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

30th January 2014

30th January GMT 21:10, From Mae’s Mum: ‘Mae hasn’t had the best day today. She has been quite drowsy and so her medication through her epidural has been switched. She has had a temperature and a fever. The nurse is going to swob her for the flu. Mae has been experiencing back spasms and she has been given Valium to help with this. It’s 15:10 PM here and she has finally had something to eat (Strawberries + grapes). We have had further problems getting Mae to drink something today. Again we have been using a syringe and she has liquids coming through her IV also. Whilst writing this status Mae has had 4 sips of apple juice :) Good Job!!’

‘Mae’s face is swollen due to being laid flat and she is all sweaty from her fever.’

But, you guessed it, Mae is STILL smiling! A-MAE-zing little girl! xxx

30th January sweaty Mae

Mae’s US trip has been mentioned in Doncaster Free Press again today, so many thanks for continuing to spotlight her progress for the local followers!

30/1/14 Doncaster Free Press

30/1/14 Doncaster Free Press

Post-op update, day 1

Good morning everyone! As we start our day in the UK, Mae is enjoying her first night of sleep post-op in St Louis. So far she spoke to Mum at midnight (GMT) and asked when she could get in her wheelchair! Then Mum met the ‘touch-dog’, Pepper at 2am (GMT), whilst Mae was sleeping, before everyone retired at 7am (GMT). Here’s a message from Mum at 7am (1am in St Louis):

‘Feeling tired. Today has been an 18 hr day. Time to get some sleep before the doctors do their rounds at 6am. Mae has been sleeping for the last few hours. She has been turned and seems to be coping well.’

So, we’ll know more at about 12 noon GMT, when the Drs do their rounds. Well done Mae and we’ll keep you posted here and on the Hope4mae page. Thanks xx

Mae, sleeping peacefully following her SDR surgery

Mae, sleeping peacefully following her SDR surgery