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!

I know I sound like a broken record when I continuously refer back to the words the Consultants spoke over us when I was 28 weeks pregnant with Zachariah.

Termination.

No quality of life.

We’re not sure if he’ll survive.

Words that have stuck with me, hurt me, but also given me the determination to give Zachariah the life I hoped he would have.

These words also give me a comparison.

They help me celebrate all that he has achieved since they were spoken over him.

He’s shown that he deserved to live, have quality of life and survive all that is thrown at him.

So, when I look at what he has achieved at Nursery, I am overwhelmed with happiness and pride.

I feel so sad that his time there has ended, especially when it has ended earlier than expected due to unwanted Chicken Pox!

But I am also extremely delighted that he has done it!

He’s attended Mainstream Nursery for 2 whole years.

He’s made friends and a best friend in Martha, he’s been involved in new and familiar experiences and smiled more times than I can count.

He’s had all the Nursery Aunties run around after him and made them all fall in love with him.

Zachariah being given the chance to attend Mainstream Nursery was something Tim and I were never sure would happen.

It was his portage worker who casually said to me about him going and how there was funding available to get him there.

I wasn’t ready!

But I got stuck right in, to see if it was something Zachariah would benefit from.

I visited one recommended Nursery with a friend.

It was wheelchair friendly and spacious.

All the staff members looked genuinely happy to be there and the children looked settled and happy.

I am not one to look at Ofsted reports as I feel more can be said about an Education setting through word of mouth, attitude of staff and the smiles on the children’s faces.

I look for a place where the staff are fairly treated and want to be there.

I look for a place who say “drop in whenever” and don’t run around trying to tidy up before people visit.

This Nursery was the children’s home from home rather than a showroom, so I couldn’t help but fall in love.

I haven’t looked back since.

Zachariah has been included, challenged, cared for and given countless opportunities to be himself and grow.

He’s had tailor made sessions with his amazing 1 to 1’s and had fun, integrated sessions with his peers also.

The staff have reassured me that he’s having all his needs met and nothing has seemed too big for them.

Zachariah is rather complex, but this Nursery have looked past this and not let it stop them from giving him the ultimate experience of an inclusive, fun Nursery.

They have said, and I quote;

“Zachariah is no different to his peers.”

“Zachariah is loved by all the children and staff!”

“Zachariah has a great relationship with his Aunties, particularly his Aunty Lauren.”

“Zachariah is a cheeky little boy!”

What more can a mummy ask for!

From the bottom of my heart, I want to thank Tower View Nursery for the most special 2 years!

I really hope you have learnt from and enjoyed having Zachariah with you, and that you will miss him half as much as we’ll miss you!

In a time of extreme difficulty and neglect, as I hear of so many awful experiences of our children not being treated correctly in Education settings, I feel blessed to have had such a great, safe place for my son.

Many could learn from Tower View!

Much love,

Rochelle, My Daily Miracle

xxx

It was something else that was accepted, but there was hope that it would stay flexible and could be straightened back into place through therapy and equipment.

There seemed to be no major immediate concern, and we were told that it would be monitored through x rays.

The x rays were a difficulty in their own right, I remember our first trip the spinal consultant, being sent round for x-ray, and being mortified by the huge, hard chair type thing that Zachariah was expected to sit on.

I remember worrying over how we would facilitate it, and how Zachariah would tolerate it.

It seems to be an issue throughout the hospitals…the lack of appropriate equipment for those with severe disabilities, those who depend solely on a carer to lift and put them into new positions.

It’s the same when we visit clinic, and we are expected to put Zachariah on our laps upon the scales to try and get the best possible reading of his weight.

It’s just not safe, nor is it practical. I do wonder how they manage to weigh and measure older children, and even adults.

Anyway, coming back from my little drift, once we’ve managed to prop Zachariah into sitting position, trying our best not to prop too much, as after all, we’re trying the get an image of his scoliosis, we head back round to clinic and await our turn with the consultant.

In the past these consultations have been, as I’ve touched on above, fairly easy to digest, it’s a ‘we’ll wait and see’ kind of conversation.

There’s been a positive vibe that Zachariah’s spine may fix itself slightly to make it less of a problem.

But last month… 13th April, I sat in the room with Zachariah and my Auntie and received the news I had dreaded.

‘We need to talk about surgery Mum’.

My heart literally pounded, but I kept my cool.

As after 4 years of meetings with different Doctors and Consultants, I have gotten used to keeping my meeting face on, a face that stays unemotional, a face that needs to stay straight in order for the brain to receive the information that’s about to be shared.

I nodded and listened so intently to what the Consultant had to say, it is fascinating how incredible these people are and what they can achieve to make your child’s life better.

He explained that there are 2 types of spinal surgery, but only one that he felt appropriate for my son… the rods.

Now I won’t pretend that I knew exactly what this meant, but he assured me that it’s extremely successful, they put some rods in the spine to help straighten it, they then need to be monitored every 6 months as the child grows.

Sounds so flipping simple when you type it out!

But as every surgery has, this surgery comes with risks.

One risk is Zachariah’s health declining, so to help with this, we are being referred to respiratory team to give Zachariah a good check over on the lungs and general health to see if he’s well enough for the surgery.

So much information once again.

I felt so overwhelmed as I left that meeting and couldn’t wait to get home and digest it properly.

No surprise though, as I walked away I burst into tears, it was too much this time, my baby needing such a huge operation was just too much!

I wept as my Auntie comforted me and heading round to the cafe for some much-needed refreshments.

I tried talking it out and tried understanding it, but my emotions were too strong to allow my mind to think.

It’s so easy for people to say, ‘it’s for the best’ and ‘it’ll be ok in the end’, but when it’s your baby, you need to allow your emotion to take over and give yourself time to process it in your own way and time.

We need to be kind to ourselves and not rush through things, just because the world says we should.

My Auntie knew this, and got it, she told me how important it will be to talk with Tim when we got home and spend time together being upset, but then also looking at the benefits and making that decision together.

Even though it still doesn’t sit completely right with me, now I’ve had 3 weeks to digest it all, I can see how much it is needed for Zachariah to have the chance to live a longer, healthier life.

I know it’s for the best and is muchly needed before the spine begins to affect the organs, especially his lungs.

I have now found a new hope that this surgery may bring the goal of Zachariah sitting unaided back into the picture.

This one visit to the hospital was a huge challenge that we are overcoming, it reminded me how complex my son is, and how much he relies on the care of loved ones and the expertise of professionals from the wonderful NHS.

Huge love and respect for the NHS and everyone who helps make it a positive, working organisation.

I wrote this blog to document this huge news, and to share with you a day in Zachariah’s world. I really hope this helps someone too.
Much love,

Rochelle (My Daily Miracle)

However, I was not prepared for the adventure of getting Zachariah an EHCP ready for school.

Thinking about school alone comes with too many questions, worries and unknowns, so add in a legal document and I’m totally thrown.

For those of you who haven’t reached this particular milestone, I’ll enlighten you a little bit.

An Education, Health and Care Plan is a fairly sized pile of paper consisting of reports from professionals, aspirations and goals from parents and outcomes developed from all the information.

It’s a document that should clearly state the needs of your child and how they are going to be met.

Sounds pretty awesome doesn’t it?

And to be fair, it is, when everything is correct and both parents, professionals and your local authority are on the same page.

But reality is, it can be a very stressful process, full of reading, re reading and reading again, then highlighting everything you are not too sure about.

You end up fighting for things to be in it, amending adjustments and feeling unsure if it completely represents what you want/need for your child.

It can be an extremely emotional document and hard to digest too.

I particularly found it difficult writing Zachariah’s hopes and dreams for the future.

My ultimate goal for my son is for him to be happy and healthy.

So, when you are living a battle with health and you are losing a lot of the time, it can feel like such a distant goal.

And of course, not forgetting the constant battle with happiness, as like many other children with life limiting conditions, if they’re not 100%, chances are they are not happy.

So straight away you know you are setting ‘hard to reach’ goals.

But the emotion doesn’t stop there.

As I’m sure I’m not alone when I express how difficult it can be to see on paper what your child can and cannot do.

I have often expressed how much I dislike graphs which put my son in an age bracket, and how degrading it can be to score my child against other children when he has so much to battle with on a daily basis.

It is another document that highlights your child’s difficulties.

But on the flip side of that, it’s extremely positive too.

Showing what your child has achieved and goals that seem achievable.

It celebrates them and acknowledges their triumphs.

It is also the most daunting document a parent can face, and this is because of its importance.

It’s a legal document.

In my understanding, it is your child’s safety blanket, which protects them of their rights and needs.

It is a clear plan which shows everyone’s involvement, including parents/carers.

It is there to protect families, but also professionals /schools.

It is to make sure the team around each family are on the same page and working together, with the interest of the child at the centre.

Because it is legal and vital, it can scare many parents, I for one didn’t feel qualified to be such a key role in bringing this document together.

I felt overwhelmed and felt I couldn’t get it right because I lacked knowledge and expertise.

I also had no idea how important it was until I received the first draft.

There doesn’t seem to be much preparation for it, and definitely little guidance on how this document should look at final draft.

Parents are almost left in the dark until they receive the document then expected to understand and be happy with it in such a short period of time.

Don’t get me wrong there is help, but I almost feel like you’ve got to seek out that help and be aware at that time of your options.

I also feel you need confidence to speak up and discuss it.

So, if you are in a bad patch, as I like to call it, it may be difficult to have the capacity to think about this and have energy for it. As I know I’m not alone in the sleep deprived club.

For me, I’ve absolutely struggled with this whole process from get go.

And without going into too much detail, I’ve found myself feeling let down and confused.

Luckily, I have a great network of friends who have been able to guide me, but this has still come with its difficulties.

Getting the EHCP at such a difficult time in our lives, has definitely made this harder.

As I’ve been so caught up in grief, after losing my 2nd child, that I’ve been unable to find the capacity to give my all into getting the EHCP as right as possible.

I mean, where has 20 weeks gone? I fear that many others also have this struggle with the EHCP and wonder how many are left confused.

I’ll finish by saying that the EHCP is an incredible thing, and such an improvement from the where we were before. It is not meant to be hard work, but there as a positive thing for your child.

Much love, Rochelle (My Daily Miracle)

Xx

In an ideal world, Zachariah would be able to access everything without worrying about accessibility, adaptations, and barriers.

Usually, our biggest battle is down to Zachariah being in a wheelchair and needing changing places.

However, another huge struggle is his epilepsy and the worries over triggering a seizure.

I’ve declined party invites, play dates, and trips out because of this, and disregarded holiday destinations.

And now I wonder if I’ve over thought everything and almost regret not going to a lot of the events I’ve said, “no”, too.

I mean, his epilepsy does need to be taken seriously, and there have been times when there was no option but to say, “no”.

However, I can’t help thinking that Zachariah’s missed a few opportunities that could have been enjoyed.

One activity, in particular, is bowling.

The music, the lights, the crowds.

It’s one big party and one big bag of stimulation that could trigger Zachariah’s epilepsy.

Not only this, but there’s the fact that Zachariah may not get anything out of rolling a ball into skittles.

And of course, the dreaded toileting issue, we so desperately need resolving… So why risk it?

I think sometimes I let my worry unfold that much that I lose sight of the initial worry and get lost in an unreasonable state of mind.

I had let this beat me up so badly that I had just written bowling off completely.

But like anything, things should always be reassessed.

And that’s exactly what I did over Easter. I told the husband that it was time to try something new.

Zachariah was the healthiest he had been for a long time and we needed to make the most of it.

Going bowling for the first time.

We invited his Auntie and Uncle, spoke to the bowling place about our needs and got it booked.

And what an amazing idea it was, as Zachariah had the time of his life. He smiled, he giggled and he only went and won the first game!

He absolutely loved the atmosphere and having the independence to join in. And yes, it did get too much halfway through, but having the tools to accommodate for this made it possible.

We popped on his ear defenders, pulled his hood over and let him nap.

Once refreshed, he joined in once again.

I feel so happy that this worked out, and dare I say it… I feel proud of us as a family for conquering the fear and doing something new that initially scared us.

I now look forward to going bowling again and who knows, Zachariah may get another party invite that we can say yes to!

Up next… The Cinema! Watch this space.

Much love,

Rochelle (My Daily Miracle) xx