Grace for Rett » Grace's Life with Rett Syndrome

Syringes & Shoes

Steven went to his first solo Grace appointment. This one was a bit silly because she was prescribed shoes even though she’s never even acknowledged that she owns feet. So she got fitted for these custom-made pink leather boots which probably cost £200. She’ll wear them in her standing frame.

Today, we picked up yet another new prescription and, of course, this one is also three times a day. In total, she gets 10 syringes full of yuck each day. And as my friend Catriona told me before I had the pleasure of finding out for myself: the government likes to provide just about every service to our girls except extra syringes when the old ones get the numbers worn off. I have to draw them on with a Sharpie every-other-day because the pharmacists just can’t seem to understand that before a milk-jug sized bottle of Ranitidine runs out, the numbers wash off!

“Ooooh. But we don’t give extra ones.” They say, baffled.

No, you don’t…but you’ll give a pair of £200 shoes to a kid who doesn’t walk.

April Merrick - October 14, 2010 - 9:18 pm

I so know where you are coming from! Our youngest boy has a metabolic disorder called PKU. It severely restricts his diet. In order for us to manage his diet, we have to buy specially formulated foods that remove all but traces of protein. It is very expensive food that the government, or even insurances, don’t cover. Go figure!

Catriona - October 15, 2010 - 8:00 pm

I’ve given up trying to explain the need for more than one syringe per bottle of medicine. It finally occurred to me that I could find my own supplier. So now I order them from http://www.babyreflux.co.uk – it makes me feel smugly reassured to know that I have a box of 100 syringes stashed away and I don’t need to plead with the pharmacist ever again. Ha. (I don’t know why it took so long to occur to me that I could bypass the NHS on this – am just conditioned to think that’s where I have to go.)

Diane - October 16, 2010 - 2:44 am

I find this most unbelievable and almost senseless it it’s stupidity..this happens to, in Australia.. but if you have a drug habit you can go and get a bag of syringes free..

Steven Halford - October 18, 2010 - 11:39 pm

Hi April. My nephew has PKU. He is now 13 and doing great. His food tastes gross but he doesn’t know any different 🙂

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