Evie Squeezie’s Journey

Evie Squeezie’s Journey Hi everyone im Evie (Squeezy) i was born on 08/04/25.

I have Trisomy 21, complete AVSD and Hirschsprungs disease and Mummy and daddy set up this page for my friends, family and everyone inbetween to follow my journey through life, and all its hurdles 🩷

Today's Nephrology appointment didn't really go as I'd hoped today. Evie has Chronic kidney disease stage 2 😩 Basically ...
01/10/2026

Today's Nephrology appointment didn't really go as I'd hoped today. Evie has Chronic kidney disease stage 2 😩 Basically when she had her heart repair and was put on bypass it caused an Acute kidney injury which means there was a decrease in her kidney function, her last bloods showed that there is still a decrease in the function so it's now classed as CKD instead of an AKI 🙄 although the doctor explained it is only a mild decrease but it means she has to be monitored longer term to keep an eye on it. It's unlikely to cause any day to day problems but it's still there and probably always will be now which makes me sad 😢 So basically she needed one problem fixing which has now caused a different problem, typical! Anyway as you can see Evie is far from bothered 😆🩷

With 2 heart surgeries under her belt Evie is our Heart hero without a doubt! Big love to all the other Heart warrio...
29/09/2026

With 2 heart surgeries under her belt Evie is our Heart hero without a doubt! Big love to all the other Heart warriors out there and to the heart parents too because it's ALOT! ❤️

29/09/2026

Evie's Cardiology follow up was really positive today, 6 months post op and they are happy to not see her now for 12 months and given the all clear to go on holiday next year here we come! 🤗👏 AVSD repair...Smashed it!!! Hoping for a similar result from Nephrology on Thursday 🤞

This week we have follow up appointments with Cardiology and Nephrology. I'm pretty confident that there will be no conc...
27/09/2026

This week we have follow up appointments with Cardiology and Nephrology. I'm pretty confident that there will be no concerns with either and we will have a long well earned break from Alder hey appointments 🤞

Today we have an appointment at Alder hey with Gastroenterology to discuss Evie potentially getting a Peg/G-tube 🥺 I was...
23/09/2026

Today we have an appointment at Alder hey with Gastroenterology to discuss Evie potentially getting a Peg/G-tube 🥺 I was really hoping it wouldn't come to this option but as time goes on with Evie's oral aversion it's looking more and more likely that this is the route we will be going down. Will see what they say today but I kind of have an idea of what's going to be encouraged

Just Evie and her Best friends for life ❤️🥰
20/09/2026

Just Evie and her Best friends for life ❤️🥰

20/09/2026

Evie's 2 year old sister Ellya can be a bit much for her sometimes but then there are times like this 😩🥰

💙 WHAT IS DOWN SYNDROME? 💙Down syndrome is a genetic condition that happens when a person is born with an extra copy of ...
20/09/2026

💙 WHAT IS DOWN SYNDROME? 💙

Down syndrome is a genetic condition that happens when a person is born with an extra copy of chromosome 21. 🧬

That extra chromosome may cause some developmental and physical differences — but it also comes with incredible uniqueness, personality, love, and strength. ✨

People with Down syndrome can:
💛 Learn
💛 Go to school
💛 Play sports
💛 Have friendships
💛 Work jobs
💛 Follow dreams
💛 Live happy, meaningful lives

Most importantly…

People with Down syndrome are PEOPLE first. 💙

They are not defined by a diagnosis.
They are sons, daughters, brothers, sisters, classmates, teammates, and friends.

The goal isn’t pity.
The goal is acceptance, inclusion, opportunity, and love. 🌎✨

Different is not less. 💛💙

Evie had her first day out at Blackpool Pleasure beach today for her big sisters Birthday 🥰
19/09/2026

Evie had her first day out at Blackpool Pleasure beach today for her big sisters Birthday 🥰

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