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Ambers Journey - The Wish to Walk

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Ambers Journey - The Wish to Walk

This page is to raise awareness and let others follow Ambers journey and wish to walk. Amber spent 41 days in NICU intensive care before being discharged home.

Amber was born premature at 28 weeks on 22nd February 2019, she was born in poor floppy condition and put on a ventilator the first 4 days of her life in NICU William Harvey hospital before going in to cpap. A brain scan showed she had 2 bleeds either side of the brain grade 1 & 2 . At 3 months old Amber had a high pitch cry it was a constant in pain kind of cry. after a lumber puncture then diagn

osed with meningitis she had a febrile convulsion and wasnt sure she had survived it ....she soldiers on....

Finally back at home her family notice that Amber cannot sit independently, put it down to her being premature , few weeks later took her back to the hospital she was confirmed with Cerabal palsy spastic diplegia, affecting mainly her legs. Level 3 on the GMFCS . Amber can now sit in the 'W' position and she got a Walker in November 2020 The first steps her legs were like scissors (crossing over) this is due to her brain damage sending wrong signals , However with constant physio she is making incredible progress and now learning to use her Walker independently. She has her full mind, very vocal , she is a miracle . We all hope the wish to walk can oneday become a reality

This page is to raise awareness and let others follow Ambers journey and wish to walk.

04/06/2024

So good to see her standing in front of me, not possible 6 weeks ago....this is going to be constant hard work but we are so ready for it, standing longer each time and getting further away from the sofa each time, gaining confidence 🌟

27/03/2024

We have a date for Ambers SDR operation, 17th of April. Great Ormond Street gave us a book to read to prepare her for the op but I haven't mentioned it to her and I don't think I will until after the op, I don't want to cause any extra upset, will see, but anyway, although this book is for a child, it gives a better understanding to adults too, ive only screen shot a couple of pages. Once this is done we can start to concentrate on building strength in the muscles she's never been able to use before. I have again been told Amber will not walk independently after the op yet she will benefit in many other ways and that she's a great candidate, ...I'm not naive but i still believe and pray she will one day 🙏

02/03/2024

Yesterday was international wheelchair day.....don't let anything take away your sparkle princess 👸 ♿ 🎶 💃

16/01/2024

2/5 hydrotherapy sessions ♥

04/01/2024

SDR pre op assessment, Arrived this morning , physio til 3.15 then 2 xrays spinal and pelvis, just left, long day,dont know how she is still awake, should know the date of her op in the next 2 weeks, thanks dad/grandad for driving us and mum/nanny for helping us ♥ consent form signed

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