Tuesday, 3 March 2015

little mermaids

We have a day off today. No appointments, no phone calls to make, nothing. Lots of paperwork and housekeeping to catch up on and the animals to do, obviously; but nowhere to be, no-one to make coffee for when they come to the house to see us or N, nothing.

It feels a bit odd.

We are so used to going like the clappers to fit everything in that when we have time to catch a breath it feels almost unreal, like a dream. B and I are both sitting on the sofa listening to Lauren Lavern on Radio 6. If there was a roast dinner on, it would be like Sunday. Oh. But wait! Because we have the time, we DO have a roast dinner on!

We have taken a bit of a grip on the catering because of a bad patch a few weeks ago where we were both too tired to cook. We have meal plans, a freezer full of batch cooking and I have embraced my innate middle-classness and am doing a fortnightly Waitrose delivery online for the basiscs. Today's meal plan involves two chickens in the slow cooker and roasted veg in the oven later. Tomorrow it will be chicken stir fry. Then chicken and vegetable soup in the slow cooker.

All these home-cooked meals get blended up in the blender with extra liquid and fed to N through her button. Since she has been having a lot of 'real' food down the tube instead of being fed solely on the proprietary high calorie 'milk feed' supplied by the NHS, her general heath and wellbeing has improved no end. When we started feeding her like this, it was unusual and the dieticians and nurses didn't really have enough information about it to be okay with it. A lot of families we know have had to fight really hard with their professionals to get them on side with it. If children go in to hospital, they are often not allowed to be fed like this, but have to swap to the 'milk'. However, we have been very lucky and had the tentative support of our professionals right from the start. N is putting on weight, is generally healthy, is *growing*! and it seems like a success. When we are out and about or she is at school, she gets a 'milk feed'. And when we are at home, she gets what the rest of us are eating, squizzed up. We put a plate of food in front of her as we do with L, she takes a few mouthfuls, mushes them round her mouth and either swallows or spits them out. And then she gets the rest of it by tube.

In other news, the casts have come off. They have done all they can with them to get her feet in a better position. Some mornings we can get her orthopaedic Challico boots on her - to hold her foot in a good stretch - and some mornings we can't because it is too painful. She can't stand without the boots. We are going back to physio and to orthotics to talk about AFO splints and possibly an operation to release the tendons along the inside of the foot. She should be in the boots and on her feet for at least ten minutes twice a day to give her the stretch. The additional plus of the casts being off means that she can go in the bath rather than having to shower with clingfilm wrapped round her feet. She has been asking for a bath every single night and doing lots of spashing. Apparently she and I are going to go swimming dressed as mermaids one day soon. I am told.

Her signing is coming along apace. The PIMS Team have sorted out some software called ProLoQuo for her iPad which allows her to construct sentences and vocalise. We can put in pictures of people and places and activities that are specific to her and they become part of the software. It's very powerful and helpful to her and she is fascinated by it. The only (typical) glitch is that her iPad speakers are on the blink and I am spending some of my time today seeing if I can find charity funding for another one.

We are plodding along. We are going to court tomorrow to face B's parents over the amount of time they want to spend with the children versus the actual amount of physical time we have to deal with them in our lives in any way. They have not accepted the offer we have had on the table for the last two years and are pushing for more. We are stressed and angry and B is devastated by the whole debacle.

We planted seeds at the weekend. There are chicks cheeping in the incubator. I have been asked to contribute information about Barnevelders to a smallholding magazine. I am going to dress up as a mermaid with my funny and beautiful daughter. We are going on holiday to Wales in the summer. Make A Wish are sending us to Disneyland. L can spell 'February' and understands what a Noble Gas is. B has finally trimmed his nasal hair. It is sunny outside. Last Wednesday, Ma unexpectedly brought us a cottage pie and a lasagne and stayed to hear L read. L says that all we need as a family is love. Our friends love us. We love our friends.

For today that is all.

1 comment:

  1. Just been sent this website for mermaid fins, so I'm pinning it here so I don't lose it!