School Easter holidays

The Easter holidays has given Ava more time to get used to the frame. The days are definitely becoming easier (as are the nights - we've had quite a few where she has slept through). We've tried to keep things as normal as possible for her so the school holidays has involved having friends over, going to the cinema, zoo and to the seaside. There is definitely more planning involved when you have a child in a frame, but a lot of activities are still possible.

We try to avoid anything which reminds Ava of what she can't do - going to the park where she would usually ride her scooter or visit the playground, the swimming pool or to soft play.

We have been to a few parties too, and although Ava can't join in with the usual sports, dancing and games she has still enjoyed being there. She can still eat birthday cake and sweets!

Ava has also spent the holidays decorating her zimmerframe with stickers and ribbon. She was keen for it to not resemble her great grandma's, so it now looks like it belongs to a 6 year old girl.

I have applied for a Blue Badge, which hopefully our local authority will grant. This will be really important as one of the most difficult things when going out is parking and getting Ava from the car to wherever we're going. It's particularly hard when I have a toddler with me too. If your child will have to undergo lengthening then I would suggest you apply for this as early as possible (if you can, I'd recommend before they go into hospital). I applied when Ava was in hospital and am still waiting 6 weeks later.

In terms of the lengthening it's becoming more uncomfortable now, but Ava is being really brave. We have now opened the bones by 3cm, and have another 1cm to go on this prescription. On Wednesday the consultant will decide how much further he wants to go - another 1 or 2 cm. This will depend upon Wednesday's x-rays, which I'll be posting on the blog. Fingers crossed for good news!