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.

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