ausEE Inc.

a charity dedicated to improving lives affected by eosinophilic disorders

Tube Feeding Blog

This is a blog about Bella, a 7 year old with eosinophilic oesophagitis who after 6 years of drinking elemental formula orally (and struggling to reach required intake) has decided to and agreed to have a gastrostomy feeding device which she calls her "TT" (tummy tube)

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Another year on and she's still smiling

Posted on February 11, 2017 at 5:15 AM

It's the end of Feeding Tube Awareness Week 2017 which means another year has passed since Bella had her feeding tube removed (nearly 2 years ago now). For us this week is also a time to reflect on our time with the tube, what we have been through and think about how far we've come since. We still have absolutely no regrets whatsoever about having had the feeding tube or the timing that we got it removed. (We did about a year ago wonder if we had made the wrong decision by gett...

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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 ga...

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Tube Weaning and for the love of Cheerleading!

Posted on April 21, 2015 at 6:00 AM

It’s been a long time since I’ve posted to this blog. I had all intentions on writing a Tube Weaning Blog but never got around to it! Well here goes with an update on Bella and the exciting news that she is now tube free!

I write this with tears in my eyes because it’s hard to put into words the massive impact that a passion for sport (Cheerleading!) and meeting a special person has had on Bella’s life. As you know Bella has b...

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A Weight Gain Milestone!

Posted on September 17, 2012 at 9:00 PM

On Saturday we went to the dietitian for Bella's regular check-up and were very happy to find out that we have passed another weight milestone!

For the first time in Bella’s life her weight on the percentile chart is higher percentage than her height! We’ve decided to cut her night tube feed to 800ml so that we can balance it up a bit. She still has one 200ml tube feed at school during the day and enjoys the one-on-one time with her...

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Today Tonight Story

Posted on September 17, 2012 at 8:45 PM

Bella’s story was on Today Tonight last Thursday. Here is the link to watch the video - http:/  

One Year On!

Posted on June 13, 2012 at 8:05 AM

Well, we have passed the one year mark and what a year it has been! I've got to say, in regards to the feeding tube it has been a year of many highs and not many lows to report. Still our best decision ever!! Bella is now over 25kg so that is 8kg is one year - she looks so healthy now and is loving her new look (she had become quite self-conscience about being too skinny) now she gets lots of lovely compliments which is a nice change to people whispering behind her back (gee, s...

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Message from Bella

Posted on November 29, 2011 at 3:40 AM

Hi, it’s me Bella again. I just wanted to say that now I have got the TT that I call it my button. Every single night I have to clean it, there is also a thing called granulation tissue that comes around it but Mum puts cream on it. I feel much better with my button then I used to feel and if you are like me you might want to ask your Mum for one. I like not having to drink my milk anymore and I don’t get sleepy at school anymore. Here is a picture o...

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Milestone Reached!!!

Posted on October 11, 2011 at 12:00 AM

We have more excellent news to share – Bella has well and truly passed 20kg!!! In the school holidays we visited the dietitian again and she was 20.7kg. She has finally passed the weight of her 6 year old sister Olivia (2 year age difference but has weighed the same as Bella for as long as we can remember). We had a little 20kg party when we reached this milestone!!

As a family we’ve all learnt a lot since ...

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Weight Gain News

Posted on August 13, 2011 at 11:30 PM

We are so thrilled - Bella has put on 2kgs since we started tube feeding. She is now 19.6kg!!! She is moving towards the 10th percentile when she has been on the bottom or below the chart all her life. Everyone who knows her is saying how well she looks and in her words "I've never felt so alive before". It's the new boundless energy that has had the biggest impact. The feeding process is still going well, we’ve only had a few very minor hiccups that have ...

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Progress Update

Posted on July 10, 2011 at 12:55 AM

Well we’ve been tube feeding for one month now so I thought it was time for a progress update. We started off with slow feeds at 20ml an hour rate through the pump and then slowly increased rate over a couple weeks until we have now reached a feed rate of 90ml an hour in which she is tolerating very well. We are only feeding through the night by pump for 10 hours – 2 continuous 5 hour feeds of 450ml each which is 900ml a night. A little bit short of ...

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