Medication Frustration

Recently I can’t seem to stop thinking about medicine.

So much so that my entire google search history seems to be related to medications.

You can hardly blame me though. Currently each day we draw up anything between 16+ syringes of various medicines each day for Amy.

My thoughts mainly centre around “is this medicine even helping her?”,

“what if it’s giving her a headache and she can’t tell me and that’s why she cries so much?”,

“what are the long-term effects of taking this medicine”

“I wonder how I would feel if I took all of these meds? Surely I’d be on the floor unable to move?!” and so on.

The main revelation for me on this journey is how much trial and error there will be.

There will be a lot of tweaking doses and optimising different times of administering to achieve the best effects.

It doesn’t feel like an exact science… I’m not a doctor, I’m not a scientist… I’m just a sleep deprived 30-something bumbling confusedly about my life in this strange role of mum/carer.

It shocks me how entrusted I am to make such big decisions about my daughter’s medicines.

Obviously, it is all regulated and monitored by trained consultants and paediatricians; yet at the same time they have deemed me competent enough to know whether or not something is working.

This would all be a whole lot easier if Amy could tell me herself how she felt.

You see in the last few months Amy got an epilepsy diagnosis.

Her seizures seem to present themselves in all kind of surprising and terrifying ways, enough to leave me a constant nervous wreck in fact.

It hasn’t happened often by any means, but that’s part of the fear… is the not knowing when.

There is no pattern, no specific trigger (that I know of) or time. The last big one she had caused a dangerously high heart rate and low blood oxygen and requiring medical oxygen.

The outcome of that hospital admission was to increase her epilim/sodium valproate.

You say epilim to someone that has heard of it and they will have an opinion.

I have learned this. The other thing I learned… and I have learned this more times than I care to admit… always unclamp the extension before forcing meds in… because ranitidine will sting your eyes!

Recently a cashier in a supermarket told me she had epilepsy and wanted to know which meds Amy has.

When I said epilim she recoiled in horror and warned ominously “GET HER OFF THAT MEDICINE. Epilim is evil!!!”.

To which I responded by assuring her that each medicine is different for each person and what works for one may have drastic nasty side effects for another.

Other people have told me how it was their miracle drug and how it has massively improved the mood of their child.

The quandary I am in is that since her dose was increased to the maximum amount – she has been inconsolable.

Inconsolable to the extent that I was urged by both respite and school to have her checked over in hospital for no underlying medical issues.

Urine samples taken, blood taken, ears and mouth checked, the usual anger inducing poking and prodding.

Infection markers were fine, she was the vision of health; and yet something is causing her deep, unexplainable agitation.

Diazepam has now been increased and an extra dose added to try and counteract the negative side effects of the epilim but I am seeing no change.

I remain disillusioned by the complex world of medicine.

Amy takes gabapentin to help with irritability and is also on various anti reflux and muscle relaxants.

I sometimes wonder how she would be if we weaned her off the lot (except seizure meds!).

I wonder if we continue the epilim like this for another 4 months to see if things improve.

Or do I insist on weaning her off it and starting a new one that could be potentially 100s of times worse?

It is quite literally enough to keep me up at night.

It is also a full-time job.

Ordering syringes, cleaning them, ordering meds, drawing up the meds, checking labels are correct for school and respite, packing correct ones for days out, monitoring expiry dates and so on.

Our house looks like a badly run pharmacy sometimes.

On tube feed supply delivery days, we become awash in a sea of flexitainer and giving set boxes.

Spare tubes, extension sets, boxes of meds, everywhere.

It is astounding to see the sheer volume of things one little 17kg person can require.

I turn to online forums a lot for support.

As we all know – there is no greater expert than the special needs parent who has walked this path before you and has their own first-hand experience of a medication.

The varying responses you see about different medicines and diagnoses is staggering.

You seem only to be able to gather advice about other things to try but continue to go it alone just you and your partner trying to work out what to do.

I once read something about tube feeding being artificially fed.

I then feel this overwhelming gratitude that this technology exists because otherwise there is no way she could receive sustenance and medicines.

It also makes me panic at how vulnerable she is and how awful it would be if a long-term effect of a drug damaged any of her organs.

Because of existing liver issues, Amy needs blood tests regularly now that she has epilim because it can affect liver function.

The thought of something that is helping keep her alive and well damaging her and causing her to need further intervention is enough to literally keep me up at night.

It is then that I turn to my own meds – the anti-anxiety and anti-depressants, the need for counselling, the reading up on mindfulness, the trying to get new hobbies, the trying to enrich my life and distract myself from the world of medicine that thus surrounds me.

Each hospitalisation and check over is a reminder of what we have been through.

It is a trigger for PTSD. It is the same building her life started so dramatically.

Each failed attempt to get a blood sample is a reminder of the many cannulas her little body has had to accommodate.

Each sats probe is a reminder of her need for ventilation, oxygen, resuscitation at birth.

It is one big mental battle and often a vicious circle.

These miracle chemicals are our life now whether we want them to be or not.

I am grateful for them.

I resent them.

Each outpatient appointment is time I thought we would have spent at the park in a different life.

4 years in and I am still adjusting to our new normal.

It would be easier to adjust if she weren’t so distressed all day.

This week is the last one before the summer holidays for me.

I am excited for our time together.

But I am worried about how I will get all of the essential jobs done whilst she is there in her current unpredictable and sad state.

Not being able to calm her is most definitely the most difficult challenge for me in all of this.

She has always been quite determined and bossy, I think it’s part of her personality and also frustration at not being able to communicate her needs to me.

But right now, it feels more medicine based and unstoppable.

I hope to write a post again in a few months’ time where I explain my relief at how we are out of the woods with this new medication.

There was talk in our last neurology appointment of using chloral when she is distressed.

The last thing I want is to sedate her, but it becomes an ethical debate about quality of life.

If someone is that upset for a prolonged period of time is it not best they sleep it off for a while?

I don’t know.

I hope it doesn’t come to that.

Another Year

How are we already at the end of another school year?!

On Friday, Sam will finish for the summer hols; in September he moves into key stage 2.

I’m pretty sure this shouldn’t be allowed – after all he was only a baby a few months ago… wasn’t he?

As always, I am looking forward to the holidays almost as much as he is.

I’m not entirely sure why, as a Uni lecturer I don’t get the school holidays off work (in fairness, the poor school teachers don’t really either as they have to prep everything for the next term!).

But even so, I am really looking forward to seeing my little man before I go off to work, possibly meeting up with him and Daddy for lunch once or twice, and so on.

The reality is that for me, the six weeks of the summer holidays will pass very much the same way as any other six weeks pass… but for Daddy, life is about to get a whole lot trickier to juggle.

Just like any child, Sam wants to play.


He wants his Daddies full attention, he wants to go out for walks with our dog, go swimming, play Lego, read stories and have adventures.

Unlike other children however, Sam cannot verbalise these wants.

Nor can be physically walk up to me or Daddy and nag us to play with him, reminding us that work/housework/dishes/bills can wait for just a little bit longer.

So, it’s up to US to ensure that Sam has all his needs and wants met.

And that, dear reader, is not always an easy task.

Sam is very good at letting us know when we’re doing something he DOESN’T want (i.e. physio) but isn’t so good at indicating when it is something he likes or DOES want.

This presents us with a challenge (and that’s being polite!).

So, this summer we have a project.

We will be working on getting the little chap to learn how to conclusively let us know that he’s happy/enjoying himself.

We’re going to be working on making choices and encouraging him to tell us when he’s had enough or when he wants to continue.

As we speak I am making some very colourful laminated sheets to supplement his school communication (POD) book… fingers crossed this works.

If anyone has any ideas they’d like to share, I would be more than grateful to hear them! x

Autism Travel Tips

Travelling with a child with autism is always a little daunting.

We have been fortunate to have been able to take an annual family overseas trip since Isla was a baby.

I am grateful for this with her now being more averse to trying new things.

With some preparation and planning, it is possible for the whole family to have an enjoyable time together.

How Bad Can it Be?

This is my philosophy!

Isla surprises us every time we go away with how well she copes and I think sometimes you have to just give it a go.

I am not going to lie it’s not always easy.

We have still have had tantrums.

We still walk on egg shells a bit to avoid them, especially when out in public as she tends to be loud when she’s protesting!

However, I have grown a thick skin and try not to meet anyone’s eyes when trying to calm her.

The Month Before:

As with most children with autism, Isla will react when things aren’t as she expects.

A month or so before departure date we talk a lot about what is going to happen.

We use social stories (a visual or written guide describing an event or social interactions used with those with autism), look at maps and Google World.

The Flight:

Don’t be afraid to tell the airline staff that you are travelling with a child with additional needs.

They may have “Special Assistance” you can register for that will allow you to board first, get a “meet and greet” from the plane and get through customs faster.

We have used this before, even if their website doesn’t class autism as a disability and is super helpful especially when you land.

We always leave plenty of time for checking in and arrive really early to save standing in too many queues.

Airports are busy stressful places.

I would have no hesitation in putting a belt on Isla with a strap or even reins if she was a runner, but with our family of 5 mostly travelling together, someone is always assigned to Isla.

Isla also wears a Medic Alert bracelet which has my phone number on the back so I know if she ever did get lost then there would be some way of locating us.

Watching the flight plan on the screen on the plane is important for Isla as well as having a window seat or at least being prepared for the eventuality that she isn’t going to get one.

I only found this out on a previous trip when she didn’t have the window seat she was expecting which led to a huge meltdown.

It’s not the best feeling being confined in a small space, like a plane, with a screaming child.

So now I make sure to book our seats in advance, find out about the screens and advise the airlines that we are travelling with a child with autism.

What to Pack:

Isla will often turn her nose up at airline food, I always make sure we have lots of snacks for her in her trusty compartmental lunchbox and take her own water bottle empty that we can fill up on the plane.

I pack a wheel along bag for Isla that she enjoys pulling along with child friendly earphones, some toys and trusty iPad.

We also pack a blanket, a change of clothes, her milk, cup and melatonin for overnight that helps her go to sleep more easily.

Isla stims quite loudly when excited so we have found a chew necklace helps with this when we need to quieten her down.

When Away:

We always try and choose a destination that we will be able to have a holiday as well as Isla.

This ideally involves somewhere warm with a pool. We try not to plan too much and set up the house like home.

For Isla, this is with her toys and iPad.

We tend to do short trips out and then come back to our house and let Isla have some time out.

She sleeps a lot on holiday during the day especially if goes in the car.

This is good for recharging her batteries and we took our own car seat with us.

A small half booster seat is more portable and I have just purchased a seat belt cushion for when she falls asleep and am yet to try this out!

When going out for meals we always check the kid’s menu for cheese pizza, chicken or fish and chips in advance and go to family friendly restaurants.

We normally take Isla’s favourite snack foods with us.

We have until recently taken swimming armbands for the pool (making sure they are suitable for children up to 50kg).

Even though Isla can get around a pool and we are always watching her, in a crowded area gives you piece of mind.

Occasionally we will take Isla out of her comfort zone.

A lot of the time if we can get over the initial hurdle of her not wanting to do it then she actually will enjoy herself.

A loving push we find really helps her expand her interests and social skills.

However, some of the time no matter how hard we try she won’t be talked round and we won’t force it.

For a child who has medical issues is also a bit nerve racking taking out of the country.

I always take a course of antibiotics and emergency seizures meds.

We also get additional insurance to cover her pre-existing conditions.

I believe a little extra planning and being proactive does help make an overseas trip a little less stressful for everyone and I hope some of these tips can help someone else.

World Breastfeeding Week

It’s world breastfeeding week!

A week to raise awareness and celebrate the wonderful thing that is breastfeeding!

The most natural and beautiful thing for a mother and her baby.

So why is my picture on this blog not a picture of me breastfeeding my child?

Well, that’s my Breast milk in that little tube!

With my first child, I didn’t try to breastfeed.

I always knew I wanted to feed her formula, I don’t really know my reasons but that’s just how I felt at that time and that’s ok!

She’s now a very happy and healthy 3-year-old.

Then when my son was born prematurely I was told that to give him the best chance possible I was to express my milk.

Something I didn’t realise until the nurses told me that day was that your body knows that you have given birth early and your milk changes to care for your little preemie.

How amazing is that?!

Our bodies are incredible, really.

So, I expressed for my little boy and actually took to it quite quickly, I didn’t particularly enjoy being attached to a machine so I knew that as soon as he was ready then I would try and breastfeed him, I was excited for this!

But when we thought he was ready and I started trying to breastfeed him, he really struggled to latch on.

Eventually one of the nurses told me that this can be common in premature babies and maybe we should try a bottle… I felt heartbroken!

But at the time I thought to myself, if we wanted to get out of NICU any time soon then that would be the best thing to do!

Sometimes I wish I had persisted and then other times I’m glad I made the decision to bottle feed because he may never have learned to latch on! He did have my breast milk for quite a while which definitely helped him in those early days when he was so small and poorly.

When I think of breastfeeding, I think of the most natural thing for a mother and her baby.

Unfortunately, there’s still people out there that think that breastfeeding a baby should be done in private.

There’s also some people that think this is “disgusting” (I struggled to even write that down because I honestly can’t believe it…) yet, when you visit a farm and see a cow getting milked, what do you think?

Probably not a lot!

Or a pig feeding her little piglets, you probably think “aww so cute!”

So why, when a human does it, does it become something we have to question?

I didn’t breastfeed but I did give my premature baby my breast milk and for that, I am extremely proud of my body.

I fully support mums whether they decide to breastfeed or bottle feed, but it does break my heart when I see someone looking nervous as they feed their child in public!

It should absolutely not be this way at all, we all eat in public so why shouldn’t a baby?

It is not sexual, it is not disgusting.

It is a mother feeding her baby.

No, she doesn’t have to cover up and no, she doesn’t need to do it indoors.

Happy world breastfeeding week to everyone, let’s continue to normalise breastfeeding.

Hold On To the Positives

Emily Sutton’s husband, Matt, has hijacked her blog, and here’s what he has to say:

I don’t need lots of sleep, I can cope with disturbances such as my five-year-old climbing into bed for a cuddle at 3am.

Indeed, on the occasions my wife would like a cuddle at any time during the night that is always welcome so long as I get five or six hours and a good few shots of coffee the next morning I am more than functional.

Every now and then things catch up with me and on this particular Friday night I declared to Emily, my wife, “I am absolutely shattered! I’d like to convert my daddy voucher into a lie in tomorrow morning”.

The request was passed, and a restful night’s sleep prevailed probably with the sub-conscious positive foreboding of the prospect of an extra two or three hours sleep.

Although sometimes I struggle to make the most of a lie in because if I wake up I struggle to get back to sleep.

But this Saturday was perfect, I woke to the smell of fresh coffee from downstairs, cuddles from my boys and a re-assuring smile from my wife that meant that everyone was happy, things were under control and there was no urgency to accelerate my slow slumbering start to the day.

My relaxed demeanour wasn’t the only change to our Saturday morning routine – usually, I take our youngest boy, Coby, to Little Kickers.

Emily had already requested that she would take him on this occasion which meant I would get some quality time with Jenson, our eldest boy.

I planned to take him to our regular butcher to get the BBQ meat for the weekend and then to the local splash park, which is one of Jenson’s favourite activities.

Jenson has a rare chromosome disorder which manifests itself in many ways with mental, physical and learning disabilities.

His disabilities influence his behaviour and consequently mine and Emily’s behaviour in terms of what we expose him and us to as a family.

We often find ourselves asking should we take him shopping and absorb the judgmental looks when Jenson begins to tantrum when we are queuing at the till or should just one of us go shopping and not expose us all to the potential risk.

Discuss – maybe one for another post.

On this Saturday Jenson and I went to our butcher.

They know Jenson, Coby and me.

Usually Coby and I go and see our butcher men after Little Kickers, but today Jenson and I went to see them.

There was no queue, so I went straight into ordering our meat.

My mind at this point is busy.

Do I want the chilli sausages or Cumberland?

Jenson was walking around the butcher generally behaving.

Will he run outside into the road?

Will he run behind the counter?

Will he invade another customer’s personal space?

He was good.

He found a chiller cabinet with a sliding door and proceeded to amuse himself with a satisfyingly repetitive opening and closing action.

Again, I was uncertain as to whether this was acceptable behaviour, but Mr Butcher put me at ease by explaining how his grandson always does the same thing.

So, I felt at ease letting Jenson amuse himself in this way and finished my transaction.

However, a queue had formed, and a very elderly gentleman had taken exception to Jenson playing with the chiller.

The elderly gentleman slammed the chiller door closed, scowled at Jenson and looked at me to discharge his opinion of my incompetent parenting to let my five-year-old play with a chiller door.

Jenson was upset, I was angry with the old man.

Yes, old man, not elderly gentleman anymore.

I don’t know how much I paid for my chicken, burgers and sausages.

My mind was consumed with wanting to react angrily but supressed by the empathy for an old man that doesn’t know the bigger picture.

As Jenson and I left the butcher the old man said, “I would have got a clip round the ear for that in my day” and as much as I wanted to retort, “Euthanasia is legal in some countries”, I didn’t.

Still on a high from my lie in, the prospect of the weekend’s BBQ and still supping my flask of coffee prepared by my lovely wife, Jenson and I proceeded to the splash park.

We frequent the splash park regularly and it is a relatively safe place for Jenson.

Though I still must be on high alert as a parent as Jenson is very tactile and loves to hug other children or simply invade their personal space which as I’m sure you can imagine can go one way or another.

Unfortunately, it does often mean that we must leave such places prematurely or at the very least, make a handful of humble apologies to the parents of the harassed children.

Today Jenson invaded the space of a boy called Sam.

He hugged Sam, but rather than get pushed away, Sam hugged him back.

Jenson made the sign for “friends” before taking Sam’s hand and leading him to play in the water showers.

This whole short episode took me by surprise and I watched on, in growing wonder of the events unfolding before my eyes.

The next hour or so passed with Jenson and Sam playing together, forging a friendship through non-verbal communication, with hugs, hand-holding, splashing, running, chasing and lots of laughter and fun.

Sam was brilliant with Jenson.

He didn’t seem to care about Jenson’s rather direct interpretation on how to make friends and simply embraced it and accepted him for who he is.

There are many children who would accept the odd cuddle or approach from a strange child, but there are very few children that would choose to spend the next hour with that child, in preference to returning to their ‘age appropriate’ peers and activities.

Sam sacrificed his regular play, his regular activities, for spending time with Jenson.

I’ve never believed in things that were “meant to be” but maybe they are?

My wife had organised a skating session at our local skate park for our community of special needs families, I naturally wanted to invite Sam and his family and to mine and Jenson’s delight they accepted, changed their plans for the day and became part of our community.

I made a new friend in Sam’s mum and I am certain our families will become closer in the future.

Sam and Jenson played together in the afternoon at the skate park and they have both ended the day each having a new special person in their lives.

The moral of the story, the final thought.

Take from this information what you will but if you listen to me please don’t think I have any validated wisdom because I am 36 years old and ride a skateboard!

Take every positive out of your day, hold onto it, keep it close when the negatives try to invade.

They will dispel as quickly as they attempted to precipitate into your thoughts.

But above all else remember:

Respect your elders, even when it’s difficult, and welcome in the wonders like Sam.

The World of Special Needs Parenting Can Bring Hard Lessons When It Comes to Friendship

I’ve always treasured the friendships that I’ve had throughout my life.

Some have formed from circumstance.

Some have drifted in and out, and some are only around for a season.

There are also the few who I am thankful to have been friends with for most of my life.

Still, I don’t believe anything has taught me about the value and meaning of friendship more than being a special needs parent.

In a world that can be isolating, scary, and uncertain, true friends will be willing to go along for the ride and support your family as much as you are willing to support them during hard times.

In the last twelve years, my friendship circle has narrowed considerably, and as sad and pathetic as that sounds, it is actually a good thing.

I have come to realize that where friendship is concerned, it’s quality that matters, not quantity.

To say that parenting a special needs child is stressful would be an understatement.

Our plates are often filled to maximum capacity. Many times we are operating on autopilot, and our friendships tend to get put on the back burner.

Not everyone can comprehend what it’s like raising special needs kids, and that’s OK.

There are the friends who “get it,” or at least try to, and I love them for that.

Then there are friendships that can be emotionally draining and toxic , and these traits are never more apparent in times of turmoil.

I have experienced my fair share of these, and it took me awhile to realize that these friendships were doing more harm than good.

These were long-term friendships, and I wanted to hold on and believe that things might change.

No one is perfect, and I would be lying if I said that the breakdown of the friendships was always entirely the fault of the other person, but ultimately I realized that these relationships were not healthy for either of us.

When they did eventually end, whether it was my choice or theirs, I felt peace rather than anger and sadness.

Those former friendships taught me to be more careful about who I surround myself with and  about the type of friend I want to be for others. In the world of special needs parenting, some of the following methods of support and understanding can go a long way.

Listen to what they say- not how they say it.

I had a conversation several years ago with someone where I was describing a really frustrating situation having to do with my son’s health.

I was emotional and a little swear-y, which tends to happen when my emotions run high (which she knew because she’d known me for twenty years).

After I poured my heart out, my “friend’s” only response was, “Jen! You swear too much.”

True friends will let you vent without judgement- even if dropping the F-bomb a couple of times makes them cringe.

Know that they don’t flake on or avoid events intentionally.

I would love to volunteer at my kids’ schools, or sign up to be on a committee, or schedule an appointment that is more than three months away.

But I can’t, because our life is such that one severe meltdown could wipe out a good part of the day, or one cold could turn into a hospital stay and throw a huge monkey wrench into arranged plans and obligations, leaving others to scramble and pick up the pieces.

Understand that they may not be able to do phone calls most of the time.

These days, texting is my preferred method of communication, along with social media.

Long gone are the days where I can sit and have a leisurely phone conversation.

For me, texting is still communicating in real time, and much easier than trying to chat while hiding in the bathroom (which is the only spot I can be alone, and even then, I get little hands pounding on the door).

Texting is not impersonal; it’s a necessity at this point for anything not medically related or non-emergent.

True friends also won’t gaslight, ghost, or create unnecessary drama.

I was accused once by a former friend of not being there for them during a rough period, which happened to be during the same time that my newborn was in the NICU fighting for his life.

No, I wasn’t able to be there because I was in survival mode myself; postpartum with a critically ill baby, which this person was well aware of.

I should probably clarify that these incidents I mentioned weren’t a one-time occurrence.

There were signs that these  friendships had been deteriorating for awhile; these were merely my “a-ha” moments that woke me up to the fact that maybe it was time to move on.

It’s not easy to be friends with parents who have special needs children.

Our lives can be unpredictable, and messy.

Our homes are loud and chaotic.

We are often cranky, broke, and tired. We may tend to bore you with endless talk of our latest medical and behavioral issues if you ask.

I’ve learned that if you are lucky enough to find those people that are willing to stick by you in this beautiful whirlwind, hang on and don’t let go.

Those are the friendships worth cultivating; they are your tribe.

World Friendship Day 2018

  • Tiana: “Cameron, you are my best friend.”
  • Cameron: “Thanks – you are not mine.”
  • Me: “She is your best friend out of school though, isn’t she Cameron? And Isla is your best friend in school?”
  • Cameron: “Oh, well, yes that is actually correct!”

I was told in the early days after Cameron’s diagnosis that he would struggle with friendships; they he may be socially awkward but that as he was bright, most certainly had the ability to learn friendships.

I have always encouraged his friendships and made the time to have play dates.

He does prefer one on one gatherings so that he can focus and give his all to that person and that he doesn’t have to share his friend’s attention or affection.

He is a good loyal friend already at 10 years old, he just struggles sometimes with knowing the right things to say like above.  He is very literal and has no filter.

He loves Tiana but as they are not in the same school and only see each other during holidays.

He just automatically thinks of his school friend who he spends every school day with.

Once I pointed out that you can have more than one best friend and that you just need to be careful about the replies you say to people as not to hurt their feelings – he was alarmed, he didn’t want Tiana to think that she wasn’t his best friend as she is.

I am fortunate to have some of THE best friends; true friends that will always make time for me, true listeners who support but most crucially – are brutally honest.

True friends who don’t have motives and are not opportunistic.

It is these friendships that shaped me the person that I am today and who have shown me the importance of these relationships in our lives.

I want this for my child – I have always said, as long as you have a few best friends all is ok with the world, you do not need the approval or acceptance of loads of different people.

Cameron’s friendship with Tiana did have a helping hand to blossom and stems from my own friendship with her mother and likewise mine and her mothers are best friends.

But now that they are older and actually enjoy each other’s company by their own choice and shared interests, I believe that the friendship would not work if they didn’t both appreciate or want it.

Cameron will be going into high school next year and I am worried sick.

His statement granted me the ability to be able to select a high school that I think best suits his strengths; will give him the best start in his future but this also means it is not a catchment school, and there will be no one there from primary school that he knows.

This is an exceptionally difficult position that I obviously want the best for my son to help him grow but the thought of him starting from scratch with friendships is unnerving.

One step at a time though, he is growing into a considerate and comical young man.

He will talk to anyone in a new social situation and will always put himself forward to engage.

For the time being, I will carry on supporting him with the friends that he loves and lean on my best friends in turn for their support, love and advice.

Thank you; Michelle, Holly, Vicky, Paul, Jenny, Leanne, Jay

World Friendship Day

Friends are family you choose they say. Well I feel blessed to have been chosen by so many wonderful people.

I’m surrounded by a bunch of beautiful, quirky and loyal friends.

In this blog I’m going to explore the different circles of friendships I have and take this time to honour them.

I believe that it is important to be opened minded about friendships and not put too much pressure on them, as ultimately being a mum is my first priority.

If I haven’t seen you for a while, it isn’t because I’m avoiding you, but because I’m busy caring and advocating for my son.

My lovely circles of friends…

My Rock.

The bestest friend of all who sees the ugly side of me yet grows closer to me and loves me deeper as the time goes on.

We have had to keep our friendship to keep the fun in our relationship.

I can count on him to make me smile, even on the darkest days.

My Husband

My Heroes.

They are interested, invested and want to be part of my world. They always have time for me.

They say I don’t bore them when I go off on one about the recent failures within the health department.

They learn new words that Doctors spring on me. They ask more questions rather than nod and agree.

They hug me and tell me I’m doing a great job. They love me for me. They notice I have changed, but still see me.

They remind me of the girl I once was and encourage me to be her again and be silly.

When the hard times make me cry with sadness and worry, they make me cry with hysterical laughter (and maybe pee…no judgement… I’ve had 2 babies).

They love my Husband and Zachariah. They talk about our Angel baby and keep his name alive.

They teach their children how to be friends with Zachariah. They grieve with me as I have struggled to come to terms with milestones we will never reach.

They are beautiful inside and out. They are my favourite people, who no matter how I feel I want to see them.

Caroline. Bryony. Nick. Rach. Dom. Rob. Helen. Jodie

My Special Friends.

They keep in touch. They share new things that may be good for Zachariah.

They educate me on their medical knowledge. They cry with me when difficult times come our way. They celebrate the triumphs, and the achievements.

They let my family into their world and create a bond that is held together by our children who amaze us daily.

They give me their time, when time is so precious. They give my boy a friend who gets it and they give me a friend who gets it too!

They become special friends who shall never be forgotten.

Kelly. Eve. Fran. Emma. Leah. Ceri-ann. Aimee. Tracey. Leonie. Wendy. Rachel.

The Fighters.

The friends who you meet with similar passion to fight and make life better for your children.

Who you grow a shield with. Who you advocate for. Who you share experiences with and help grow.

Who lift you. Who give you confidence. Who make you want to make life better.

Kelly. Rhiannon. Claudine. Sally. Laura. Helen. Sara. Shirley. Martin. SJ. Lisa. Liz.

The Church.

Who lift you up in prayer. Who support you. Who wipe your tears.

Ramsbottom Pentecostal Church

The Oldest.

The friend who has been there for 20 years, who despite the different directions we have taken in life, is still there to make me smile and remind me of my roots and my ridiculous funny ways.


The Followers.

Then there are the friends who follow our story through our page.

Who lift us up, who celebrate with us and stand by our side.

Who show love and loyalty.

Who offer words of encouragement, praise, empathy, love, compassion.

My Daily Miracle followers

The new friends who enter our world and are so accepting.

The friendships that are formed by being your professional.

The friends who are yet to come.

Friendships come in all shapes and sizes.

All of these amazing people offer something unique and make my friendship group super strong.

They understand the strains of being Zachariah’s Mummy and forgive me for my forgetfulness and dizziness as I struggle to remember what day it is.

I just hope I am as good a friend to all these lovelies as they are to me!

Happy Friendship Day!

To Tube or not to Tube – Our Journey so Far

NGs, gastrostomies, GJs and Jejunostomies.

For some people, deciding on whether or not to tube feed their child is optional.

It could be that the child struggles to keep hydrated, or they may fatigue whilst chewing and not take in enough calories; they may need medication that they refuse to take that could be dangerous if they miss.

Before Amy I had never even heard of tube feeding never mind known just how many reasons there could be.

For us tube feeding was never a choice. Amy has been nil by mouth since birth.

She started with an NG tube which was passed up her nose and threaded through to her stomach.

I look back on those days and wonder how on earth we got through it.

Re-passing her tube several times a day was soul destroying.

It was so distressing for everyone involved. We were constantly checking her aspirate to make sure the tube was in the right place, we were forever replacing the tape on her face which caused blisters on her skin.

Initially we had to bolus feed (gravity feed) every 3 hours through the night.

She would scream the whole time and the food would inevitably refill in the syringe and end up all over us and the floor.

We were then informed that she had “missed the window” to learn to suck.

Sucking is a very important mechanism in learning to eat. We were advised to have a gastrostomy placed.

The thought of surgically inserting a hole in our child’s perfect little torso filled me with grief.

We put it off for months. We talked it over and over weighing up the pros and cons.

It seemed everyone around us, especially her professionals unanimously agreed that this was the right thing to do.

And oh boy were they right.

Once we had got used to all stoma and button management and learned how to set up pump feeds we were truly onto a winner.

It was the best thing we ever did for her.

Sadly, a couple of months later her fundoplication surgery failed.

This is an anti-reflux procedure whereby the bottom of the oesophagus is wrapped around the top of the stomach.

The reflux monster returned, she retched and bloated, she was a very unhappy little girl. We exhausted every option.

We tried several different formulas, we tried blended diet, we tried overnight feeding.

We eventually got to a point where she was on 24-hour feeds which is what we are doing now, 3 years on.

The last 4 years for me has been obsessively researching ways to improve the situation.

I sometimes stay up at night reading up on dysmotility disorders, volume tolerance, neurological impairment and its relation to feed issues and so on.

It’s very draining but for the first time I feel like we are getting to where we need to be.

When the fundo failed we met with a surgeon who recommended an OGD.

This is where the stomach is disconnected entirely from the oesophagus and re-routed to the jejunum (intestine/bowel).

This is major major surgery and not a decision to be taken lightly.

After much deliberation and research, I asked for Amy to have a GJ button inserted. This would not be a surgical procedure.

They insert a dual ported button into the existing gastrostomy site and thread a tube through into the jejunum.

The benefit would be to see how her body digests food if we bypass her stomach.

We had a PH study conducted which revealed the reflux to only be mildly abnormal so I was adamant we get this GJ trial.

The surgeon was reluctant and insisted it would not be a long-term fix and may not work.

My instincts told me that we had to exhaust every other option before deciding on major surgery.

The GJ was inserted under sedation by a wonderful radiographer at our city hospital.

Over the next year or two she had the tube replaced several times like you would with a gastrostomy button.

The only difference was that this had to be under sedation and involved missing school and spending the day on the day case ward of the hospital.

It was massively inconvenient, but for the first time we saw Amy gaining weight.

After 11 months of static weight on 24 hour feeds our little girl was thriving!

My next step was to have her booked in for a separate jejunostomy. Our surgeon refused.

He remained adamant that the OGD surgery was required and that this GJ was not a long-term option.

He wanted to repeat the PH study as he felt that our main issue was reflux and that the results weren’t correct last time.

I left heartbroken and deflated. I kept my cool the whole way home and sobbed myself silently to sleep.

Why aren’t they listening?

Why am I having to fight?

Being the determined little annoyance that I am, I bounced back.

I spoke to Amy’s consultant and requested a second opinion at a different city hospital.

We attended this appointment last week. It was at the bizarre time of 17:55 over an hour’s drive away from home.

The man was incredible.

He not only listened to everything I had to say, he validated my opinions and agreed with all of my findings.

He agreed that she would be a candidate for a separate jejunostomy but did advise that it may not work out long term how I hope.

This procedure hasn’t been used a fix like this for a long time so there isn’t a lot of clinical evidence for the long-term effects of this procedure for the reasons we want it.

However, we both agreed it was a far less risky and invasive surgery to put her through and theoretically – if the GJ button worked, then this should too.

We departed full of emotion. It was bittersweet.

Yes, I was listened to, yes, I feel my instincts are correct, yes, I have been a good advocate for my child.

But there is no denying how upsetting it is to have to opt into surgery for your own child, on more than one occasion as well.

The complexity of her gastro issues have me baffled on a daily basis.

I am always second guessing myself and hoping that we are doing the best we can for her and minimising the amount of intervention she has to endure.

I joked to a friend recently that we should be out choosing which scooters to buy for our kids, not deciding which surgery to put them through.

The friend in question is currently in our local city hospital whilst her daughter recovers from tracheostomy surgery.

Another agonising decision made by another amazing and advocating parent. My favourite thing about the tube is choosing nice new gtube pads.

I think this is the only fun novelty involved except for knowing your child will always be well hydrated, getting the right nutrition, and getting their medication correctly.

I know there are people probably reading this who are thinking “wow, only a few surgeries… my child has had 14 just this year alone!”, and my heart goes out to them.

The feeling I had the last time Amy was wheeled into theatre and those double doors closed in front of me will never leave me.

I remember literally losing control of my legs and falling to the ground. I hope that this surgery helps her.

We are now just waiting for a date and confirmation that she doesn’t have a mal rotated bowel or anything else that could add complications to the surgery.

I don’t think we will ever become hardened to the ordeals our children have to face.

It might get easier as it becomes our new normal, but I will never be able to think that this is fair on anyone.

All my love to anyone having to make tough decisions for their child and hoping they did the right thing.

To those parents I meet in the hospital brew room – you are one of the things that get me through all of this.

I admire and respect all of them and their amazingly brave children.