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Military Operation! PDF Print E-mail
Written by Administrator   
Sunday, 08 March 2009 00:00

Well it's been over a week since I updated the blog which I feel a bit guilty about but it's been a hectic week (just for a change!).

We had another hospital visit last Sunday but for Grace not Harry. She had an accident and fell face down onto a stone floor, teeth through lip etc etc. Lots of tears but better after cuddles and kisses. She started to be sick, however, later in the day and NHS Direct told us to take her to A & E to be checked for concussion.......4 hours later we were back home and she was fine. Kids are a constant worry bless them.

The rest of the week has been busy with every day things and now we are suddenly at Sunday night with only 3 full days to go before Harry's MRI. We got a letter the other day outlining where to go, at what time and how to "fast" Harry. He will not be happy about not being able to eat his full weetabix and 8 oz bottle!!!! It feels like planning a military operation - Grace is being packed off the night before to stay at her "boyfriends" house much to her delight and we will have to set off at 7am to negotiate traffic into Leeds and attempt to get parked at the LGI (which is notoriously bad for parking for those of you who don't know). Grace is getting picked up from school by Harry's Godmum so we are having a practise run at that on Wednesday - see what I mean about military operation yet lol?

Anyway, think we have crossed the "Ts" and dotted the "Is", well hopefully!! I am sure it will all be fine on the day, I just want it over and done with now so we can get some kind of line drawn under it and move on with his treatment.

Michelle x

 
Getting Organised PDF Print E-mail
Written by Administrator   
Friday, 27 February 2009 00:00

Hi!

We have now got all of Harry's appointments reorganised to fit around the MRI scan. The specialist health visitor is now coming on the 18th March and Harry's Team Assessment at St Georges is now on the 26th March. Looks like March is going to be pretty busy for us now but at last we feel better that we know what is happening and when.

More good news to report - Scope have put a link on their blog for us - take a look: http://www.timetogetequal.org.uk/blogs/harryhemi/

and HemiHelp have also been in touch today to say that they like the website and have also asked us to write a piece for their next members magazine which is really good news.

So all in all a positive couple of days to take us to the weekend!

As regards Harry himself, he is his usual cheery happy go lucky self bless him x

 
Everything All at Once PDF Print E-mail
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

 
A Post From Daddy! PDF Print E-mail
Written by Administrator   
Tuesday, 24 February 2009 00:00

Hello Everyone,

Instead of being in the background and letting Michelle write all the blogs while I concentrate on the Forum and actual design of the website, I thought I'd best come and say hi.

First and foremost, thank you.  Thank you for your kind words, support and constant offer of help, it does not go unnoticed and we are truly touched.

It's really strange you know, Harry is only 10 months and I can already see the determination in his eyes.  The determination not to be beat down with this, the sheer determination to be a tormenting brother to his big sister Grace (I might say this is going to be his primary focus in life!) and the massive determination to keep Mummy and Daddy smiling.  He is such a bright boy, eg: we noticed the other day that if we click our fingers at him he will clench his fists open and closed and make the clicking noise with his tongue followed by the cheesiest grin and yesterday we actually heard him say ta! several times while reaching for a book that Grace had (I won't tell you what noises he made when he didn't get the book!)

I still think, "whats going to happen, what will he be doing in 20 years, will he ever drive a car etc" but I have always thought this since he was diagnosed, I think it's something that will never leave my mind until it happens.  All I do know is that a 10 month old boy is being stronger than me!  I have already been told he will never play professional football so that was my main plan down the drain (Leeds United!!) but no-one has said he will never hold a microphone.....I feel Robbie Williams getting warm with the sense of the competition!!!!!
This little boy makes us both so proud of him and I am also proud he has a big sister like Grace because she just adores him.

I am going to be contacting media over the next week (Radio, magazines, possibly local tv) just to try and get a plug for our site.  I would really like to get our forum the number one port of call for Cerebral Palsy and Hemiplegia.  Any help, ideas that any of you may have, please post on the Forums for me.  Once we get to the 100 mark I will be introducing a chat room on to the site so you can all discuss things with each other instantly.  Ideally I would like the forum to have 200+ members so we start getting invites to advertise on other organisations websites, but, one step at a time I guess!

Anyway, I am going to sign off now, again thank you all and please keep checking back on the forums and blog.

All the best to you all

Paul xxxxxx

 
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