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A Letter To My Friends: Yes, He Has Changed, But He’s Still the Same Boy.

A Letter To My Friends: Yes, He Has Changed, But He’s Still the Same Boy.

After a 3 week stay in hospital, my son is home and doing really well - given what had recently happened to him.

A question I’m asked by almost everyone I see now is, “What happened?”

Which I don’t mind, I’d much prefer people to ask.

It’s just hard to explain it all without going into much depth, but to cut it short... Aj suffered a 2.5 hour tonic colonic seizure, he had to be anaesthetised, intubated and ventilated in resus to prevent him going into cardiac arrest as his little body was under so much stress.

He was then sent as, ‘time critical’, to the nearest Children’s Hospital with a PICU (paediatric intensive care unit), which was 45 miles away.

During his 3 week stay at the hospital, after being extubated and leaving PICU, heading for the children’s ward, he had 3 more days of intermittent seizures.

He ended up moving back on to HDU (high dependancy unit), he was started on 2 regular anti-convulsants and he also had a gastrostomy (feeding tube) placed.

Soon after I’ve explained, people turn to my son and look at him with pity.

I understand people feel bad for him, it’s not a nice thing to happen to anyone, never mind a child - and if I could take it all away from him, believe me when I say, I would.

But he doesn’t need you to feel sorry for him, he’s still Aj.

He’s still the same little boy he was 3 weeks ago.

He still have the same beautiful smile.

All that’s changed are his physical abilities.

It’s hard when people pity you, I’m trying so hard to be positive - to make people a little less nervous (I’m guessing?) around him, but at the same time.

I’m still grieving for the parts that have gone.

You see my son used to walk, not very well.

But he walked.

He would follow me into the kitchen and point for his biscuits.

He could climb/crawl up the stairs.

He could climb onto the settee.

Get himself off the bed.

Use his own iPad.

Lift his own drink.

All of that has gone.

“Will it come back?” - a question I’ve heard, and asked myself, and doctors a thousand and one times.

The only answer is that we don’t know. No one knows.

You see the longer a seizure lasts, the more likely it is that there will be lasting damage to the brain.

He already making huge improvements though.

Two weeks ago his doctors feared he was blind.

He wasn’t fixing or following anything with his eyes, they weren’t even reacting to lights.

He couldn’t roll over or even change his own position.

Now, he’s sitting unassisted for longer periods of time and I’m more than 99% sure he’s seeing the TV!

A recent eye test showed he’s now following things with his eyes, but his eyes are, ‘wobbling’, in certain directions, which can indicate changes in the pathways to the brain.

There will be further investigations into this.

He’s even starting to try and crawl.

I’m hopefully he’ll regain some of the lost skills.

But, at the same time, it’s made me wonder.

Aj using his Scooot

Is walking really all that matters?

It’s taken me a while to get used to, but now I’ve realised, it doesn’t matter if he doesn’t do all the things he used to.

If he learns to walk again then yeah, that’ll be awesome!

And if he doesn’t?

That’s fine too.

As long as he is happy.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emmy Heaton

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Hi I'm Emmy, mum to AJ who has cerebral palsy.

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