We were treated to a visit from Becky Wood, the Reporter from BBC Radio Stoke who is following our family over the next few months. Becky fills the room with enthusiasm for her work, and is such a shining star for our girls. Tilly gave her own interview with growing confidence. I find it hard to believe that this is the same little girl who hardly ever spoke a word in her first school.
We enjoyed our weekly swim in the warm waters of Horton Lodge Special School where Tilly belongs to a Club of youngsters with disabilities who have been included into the mainstream educational system, and might be missing out on physiotherapy. It’s also a chance to ‘exchange notes’ and we were able to tell another family about all the respiratory equipment that Tilly has to manage her condition. A young lady has been fighting off a chest infection for over five weeks and might benefit from some of the machines that Tilly relies upon. There doesn’t seem to be parity of allocation of therapies for the same condition, but of course, I do not have the ‘global overview’.
As part of School Governor training I attended a course on “Safer Recruitment” which gives guidelines on keeping our children safe from a range of dangers. It was very interesting, distressing and useful. It was also a good arena to throw light on a daily activity that is loaded with potential risk that I’ve been anxious about for ages. Every day hundreds of children across the county are bussed into school on large coaches with one driver and no escort. The children do not wear their seat belts; they move around the bus at will and can be left alone with a driver who has not had a CRB check. It was decided at this course that we would band together and make a case to the Local Authority so that children can be supervised on their journey to and from school. It makes a mockery of all the other safeguarding measures and risk assessments within school if our children are not being adequately protected at either side of the day. I’m hoping for action before it’s too late.
Unfortunately I was called away from this course during the morning as the school rang to say that Tilly was not feeling very well. Tilly had had such late nights at Brownie Camp, then the early starts for her MRI scan and ballet, and now she looked as if she might be coming down with a cold. We spent the day working through all of Tilly’s respiratory therapies, started the anti-biotics, and snuggled her on the couch for a snooze. We seem to do better attacking Tilly’s colds right at the beginning, rather than letting them develop into a more serious chest infection.
Miraculously, Tilly woke up feeling back to normal following a long, settled night’s sleep. I heaved a cautious sigh of relief and Tilly returned to school, albeit without joining the class for swimming. There is just no knowing where the slightest sniffle will end with Tilly, and we have certainly ended up in some really scary places. Tilly’s chest weakness means that the slightest cold can quickly turn into a sinister respiratory failure.
Life's about managing the risks.