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.

Thursday, 20 March 2014

holidaying in france

This is a blatant big-up for my friends Rosie and Simon, who have a VERY child-friendly holiday gite on their smallholding in Normandy. Go and stay with them. They're fab!

This time last year we were getting ready for our Excursion To France. We used to travel in France regularly BC*; but since the arrival of the kids we have been too scared to branch out from Blighty.

Rosie and Simon own and run Eco-Gites de Lenault, on their smallholding in Normandy. They live there with their two almost-teenage sons and they have converted their barn in to a lovely holiday cottage. I met Rosie quite a few years ago now via the downsizer website - an online community of yoghurt-knitters like ourselves. We have become real-life friends on her visits to her family who live near us in the UK and we felt sufficiently confident in her to give Abroad a try again with the kids. The gite is set up for children and that was a big draw for us, particularly given all the extra kit that comes with a disabled child.

One of the other big draws for us was Rosie's willingness to provide home-cooked meals for families that stay with them. I loved the fact that we could have someone else cook for us but not have to take the children out in the car to do so; we took our motability car, with all the children's clobber and Nenna's wheelchair. We spent a lot of time sat on the little patio outside the gite, watching Leo race around like a maniac on the playground, with bikes, trikes, balls, a castle and a trampoline. The children were also able to go and help with the animals - because they don't get enough of that at home! - and because we were the only ones there, they really got to engage with what was going on.

So much child-stuff is supplied free of charge and Rosie, Simon and the boys were so friendly and keen to make sure we had the best holiday we could possibly have had. I was a bit worried that we would all feel obliged to be friendly, because they were next door; but it was very much on our terms. They clearly had their lives to get on with and I didn't feel they were looking over my shoulder in case I broke the crockery. Which I did, actually. And wasn't made to feel like an evil clutz!

eco-gites de lenaultAll the child-stuff is included in the price - cot, bedding, high-chair, stair-gates, the toys, games and books. The only thing not included was for the TV for the week; in the summer, lots of families choose not to have this and prefer to spend all their time outside. We were quite early in the season, so we paid the extra. However, because we got a 10% discount on the ferry booking by using the gite discount code, I felt that that made up for it! The other thing that I liked was that we could choose whether to pay for cleaning at the end of the rental, or to do it ourselves.

All in all it was an excellent choice for a first-time abroad trip with two young children. The accommodation is lovely and the setting is beautiful, with lots of rural countryside and market towns to explore. 

We will definitely be going back.

*Before Children

Tuesday, 18 March 2014

Day 97

Today we reached a strange, new land, that the inhabitants call The Bottom Of The Laundry Basket. It is flat here, despite the tunnelling we have had to do to reach it; and there is a strange, leaden smell that permeates the air. There are random items strewed around, too numerous to mention in their entirety; but the one thing they have in common is that the inhabitants have no record or their arrival.

So far I have found several large pieces of pancake, with tooth-bitten edges. There is no dating data available for them. There are various pieces of Lego of different sizes, including an early model of Hans Solo in Carbonite that I am told is held in great esteem by certain followers; four marbles; a toothbrush and a small curved piece of rusted metal that could be the shoe of a small pony or the heel of a boot, both of which have been saved by the locals for 'archaeology experiments'. There are also a large number of used tissues.

And a potato masher.

Tuesday, 4 March 2014

document of wishes

In addition to N being ill, over the last couple of weeks we have had a session with our Children's Community Nurse to start filling in the 'document of wishes'.

Families with life-limited children are encouraged to fill these out, rather like a birth-plan, in order to address difficult questions when you are not in an emergency situation. The document gets circulated around the people who need to know; and in addition it gets given to the ambulance service, so that if they get called to your child, they know what you want them to do.

In our case, we have ticked all the boxes for 'full resuscitation'; but in the future we will have to think about how we feel about situations where ventilation might be needed, whether when she is severely ill we want her at home on oral antibiotics or on an IV line in the hospital. That sort of thing.

There was also a box for 'funeral arrangements'.

It was quite grim. But having done it, I guess, we can now put it on the back burner and get on with enjoying life.

We have been planning our summer out and about, thinking about where we can take our brand new motability van (due-date, some time in June), with all the bells and whistles of a tail-lift and wheel-chair safety to take N around. And we have got our funding from the Family Fund for a Vitamix blender to blend 'ordinary' meals for N and feed them via her gastrostomy tube; B is currently online, comparing machine specifications.

This week we are at the children's hospice and I am sat in the conservatory, with a cup of tea, writing away, whilst L is with the Sibling Team watching a movie and N is out with her two carers, on the swings. It is incredibly peaceful here and I think I've got to the point where as soon as I walk through the door I switch off my conscious vigilance on N's behalf.

So, some negative things. And some positive ones.