Sunday, 19 July 2015


So here we are.

We went to Great Ormond Street again on Monday and saw three different professors, to discuss mitchondrial, metabolic and neuromuscular things. N had six lots of blood taken for different tests and an EMG, which basically involved sticking electrodes to her face and running an electric current through them. It apparently feels like pins and needles and although it was uncomfortable, she stood it like a trooper.

They think that whatever they do with her feet - splints (ongoing, uncomfortable), Botox (possible, temporary, unknown usefulness because no-one knows exactly what is causing the feet to turn), or surgery (not something we really want to consider but will if we have to) - she will no longer be walking by the age of twelve.

They have ruled out Marinesco-Sjorgen Syndrome, which gave the possibility of a normal life-span, because she does not have cataracts; so we are back to the 'life limited child with no actual prognosis' thing. For a brief moment there, we changed gear and started thinking that we might need to make provision for her after we are gone; but nope, that's not the case, as you were.

We have come home with two weeks supply of Co-enzyme Q10, and a very slight chance that a three month course might help, if the problem falls within certain parameters to do with metabolic things. Basically if she is unable to metabolise it from her diet, then sticking a load of it in to her system as a dietary supplement might help. But it's a slim chance. Three months should be long enough for us to see 'an improvement' if one is going to happen; it seems to be qualitative rather than a quantitative judgement.

We got home really late on Monday night - it's a five hour drive - and fell in to bed. And then on Tuesday I got up and started ditching chickens, on the grounds that I am not going to look back in five years and wish I had spent more time with my poultry.

Every time we have one of these rounds with the professionals, it brings everything home a little more and makes me feel bleak for a few days. I am trying to throw it off this time by rationalising my time so I have more to spend with the children; and by planning fun things for us to do. My garden is beautiful now - beautiful AND productive, with vegetables and fruit appearing. We have splashed out on a garden table and a parasol; and from tomorrow, this blog will be brought to you from the garden. The parasol is large enough to keep off the rain if necessary.

We are both sick with worry regarding the benefit cuts and NHS cuts the Tories are imposing. I have no idea how it's going to hit us yet; however, because we are self-employed, it is possible that if they put a minimum profit or turnover on to the criteria for Tax Credit eligibility, it might stuff us.

Barnardos are supposed to be putting a respite carer in for two nights a week to sleep in N's room; this was okayed in May; but so far they have been unable to recruit anyone suitable. As an alternative, we can have a Personal Health Budget; this would mean we had to find someone/some people and employ them ourselves as we do with N's supporters via the Direct Payment Scheme. It would have the advantage of being a bit more flexible; but the downside is that we'd have to manage it all ourselves. Currently our friends are still paying for someone to sleep in two nights a month via the Hundred Club that they have set up. We wouldn't be managing I don't think, if it wasn't for that. The carer who is doing it for us is wonderful; however, for personal reasons it is possible she may have to have a long career break, which will leave us without even that. It is very hard to find people for these caring roles - they are unsociable hours and the pay is rubbish.

On a positive note, the Family Fund have given us a holiday - we are spending a week in West Wales in a wheelchair accessible cottage next week. And in August, Make A Wish are sending us to Disneyland Paris. The children are already beside themselves. I am saving for a keg of gin to stick on the back of the wheelchair.

For today, that is all.

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