Kicking RS's butt

Another Abby post:

It's Abby again. This post is going to be more about kicking RS's butt. There are many ways medically but mentally is also important. My friend has something similar and we sometimes talk about, what will we do when people make fun of us. Well, they don't know that even though we are not the same as others we are kicking our disability's butt. You need to know, you will have bad balance and you will need to roll your head. If you've done it for 9 3/4's years you forget about rolling your head. But balance can be hard because you're just the way you are, but that doesn't mean you aren't doing good. For me, getting across the balance beam without falling is awesome and it also mean I am doing well. Most kids would be pulling there hair out if they couldn't make it across a balance beam but for me it's really great. 

But also, you need determination. You need to be yourself no matter what. If it means rolling your head and having not the best balance then it's completely fine just remember that you are kicking RS's butt. 

Food Challenge - By Abby

Abby had to write an "expert" piece at school and she chose to describe the process of going to a food challenge. She's been to four (I think, maybe five) and is a veritable expert! 

Do you know what an allergy food challenge is? In this piece you will find out what the food challenge is and how it works

First and Food

---

  Starting a food  challenge is the most important part because it starts you’re dietary future. First of all, you have to go into the waiting room before you check in. If a you’re child is doing the food challenge he or she will have to get a bracelet that has his or her name and age and number thing, because you’re a patient there. After you get seated the nurse has to check the child up to make sure is not sick because if you were after you ate the food the nurses would think it was the food  but it wasn’t. They check your blood pressure, oxygen and make sure there are no rashes on the patient.

Then, they give you a little bit of food to start only like half a bowl or piece. It starts out with a tiny piece because it you’re first time eating it so you wanna start small.   

Again and More

---

       After you've eaten a little you wait for 20 minutes before eating a bigger amount.  You have to wait 20 minutes because the food needs time to situate and time to make sure that it doesn’t disagree. If it does at any point in the challenge you will be sent home and can try again in a year if you’d like to. Usually, if you go through the whole challenge it's about 5-8 doses and 20  minutes in between.

After the Challenge

---

  After you’ve finished the  food challenge you still have a while. You have 1 hour till you can eat and 2 ½ hours till you can go home.  You’re going to get truly bored so hopefully you brought toys. Also, there is a play area with a bunch of toys to play with. After a while, you have to have your final check-up. They do the exact same thing as they did in the beginning.

Indeed, this food challenge is long and yummy and something you’ll never forget. It’s really exciting to know that you might outgrow your food allergy or have. If it turns out that you haven’t  outgrown your food allergy, next year you can try again.  

A Unique Guest Post

I Am hoping to incorporate a new "series" on this blog which will include blog posts from individuals living with RS. If you or someone you know would like to contribute please let me know via the contact information in the right column. The first blog post in the "Life With Rhombencephalosynapsis" Series comes from my girl, Abby.


Written By Abigail Fescoe:

Heres the thing I have RS. People think I'm different that way. But I'm not. Here's a symptom of RS, I roll my head a whole lot. People like classmates, friends in and out of school, ask why do you roll your head? I've told some people why and from all that I learned, if I do people just stop asking and I can be myself. Another symptom is that balance is hard. I can't do activities that need really good balance, like the balance beam. Thats why I have to take PT. But I have taken PT since preschool all the way till now [which I'm in 2nd grade] and probably for a while longer. I also look at other people and what they're doing, and I get better and better. Here's a little story of my bad balance; me a few years ago me and my twin sister Grace were all riled up and it was dinnertime. At dinner we were laughing and jiggling around , and accidentally I slipped off the bench. Grace tried to grab me. But she did not. I fell on my tooth. It hurt VERY badly. Daddy [brian fescoe] picked me up. Grace was really sad and sorry when daddy figured out I broke my tooth. Later my mom [kristen fescoe] took me to surgerey. it was not fun in surgery.

 

This all written by a seven year old girl. It is a remind of both the struggles kids with RS face as well as their incredible power to overcome obstacles. Abby enjoyed writing this so much I think more will come from her. I do hope that her words help some of the newer families to the RS circle. These kids can overcome so much. They're miraculous!

Posted by Kristen Fescoe, March 2015