Today We Made a Change

Rochelle Followes by Rochelle Followes Additional Needs

Rochelle Followes

Rochelle Followes

I am parent to a gorgeous little blue eyed boy who has complex needs. I have a Facebook page, 'my daily miracle' where I share our life with others...

We started Blended Diet!

After deciding 2 years ago that Zachariah needed to have a gastrostomy due to unsafe swallow and accepting that he would be fed milk through a tube for the rest of his life I never thought I’d cook for Zachariah again.

Going through all the training and receiving the post gastrostomy information it all looked so black and white.

By this I mean there was a fixed plan that all families follow:

Decision

Surgery

Milk Diet

Pump/Bolus

Less reflux/Chest infections

It all seemed very simple and set in stone.

There was no talk about still feeding Zachariah his meals, but at a much runnier texture through his tube, so I thought nothing else of it.

If anything, I was relieved. No more struggling to feed him, no more prepping his meals.

We had the benefits of feeding on the go and having all his feed delivered and ready to give.

We were assured that the milk contained all the nutrients Zachariah needed.

Life seemed less chaotic and therefore I had time to focus on other areas in Zachariah's development.

A year later whilst at an event, (Kidz Up North), I got chatting to a lady who was feeding her son via tube, but not in the same way I fed Zachariah.

I was intrigued so started to quiz her on what she was feeding her child.

With much excitement, the lady was more than happy to talk about her son and how he was in fact being fed food that had been blended up!

My face must have been a picture, because I was literally shocked that food could be put through the tubes.

I had never been advised this.

After much of a discussion I was educated on the Blended Diet and the great benefits it offered to children with reflux difficulties and intolerances.

The lady told me how her son had been taken off reflux meds due to the change in diet and was now a much healthier, happier boy, and then directed me to the Facebook group to find out more.

This is where Facebook really does benefit people, as it’s a platform for communities to offer/receive support.

I followed the page and read all the different stories, families sharing their victories with weight gain, reflux, constipation and general health.

It was all great but I didn’t see how it would benefit Zachariah.

He had meds for reflux and seemed to be tolerating his feeds quite well, he was a good weight.

I didn’t believe blended diet could change his life in any way.

But was definitely intrigued to try but not yet!

I needed more research, more discussions, more encounters with families face to face and just more thinking time.

I didn’t understand why it had not been suggested by the dietician and surgeon when he has his operation.

There must be a reason why Zachariah was given milk rather than Food Diet.

But then life happened, we found out we had lost our second son.

Everything went to mush!

We literally plodded on through life, therefore unable to focus on anything new or different.

We leaned on the milk as a safety net until we were ready to commit

That was until a few weeks ago when I saw some friends and their little boy, who I hadn't seen for quite some time due to illnesses and business of life.

Previously, through messenger, they had told me there was talk about a Trachy and described how poorly he had been.

So, it was the most amazing surprise to see him looking happy and healthy and to be told the operation was no longer needed!

I obviously asked why! And was told that he had started Blended Diet doing tremendously.

There was no way I could witness this and not do something!

With this amazing story, and Zachariah's Gastro Consultant suggesting it instead of increasing his meds I had to act

So today, 31st July 2018, we had a meeting with the Dietician and got Zachariah back on food!

I’m terrified! I’m overwhelmed!

But I’m supported and can see how this is going to benefit Zachariah and hopefully reduce reflux and constipation and get him off some meds!

It was the most precious tea time as I cooked Zachariah a nutritious meal, but also the most surreal moment syringing in food rather than milk being pumped in!

Sometimes in life, we need to be challenged, we need to see things from a different perspective and re-evaluate things.

Especially with children who have medical needs, as things are always developing in the medical world, 19 months ago, Blended Diet was not something I had heard of, but now it’s a huge life changer that is now being advised by professionals.

Not all children will be able to tolerate food, but for many this will be a child’s new medicine.

I had found out today that I was never advised Blended Diet as it is not recommended by the manufacturers of the Mini Buttons, it all makes sense now.

So, I thank all those parent/carers who have shared their stories on the Facebook page to help families like mine, make this life changing decision!

Let the adventure begin!

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