Jacks Journey

13/10/2026

No two days are ever the same when you have a child with complex needs.

Yesterday, Jack was doing amazing - smiling, laughing, shouting kicking.

By teatime we almost made a 999 call due to a very prolonged episode of spasms, with some focal seizures thrown in.

Rescue meds resolved the focals but the spasms went on for a while and we were concerned.

Thankfully they did eventually resolve.

Today, from about 2am Jack has been quite agitated, very tearful and we had a lot more seizures to deal with.

I have literally achieved nothing today, other than re ordering his extension tubes, cancelling appointments we had today, speaking with his epilepsy nurse to try to figure out how we can help the spasms and keeping on top of meds to ensure Jack stays as calm as possible. Lots of cuddles have been had but a lot of worry too.

Temperature is currently 37.9 so hoping that’s the explanation for the increase in seizures, but as always with epilepsy, it’s a case of watch, wait and be prepared for another potential ambulance trip.

My little warrior 💙

11/10/2026

Mum went on a retreat 🩷

Huge thanks to the The Daisy Garland charity for organising such a wonderful event.

It took me three trains and a taxi journey to get to Sharpham House in Devon - surrounded by the most beautiful scenery I immediately felt calm.

I’ve never been this far away from my babies before, and I changed my mind about going quite a few times, as well as a little wobble while I was there.

The kids had a great weekend with dad, and I had the most amazing time getting to know so many lovely mums whose children have drug resistant epilepsy like Jack.

We hugged, laughed, cried and shared stories and feelings that only we would fully understand.

The mindfulness practise was brilliant and gave me some fab tools to help me cope when I’m in crisis.

Sara and David Garland - what can I say?
They set up the foundation just four months after their beautiful daughter Daisy passed away. Since then they have helped thousands of families in so many ways. I am so honoured to have finally been able to meet you both and thank you in person for not only organising the retreat, but providing Jack with an overnight breathing monitor back when he was first diagnosed.

I am in awe of them, to go through such tragic circumstances and find the strength to help others.

Gillian and Nikki - thank you so much for being there too, Gillian for helping us with the mindfulness and Nikki for being there during my meltdown.

I spent the weekend surrounded by so much love and support, I slept, and I looked after ME for a change.

What an experience 🥰

08/10/2026

07/10/2026

In true Jack style, he definitely wanted to punish us for having a restful week at Ty Hafan.

While we were there he came down with a cold, but it was manageable and he coped really well, he was checked over the wonderful Ty Hafan doctors who confirmed it was a viral infection.

However, he coughed so much a few times that he vomited quite badly.

When we brought him home we noticed he seemed to be getting worse, so I took him to the GP.

Unfortunately, when he was sick he aspirated and it went into his lungs and became infected.

He’s now on antibiotics and is showing signs of improvement but we have to keep a close eye on him, the first few days he was extremely agitated and required a lot of midazolam to settle him down, and thankfully yesterday and today he’s been so much happier (although did throw in another vomit earlier today and panicked me about further aspiration!)

Anyway, I too have been hit with a virus and feel horrendous, I’m supposed to be going away this weekend for a retreat organised by a lovely charity, so here’s hoping everyone is well enough so I can still go!

Picture of my cheeky chops 😍😍😍

25/09/2026

Progress this week…

Jacks new wheels arrived today 😍😍
He is so much more comfortable! And it will last him a good few years which is fab.

Yesterday he was fitted for his new specialist high/low chair in nursery. We have the same one at home and it’s ideal to help him gain trunk strength, but he can also be involved with meal times at the table, and be lowered down to the same level as his friends during play times.

He’d had a terrible night (we are having more of these lately) so he slept the whole time even when he was being moved around 🤣

This week has certainly been a rollercoaster.

Myself and Nick are running on empty at the moment, balancing so many things and dealing with lots of different emotions.

We’ve had a few sessions where I stay with him at the nursery so he gets used to the environment and gets to know his 1:1.

All of the staff have been trained on his rescue meds, feed pump and manual handling. We’ve been supported by Flying Start throughout the process and I have to say everyone has been incredibly thorough in ensuring that the transition is as smooth as possible. The nursery staff are just wonderful and I’m fully confident in allowing them to care for our boy.

My only issue is, being his full time carer, I have been with him every day for the last two years and I’m going to find it SO hard to let him go. It’s only for two days a week and I know I do need a break, but Jack needs to be around different people as well.

A year ago we were too terrified to look to the future with Jack, because we didn’t know how long we would have him for.

There is still that uncertainty of course, which is one of the reasons we are so exhausted all the time - anticipatory grief is always in the back of our minds, but we are starting to allow ourselves to make plans for his future, instead of putting everything on hold and just fearing the worst.

So we may soon have an official start for our big boy once risk assessments and insurances have been completed..eek!

This weekend will be spent with family and friends trying to keep some normality, as it’s all been really hectic these last few days…

Today we have dealt with lots of episodes of extreme agitation, so we’ve had to medicate Jack four times to settle him down, thankfully he’s calmer this evening so fingers crossed for a proper nights sleep 💙

23/09/2026

Double ear infection again for Jack.

Extra meds.

Extra seizures.

Extra worry.

But he’s coped really well so far, so let’s hope we can keep him out of hospital 🤞 💙

06/09/2026

Our cheeky boy is back home where he belongs.

We got back yesterday afternoon, although the plan was to get him home Friday evening.

Everything was packed up, Nick arrived to collect us and he was in his chair literally ready to leave, then he decided he wanted to stay a bit longer.

2 rescue meds were needed and the doctor decided he wasn’t going anywhere.

Thankfully he recovered nicely and we’ve had a settled night home together as a family.

Unfortunately, some difficult conversations took place.

The doctors have confirmed that recent events are due to a deterioration of his condition. He is on all the meds that he can possibly be on and there isnt any room for increased doses or additional meds at this point.

I was told that the main focus now has to be palliative care and comfort.

Our hearts are shattered and we are struggling to process it all.

We will be having further discussions with his team next week, there are other treatments that we can try but these wont be accessible on the NHS although there may be other ways around it.

Whatever it takes, whatever he needs to continue living in his happy little bubble of life, we are prepared to fight for.

We are not giving up on you Jack, we love you so much 💙

04/09/2026

After our last admission we were slowly getting back into the swing of things even though we hadn’t fully recovered.

But yesterday after waving our eldest off to high school, and the two younger ones back in primary I finally thought “yes, I can get the house organised and back into a proper routine to work on my mental health” as it’s been a really difficult summer holidays.

First plan was breakfast with the school mums - Jack thought “absolutely not.”

Prolonged seizures while we were out and I had to max out his rescue meds. He stopped briefly so I took him home, then he started again.

45 minutes of a prolonged seizure followed and we were taken in by ambulance.

He stabilised briefly but then it happened again.

More doctors and nurses started appearing, there was talk of more meds and “upstairs” was mentioned.

For those fortunate enough to not know what they mean by upstairs - it’s intensive care.

The thought of being back there frightened the life out of me, it brought back all the trauma which was especially hard as it’s almost 2 years to the day that he was there before.

Thankfully the incredible doctors managed to get a line into his foot and give him a loading dose of Keppra which worked.

Jack came back to baseline and spent all night singing on the ward - we have had zero sleep but I don’t care - he is finally stable so we are waiting to be reviewed by neurology and hopefully we can bring him back home.

He’s showing slight signs of a possible virus brewing - in a way I hope this is the trigger for what happened yesterday. He is completely maxed out on his regular meds so we don’t know what will happen if the seizures he had yesterday are a development of his condition, rather than being triggered by illness.

At the moment all we can do is wait and see 💙

I’m so grateful to all of Jacks chosen aunties for staying with us, helping to get ready for hospital, getting snacks, delivering goods to the hospital and helping with the other kids - I would have crumbled without your amazing support and we love you so much xx

22/08/2026

Well… we’re home! ❤️

After another week in hospital, our little man is finally back where he belongs — at home, surrounded by his favourite people, his toys and probably wondering why we keep making such a fuss over him. 😂

It’s been another rollercoaster with Jack. He’s had a rough week, including some new seizure types which, because apparently his existing collection wasn’t quite enough 🙄, have given us something else to keep an eye on. His team have confirmed they’re atonic seizures and, for now, the decision is to monitor rather than add more medication and risk making our cheeky boy overly sedated.

The biggest challenge this week has been getting his feeds back on track after all the vomiting and his little tummy deciding it wanted absolutely nothing to do with food. We’ve gone from tiny amounts and continuous feeds, very slowly increasing things, and I’m so bloody relieved to say that he’s now back on his full feeds and keeping them down! 🎉

He’s still a little unsettled and exhausted, and we’re expecting it to take a little while for him to properly get back to his usual cheeky self, but seeing him smiling, laughing and playing again makes everything feel so much lighter.

And because no hospital admission would be complete without a bit of drama, he also managed to projectile vomit over some lovely play therapists, have ketones that repeatedly decided to scare the life out of us, and generally remind everyone that Jack will always be Jack and he is absolutely not interested in making anything easy for us. 😂

But he’s home. ❤️

And honestly, we couldn’t have got through another week without the incredible support around us. To our family and friends who have looked after the other kids, brought food, cleaned, checked in, kept us company, entertained the children, listened to me panic and generally kept us going — thank you.

To the incredible nurses, doctors, dietitians, epilepsy team, play specialists and everyone else who has looked after our boy this week — thank you for looking after him and for putting up with his particular brand of chaos. 😂

And to everyone who has messaged, checked in, sent love, offered help — we see it, we appreciate it, and it means more than you probably realise. ❤️

Now we’re going to concentrate on getting our boy properly back to baseline, getting some sleep (please, Jack 🙏😂) and enjoying being together at home.

One week later, a million worries later, and we’re finally back where we want to be.

Home. ❤️

08/08/2026

Not a great deal has changed since my last Jack update.

We are now on day 12 of vomiting.

He was admitted to hospital overnight and we got discharged Thursday.

We swapped his milk to Dioralyte which thankfully he can keep down, but obviously that’s not sustainable.

We tried a new lactose free keto milk - made no difference.

We have tried building his milk back up (mixing small amounts of milk with dioralyte) - he was tolerating these but as soon as the milk increases he’s sick again.

We now have anti sickness medication, which is working most of the time, but yesterday when we tried increasing the milk/dioralyte ratio he was sick again.

So back to stage 1 of the feed plan for 24 hours, added in an extra dose of anti sickness today, and tonight’s feed will be increased to see how he copes.

Once we have used up the anti sickness meds we will need to try building the feeds up again, but if he continues vomiting then he needs to be re admitted for further tests.

At the moment the only answer they can come up with is that the sickness bug he had at the same time as Eliana is taking a long time to resolve, although his bloods are completely normal.

There were a few other families in the hospital for the same thing, but it’s more worrying for Jack due to his complex needs.

He’s lost a kilo in weight.
We’ve dealt with low blood sugars.
High ketones.

We are completely drained.
And for an extra slap in the face I picked up something too so joined in with the sickness yesterday, meaning Nick took over the care of the kids and the house while I rested.

We’ve been lucky to have so many people around us to make sure our other kids have had some enjoyment through these summer holidays - you all know who you are and we cannot thank you enough.

Thankfully Jack is well in himself and quite happy in between these episodes - so fingers crossed we can actually venture out of the house tomorrow and do something normal!