The Wonderful Benefits of Blending

From day 1 on tube feeding we knew we wanted to feed him a blended diet – real food, liquidised to go down his tube without blocking it.

However we had quite a battle initially persuading Sam’s clinical team to allow it.

Original guidelines stated only formula feed was suitable/acceptable for tube feeding – we argued, hard, that as his issues were not due to digestive malfunction, we should be allowed to give him the same food he’d had orally.

Despite initial resistance, the team soon came on board once they realised that we fully accepted the work involved.

We have never looked back!

In addition to the risk of blocking the tube, food safety is often cited as a reason why medical professionals are frequently reluctant to support a blended diet.

It’s more than just basic food hygiene, which as parents we already adhere to, but ensuring that feeds are cooked through thoroughly before being rapidly cooled and frozen within a very short time frame if they aren’t to be used immediately.

Once we signed various forms confirming that we accepted the risks (pretty much saying if the tube blocked or he became sick then it was our responsibility not the hospitals… fair enough), we were good to go.

Our dietician advised on a suitable blender to liquidise even the most tricky of foods – I give you the raspberry seed… perfectly sized by nature to block a PEG perfectly if not obliterated first – and off we went.

Although it is a lot more work than just making up a formula feed, the benefits of giving our boy real food are huge.

His reflux has improved, as has his digestive function (we reduced his Movicol from 4-6 sachets daily to 1-2).

We discovered certain foods worsened his seizures, so we just cut them out.

Despite the initial dire warnings about food hygiene and risk of infection, Sam has actually been healthier since starting blended feeds than he ever was on 100% formula… he just didn’t tolerate it.

And we haven’t had any feed-related blockages (just meds… gah!).

The food hygiene aspect can be quite intimidating initially but it really isn’t anything more than you would do anyway – making sure to store the food appropriately, hand washing and maintaining a clean kitchen all being the main areas to take care of.

We have a very supportive dietetics/gastro team so Sam’s meals are evaluated by his dietician periodically to ensure he’s getting the right stuff in the right amounts.

But for me the greatest benefit is seeing my child thriving, and being able to prepare his food like any mother.

It’s the little things like this that make such a difference to us special needs Mums.

After so much has been taken out of our hands it’s wonderful to be able to take back some of the tasks other parents take for granted.

A Problem Shared…

The old saying, “A problem shared is a problem halved?”

For us, while sharing our fears, trials and battles with those who genuinely do understand may not actually make the problem any smaller, it DOES make it easier for us to deal with.

Sometimes, those fears are so huge that we aren’t able to confide in others who haven’t walked this path with us.

Sometimes sharing those fears and battles with our wider family and friends just doesn’t feel possible.

Yes, they walk that path alongside us but unless you’ve felt those very same sharp and agonising stones under your feet it’s impossible to fully grasp what it feels like.

We physically feel each other’s fear and pain.

And we share each other’s joy when our kids overcome some hurdle, or achieve a new milestone.

But it is also a tremendously frustrating thing, to feel how much someone else is hurting and to be completely helpless to do anything to alleviate that pain.

Right now, many of my friend’s children are either facing extremely risky surgeries or they are struggling against a system which seems unwilling or unable to offer even basic support for families in crisis.

And there is nothing you can do but be on the end of a phone, or chatting via social media.

We are each other’s life lines, but right now I just want to get into my car and drive to see them, and to give them a proper hug, not a virtual one.

More often than not, there are no answers, no solutions.

Life with medically complex children often feels like the incomplete problem, where no matter what you do there is no solution.

In such times we feel like all we can manage is getting out of bed.

But having that monumental support genuinely does make us feel like we can take on the world.

The Simple Things

The first is going out and about with Mummy and Daddy, and Merlin the dog in tow.

The second is swimming; it’s the one time he is truly free to move as he wishes; or not, if he just fancies a nice, relaxing float!

When he was teeny it was easy – we just held him in the water or used an inflatable neck float like the one in the photo.

But now he is getting too big and heavy for the float, and no longer wants to be held as he wants to move independenty.

The trouble is, if we were to let go he would sink like a stone.

We know he loves swimming at school, so when a letter came home the other day offering parents the opportunity to come in to school and go swimming with their children, we pretty much jumped at the chance!

This is yet another example of why we think Sam’s school is the best thing since sliced bread.

They don’t just educate and care for our children during term time, but they are also looking after their interests during the holidays.

The swimming teacher knows that over the Summer, many families will be holidaying, and one of the activities likely to come up will be swimming.

Having someone experienced in supporting people with disabilities in the water to swim and be safe, offer their time to help us as parents learn those same skills, is just invaluable.

It’s not something we ever considered really, we just assumed that we would carry on muddling through as usual, so this opportunity is huge.

We need to know what aids and flotation devices are out there, which are suitable for Sam’s personal needs and where we can get them.

By ourselves I suspect we would make a number of purchases which wouldn’t be appropriate before stumbling upon a solution that works.

This way we can see what he is already using and comfortable with.

It may not seem like much but to us, it’s a big thing.

Being able to be with Sam in the water, knowing he’s happy and safe… I can’t think of much else I’d rather be doing during the summer break.

The Power of Food – The Wonders Lurking in the Spice Cupboard!

The difference in my little boy is staggering; his weight gain has been phenomenal to the point where he is now a healthy weight/height for his age and is back on the growth chart where he should be!

He is healthier and happier than he has been in years.

We keep his immune system strong by giving him a wide range of fruits and veg, making sure his vitamins and minerals are in the right range, thanks to his dietician, who has gone above and beyond to confirm that his meals are absolutely, perfectly meeting his needs.

He has different herbs and spices renowned for their dietary/health properties.

The favourites being garlic, ginger, cinnamon, oregano and the spice that above all other things turns his tube yellow… turmeric.

I know the power of a healthy diet.

I know the power of herbs and spices to help us keep well and indeed to fight off infection.

So WHY I ask you, do we as parents and carers not put in as much effort and consideration into our own diets?!

I am pretty certain that I am not alone in making sure my child has the best diet imaginable, while I eat rather less well, shall we say.

Too many years of hospital visits relying on Costa, pre-packed butties and cola?!

I really should pay more attention to my diet too.

As a woman with autoimmune issues its more essential than ever that I keep myself as well as possible.

Recently, after many years of suffering in silence, I was diagnosed with a rare autoimmune disorder that conventional medicine can’t really help with, other than to give antibiotics when the inevitable infections take hold.

If this were my son we were talking about, I would be doing everything in my power to ensure that he was healthy and that we found a way to control the condition.

So the time has come for me to practice what I preach!

I will admit, the first thing I identified as a major problem for me was gluten.

I don’t have a coeliac allergy, but it was very noticeable that if I ate gluten, within 24hrs I was in pain with a flare up.

So taking what I’ve learnt over 12 months of doing a blended diet for my son, I cut out all gluten. Totally.

Caffeine was another one to go (although I haven’t quite managed to fully remove that one as yet… my morning brew is still an essential).

Then, I turned to the spice rack that has, for the past year, helped keep my boy healthy.

Turmeric is would appear is a potent anti-inflammatory.

Coconut oil is renowned not only for being a very healthy oil to cook with but also for having anti-fungal and anti-bacterial properties.

After a few weeks on antibiotics, feeling utterly meh and having flare-ups despite the medication, I was prepared to try ANYTHING regardless of how weird and wonderful it sounded!

Both can be used internally via diet but also externally… as its my skin that’s worst affected I was happy to slap the stuff on and deal with the glorious yellow tinged skin that resulted… but it calmed my skin down a treat.

I also tweaked my diet and added such beauties as these in on a daily basis (although I found taking turmeric in capsule form rather better than the Bart Simpson look). 

A week on and I’m feeling better than I have in a long time, pain level is down (not gone I should add, and I did this with the full support of my GP), and the inflammatory responses that have plagued me for years are a lot calmer than they were.

I am actually speechless.

How ridiculous, to have had these items sitting in a cupboard for the past year, regularly being fed to my son, yet I never even considered their usefulness for my own wellbeing.

If it hadn’t been for Sam being a tubie, I doubt I would ever have even thought about them.

Hippocrates was spot on; let food be your medicine, and medicine be your food.

World of Country Life – Visitor Attraction

World of Country Life is a family owned visitor attraction in Exmouth, Devon.

The park first opened in 1978 and since then has grown and developed over the years, winning a number of awards, to be one of the best family days out in Devon!

The attraction has an eclectic mix of museums, animals, play areas and entertainment, both outdoors and under cover, making it an excellent day out for the whole family, whatever the age, whatever the weather!

The park itself is well laid out and easy to navigate with a wheelchair.

Sam adored the park animals, donkeys, deer, goats and llamas being just some of the animals who live at the park.

You can buy food for the animals at reception, just mind your fingers as the goats can be a tad nibbly…!

As we visited in May there were plenty of babies around to see, from chicks and ducklings to lambs and calves.

There are a variety of activities during the day, including bottle feeding the lambs and calves, to duck, ferret and sheep racing.

There’s plenty to do on the park including a soft play area, undercover pirate ship play barn and a café serving a range of food and drinks.

One of the activities we couldn’t take Sam on was the Deer Train; unfortunately this isn’t wheelchair accessible.

However if you have a child who can sit up or sit on a lap then this would likely be suitable for them.

For us the highlight however was a falconry display – the staff running the display ensured that Sam was located right at the front to give him the best possible view.

They provided us with chairs so we could sit with him, and going out of their way to ensure that he could enjoy it as much as anyone.

The bird handler even made a point of getting two of the birds flying in the display to come and settle on a perch no more than a foot away from Sam, so even with his poor vision he could see them.

Seeing the look of amazement on his face as CJ the Harris hawk flew past, just inches from him was worth far more than the price of entry to the Park!

Overall we had a lovely day at the World of Country Life and would definitely recommend a visit if you’re in the area and animals are your thing.

Does Having a Disabled Child Make You A Disabled Family?

It made me think… and I think he’s right in a way.

As a family what we do is affected by Sam’s issues – he’s in a wheelchair, so if we’re out together and he can’t get into somewhere, then neither can we.

In effect, his disability has become ours.

At the same time though it makes me feel strangely uncomfortable and I’m not sure why. It’s possibly just because I don’t like labels, my son is a little boy like any other.

The fact a list of his various issues, health problems, and disabilities would be longer than your arm makes bog all difference… he is a child, first and foremost.

Children don’t see Sam as any different – it’s the adults who see the wheelchair first and the child in it, second.

Children see a little boy who they would like to chat to, to be friends with. Children think Sam’s wheelchair is cool, and I quote ‘that is so awesome!’

Adults see a child unable to walk and feel pity. Children see a potential new friend.

Access isn’t the only issue however. Isolation plays a huge role in disabling us as a family. When Sam was tiny he was too ill for us to go anywhere, I felt trapped and isolated in our home caring for a seriously ill baby, while his Dad had no choice but to go to work. 

I was terrified of taking him out anywhere for fear of a seizure hitting (an inevitability), fear of how I’d cope.

Fortunately we have good, close friends and family who realised that we needed time and space but not distance, so they made a point of keeping in touch, gently, never forcing a visit but always there if needed.

With time, the isolation improved. Sam improved and we started going out together again.

I felt that pride I had when he was first born return, being able to take my beautiful boy out and show him off to the world – so what that he had seizures, he was still wonderful in our eyes.

From time to time the isolation returns, notably when he’s hospitalised, but now we know how to cope better and to keep in touch.

Social media is far more important as a tool to keep in touch than just to share inspiring quotes or videos of cats doing silly things (although they are incredibly funny, so please do keep them coming).

Not everyone is so lucky though.

Many families and carers are isolated through their role as carers.

If you have a friend who is a carer, keep in touch with them. They may not text back or return your messages but it will let them know that you’re there.

And trust me, they do need to know. And with time, they’ll contact you again… just keep that fine silver thread of connection there.

For a lot of families, it’s the light in the dark that they so dearly need x

Holiday Parks – Not As Accessible As You’d Think!

We selected the Devon Cliffs site, who offer adapted caravans for wheelchair users.

Sadly when we called none were available however the staff assured us that a Deluxe of Prestige caravan would give us the space we needed with the wheelchair.

Erm… let us just say this wasn’t the case!

We stayed in a Deluxe caravan, with the WAV parked a short distance away in a designated space. So far, so good.

We were aware that there would be a few steps to get into the caravan so although not ideal, this wasn’t a major issue.

However, once in the caravan, it was obvious that space would be a problem.

Sam’s wheelchair was too wide to get it through the corridor and into the bedroom; the twin bedroom where he would be staying was too small to use a mobile hoist.

If nothing else however, life with Sam has taught us to be adaptable… fortunately we had brought his air bed with us, so we adapted the caravan.

You’d be amazed how comfortable those sofas are to sleep on!

The site itself was stunning, very well kept and clean. We couldn’t fault the staff at all, who were wonderful with the little dude.

The children’s activities were varied through the week so we decided to try the messy play session and the family bingo.

Again the staff were lovely, however the volume level was apparently set to STUN, many of the, ‘typical’, children were finding it far too loud and overstimulating and even the parents were starting to cringe slightly.

After painting, we decided to go on a little adventure looking around the park – although a hilly site, it was easy to move around with the wheelchair, with the shops and cafes etc. accessible via ramps or level access.

Big tick there!

Sadly, the swimming pool was not as successful – while the pool itself was easy access with a gently sloping entry to the water, the changing facilities were nothing short of useless.

The disabled change consisted of nothing more than an empty room with a wall mounted chair; no changing bench, loo or shower.

In the end, as we’d promised him we’d take him swimming we battled into one of the normal changing rooms and laid him on the narrow bench to change him… spot on que, the Dude kicked into a full on seizure – his Dad pretty much spread his arms across Sam’s body to stop him falling off the bench while I had my hand between Sam’s head and the wall/bench to save him from cracking his head during the convulsions.

All in all, not a successful attempt.

In fact it was so difficult, that we only attempted swimming once the entire week we were there.

In a nutshell – if you have mobile children then this is a wonderful Park to visit.

Sadly, if like us you have a child with very severe issues, it really isn’t.

Holidaying… With A Tubie

It is also our first time staying in a caravan (granted, a posh one) with Sam and only the second time we’ve been away since he had his PEG fitted.

Now, formula isn’t an issue as we just need to make sure we have sufficient sachets to make up his milk… the blended diet aspect however is requiring rather more planning. 

Think of it as a week-long picnic, but with the planning involved for a small military campaign…

The prospect of making up enough blended feeds for a week plus transporting them from one end of the country to the other does not fill me with joy.

Currently, Sam’s feeds are done in batches; each recipe is then split into the correct portion sizes to give him around 250 calories per portion.

Sam CAN taste his meals even though they go straight into his stomach (think burping… sorry), so we try and give him different meals for each feed so he doesn’t have a whole day with just one blend.

Like anyone else, he’d get very bored, very quickly.

Usually we use storage pots into which we portion up the blends, cool them and freeze, labelling as we go.

This also means that a week’s worth of blended meals will take up considerable freezer space, which we simply won’t have in said caravan.

Hmmm . . .

As the prospect of carting our beloved vitamix with us fills me with dread (have you seen how expensive those things are, not to mention the amount of power they use!), there has been some considerable research done into alternatives… unfortunately none of the options are going to be suitable for us.

A lot of families use the reusable, sterilizable baby food pouches, but the volume of Sam’s meals means that these aren’t big enough.

Knew it wouldn’t be that simple!

Another alternative option was a nutri bullet type blender that would be fine for smaller batches… however as money is tight that isn’t an option either.

So… not so much back to the drawing board as back to the vitamix.

Yes folks, you’ve guessed it, it’s coming with us.

So if the news reports a black out across a caravan site in Devon next week, you’ll know who’s to blame! x

When The Goalposts Change

Believing that I was at peace with this decision, last week’s appointment has thrown me off kilter completely:

The question of genetics has been asked; there was shock that he’s never been referred to them before, and once again the subject of whether we wish to have more children was raised.

It had never really occurred to me before that finding out whether Sam’s issues could be due to a heritable reason was all that important – after all, we weren’t having any more children so it didn’t seem to matter so much against the backdrop of everything else that was going on.

And yet, the knowledge that he should have been referred and that the results of those investigations that could have changed our decision has really hit hard.

Probably because I have quite a few friends currently expecting their next baby, and the sadness that we won’t be joining them in the 2nd/3rd baby announcements is still very much there.

It’s a strange feeling. Not grief as such, more a numbness that has sharp edges…

I find when it hits I struggle to focus and concentrate.

I know our decision was made for the right reasons and that Sams condition wasn’t a deciding factor, but even so….

As I get closer to my 40’s knowing that that biological window of opportunity will be closing in the not-too-distant-future seems to have rebooted my biological clock.

But then I remember all my other friends who have never been blessed with a child – friends who tried for many years to have a baby, only to suffer miscarriage after miscarriage.

Those who struggled through IVF but were still suffering the pain of being childless.

My boy is here.

For all he is a complex little chap he is HERE.

Our life has had far more twists and turns than I ever imagined but the happy days still outnumber the sad ones.

If nothing else, my precious little guy has taught me to be thankful for every single blessing, and to live in the moment because no-one is promised a tomorrow.

So, as we face the next round of investigations and tests to try and locate a root cause to Sam’s issues and prepare ourselves for what answers we may get, I intend to keep smiling and moving forward.

After all, none of us can go back to the past, can we? And for now, my little family is still here and happy, what more can I ask.