Wordpress

Leaving you again, this time for Wordpress.

Not one comment in ages despite me leaving comments on other blogs.

Good bye!

Downs and Ups

Tuesday's brain scan was hard. Ashley took a while to recover from the General Anaesthetic and for a few days he was so tired. We tried to get him back to school and he stayed for half a day then a full day.

His resilience is great and his smiles soon come back. This makes it all the harder to put him through these things even though we know it is for his good. They need to watch his progress. They need to watch for things getting worse. But that doesn't stop us feeling guilty. They took six shots at getting a cannula in which left him looking bruised and sore. He had been due for further blood tests on Thursday but we cancelled them to give him time to heal.

This is one aspect of being the parent of a kid with a disability. "Elective" treatment is all well and good when you decide to have it done to you. But we have to make this decision for him. As his advocates we have to grit our teeth and say "yes" to him being manhandled, bruised, drugged, tested,. And yes, we do say "No" when the cumulative effect of their intrusion just gets too much.

There's a weird sense that you start to get of the "medical entity" which has so many faces. Although the individuals you deal with have their own characters and existence (families, careers etc), together they form a beast who would like to own your little one. You have to stand up and face this Thing and say NO! when the moment is right. We felt this more when he was tiny and we had Consultants and Registrars calling him in every week. Some hadn't even prepared for the interview - they seemed to thing that their assumed ownership of this poorly child would allow them to "wing it".......... I disagreed. One doctor probably still remembers the conversation we had when I told him precisely what I thought of him.

Work has been especially hard lately as we've fought to reduce stock levels, deal with high illness levels and new managers. Despite all this and my feeling exhausted and a bad shoulder injury not healing, despite all this we are coming out the other side.

On Sunday I supported a colleague in a disciplinary which was very traumatic. I came back feeling like I'd been wrung out. Not the best preparation for Tuesday's scan.

The back end of the week was interesting. I was told a Mystery Shopper had given me 100% which felt good and that my team had been nominated for a group prize for the reduction in stock.

Then yesterday Security called me in to show me cctv footage of a shoplifter new to the store. A distinctive looking woman she took whiskey and champagne and had bagged it, only paying for a loaf of bread. I said I'd keep an eye out for her. That afternoon I was tidying the whiskey section when a voice beside me asked for my opinion on two of the whiskey lines. Yup, it was her. I gave her a polite answer then went for security ... who weren't there. I looked for managers .... who weren't there. I thought I may as well challenge her myself at the door and when I got to the front I saw a manager. We challenged her together and got all the stock back before she ran off.

I was jubilant and then got on with the job.

Today I was summoned to the Celebration Lunch we have every 4 weeks. I knew about the Mystery Shopper and expected the usual £2 luncheon voucher. ... Nope. I got a "Gold" thank you card with a Diamond under the scratch-off panel. Puzzled I went on the company Intranet as instructed on the card and was really glad I did. Diamond level awards are one of the following:

- a paraglider flight

- a day at the races for two

- £50 off a day out at a Theme Park

- design your own perfume

- money off anything from lastminute.com who deal with short breaks, experiences, concerts, theatre etc

Not a bad end to the week eh?

p.s Jo got a Brownie Badge for Hostessing and Heather earned her first Bronze Merit at High School. So proud of my girlies.

an MRI at MRI

That's a Magnetic Resonance Image (brain scan) at Manchester Royal Infirmary. Ashley's due for one tomorrow.

We have two worries:

- first, to have the scan, he has to be motionless. You and I could probably do this but a 5 year old special needs kids has no chance. Up til now he has been given Chloral Hydrate but now he's bigger he has to go under a General Anaesthetic. There are dangers involved and although they've assured us that he will only go under for long enough for the scan, it still worries us. Last year I stopped breathing on the way out of theatre after a throat op. I'm sure he'll be okay but ........

- secondly although he needs the scan (seizures are more frequent and it's been a couple of years since the last one) we still wonder what they'll find. He has a ventriculomegaly (larger than normal fluid channels in the middle of his brain), and arachnoid cyst (bubble of fluid in the coating of his brain) and agenesis of the corpus callosum (the bridge between the two halves of his brain is poorly formed). So we know what they're looking for but it worries us to know any of these things could worsen. There's talk of a shunt to ease a possible build up of pressure from his brain fluid (he's started to have headaches).

Not much sleep tonight then...........