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Jacks Journey, St Athan, Barry (2026)

20/03/2026

Only our Jack can fall asleep while having his hair cut 🤣

He doesn’t look like a baby any more!

06/03/2026

This week I hit rock bottom.

I cried more than I have ever cried during our journey since Jack’s diagnosis. I honestly couldn’t see a way forward, felt like a complete failure - as a mum, a wife, friend, daughter…everything.

With heaps of support we have found something that helps Jack through the nights, it wasn’t something I wanted to do but it became totally necessary and for his benefit - a very low dose of midazolam to help settle his high levels of agitation.

We used it for the first time last night at around 1.30am - he woke hysterical and I tried to settle him in the usual ways but nothing worked, so I gave him the medication. He immediately calmed down, giggled to himself for about half and hour and slept the rest of the night, what a result!

Then Nick shocked me and showed me Jacks completed bedroom. I knew it was on the cards but didn’t realise it was this soon. When I saw it I burst into tears. Mixed emotions - Nick did such a wonderful job and poured his heart into it - then I wanted to figure out how I could put the cot back into our room without Nick noticing 🤣🤣

But we bit the bullet and our last baby has gone into his own room at 20 months old.

We played his favourite nursery rhyme, the kids came in and gave him kisses. His SATs monitor and video monitor are all set up and he’s currently chatting to himself quietly while I stare at the screen like a mad woman.

It feels weird not having my little bestie by my side, but watching him in the screen, so happy and relaxed has made recent events all worth it.

I want to thank everyone who has dragged me through this week - hopefully soon I’ll be back to little old crazy me 🩷

03/03/2026

Lovely day spent at our local children’s hospice.

Jack did some painting, singing and we went on a little walk. He was also checked over by doctors and a plan was put in place for his levels of agitation. They also got in touch with his dietitian and we now have a special Nutrigen formula we have to give after each feed due to some recent weight loss.

Productive day but I feel rather overwhelmed tonight, information overload definitely takes its toll. But look how happy my boy has been 😍😍😍

02/03/2026

This little stinker of ours.
The happy little boy everyone sees, who puts a smile on so many faces and pulls at lots of heart strings.

This is how Jack is throughout the day. But at night time it’s a very different scenario.

For a few months now, Jack has been having prolonged episodes of complete distress, high pitched shrill screaming where nothing calms him down.

We explored every single possibility relating to teething, bowels and seizure activity. We took him to hospital last week too.

There doesn’t appear to be anything acute or medical causing the distress, and after our third sleepless night in a row I finally reached breaking point today.

I spent many hours on the phone to his palliative care team and even had a visit from our Ty Hafan support worker. In addition to that, friends rallied around to make me tea and cheer me up.

After some long discussions and some of my own research, I found that children with Neurodevelopmental disorders can have episodes where the brain will fire out pain stimulus, even when there isn’t anything clinically wrong. This causes his episodes where he is extremely tense, thrashing and screaming the house down.

I’m glad we seem to have an answer, however the only way we can help him is by giving a very small dose of Midazolam (we use a higher dose for seizure rescue medication) which will hopefully settle him and allow us some much needed rest. This will be sorted in the next few days.

It breaks my heart though, this was the situation I wanted to avoid, as he is already medicated up to the eyeballs, but I realise we cannot carry on this way.

Life as medical parents, plus three other kids is exhausting. The lack of sleep has had a huge effect on the whole family.

I’m so glad I reached out for help today, and I was listened to and supported fully xx

13/02/2026

He can be forgiven for being the reason my hair is falling out.

Jack has upped his game with the tube pulling - 3 times a day most days! The repeated insertions have caused his nasal cavity to swell.

Last night there was blood and many tears, it was really distressing but we eventually managed to pass a new tube, but the little monkey pulled it out again this morning. It was another struggle and after seeking advice I took him to the hospital. Of course by the time we got there the swelling reduced and the nurses placed the new tube with no problems 🤦🏼‍♀️

Hopefully we can get his surgery expedited, but then that will be another huge stress.

Our day did not go as planned, so I’ve written it off and gone to bed for an early night with my stinker 💙

07/02/2026

Jacks feed pump failed and I was already having a bad day before that.

Thank god for nanny and grandad, gravity feeds take ages! Grandad took over and nanny gave him a manicure 💙

25/01/2026

We’ve just added a Firefly Playpak to Jack’s world, and we’re so excited about what it can offer him.

It supports his trunk and pelvis while still allowing him to move, twist and experiment, which is so important for building strength, balance and confidence. Most of all, it gives Jack the chance to play, explore and be comfortable on the floor in a way that meets him exactly where he is 💙

This feels like a big, happy step for Jack — more comfort, more freedom, and more chances to explore his body and the world around him.

23/01/2026

Proud of our Jack, he’s tolerating his standing frame SO much better, we used to have huge meltdowns (me included) but this morning he’s enjoyed it so much and has even been playing with some toys. Our little trouper 💙

18/01/2026

No stopping the boy now, since he first rolled he hasn’t stopped, and now he’s pushing himself up, he’s very proud as you can see 😍 well done our strong beautiful boy 💙

13/01/2026

When reality slaps you in the face - medical parents will truly understand this.

Immunisations - this is not a should I/shouldn’t I/anti vax post.

All of our children have been vaccinated.

Many people suggested Jacks condition was a direct result of vaccinations (which he hadn’t had at that point anyway.)

After Jacks 8 week, 12 week, 16 week and 1 year vaccines he ended up in hospital - the most recent one was a trip to resus.

I have battled and fought in my head about what to do.
Sought advice from many different people.

The bottom line is that Jack’s life is at risk whatever we decide to do. So when we were invited for his 18 month vaccines we decided to go ahead to try to protect him as best we can, they are booked for this afternoon.

This morning, Jack had a very intense episode of Infantile Spasms, his ketones are within range but on the lower side for him.

I spiralled, as I do, I cried, and then tried to contact every professional I could in the hope they would suggest postponing them.

After calming myself a little, I realised that whether it’s a good or bad seizure day, Jack is likely to react as he always has. So I decided to still go ahead, and thankfully he is booked straight into the hospice for three nights afterwards, which means more eyes and a doctor on site should something happen.

Life as a medical parent isn’t just what you can see - the tube, the seizures, the special equipment.

It’s those decisions that feel impossible.
It’s the guilt when something goes wrong.
It’s the constant fear of the worst scenario.
It’s looking at your baby and wishing they didn’t have to cope with so many different struggles.

It’s exhausting. All I have to keep reminding myself is that any decisions we make around Jack’s care, is all in his best interests and out of pure, unconditional love 💙

27/10/2025

They said he wouldn’t, but he did.

Something incredible happened today, Jack sat unaided for the first time!

What a clever boy 👏 we are always so proud of you little man 💙

15/10/2025

This one had us worried yesterday.

He was up through the night vomiting, which for any child is risky due to the risk of dehydration.

He wasn’t able to keep any of his medication down, or his milk. His milk is all he has for nutrition but it’s also vital for keeping his body in ketosis - if his ketones drop too low then his risk of life threatening seizures increases. Because he also couldn’t keep his medication down that made the risk much greater.

Yesterday was spent regularly checking his blood levels to make sure his glucose stayed stable, we slowed down his feeds so all milk was given over two hours at a time - it felt like he was constantly hooked up to his pump.

We had dioralyte on standby if he continued to bring up his milk, and his dietitian advised that if he couldn’t keep that down then it was a hospital admission.

He had more seizures and infantile spasms than normal but he absolutely bossed it, eventually managed to keep his feeds and meds down, and his glucose stayed at the correct level.

His ketones are still on the lower side but they’ll come back up eventually.

I’m thankful we have so far managed to avoid a hospital trip - it feels so strange not spending every other week on a ward, Jack is the most resilient little man and I’m so proud of him 💙

Jacks Journey

20/03/2026

06/03/2026

03/03/2026

02/03/2026

13/02/2026

07/02/2026

25/01/2026

23/01/2026

18/01/2026

13/01/2026

27/10/2025

15/10/2025

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