Tilly has now recovered from her first cold of the season, and it leaves us all quaking and feeling, “it’s that time of year again”. Tilly’s weak muscles result in an inability to cough which means that the slightest sniffle can result in an emergency admission to hospital for intravenous anti-biotics; intensive chest physiotherapy and possible intubated ventilation. Living with the threat of serious respiratory illness is constant, but greatly increased during the winter months. Tilly will take a daily dose of preventative oral anti-biotics throughout the season which, unfortunately, adds to the morning’s stresses as Tilly is rather reluctant to take medicine. These respiratory crises are very traumatic all round and so we do everything we can to avert such an episode.
The first thing we do is withdraw Tilly from school and all activities and start a course of anti-biotics which we keep in stock. Tilly has learnt to take them in tablet form which is better than the syrup, but is still a stressful challenge. I tend to sleep downstairs with Tilly whilst fighting off the lurgy as there is often and increased demand for oral suction and monitoring during the night. Since the age of three Tilly has slept using a night-time, non-invasive ventilator which bellows her lungs with air and helps keep them clear. The pressures on this machine can be increased during a chest infection to improve Tilly’s breathing capacity. I couldn’t believe the change in Tilly’s general health once she was put on this therapy and would thoroughly recommend it sooner rather than later.
Tilly’s heart rate and oxygen levels are also always monitored overnight by a toe probe and are a great indicator if things are starting to go wrong. An alarm will sound if Tilly’s levels are entering a danger zone.
Tilly will have daily sessions of chest physiotherapy starting with ventolin or a saline solution delivered by a nebuliser mask to loosen up unwanted secretions; a session on her Hayek oscillator or “Shaker- Maker” which, via a shell shaped piece of plastic strapped to Tilly’s chest, rattles up Tilly’s upper body and moves secretions up to throat and then delivers impressive compressions to achieve coughs.
Tilly then has an Emerson Cough Assist machine, which is forms a seal over her nose and mouth and blows air down her throat and then hoovers back any lurking ‘rubbish’. Tilly then expertly uses her suction unit to remove any remaining yak which could go on to cause pneumonia. Simples!
However, if all this section management fails and Tilly has difficulty in breathing then we do have a cylinder to deliver a limited supply of oxygen whilst calling the Emergency Services to rescue us. The local First Responders usually arrive before I’ve finished booking the call. Tilly has ‘Open Access’ to North Staffordshire Paediatric Intensive Care Unit and they have managed her care brilliantly over the years, but, as much as we love them, we do our level best not to make an emergency visit.
Whilst Tilly was fighting off this latest infection, Michele, Tilly and Candice’s Godmother, and I created a floral offering to place in the ‘children’s window’ at Church to celebrate Harvest Festival. Floral art is certainly not my forte so it was great to have Michele’s support. We placed a Christmas shoe box at the centre of the piece to remind everyone that this year we were supporting Operation Christmas Child. I think we got away with it!
We were treated to a visit from Grandma, Uncle Mike, cousin Amanda and Grace - the girls' cousin and God-daughter. Rolf's family live a couple of hours away so it was so magical to spend some special time with them, and Grace just lit up every room. It is such a shame that we live such distance away and don't get to spend more time with them.
It was with great excitement that Tilly took delivery of her new Medicotech exercise machine that has been generously funded by Muscular Dystrophy’s Joseph Patrick Trust. Primarily, this equipment will deliver a passive work-out for Tilly’s arms and legs and give her a good cardio-vascular work-out, as well as improving her circulation. However, the machine is designed so that Tilly can contribute and her input will be recorded and reported back to her at the end of the session. It is brilliant! We have already noticed that Tilly can bend her legs so much easier than before, as they had become rather stiff following surgery in May. The idea is that Tilly can drive into her machine and exercise her arms and legs as often as possible, even whilst watching Hannah Montana! It is quite transportable so I could even take it into school for Tilly to work on during ‘inaccessible ‘PE lessons.
Wouldn’t it be great to see such a machine in other settings such as leisure centres, care homes, day centres or hospices? The opportunities are quite endless as they can be adjusted for different users, and the rewards could be phenomenal.
We somehow made it into school for Tilly to have her ballet lesson with Miss Jeanette which left me brimming with tears. Tilly uses her arm support to dance which have now been adjusted so that Tilly can drive with them in place and it is just such a joyous sight to behold. Who’d have thought that Tilly would be working on her third British Ballet Organisation award? Just need to create an outfit for the exam which will probably involve Tilly’s faithful and creative Godmother and her sewing machine again!
Unfortunately, with all the early morning rush and trying to remember everything (suction unit, arm supports, school bag, lap top, dinner-money, reading book, splints, etc) I forgot Tilly’s boots which cover her splints! Tilly’s feet are encased in rigid plastic ‘ski-boots’ around the clock to try to slow down deformities which occur due to her muscle weakness. They are not the prettiest objects but they do a good job and normally Tilly would prefer them to be concealed beneath boots. Fortunately, it seems that Tilly is now so comfortable with herself at school that she didn’t mind spending the day showing off her pink butterfly splints. I think this might be a good sign?
This has been rather a hectic week with a whirl of extra activities to squash into the Griffiths' already busy schedule. Candice has been busy almost every evening with cross country, chess, netball, guides and ballet and has had to get up at 0600 to keep up with her homework.
Daddie has been busy looking after our B&B, including annual improvements, whilst keeping up with the ironing, shopping and creating the most delicious meals for us. He also went to a meeting at Westwood College where the girls will go next and was most impressed with all the work they have done to make it wheelchair accessible. Rolf has also had to 'hold the fort' whilst I attended my Governors' meeting which have kicked in for the new school year.
Rudyard Sailability has had a wonderful last week of the season with the local Special Schools and I was thrilled to be able to assist with their enjoyment. One more session to go before our dilapidated shed is emptied and pulled down. Work is starting on our new building very shortly, but we are still desperately seeking a secret millionaire to get the job done by next Easter. Anne, one of our Trustees and Legal Representative, put on a fashion show in support of the building fund and we glammed up and went along to help raise some pennies. The evening was a glittering success enjoyed by all. I was especially proud of Tilly who took the microphone and thanked Anne and all present for getting the Charity this far.
I spent some time with members of the Caudwell Children Team discussing the content of the five minutes talk that I, as an Ambassador of the Charity, will deliver at the Conservative Party Conference next week. I feel very honoured and privileged to be given this opportunity and am aware that I will be a very small cog in this giant political machine. We are hopeful that my presentation will have an impact on the audience and bring about new ways of supporting families of children with disabilities.
Five minutes isn’t very long, so perhaps I should politely request that Andrew Lansley, Secretary of State for Health, meets with the Caudwell Children to explore opportunities to refine the political machine so that it will run more smoothly and effectively to release and serve the families who have become crushed and jammed in the works?