It all began going to Dr. Stratton for a baclofin pump refill and botox on my right hand. When we got a there, my mom and dad told Dr. Stratton that I have been struggling to breathe while eating and I was tight all of the time, especially when I ate. So she bumped up the dosage to 5 percent which is not a lot. With all the problems my mom and dad told her I was having including the seizure, she thought it would be a good idea to admit me into the hospital because I had also lost 10 lbs in the last month in a half! My parents thought that it was a great idea. After getting botox and refilling my gas tank, we walked to the special care clinic. For some reason the botox hurt less than the baclofin pump refill. I think that I was worried about it hurting so much because my mom kept on telling me that it would hurt when I asked her. When we got to the room we were going to stay at, people came in and asked all kinds of questions about me since we were new to this children's hospital. My mom mentioned to the doctor that I don't get enough fluids in my body because my urine is always dark, especially since we live here now I have to drink a extra water because there is no moisture in the air. Which is also why I don't have bowl movements as frequently. She also told him that I didn't really have that much of an appetite ever since I started taking my seizure medicine again. The doctor said that one of side-effects to zahnisimide is depression and anorexia...yeah, I was pretty messed up!! After that he put me on a liquid diet and told someone to give me a I.V. They also made me drink half of a bottle of Gatorade with one packet of miralax mixed in it every two hours. Ever since I got the baclofin pump I have been more constipated more often. Then after staying for a day in the hospital, the doctor wanted to see if I would be a good candidate for the G-tube. So they wanted to do a swallow study with me laying flat on my back to see if anything comes back up. Once they got me on the table I started to get real stiff and started arching my back every time I would take a drink. Next they did a swallow study with me sitting up. I didn't really eat good because I usually move my head to the left when I am eating and I couldn't do that. When we finally got the results from the swallow study, the physician said that I am a good candidate for getting a G-tube. He also said that I couldn't eat or drink anything after 12am once he figured out what time the surgery was going to be on the next day because he had other people to operate on in the morning. At around 12pm the next day, the transporters came and moved me to the operating room while I was laying on the reclinable bed. My dad wanted to go with me until I got to the operating room. My favorite part about the surgery and including all surgeries I have had before, is when they knock me out because it is really the only time that I feel that I get a nice two hour nap without being woken up for a vital checks. You really never can get good sleep in the hospital because stuff is always beeping. After the surgery was done, I had sharp pain every time I would move and whenever my dad made me laugh for the first week. I think that the G-tube definitely has been the most helpful for me because after a week of having it I finally feel like I am finally getting enough water, nutrition and calories. I haven't been weighed yet since we got out of the hospital but I'm sure they will get one with my next appointment. All that I'm hoping for is that I can at least gain back the ten pounds I lost. My favorite part about the G-tube by far is that I don't have to take any kind of medicine by mouth anymore! The only thing my parents has to do is make the medicine small enough so that it doesn't clog up the tube while it's feeding me. Anyway, I think the moral to this blog is to always listen to your body, stop with whatever you're doing and reboot. Now, after getting the surgery I have more energy and I absolutely love it!
Three weeks ago mom (the activities coordinator) got us some tickets to go see the Colorado Rockies baseball team so we all went to go see them play against the Cardinals. The place where we sat at was up high. The Rockies did awesome! The score was 8:4. Actually, the team is doing really good so far. They are not in the same league as the Astros but the Houston Astros are in first place and the Rockies are right behind in second place. Caleryn's favorite part was the breeze we had the whole time. The weather was awesome all day, it's probably the best part about living here!
Then we went for a drive to Golden Gate Canyon State Park which was about an hour away. The drive there was really cool because you were really in the mountains and there would be steep cliffs right on the edge of the road. I guess they don't really think rails along the roads are needed in Colorado but THEY ARE! Some of the roads were super steep too. Mom was kinda freaking out. I think dad wants to take Nana and Papa there to go fishing when they come up. There was still a lot of snow up there so it was also really pretty. Anyway, we stopped for a bit so Dad could go fishing AGAIN and yes, he caught a lot of fish.
So Caleryn had her end of the year preschool program at Our Lady of Fatima. Now, remember she was only there for one month....and it showed!!😂😖 She came out well, like a princess waving to everyone and it all went downhill from there. The first song they sang was the ABC song and she was kinda into it. Next was the I'm a Little Teapot song and she did the movements for that song. Then after that, the next seven songs she just stood there frozen like a bumb on a log!! She was in good company because two other kids at the the end of the lines were not participating either. I wonder if the teachers put those kids at the ends on purpose..the slackers! One little boy looked like he was just exhausted and rubbed his eyes the entire time. One little girl just completely turned her body around in order to not participate. And then there was Caleryn, just standing there frozen! She seems to have a pattern of doing the same thing at her last two preschool programs and her dance recital. She acts like a crazy clown all the time at home but when she gets in front of a crowd she freezes for some reason. It was actually really funny watching all the kids perform.
That same weekend, we went Red Rocks Amphlitheater where they play concerts. You really can't explain a lot of what you see here because pictures just don't do it justice, you have to see it in person. It's pretty much and open air concert in the Rocky Mountains. It's supposed to have awesome sound. We haven't been to a concert yet but it looks pretty cool.
My name is Cameron Broyles, I'm 16 years old and I started my blog 5 years ago when I was 11. I have paraplegic cerebral palsy and cannot communicate in a traditional fashion. I am home-schooled now but I used to go to main stream public school. My love of exploring first began with going on field trips to learn about history. I play power soccer and it's become my sport of choice! I am originally from Texas but now I live in Colorado and LOVE it! I love to travel and explore but the majority of times it is much more difficult than the average person. I want this blog to not only be my mouthpiece for my friends and family but also give some ideas and maybe light a spark for other people with disabilities to get out and explore life! I was first coerced into starting a blog from my mom and dad and I have to admit that sometimes it's not my favorite thing to do but what I love most about having a blog for these past 5 years is that it's a daily reminder of all my blessings from God and how grateful and thankful I am for everything I have in my life.