows are monogamous (one male mates with one female).

Males and females form breeding pairs after they arrive at the breeding sites in the spring. Both males and female sing to attract a mate. Females become excited when males come to sing nearby. They call back to the male, making a “wehy” sound.

Males may show off for females by spreading their wings and fluttering them or darting to the ground in front of the female, then flying back up to a perch. American tree sparrows breed between May and September. They raise one brood of chicks each year. The females builds the nest alone.

The nests are built on the ground out of moss, grasses, bark and twigs. They are lined with fine grass and feathers.The female then lays about 5 eggs. She lays one egg each day.

She incubates the eggs for 10 to 14 days and broods the chicks after they hatch. The chicks are altricial (helpless) when they hatch, so they rely on the female to protect them and keep them warm. Both parents feed the chicks until 2 to 3 weeks after the chicks leave the nest (called fledging). The young fledge from the nest about 9 days after hatching.

In late summer, the families join larger flocks. We do not know when young American tree sparrows begin breeding.
American tree sparrows breed once per year. Females incubate the eggs and brood the chicks after they hatch.

Both parents feed the chicks until they are about 22 days old. The oldest known American tree sparrow lived at least 10 years and 9 months. Most American tree sparrows probably live about 2.3 to 3.4 years. American tree sparrows are migratory.

Though they are usually active during the day (called diurnal), they migrate at night. American tree sparrows are territorial during the breeding season. Males sing to claim territories and they defend their territories from others. Females occasionally chase intruders too.

American tree sparrows do not defend winter territories. During the winter, they form large flocks that forage together. Within these flocks, some birds are dominant over other birds. American tree sparrows move by hopping on the ground and on branches, and by flying.

They do not swim or dive, but they do bath frequently. They roost alone trees or shrubs, haystacks, cornfields, and marshes. In the winter, they might take shelter together under the snow. American tree sparrows are omnivorous; they eat many different seeds, berries and insects.

During the winter, American tree sparrows mainly eat grass and weed seeds. During the summer, they mostly eat insects and spiders. American tree sparrows search for food among plants on the ground and the branches and twigs of shrubs and trees. In Massachusetts, they are often seen in flocks, feeding at bird feeders.

American tree sparrows need to drink a lot of water each day. During the winter, they eat snow in order to get enough water. Known predators of American tree sparrows include northern goshawks, sharp-shinned hawks, screech owls, pygmy owls, Cooper’s hawks, American kestrels, weasels, foxes, and red squirrels. When approached by humans, American tree sparrows give a rapid series of “tset” calls.

It is unknown how American tree sparrows respond to other potential predators. American tree sparrows are very important members of the food chain. They eat many weed seeds and insects and spiders, and they are an important food source for their predators.