Oculodentodigital dysplasia,Aubrey strawberry

05/06/2023

I'm gonna be on national TV again 🥰 so chuffed to be invited to go on this morning.

ITV 14th June 10.30am ish. Can't wait 🥰

They asked for 4 video clips of kids with their teddies saying how their Teddy helps that they can put on the show 🥰 so I'm reaching out to see if anyone would like to make a 15 second clip and send it to me on WhatsApp, I can send it on to the team 🥰

I'm so excited 🥰 and I get a night kid free in London 🥰

16/04/2023

Yep 🤦🏽‍♀️😂

Credit: Motherhood & Madness

28/12/2022

Hope everyone had an amazing Christmas ❤️

07/12/2022

03/12/2022

There’s a nasty strep A infection going around that’s sadly taken the lives of 6 children

Aubrey has been unwell in hospital with it also
It started off as high temp and bit of sore throat and earache
She was taken to hospital when we noticed a a non fading purple rash
Bloods showed that her crp was over 500 (normal is under 10)

She had 3 days of iv antibiotics and her throat swap came back as strep A

If you are worried about strep seek medical advice asap

This is the rash Aubrey had and her tongue which is known as strawberry tongue

31/10/2022

Happy Halloween 🧡🖤🧡🖤

16/10/2022

😱😴

Image credit unknown

15/09/2022

💗

09/09/2022

03/09/2022

It’s okay to feel worried about heading back to school, college or university after the summer holidays. If you're feeling anxious, know you are not alone.

There are lots of things you can do to make the first week back a little less daunting. Experts at Forward Thinking Birmingham, our 0-25s Mental Health Service, have put together some top tips to help you during this period.

You can also get support at Kooth.com. It's a free and anonymous digital mental health platform which offers online mental health and emotional wellbeing support for children and young people aged 11-25.

Read more by downloading the latest edition of our Trust newspaper, TalkBWC, and turning to page 6:

https://orlo.uk/5A7Gv

16/08/2022

Post op eye app and aubs is doing great
They are very pleased with surgery results

Have just come back from 2 week holiday with family and had a great time

15/08/2022

Being in hospital can, understandably, be an incredibly worrying time for our sick kids and this anxiety can mean our expert doctors and nurses sometimes struggle to perform simple procedures.
After running trials, we've found transporting patients into a fun, lifelike, three-dimensional world using Virtual Reality technology, can – for a short period of time – help them forget they are in hospital.
Now we need your help to raise £105,000 to lease more headsets to support patients across our hospital. Could you donate today?
Read more about the trials, who the headsets will benefit and how you can help transform experiences for our sick kids here: https://orlo.uk/8SrYO

14/07/2022

So after a good amount of antibiotics and rest she back to herself 🙌🏻
She also perked up when getting her special teddy, with matching glasses and scars on its arms 🥺 from 3dtoyshop ❤️

08/07/2022

Only Aubrey strawberry could develop a infection in one of her eyes less than 24 hours after surgery
3 different hospital trips and we got to see the people we needed to

Oral antibiotics and 2 different eye drops
Back again Monday

07/07/2022

This brave little girl had surgery on both eyes yesterday to correct her squints

Today she is struggling with pain and swelling
Lots of cuddles and treats are needed

03/06/2022

1 year ago today we found out about Aubrey’s chiari malformation, she’s been so good with all the appointments and drs she’s had to see!
So many people live with this and are affected so badly by this, so many adults and children need surgery to help with the pain. It makes me feel so lucky her symptoms are so minor ❤️

17/04/2022

Happy Easter everyone 🐣

14/04/2022

Hi all just a little update on Aubrey
She started a new medication for her leg spasms last week
We were at children’s hospital yesterday as past couple of weeks one of her pupils gets bigger than the other she also gets dizzy spells
It can be a sign on increased pressure on brain
Which can happen with chiari malformation
Luckily pressures are all fine
They said it could be a type of migraine
But for now they are not worried

Aubs is enjoying the Easter holidays
And her new kitten

28/02/2022

Rare disease day 2022
Our little one in 10 million
ODDD
Chiari malformation (only person known of with both conditions)
She’s visually impaired
Faces multiple surgeries
Dystonia
So many complications would take forever to list

But she’s mostly such a happy little monster ❤️

02/02/2022

Hospital yesterday for eye test and to see surgeon
Aubreys now booked in for surgery on both her eyes
Pick up her new glasses next week

21/01/2022

Hearing test went really well! Aubrey was so brave, back in 6 months because her ear drums retracted slightly but other than that I know when she says she can’t hear me she’s fibbing 😂❤️

26/12/2021

Hope everyone had an amazing Christmas like we did 🥰

07/12/2021

So we have had a few stomach bugs and coughs that time of year I guess 🙃 nice trip to a&e not to long ago due to new head ache, uneven pupils, dizziness and not being herself waiting to hear of her nuro team, we think it was a build up of pressure but nothing to be done as of yet…
I’m terrible at updating her page not very good at this stuff 😅

08/11/2021

Today you are 5!🥰
Been such a Journey so far can’t wait to see what’s left ❤️

03/11/2021

4 years ago today Aubrey had her first op

Had a few appointments recently
Still haven’t found a reason for her bowel and bladder incontinence other than her ODDD
Were told that using a catheter on her was a option
But we feel this would be very traumatic for her
She faces more surgery on her hands but this will be when she is older

It’s also her 5th birthday next week!

She enjoyed half term and Halloween

24/09/2021

So with starting school I may have forgotten to post anything on this page 🙈
Aubreys been doing good she’s been so brave with all appointments that come her way and how she’s reaching to starting school(not a fan of leaving me)
But alway come out with a smile on her face 🥰

04/09/2021

September is chiari malformation awareness month 💜
With eye pain, numbness, funny feeling in the head and anxiety from all the appointments She still smiles 🥺💜

20/08/2021

Another app today to try and find a cause for Aubreys incontinence issues
She had ultrasound on bladder and all seems to be ok

She enjoyed herself with owl and bear outside 🥰

15/08/2021

More pics from our recent holiday
Had such a lovely time