Sunday, 23 March 2014

from Ghent to Aix

Over the last couple of weeks, we have noticed N having brief periods of balancing independently. Independently. Without leaning against anything or holding on to anything or any physical support at all. And yesterday, she walked out of L's bedroom to her walker, about five steps, only holding on to one of my hands, rather than two.

We don't have another scheduled appointment with our Paediatric Consultant until July. However, he is coming out to see us with our Community Nurse next week, to 'sign off' the Document Of Wishes and I am going to grill him about it then.

My first thought is to wonder whether it's something to do with the better range of food she is having via the Blended Diet we are now following. I know there's not going to be any miracle cure and Cerebellular Ataxia doesn't just go away. But there is a part of me that is hoping for a miracle.

In other news, both the Fortnight Of Bedtime Screaming (tm) and The Six Weeks Of No Eating (tm) seem to have passed. Yesterday for lunch she ate half a portion of baked beans and half a slice of toast - the rest I put down the tube - and for tea she asked for seconds of soup and bread. I was almost crying with relief.

I have dug out my yoghurt maker and have a big jug of yoghurt in the fridge that I am using to add to blends if extra liquid is needed. The Vitamix really has revolutionised the way we feed her and it seems to be paying off. I had a horrible moment yesterday when smoke came out of the bottom of it and it stopped working; but after half an hour I tried it again and everything seemed fine. 

Today is cold, but sunny; I've got a list of stuff I want to achieve outside, including washing the camper for sale, making a duckling pen and getting B to barrow a metric ton of compost from one side of the garden to the other whilst I watch and make encouraging noises.

For today, that is all.


  1. yay for positive steps :)

  2. nice to have something that is not totally negative. Well done you all. xx

  3. She must have such a sense of achievement, as well as you. Something good happening gives a whole new outlook on life, doesn't it?