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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 getting it out when we did as she has been touch and go with failure to thrive at times).

So how are we traveling these days? Bella still drinks her elemental formula twice a day (morning and night). This supplements her food intake which alone will not meet nutrition and vitamin needs. This is due to her multiple anaphylaxis allergies (milk, egg, fish, chicken) and her EoE triggers (wheat, soy, peanut, corn) and many food aversions. Due to her current medications that have been helping keep her EoE symptoms more under control she is currently trialling some corn (as an ingredient at this stage, not whole corn products). That has opened a few exciting new food options for her and we’ve also seen a huge increase in recent times in the quantity and variety of allergy friendly foods available! A massive difference that is for sure to what it was like 12 years ago when we began on this journey.

An ongoing battle for us and one that we have tried to get help with again last year but have had to put on hold until she is ready is that she most likely also has Avoidant / Restrictive Food Intake Disorder (ARFID). It never used to have a name for it when she was younger!

But for now, we are celebrating the steps we’ve taken already and are thankful that she still has her Cheerleading to guarantee a smile on her face!

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.

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 been living with the rare disorder called eosinophilic oesophagitis all of her life. When she was 7 years old the difficult decision was made for her to have a feeding tube inserted in her stomach (hence the start of this blog). For nearly the last four years she has received 90% of her nutrition from an elemental formula through a feeding pump 10 hours a night. This disorder affects both her physical and mental health. Thanks to the feeding tube she began to have enough energy and strength to participate in sports and in 2013 chose cheerleading as her passion. As she is petite for her age she was a flyer for her Level 1 cheer team. Cheerleading became her life. She lived to fly. She enjoyed the excitement and challenges. But she was still plagued with self-esteem issues as she compared herself to everyone else and felt inferior and hindered by her feeding tube. She dreamed to be able to wear a cheerleading crop top like her team mates.

Last Christmas school holidays we decided to go ‘cold turkey’ from using her feeding tube and try to eat enough of her limited diet (with vitamin supplementation). It was hard, very hard. But Bella had a goal in sight. She wanted to get her feeding tube out and fly even higher in cheerleading this year without it. Then her cheerleading gym had their team try outs. Bella was placed in a team, but not as a flyer. They did not have a spot for her as a flyer this year. Bella was devastated. She wanted to quit. She wanted to quit on life. Cheerleading was her life. It was the one thing that she had in her life that gave her enjoyment. When she was flying, she felt on top of the world. She wasn’t thinking about the next medical appointment or the next tube feed when she was in the air. As a mum you do anything to help your kids succeed, but when you see them hit rock bottom, you hit rock bottom too. I searched our local area for other activities she could participate in; Gymnastics, competitive Aerobics, Ballet... She just wanted to fly. Thankfully I persisted and found another cheerleading studio (Sunshine Coast Cheerleading) that was half an hour away (compared to 5 minutes away) and we met Chantelle the owner and one of her coaches Jarah. As soon as they met her they knew she was born to fly. They welcomed her into their studio with open arms, along with the rest of their cheerleading family. They accepted her for who she was and not only did they place her as a flyer in a cheerleading team, Jarah asked if she wanted to partner stunt with him. Not only was she flying again, but she began to soar.

Even with a feeding tube, she was, in just a few days of practice trying and nailing Level 5 stunts! With this new motivation and encouragement she now had an even stronger determination to succeed so she began to drink her elemental formula again. Now that she was drinking her formula again she was back on track to getting her feeding tube removed before the first cheerleading competition in June this year. We had planned on scheduling the surgery after Easter but Bella fractured her wrist skateboarding so as she was unable to train with her wrist in a cast we took the opportunity to get the tube taken out sooner so she wouldn’t have to miss too much training (cheerleading after all is her motivation). So on the 3rd March, Bella underwent the surgery to remove her feeding tube. I’m very thankful that we had taken out private health insurance a few years ago as I was literally given an appointment the following week from when I phoned the surgeon! Two weeks ago she had recovered enough from both the feeding tube surgery and the fractured wrist to start her partner stunt training with Jarah again. She wore a crop top for the first time and was not embarrassed of her scar - it's now a badge of honour for what she has been through. In some ways it will be harder for her now as she is still reliant on supplementing her limited diet by drinking elemental formula to meet her nutritional needs but it will be easier for her to pursue her cheerleading dreams and that makes it all worth it. We will be forever thankful to Jarah (pictured here with Bella). The power of cheerleading has changed our life! Stay tuned as Bella’s aiming for Olympic gold in the future if Cheerleading ever gets accepted as an Olympic sport that is!

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 teacher aide. Overall she's growing well with the tube feeding, has lots of energy and is looking fabulous!

Bella’s story was on Today Tonight last Thursday. Here is the link to watch the video - http:/au.news.yahoo.com/today-tonight/lifestyle/article/-/14846620/bellas-allergies  

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, she's pale, she doesn't look well, she's thin isn't she?)

In the last couple of months we have introduced tube feeding at school also. This was arranged with the district school registered nurse who trained a teacher aide to take on this task each day. She’s doing a fantastic job! It was a bit of a hurdle at the start as we had to get the location, timing, equipment, practice etc. all sorted but the procedure is all in place now and working really well. Bella was also quick to notice a change in her energy levels at school - play time is now for playing! They feed her during school time, just before lunch break so she doesn't miss out being with her friends. She doesn't eat any food at school, instead she gets one 200ml tube feed via bolus syringe each day at 12.30pm, she does eat a small dinner at night and is still continuous tube fed 1ltr Neocate Advance 10 hours per night via the infinity pump.

Our next step is next Wednesday she is scheduled to have her first BARD button change, via endoscopy. This should just be a day surgery and the plan is to be able to start feeds again and go home the same day. She's a bit anxious about it being her first button change, and it has also been 18 months since last endoscopy so will give us an update on how her EoE is looking. She's been trialling wheat presently and is on flixotide daily. It will be interesting to see if the results mean we can keep the wheat in her diet, although her eczema is flaring enough to make us think we shouldn’t be continuing with wheat anyhow.

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 of me and my pump.

Bella (now 8 years old)