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