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Written by Administrator   
Wednesday, 25 February 2009 00:00

Hi!

We had a phonecall yesterday from the LGI to say that Harry's MRI scan is on the 12th March - typical as that is the day he is supposed to be having his team assessment. As it happens, I would rather he have his scan first anyway so the team has his results before assessing him and deciding what course of action to take. So, Harry is all booked in for the 12th and we are waiting on the team getting back to us with a revised date but looks as though it may go into April now. The LGI are sending us a letter detailing everything we need to know prior to his scan. All we know at the moment is that we have to be there for 8am and Harry will be admitted to a special children's ward. From there they will take him down at some point in the morning - apparently they only scan 4 children in a morning. Once the scan is done and Harry has come round and they are satisfied he is ok we can go home at some point in the afternoon. Luckily we have some great friends who were on standby to have Grace the night before and after school that day - thanks so much Sheelin and Claire xx

We also had a phone call from our specialist health visitor yesterday. She called to introduce herself and confirm she is coming to see us at home on the 4th March. She told me that she is going to make us a "blue box" which contains information on our case and saves us having to repeat ourselves all the time when meeting new therapists etc - will tell you more as I learn more! I am going to speak to her on the 4th about this site and to see if she can suggest who we need to speak to to make parents aware of us at diagnosis stage.....

I was really shocked and upset at the news today that David Cameron's son, Ivan had sadly passed away. I didn't know that he had CP and I don't really know much about the epilepsy side of things yet. I am sure everyone feels a great deal of sympathy for the family at this very sad time.

Which, unfortunately brings me on to my next point. Paul's cousin, Neil Platt tragically passed away this morning. He had been suffering from Motor Neurone Disease for the last year. For those of you who don't know it is a progressive disease that basically affects the body but not the mind. Neil was a fighter and had campaigned relentlessly over the last 12 months to raise awareness etc on his condition. He recently appeared on Look North and Calendar. Anyone wishing to find out more on Motor Neurone Disease and Neil's brave and courageous efforts please take a look at www.plattitude.co.uk. We would like to send our deepest sympathy and much love to Neil's family especially to Louise and Oscar xx

 

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