10th Feb 2014 Update

There have been some ups and downs since Mae’s op, and you may have seen posts on facebook covering some of the progress Mae has made. Mae was delayed in getting up and about after surgery due to having a raised temperature, feeling unwell and experiencing painful muscle spasms in her back. I know we all felt for the family when we read how Mae was feeling, and it must be hard to keep sight of the bigger picture when you see your child in discomfort.

...and we are up and out of bed!

…and we are up and out of bed!

Despite that Mae was up and about on 31st January and, unbelievably, she had Physio on the same day! Mae discovered the joys of the trike on 1st Feb and took to it like a duck to water! (You can see the video on facebook)

1st February - Look what I can do!

1st February – Look what I can do!

Intensive Physio sessions help to re-train the nerves and build up the muscles, and this helps to ‘teach’ the body how to develop a new posture – all aiding the development of walking skills and strength. As part of her post-op care Mae has been working with Physiotherapist, ‘Mad Mike Kenyon’, and by 3rd February was coming on really well – despite being shattered afterwards!

2014 02 2nd tired after physio 2014 02 3rd Meeting Mad Mike Physio

 

 

 

 

 

 

 

 

 

 

Mae has had a few episodes of tears through her Physio sessions but has continued to push on, and it has been lovely to see photos of her smiles at the end of sessions and her clear sense of achievement. You can see her enjoyment on her trike on facebook. At the moment Mae has help propelling the trike, but even the passive movement of her legs helps to ‘re-train’ the nerves and muscles towards natural walking actions.

2014 02 9th smiles and tears today

Helping Mae to find her feet has brought about a few smiles this week and lots of tears.

In the UK, Mae’s parents were advised that Mae may require hip surgery, approximately 12 months post SDR, due to a functional problem with her hip joints, and may need eye surgery to cosmetically improve her divergent squint. Whilst at St. Louis her parents have learned that Mae’s squint is functionally problematic rather than purely cosmetic, and could affect her ability to focus when walking, to balance and to gauge distance. For that reason it has been decided that Mae should undergo eye surgery tomorrow, whilst still at St Louis’ Children’s Hospital.

We will keep you updated on progress when we know more from the States.

Meanwhile, here in the UK we continue to have ongoing support from locals with Mae’s fund raising. Since new costs have arisen we will be continuing to fund-raise for Hope4Mae and we’re pleased to announce that Chesterfield band The Seventy has made a cover version of the fabulous song ‘Ho Hey’, which will be sold in aid of Hope4Mae! They will also be performing live in Doncaster on 22nd March, with tickets sold in aid of Hope4Mae. We will bring you news of how to buy the single, and tickets for the gig, as soon as we have more details!

The Seventy

The Seventy

Thanks for following Mae’s progress and continuing to support her dream of walking xx

This is what it has all been for….

On the 25th January we landed safely in the city of hopes and dreams – the place where Mae’s dream of walking could become a reality, thanks to SDR, Dr Park and all those who have supported our fund raising efforts!

Monday was our first visit to St Louis Children’s hospital where we got to meet with Dr Park and his team. We are feeling positive, although Mae was worried that Dr Park might wish to X- ray her. She was great throughout her pre-op evaluation, and we’re all set to go ahead. Thanks to the wonders of technology we hope to get ‘face time’ with the boys around lunch time and this will give Mae an extra boost.

Meeting Dr Park

Meeting Dr Park

Mae’s smile seems to be just as infectious here as it is back home, despite feeling jet-lagged and trying to adjust to the time zone difference. Mae had great fun splashing around in the pool on Monday, which made her wiped out earlier than usual. She managed a good night’s sleep whilst Mum tossed and turned – afraid of missing the alarm which would signal preparation for Mae’s op! Mae’s first words on waking were ‘Mum, is Dr Park going to make my legs better today?’

Mae’s op will be on Tuesday at 11am St. Louis time – about 5pm GMT, so about the time you read this post! I can’t believe this day is finally here, and I’m feeling a mixture of emotions.

The local press back home have continued to feature Mae’s story, and help us to publicise the aftercare costs which will be involoved. Thank you to everyone who has helped us get this far!

free press

Doncaster Free Press, p.32, Thurs Jan 23rd 2014

Thank you so much to each and everyone of you that have helped to make this possible for Mae. We truly can’t thank you enough. This operation really does hold the potential to be life changing for Mae. xxx

We have a date for Mae’s op in the US!

A message from Mae’s parents:

‘We are pleased to announce that Mae has been offered SDR on January 28th.
Thank you, thank you and thank you for giving us this chance to change her life. We are eternally grateful xx’

The fund raising continues to raise much needed resources for Mae’s aftercare, which will include a return trip to St Louis for post-op re-assessment, intensive Physiotherapy and associated residency costs during treatment.

Thanks to those have already shown their support, and to those who continue to support us. We will be holding a charity event, this coming Wednesday, at our local social club – Hawthorn Club, Cantley, to add to the funds. We hope you can join us then!