Olivia’s Journey with Tuberous Sclerosis Complex

19/07/2024

And that’s year 1 complete!

How proud I am of you baby girl! To think you had brain surgery in the 31st August last year and returned back to school on the 11th September and this year you have smashed it!

Never stop being you! 😍

Highfield Littleport Academy

12/06/2024

Hey guys!

Oakley is doing a sponsored swim on Monday for his swimming club Whittlesey Manor Dolphins Swimming Club!!

Would anyone be interested in sponsoring him? He’s aiming for 40 lengths without stopping!! 💪🏻🩷

Weʼre raising money to raise funds for Oakleys swimming club!. Support this JustGiving Crowdfunding Page.

29/05/2024

Here’s a video of Olivia having her feeding button changed! It has to be done every 3 months so I thought I’d video it and explain what I’m doing in case people were interested and intrigued:)

For those who are squeamish I apologise! I used to be too! 😂⚠️

Click the video to listen to me explain! 🩷

22/01/2024

Loads of items up for as little as 70p!!

30% off everything and 30% extra off when you purchase more than 5 items at once!

Happy for collection or I can deliver locally - doesn’t have to be purchased on Vinted and posted paid etc!

I really need this all gone as I’ve got more to upload too!
If you’ve got Vinted please follow me! It really helps boost my wardrobe on there!

🙏🏻 🩷🤗

One community, thousands of brands, and a whole lot of second-hand style. Ready to get started? Here’s how it works.

09/12/2023

Today I’ve created a ‘big girl’ rainbow bedroom for my little princess!

New drawers to replace a wardrobe and a bed move from under the window …. I’m in love with it!

I keep going in to look at it! Can’t wait to see how she reacts tomorrow when she sees it… no doubt t she’ll have a melt down but hopefully she’ll settle into it 🩷🥰🌈

Olivia’s Journey with Tuberous Sclerosis Complex

22/11/2023

Lots uploaded today!
Massive clear out of my clothes! Sizes 4-10! Summer and winter! More coming!

Kids stuff uploaded too! More coming of Olivia’s!

One community, thousands of brands, and a whole lot of second-hand style. Ready to get started? Here’s how it works.

17/11/2023

CHILDREN IN NEED 2023!

🥰😍

04/11/2023

Day +65

Seizures are back but minimal and not daily either!

Olivia is thriving and is coming on hugely! She’s talking more that’s for sure and is definitely a little sas pot!

We’re weaning off the dummy and she’s also walking a lot more now instead of being in the buggy! Understanding has improved hugely and she’s currently going through terrible 2’s! SEND HELP‼️

This girl never fails to amaze me!

21/09/2023

Day +21

Olivia has been doing great! She’s now talking a lot more and has become a lot more independent! Olivia is now starting to show signs of acting around the age for a typical 2 year old!

Her quality of life has improved dramatically and she’s overall so much happier!

She’s had a few very subtle seizures but still pretty much seizure free!

She’s learning life doesn’t always go her way and has been told off a couple times which she has responded to by crying and saying me sad which means she’s understanding her wrongs!

She’s been back at school now since day +11 and has made a new friend and has really settled back in!

The scar is healing nicely and hair growing back!!
This child is just incredible!

05/09/2023

Day +5

Olivia’s been SEIZURE FREE since yesterday!

Sorry no updates yesterday… we actually got discharged home!

I didn’t tell anyone we were discharged and I then surprised them all by turning up
At their houses last night!
Few tears happened 😂

Olivia is doing great, she’s talking laughing and enjoying life like she never has!
It’s INCREDIBLE!

03/09/2023

Day +3 post op- continued

Who’d have know she could be like this!!!

03/09/2023

Day +3 post op

Olivia has had 2 clusters of her usual spams today but nowhere near like they used to be!
She’s had 6 spams in 2 minutes and vey mild and today very little eye flicking and no absences today!

Today she started off a little sleepy and had no energy. But after breakfast if a sausage, beans and bacon she had a walk around the ward and and we went for a stroll off hospital grounds for some fresh air.
When we got back she slept for a solid 2.5 hours!
**It was bliss! I managed to have a sleep and shower! **

This afternoon the balloon she was given by a family I’ve made friends with had started to go down so we walked up to the local shopping square and I got her a new one… she’s been saying it’s a balloon all afternoon!
She’s been speaking more she’s been saying mummy loads which she would never do before and has been doing more child like things as you’ll see in the videos in the next post as I can only add one video to the post!

Honestly so far this surgery has changed so much… I’m hoping it stays like this because it’s like I’ve got my little girl appearing that I’ve never had!

Todays been an eye opening day and good one!