Live_Like_Rosa

Fundraising for Rosa 🫰
Sharing Makaton signing 👌
Raising Disability awareness 🤝
Follow our story here 👉

[Live_Like_Rosa @Live_Like_Rosa]

The difference our @Vitamix blender has made to our life #tubefeeding Is incredible.

#blender #tubefeedingawarness

[Live_Like_Rosa @Live_Like_Rosa]

Exciting evening for us tonight Rosa's @vitamixuk arrived!

@vitamix gives you a discount if buying for a medical purpose! Amazing to see company spreading kindness in this way 👍

#blendeddiet it's on.

#blendeddietfortubies #spreadlove #tubefeeding

[Live_Like_Rosa @Live_Like_Rosa]

#RESPITE
Respite is so vital for #Families like us. It's relentless caring for some with #complex #medical and physical #disabilities is exhausting. We have returned home after some #respite from @CHSW we are so lucky to be #supported by such a wonderful #charity.

#hospicacare

[Live_Like_Rosa @Live_Like_Rosa]

Exciting evening for us tonight Rosa's @vitamixuk arrived!

@vitamix gives you a discount if buying for a medical purpose! Amazing to see company spreading kindness in this way 👍

#blendeddiet it's on.

#blendeddietfortubies #spreadlove #tubefeeding

[Live_Like_Rosa @Live_Like_Rosa]

Rosa's ready for the coronation weekend 🇬🇧👑

#corinationready #godsavetheking

[Live_Like_Rosa @Live_Like_Rosa]

One year on our live like Rosa journey ☝️

Fundraising for Rosa 🫰
Sharing our story 🤲
Sharing Makaton signing 👌
Raising Disability awareness 🫶
Making new friends 🤝

THANK YOU all for following us supporting us and showing us so much kindness.💙

[Live_Like_Rosa @Live_Like_Rosa]

Wednesday.

8.15am audiology appointment
10am Diaetition appointment
11am weekly shop with a toddler in tow
1pm asked to take Rosa to the hospital for a consultant review.
Emergency toddler drop off.
2pm - 6pm chest x-ray and long talk with consultant New medication to trial.

[Live_Like_Rosa @Live_Like_Rosa]

Today's sign is Selfie.
Learnt directly from @cbbc very own @_JustinFletcher
@MakatonCharity #wetalkmakaton

[Live_Like_Rosa @Live_Like_Rosa]

Our amazing team is getting ready to Run for Rosa at the Great West Run on the 21st of may!

We are fundraising to get Rosa therapy to improve her mobility something which has recently declined.

There's still time to support here 👇
https://t.co/4rj2UoZj4o

[Live_Like_Rosa @Live_Like_Rosa]

Rosa came home with her rabbit standing frame for Easter holidays.

She loved showing us how good she is at using it today and Beau loves it's giant wheels!

The physiotherapist suggested we have one at home if we get on well with it.

Another giant bit of kit.

[Live_Like_Rosa @Live_Like_Rosa]

We are preparing to transition partly over to a blended diet for Rosa.

This means we will be blending real food put through her Gastrostomy.

We are hoping to reduce vomiting and retching and improve Rosa's diabetes control.

#blendeddiet #tubefed #dontgetyourhopesup

[Live_Like_Rosa @Live_Like_Rosa]

This moment of pure joy brought to Rosa by the amazing team at @WhizzKidz thank you! 😁

[Live_Like_Rosa @Live_Like_Rosa]

Rosa's supporting @comicrelief

[Live_Like_Rosa @Live_Like_Rosa]

Rosa had a very exciting morning and received her disability trike!

Thank You @WhizzKidz who have made this possible!

#theyseemerolling

[Live_Like_Rosa @Live_Like_Rosa]

Rosa is very excited about her new @BillyFootwear high tops 🐐🐐🐐

[Live_Like_Rosa @Live_Like_Rosa]

We are feeling refreshed and reset after our respite at @childrenshospicesw

Here's a glimpse of our stay.

Not featured the amazing staff who have taken care of our every need. Managed Rosas complex medical and physical regimes all while making some amazing memories together.

[Live_Like_Rosa @Live_Like_Rosa]

It's #rarediseaseday2023 today.

Rosa has a rare genetic Disease, Chromosome 13q deletion at breakpoint 32.1.

This genetic disorder is the cause of all of her medical and physical challenges (except her diabetes).

#rarediseaseawareness @Unique_charity

[Live_Like_Rosa @Live_Like_Rosa]

Today's signs are 'Big World'
@MakatonCharity
@ExeterCathedral
#wetalkmakaton #exhibition #theworld

[Live_Like_Rosa @Live_Like_Rosa]

#SaturdayVibes

[Live_Like_Rosa @Live_Like_Rosa]

Here's our signs of the week!

🐸Frog
🐢Turtle
🦒 Giraffe

#wetalkmakaton @MakatonCharity

[Live_Like_Rosa @Live_Like_Rosa]

Another day spent in hospital to be added to the countless stays.

Aspiration pneumonia = Chest physio and Antibiotics required.

An exhausted Rosa once again and praying that she's at the bottom of this current fall.

#Livelikerosa #hospitalstays