We were in sick kids last wed for Anna’s tri monthly lumbar puncture under general anaesthetic. She had methotrexate (chemotherapy ) injected into her spine and brain fluid. Anna had to fast beforehand (from midnight) and she was third on the list which meant it was nearly 11.30am before she went in. She was absolutely starving and feeling sick with the lack of food and drink. However, all went well, she drunk around 500ml apple juice and milk as soon as she came back from theatre, slept on the ward for an hour or so and then played with the clown doctors!
Since my last post, we’re all still loving Anna’s new snapdragon power chair.
We’ve been to the park, run across the grass, flown Nathan’s new kite, played hide and seek (this picture below is Anna hiding – not sure she’s quite got the idea…) and lots of other new experiences. Peoples’ response to her in it is different from how they responded to her in a manual chair. They talk to her now rather than me and they are admiring and interested rather than sympathetic. Her snappie continues to open up her world and let her be just a normal little girl, as much as is possible with SMA and leukaemia. Anna is getting more confident in using it – I’m even having to get her to slow down at times. And I’m getting quicker at dismantling/reassembling and getting it in and out of the car!
Anna still has at least one medical (or other) appointment every week and sometimes as many as 4. She has weekly hydrotherapy, regular physiotherapy and occupational therapist input, clinic once a fortnight for her intravenous chemotherapy (vin christin) and a visit from the outreach team to check Anna’s bloods once a fortnight. We go back to see the SMA experts at Newcastle early next month ( we go every 3 or 4 months).
There are also fairly regular meetings just now as we prepare for her to go to school, making sure both the school building and the curriculum are accessible. Building work in the school has been underway for some time to adapt the current disabled toilet and Anna has also has her first go in a hoist. She is growing so well and putting on weight that she is getting too heavy to lift all the time. Once she starts school, a hoist will be used to put her on the toilet and any other time she is moved out if her chair. I’ve also asked for one in the house as I’m struggling to lift her all the time. My knee is complaining!
We have to do daily exercises with Anna to maintain flexibility and prevent contracture (muscles tightening up) and put splints on to keep her ankles in the right position. She has gaiters (like thick straps) to keep her knees flat and straight and hand splints for overnight to keep her fingers from curling up.
Since her fractured femur earlier this year, investigations are underway to check her bone density. Her bones could be weaker through lack of muscle use and steroids so she may need treatment. She has been referred for a muscle density scan to try and get an idea of how weak they are. Once we get the results of that, we will discuss it again with the endocrine team.
Looking after Anna is certainly a full time job. We are so lucky to have such a big team of people helping and supporting Anna (and me). We are all doing everything we can to keep her as well as possible whilst also being able to do as much as any other 4 (nearly 5!) year old.