Trip To Southampton
Our trip this time was to see the tremor surgeon and I did message the team to see if it was worth attending as the next MRI is not far away. We were told that it was important so off we trotted . As many of you know I am not used to driving too far any more , but I pleasantly surprised my self by getting there ok. The only problem came as we reached the hospital, they are having their car park redone and part of it was closed, it is not an exaggeration to say that the Que was a mile long.
I duly followed the signs for the blue badge spaces only to get to the front of the hospital to be told that you could only drop off there. I politely asked where we should park and was told that I had to get back in the Que, this was completely contrary to their signs and the Que had now doubled in size. Realising that we simply didn't have time to reque we parked on the road and set off with the wheelchair . I cant thank Karen and Bonnie enough for meeting us , Bonnie sat on Tyler's lap and we just about reached the clinic on time. Ironically it was of course running 45 mins late.
Once we finally got in to see the surgeon he said that he had taken things as far as he could and that everything else had to be managed ny other teams !!! 5 mins at most. I did ask one question though that may be of use, there is some research being undertaken in to helping people walk who are in Tyler's position. Its not on the NHS but is an area that we have to look into . Boston have queries some of the MRI imaging so we basically are on hold until after the next MRI.
I was pleased to get home at a decent time though, as we had a special night out planned.
A Date with Martin Kemp
As many of you know Fearne is a great supporter of Tyler, she is also friends with Martin Kemp. Martin himself knows what it is like to live with a brain tumour and has kindly written to Tyler in the past to support him. When we found out he was coming to Bognor he organised tickets for us and set aside some time pre show to meet Tyler. This was incredibly kind of him at such a busy time but also very encouraging for Tyler to meet someone who has come through the other side and has a fantastic career. A lovely kind , caring and down to earth man, he said that Tyler had the most amazing fan in Fearne who always talks about him.
During the show Martin refer ed to Tyler as a young man going through a brain tumour battle and he received the most amazing round of applause. Thank you Martin for fitting us in to your busy schedule and for caring .
I have been thinking about the fact that my hubby and I are coming up to our 10th wedding anniversary and what we could do to celebrate. When I mentioned this to him , he said that I have never mentioned him in one of my blogs. I thought that this couldn't possibly be true, but it would appear that it is . I believe the reason behind this is that I think of us as one unit , Craig is and always has been my rock ,but maybe I don't always express that very well. So hubby of mine I love you forever and a day .
A surprising phone call from Spirit FM
I was busy working on some fundriaising when I got a call from Spirit FM. The lovely India started talking about the local hero awards and I thought that she was telling me that Tyler had won an award, which I thought was fantastic. It was only when she carried on talking that I realised that she meant I had won an award !!!! I have never won anything in my life, my lovely sister and amazing friend Lisa had nominated me for parent of the year and I won!!!!
I am absolutely gobsmacked and delighted that they would think of me and do this . It will be the perfect way to celebrate our 10th wedding anniversary, now how much weight can I loose, I need a new dress and hair do ....................
But thank you guys for giving me a boost that I didn't even realise that I needed .
Fundraising
The fund raising is slowly gathering pace and I will put more about that in my next blog, but there will be lots of things going on , so watch this space . A big thank you to the Apuldrum ladies who held a sponsored walk , I look forward to meeting you all. They are also holding a funday at Barnham Community Hall on Oct 28th so please do come and say hello.
We are working on a Halloween party to coincide with Tony's last 10 k race at the windmill in Barnham on 30th Oct.
I think it would be great to see Stuart and Stephen go head to head on apple bobbing or eating a cake off string. There s likely to be a fancy dress comp and other activities going on so do keep the date .
If you have any fund raising ideas please do get in touch with Stuart at Spirit or Stepehen at the Observer, or indeed myself
janice,ellis2@btinternet.com.
If you can hold a sponsored event, dress in green, quiz ,bake off,Halloween party,coffee morning etc, please do let us know , you can also make a donation via the link below.
Red Tape
Red tape is still causing us issues , everything was meant to be in place for Tyler to return to school part time in Sept and of course nothing is in place . I have tried and tried to get this organised but sometimes you just have to let the authorities do what they need to . It has been mentioned to me that my blogs can be negative so I am trying to think of ways to highlight these points without sounding negative , any ideas? Because sometimes I want to scream why on earth didn't you get drop kerbs in over the summer holidays or recruit a TA then!!!So please give me some feedback, do I tell it as it is or do I try to keep it positive.
Thank You
I would like to say a huge thank you to everyone who has supported us to date. I will get letters out as soon as I can but in the meantime please accept our heartflet thanks from here.
If you work for a local firm perhaps you could forward this blog onto your employer.
https://www.gofundme.com/Tylersaccomodation
https://janiceell.blogspot.co.uk/
http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080
No comments:
Post a Comment