Where have we been? Where are we now?!

It’s been a flurry of activity since Mae’s operation in USA and, whilst Mae took her first steps, our feet haven’t touched the ground! Thanks to everyone who has kept in touch on the facebook page, and apologies to those who only follow us through the website as we have had a gap in posts whilst we get back to a routine.

So, we thought we would have a huge round up of news, progress and things to come, to set the timeline straight! Are you ready….?

Mae’s SDR was a huge success and we are so pleased that we decided to strive for this chance for her. Now we embark on the beginning of a new journey – intensive rehabilitation to make use of Mae’s legs and develop her muscles. You can read more about why after-care is required to develop Mae’s mobility after SDR.

Since Mae has had her operation we have had a few people say ‘You must be so glad you can stop fund-raising now?’, but actually this is not the case! We always knew that we would need to continue to raise some money, as care costs will be an ongoing feature of Mae’s future. Although Mae’s spasticity has been reduced, enabling the use of her muscles, she will need to work hard to develop and then maintain strength in her ‘new legs’. We will therefore continue to fund raise to help towards the cost of equipment and Mae’s rehab programme. Here’s just an idea of some of the ongoing costs involved:

Splints: to support her legs during walking c. £750 per pair. 1 to 2 sets will be needed per year
Paediatric Tripod Canes: to support Mae when standing c. £75 per pair
Forearm crutches: c.£150
Walker: c. £350
Therapy bench: £350
Lycra suit: to provide dynamic compression and develop Mae’s trunk strength and posture c. £850
Physiotherapy sessions: £75 per hour.
Intensive rehab ‘Footsteps’ centre: £2500 per week
Post-op assessment USA, gym equipment, splint socks, knee immobilisers, Physio mats, trike and so on!

So, you can see that our fund-raising is still very much a current need. We have some local companies who are helping us to continue to raise ongoing funds through donations and you can see them on our new Links & Affilates page. If you would like to offer a service or book a sponsored advert please get in touch.

We would like to thank everyone who continues to support our fund-raising and help Mae to achieve her independence. We will update you as new events arise and if you would like to support us with an event or sponsored activity please contact Amy on 07572 878 679 or Sarah on 07587 245 658.

17th Feb 2014 round-up of the last week

You will notice that we have a new banner on the home page, with images of Mae’s trip to St Louis, and news of The Seventy‘s single and gig in aid of Hope4Mae. You can see more info on our events page about The Seventy and their generous support of Mae’s cause, and how to get your CD and tickets!

We are continuing to raise funds for ongoing care and after care costs for Mae. As has become apparent this week, it’s not always possible to know what costs are around the corner for Mae.

On 11th February 2014, Mae underwent corrective eye surgery in St Louis, which wasn’t anticipated. Mae has a divergent squint which meant her eyes were not aligned, but it was suggested in the UK that surgery would be purely cosmetic – that is, to make Mae’s eyes appear straight and ‘look better’. However, tests in St Louis showed that Mae’s squint could affect her vision and her ability to judge distance and space, so was actually a functional problem – it could stop her seeing properly, and affect her balance and her ability to walk properly. Since she has just had her SDR op the family wanted to give her every chance of succeeding with her walking, so they also agreed to her having an eye operation.

11th Feb 2014 - Preparing for Mae's eye operation

11th Feb 2014 – Preparing for Mae’s eye operation

There were some tears following surgery but Mae continues to be so brave. The family is already amazed by the difference in the alignment of Mae’s eyes and hope that this will bring huge benefits to balancing her binocular vision.

There was also a discussion last week about lengthening Mae’s hamstrings, through another surgical procedure. The need for this surgery can arise as the muscles need to stretch more than they have been used to, once the child begins to stand straighter and taller. Mae has already begun standing exercises, and surpirsed her family as to how tall she looks!

11th Feb 2014 Standing tall!

11th Feb 2014 Standing tall!

The family was advised that Mae might develop stretching of her hamstrings through Physiotherapy after care, and that natural changes can arise post-operatively over the next 12 months. After careful consideration, and concern about the number of surgeries Mae is tolerating, her family has decided to wait until Mae’s review appointment to decide on whether hamstring surgery will be required. Whether Mae has surgery now or later the overall result would be the same, so the family has taken the difficult decision to postpone this, and review it in 12 month’s time.

Mae’s Mum says: Mae has been put under anaesthetic twice in the last two weeks and we feel 3 times in 16 days would be a lot for her. The recovery is quite painful for the hamstring lengthening so we have been told. It was always our intention to return to St Louis in 12 months time for our post op check up with Dr Park. We would like to give Mae the chance to stretch her hamstring without having to contend with spasticity. Taking into account that Dr Dobbs (Orthopaedic surgeon) is more than happy to assess Mae at a later date and will have no worsening effects we are hopeful that we have made the right decision’

And so, as the family begin their final week in St Louis we have received news from Mum that Mae’s Physio is going very well, and she is coming along with her stretches and strengthening exercises. She managed to hold most of her exercises for 20 seconds and it’s great to hear Mae is getting stronger. Tomorrow Mae will have a review with Dr Park, and we will continue to share Mae’s news whilst she is recovering.

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