ausEE Inc.

a charity dedicated to improving lives affected by an eosinophilic disease

Tube Feeding Blog

Nearly One Year On and it's Feeding Tube Awareness Week!

Posted on February 9, 2016 at 5:05 AM

Bella is now in high school and it has been nearly one year since her feeding tube was removed. As it’s Feeding Tube Awareness Week I thought it was time to give another update on her story.

Unfortunately for Bella, in July last year circumstances changed and her cheerleading stunt partner, Jarah left the cheerleading gym to prepare to try out for a worlds cheerleading team. Bella shares the same dream as Jarah but she'll have to gain a lot more strength and build on other cheerleading skills, like tumbling to achieve this. I know she will never give up on her dream though. It was really hard for Bella when Jarah left as she did look up to him like a big brother but I believe everything happens for a reason and what’s meant to be will be!

So life went on and Bella continued training with her cheerleading team and her lovely coach found a new stunt group for her to continue training and competing with, and these three girls were very supportive and Bella had a lot of fun competing at 8 competitions including Nationals in Melbourne! What an eventful and busy year 2015 was!

Now we are in 2016 and a new cheer year is already in full swing with Bella in a cheerleading team and a stunt group once again and this time with the plan to compete in 10 competitions throughout the year! She trains 3 days a week so it's become a big commitment with travel to and from cheerleading but we wouldn't have it any other way as it’s still the best thing for her. We have no regrets in having the tube removed but in many ways life is harder for her now as she is still reliant on supplementing her limited diet by drinking the Neocate to meet her nutritional needs. The complexity of her medical condition means that unfortunately she isn't thriving yet and her eczema returns when she is eating more foods and having less formula which is the most healing nutrition for her body. So she is currently drinking 1-2 cups of Neocate each morning before school, having a packed lunch at school as well as safe hot food from the tuck-shop (which I must say they have been fabulous arranging to have safe food options for her) and then 2-3 cups of Neocate after school and up until bed time.

It was a big risk we took with her having her feeding tube removed before she was ‘thriving’ on her own and it’s touch and go really with her still being at risk of needing a feeding tube inserted into her nose if she doesn’t continue to put on weight. This is something Bella is desperately trying to avoid.

I wish I could say everything turned out great but unfortunately I can’t. It’s tough and it will take a lot of hard work and dedication to both her health and her sport for her to achieve her dream. Her motto ‘Never Give Up’ is now more important than ever.

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