3.5cm achieved and x-rays

We had our hospital appointment today and the break in Ava's leg bones has now widened to 3.5cm. I have included an x-ray below which is a comparison between the current status vs. our x-ray from 2 weeks ago. The consultant is very happy with Ava's progress. We need to keep on with the knee exercises though to ensure Ava can straighten her leg, which is becoming harder.

Our current prescription finishes next Tuesday when we hope that the gap will have widened by 4cm. We then have a break from the actual lengthening/twisting until our next hospital appointment; which will be the week after.

It will now be during this appointment when the consultant will decide on whether we go for another 1 or 2 cm.

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!

2cm achieved and x-rays

It was our second follow up appointment with the consultant today and as you'll see from the x-rays below we have opened Ava's leg bones by 2cm. What you'll also notice from the x-rays is that new bone is beginning to form within the gaps. At the moment this is quite blurred on the images as it won't start to fully form until we have completed the lengthening.

We received Ava's new prescription during our appointment which will hopefully open the bones by a further 2cm (this will take another 20 days). So things are progressing as they should which is great news.

We have also been given some physio exercises for Ava's knee as it's common during lengthening for the knee to become very stiff, which can cause later problems. This is because it is not being used in the same way as Ava is not walking. I need to encourage her to straighten her leg as much as possible when sitting down and perform the exercises at least 3 times a day.

We are still monitoring Ava's foot. It hasn't turned inwards that much but is very swollen from the lengthening. From the discussions with the consultant today there will be additional future surgeries on Ava's foot, but there will come a point when we have to accept the position it's in.  This is because  with each surgery the foot loses some of its mobility, and Ava's foot is already extremely stiff (she has little ankle movement at all).

Some positive news is that the sleeping has improved and we're getting out and about more. Ava is a whizz on her zimmerframe in the house and she is much more used to being in the wheelchair outdoors (less self conscious and more used to people staring or asking her what's happened to her leg).