Drae’s Journey Living with TBCK - new

30/08/2025

Drae living his best life at Julia's House Children's Hospice with his girlfriends 🥰

13/08/2025

Drae met one of his TBCK sisters at the weekend ❤️
This was the first time we met another TBCK family and it was the best feeling ever, as u can tell by both there faces 😍

Life with Little E

02/06/2025

I hold your hand, so small, so dear,
As shadows fall and tremors near.
The silence breaks, a dreadful sound,
Your body trembles, another round.

My heart, it shatters every time,
A helpless song without a rhyme.
I call your name, I plead and pray,
While cruel sparks steal you away.

Your lashes flutter, lost in fight,
Eyes chasing ghosts beyond the light.
And I, your anchor, stay so near-
Wiping sweat, swallowing fear.

Each second stretches, sharp and thin,
A war I cannot help you win.
I’d trade each breath inside my chest
To give your weary eyes some rest.

The world resumes when storms subside,
You blink back slowly, open-eyed.
And though you’re back, not quite the same,
I whisper love and speak your name.

They say I’m strong, but they don’t see
The cracks inside what’s left of me.
For every storm that shakes your core
Rips mine apart a little more.

Still, I will guard, I will not break-
For you, my child, for your sweet sake.
In every quake and every cry,
My arms will hold, I will try.

Though I can’t take this pain away,
I’ll stand beside you every day.
My love is fierce, my vow is true-
No storm will ever carry you.

Allison McElvain

26/05/2025

We still can’t hold our head or sit, but he can certainly do the pelvic thrust 😂

23/05/2025

Every kid wants a happy meal

18/05/2025

One of the things Draes body doesn’t produce is leucines (which plays a crucial role in muscle protein synthesis and growth, as well as potentially aiding in blood sugar regulation and immune function) so we add it to his foods, it doesn’t fix the problem, but it helps and that’s the best we can do 💙

17/05/2025

The most traumatic thing I’ve experienced in motherhood wasn’t a hard birth.
It wasn’t the sleepless nights.
It wasn’t the tantrums.

It was seeing my child on a ventilator.
Holding their limp body paralyzed by medication.
Watching machines breathe for them.
Praying they’d make it through the night.
Praying I’d recognize them when they woke up.

You don’t forget that kind of fear.
You don’t forget the feeling of unknowns.
You don’t forget the sound of the alarms.
And you never forget the withdrawals.

The shaking, the crying, the different person they are when they’re finally extubated and their tiny body has to detox from meds they never asked for.

That kind of trauma stays forever.

So if you’ve been there… if you are there just know you’re not alone.
It changes you.
But you’re still a good mom.
And your strength? It’s unmatched.

17/05/2025

Me and my dog 💙

13/05/2025

I never take pics of draes x-rays but actually asked to today when we seen respiratory.

You can see from the x-ray, Draes port and where it accesses his heart, his scoliosis and his collapses on his lungs.

Respiratory have decided today Drae needs a broncostopy, where they enter the lungs to have a proper look and try to reflate them fully. He will also be having sleep over at Bristol children’s for a cardio-sleepgram as it’s more in-depth than the sleep studies we do at home.

Although he maintains his o2 levels most of the time, There feeling is the study will show Drae will need a more invasive oxygen support while sleeping, this is due to the effort he has to put in while asleep and the extreme restless sleep caused by this. We pick up 200-300 movements a night on his camera, so he never gets into a proper rem sleep and when he does his oxygen levels drop quick

08/05/2025

07/05/2025

I JUST CANT EVEN COPE WITH HOW AMAZING THIS IS 😍

Wireless charging for Draes double feed pump 😜

04/05/2025

Meal prep for the week done for my boy 💙