Anna is loving school and yesterday, for the first time ever, she travelled to school in her wheelchair in our new car.
Thank you Dragonmobility, for making such an amazing powerchair, thank you motability and Bristol Street Versa for the car, and getting it to us with all the complications along the way and thank you Mr Ryan Galloway, for your emergency mechanical expertise!
Another small but hugely significant step forward. X
Anna fractured her femur again last Friday.
I was away at my Pampered Chef conference when it happened but both granny and dad looked after Anna, with Auntie Clare taking charge of Nathan. It seems that her bones are so weak that even a bit of pressure can cause a fracture. At the recent meeting with the endocrinology team, ongoing treatment was discussed and it was suggested that we hold off unless she had another fracture. So, having now had another fracture, treatment looks likely to start at some point soon.
The whole week has been quite a juggling act as Nathan is on school holidays. As always, it’s been with help and support from a whole number of people. So huge thanks to everyone that has been involved in looking after Nathan. And of course thanks to everybody has helped me both in the hospital and at home, trying to make sure that somebody is with both Anna and Nathan when necessary. Both granny and auntie clare have spent quite a bit of time at the hospital this week, which has been a huge help.
It has been increasingly difficult moving and lifting Anna in the house and there has been an ongoing discussion about manual handling over the last couple of months, especially as she prepares to start school. It had been agreed that a hoist be put in place in the house as well as in school. Obviously that has become even more important as she has her leg in a full cast – hip to toe – so a number of people have been busy this week ensuring that the hoist will be in the house on Friday ready for our return home. It’s not been straightforward – there have been a few problems along the way – but once again people have gone to great lengths to make sure things work out for Anna. Thank you. We really appreciate it.
After Anna had her leg x rayed and put in a cast on Friday, she was admitted to the hospital (ward two was full so we came to ward four). Most children would have been sent home but it was felt important to monitor Anna, especially as after previous infections/fractions she has shown signs of poor liver function and associated concerns. This time there seemed to be no real problems. She did spike a temperature on Tuesday (it went over 38°C) but that seemed to resolve itself. Today, she has had her leg recast, with the knee slightly more bent and another x-ray.
Both Oncology and the surgical team have given the go-ahead to be discharged. I’ve had discussions with both the dietician and pharmacist. We are just waiting for medicines and I’m about to pack everything up in the car and head home. A hoist arrives at the house tomorrow and we’ll start practising. Hopefully it will make at least some things easier.