Why I have a Tube?

This past week I have had a cold, a bad cold,  I had a sore throat, my nose ran, everything. It made me think how different it is when I am sick verses other people, because I cant have halls candies or cough medicine. I cough but there is nothing anyone can do to make it better.

I had to have ice cream cake instead of halls since it melts and puts me less at risk for aspirating. Aspiration is kind of like when food goes down the wrong way, because for me it goes in my lungs. For me, aspiration is caused because I have a hard time swallowing, this is popular in people with Cerebral Palsy. Aspirating can be very dangerous because it is a cause of pneumonia.

I began getting tube fed in grade 8 but I was still eating meals as well, but I really wanted just the tube.  I remember having macaroni with soup and cheese on top everyday, this was something that was easy to eat and didn’t cause me to aspirate as bad. Everyday after school I would have thickened chocolate milk, it tasted awful but we had to thicken it so it would be easier to eat and be safer for me. I remember bawling my eyes out at supper because it was frustrating trying to eat before the tube and I wanted to just use the tube. So in grade 8 I got my feeding tube, I had to go to Edmonton Stollery Children’sswallowing

Hospital, I got a long one first for a bit but then it was switched to a shorter one. Nw it is like a balloon in my stomach. When I first got my tube, I began getting abdominal migraines, and I would throw up everyday. Abdominal migraines, are not headaches, they are stomach pains that are caused by the same triggers as migraines. It took 3 years for them to figure out what was wrong and why I was having such a hard time!

Did you know that between 150 000 and 300 000 adults in Canada have long term feeding tubes? Mine has been in for 8 years. I eat every 3 hours. Up to 3 times a week I can have a treat that I eat through my mouth, my favourite is blueberry cheesecake. The reason I have the feeding tube is so that I don’t aspirate as much. A positive of the tube is that I am healthier and I am not losing weight. The negative of having a feeding tube is not being able to eat what I want and I have to be careful of what I eat and to eat slowly when I do have my treats. If I eat a treat that day I find I cough more while I am sleeping, and it can be uncomfortable and not safe for me. Having my feeding tube is the best decision I have ever made for myself, I know it sounds weird, but I am so glad I did it, because eating was so frustrating.

Birthday Party Part 2!

This week has been pretty busy! On Friday I went neon bowling with Rose Club and my staff Melissa helped me. We use a ramp to hold the ball and I am able to push it down. Melissa is able to move the ramp around so that the ball ends up where I want it too. Because it was neon bowling I wore a tie die shirt that I made with Rose club last year, it glowed under the coloured lights. IMG_2867

 

 

 

Saturday my grade 1 teacher Ms. Cherniak and her mom came to Camrose, they live in Wetaskiwin. They brought me presents! I got lots of bath bombs, and some coconut lotion and shower gel, a new outfit and lots of earrings. I made Ms. Cherniak a pillowcase with flowers on it that I crosstitched because it was her birthday too in May.

Saturday night my room mates and I watched a movie called Kissing Booth which is on Netflix, it was very funny! I would recommend that people watch it, my room mates liked it too. I sat in a light brown chair with my red pillow and my Justin Bieber blanket. I have gotten to see Justin Bieber live in Edmonton way back in 2012 it was pretty cool.

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Happy Canada Day!!

I live super close to a Canada Day Celebration. My dad took me to the celebration on Sunday. We got there in time for cake, I got to eat chocolate cake. Then I got my face painted with a butterfly, but it was a very long wait because it was so busy. We were lucky because the celebrations were so close that we did not have to drive, we were able to walk back and forth which was lucky because there was not a good enough bathroom, out houses do not work for me. I had to go back to the house for my feed, but we went back to the party after. I got a tattoo of a rose, they are my favorite flower because it is my birthday flower and it is the symbol of our city too! There were bands playing so we were able to see those, a few of the ones who preformed were ‘Big Smoke Revival,’ ‘Dextress,’ and ‘Sawbones.’ After the bands were done playing, my dad and I went back to my house and watched the fireworks, we had some friends over and everybody watched the fireworks in the driveway!

I have been busy with Roseclub and look to be even busier this month. We are going neon bowling next week and to Kray Farms in Lacombe the following week. I am forward to them but I have to take my unpowered wheel chair because it is hard to get around in my normal one. There are too many bumbs and when we go to a bowling alley there is a ramp that I cannot get over because my chair is too heavy.  I cant wait to show you guys my next few adventures and what it is like for me to go to these places, it might show you what it is like for me and how I overcome these obstacles.

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