2 days post op - the frame is on

The past 2 days have been incredibly hard. Although Ava has had several operations and hospital stays before, the impact of this operation has hit her (and subsequently all of us) hard. We were told that having a frame fitted has a huge psychological impact on a child, but I presumed this would happen later after discharge from hospital when Ava realised she wouldn't be able to do certain things she did before.

I know it's still early days and she just needs to get used to the frame on her leg - the weight of it, discomfort and what it restricts her from doing. At the moment she is very tearful and perhaps because of her age, she is very aware. She's made lots of comments such as 'Why are you doing this to me', 'I hate my stupid leg and foot', 'Why have I been born like this'. To date Ava has never said anything like this, even when she has been in hospital before. I suppose it was always inevitable, but it is very difficult to find the right words to respond that reassure her and make her feel positive.

Thankfully the wonders of new technology has been a godsend. The best distractions involve listening to One Direction or watching Jessie on the iPad.  Ava's been bought lots of iTunes vouchers from friends which I'm sure will all be spent by the time we leave hospital.

The physio came today to show Ava how to use her walking zimmerframe. This will be used to keep her more mobile in the home. She was surprisingly good at it which is great, as the more mobile she is the better. The wheelchair will be used when we go out.

I know as the days go on she'll hopefully get more used to everything, and we'll find our own ways of doing daily things like dressing, washing and going to the toilet.

On Monday we will be shown how to clean the pin sites on her leg, which is how the frame is attached from the outside to inside of her leg. These will have to be cleaned once a week for the 9 months to try and minimise the risk of infection as she has in effect 'open wounds' on her leg. She'll be discharged with a large supply of antibiotics so I can prescribe them to her at the onset of an infection. The hospital will teach us what to look out for, but this generally involves a high temperature and a highly inflamed pin site.

On Wednesday the lengthening will begin. We will be shown how to turn the struts on the frame to pull the bones apart so new bone can grow. More to follow on this next week.