It's been a few weeks since I blogged and that's mainly because 'The summer holidays' have happened and we've all been busy.
For the children, they've had various childcare arrangements which didn't always go down well with them as I think they feel pushed from pillar to post. Usually childcare would be covered by the two of us- I worked when Andy was at home and Andy worked when I was at home- so this year it's been hard having to find appropriate cover for a 3, 10 & 13 yr old and try to give the grandparents a break too. I got it covered with help from the school and so the girls went to an extended school, a holiday club and the camp that is run at the TRAC adventure centre (link on the blog).
Lauren also had a week away with a charity called CHICKS in Cornwall, it was her first holiday away from home with no-one that she knows, so she was nervous but it manifested itself by having a go at me for all the different childcare arrangements I'd had to organise. We eventually got this sorted out and Lauren went off on the Monday from Exeter Moto services and I didn't hear from her til I picked her up on Friday from Tiverton parkway- major traffic that meant I was 2 hours late and spent 7 hours travelling there and back!!
She had a really good time there and wanted to stay some more, which was very pleasing.
A friend who turned 70 this year decided to celebrate by doing a 70k bike ride through Somerset to raise funds for Andy. As yet we don't know what we will need to put all the funds raised towards but it would be something like the house adaptation or an electric wheelchair that allows him to move himself where and when he wants too, these things are not cheap in any way so these fundraisers are much appreciated.
We all went to the rugby to see Gloucester play Munster at Kingsholm. It was fab getting Andy out and about and I always admire his bravery at deciding to go as I'm sure it would be easier for him emotionally to stay away from crowds but he does it and he makes me so proud. It was good to see Gloucester win and as both Andy and I have only ever been to rugby and football matches where our team wins i suggested we should tell them we are their lucky mascots and need free tickets to home games to ensure they win, he didn't agree. Mores the pity!!
This last week was spent in London with my cousin. We took the train from home to London on the Sunday and was met at Paddington by my cousin, we dumped our stuff at hers and went up to Notting hill to join in with the carnival. Man, that was an experience! Our group consisted of 4 children and 3 adults and trying to get through the crowds was crazy but we stayed together and made it back to my cousins house by about 8pm- long day!!
It was an action packed few days and it was good to take time out from home. It was especially nice to be able to focus on other things and to have adult conversation too!
But as always it was good to come back and see Andy and regale him with our stories and pictures and give him our gifts too, we then also had a little family gathering for my dad's birthday. We all had drinks and chocolate cake, Andy included. He ate the cake with no problems which is always a bonus as he shouldn't be able to eat anything!!
It has to be said I'm looking forward to school resuming which is on Tuesday for Katie, Wednesday for Nathan (Playgroup) and Thursday for Lauren and then we will find our routine again.
All in all the summer seems to have been kind to us, but now we get back to 'normal'. In the next few weeks Andy and I will be applying for Katie's senior school place and Nathan's infant school place- Wow!!
Andy Blagden is a young man, married to Charlotte and has 3 children; Lauren, Katie and Nathan. (The children were 12, 9 & 2.5 years old at the time of diagnosis).
Andy was diagnosed with a tumour in his spinal cord in June 2013. The tumour was at spinal level Cervical 3 going down to Thoracic 2 (C3-T2). This is incredibly high up the neck and the only option was to operate. This in itself was not without risk but after a 15-16 hour operation the tumour had been removed. The outlook was good. Then Andy became ill....
Early September Andy contracted pneumonia and then sepsis, Andy's kidneys then failed and he was put on constant dialysis for a month and required a blood transfusion during this time.
Andy came through all this but he now lives with the consequences; paralysed from the shoulders down and unable to breathe without ventilatory support, this is his ongoing story of rehabilitation with the goal of getting back home to his family and his future.
Friday, 1 August 2014
On Friday 18th July we were thrown a huge curveball- a place at Stoke Mandeville spinal injury unit is available, do you want it?
Wow about..... Time, yes we do want it!
So we get on with preparing ourselves for Andy to move there on the 4th August. No simple task when you have to re-organise work, 3 children's child are arrangements, my sleeping arrangements, Andy's clothing and stuff accrued etc etc.....
This week I received the news that the bed is currently not available and they can't give me a date as to when it might be available. Andy is top of their list though so will get the next bed available. Devastated is probably an understatement!
I thought I'd got off the emotional roller coaster but apparently not- it was a mere break to catch my breath!
Still we hang on in there, keep praying and trusting God for this whole situation- easier said than done!
Hopefully a post in the near future will contain the excitement of having moved!
On the 19th July my sister got married to her husband Will. They had the event at the adventure centre farm my parents are managers of in Newent.
When we were in GRH we had tried to see if Andy could come out to the farm but they had said 'no way' ( obviously a lot nicer than that though !!) so there was a prospect Andy wouldn't make it to the wedding but with moving out of an acute unit Andy has had more chances to get out and about so that immediately boosted his chances. One of my concerns once moved to the Dean was that they wouldn't feel confident going out with Andy as he would be so new to them and it's not simply a case of just getting in the car and going but they were keen to get him there too so that is what we did.
Andy has had a lot to of with the farm in terms of working out there to help with the building of the site etc and it's where he runs Big man Little man with his friend, Hendrik. I was privately concerned that visiting the farm would be an emotionally painful experience for him and I suspect that it was, not only seeing family that he hasn't seen since before the operation but also seeing everything he loves about TRAC and knowing he can't do any of it at the moment. There's also the thoughts running through his head about what he looks like to others and being 'different' to everyone else. But, he is such a strong guy and he managed it so well and he enjoyed being there despite the circumstances
I organised a taxi to take us and the firm that we used were really good, the vehicle design was one of the best I've seen- I keep scoping out adapted vehicles thinking about what we need and want- and so we set off with Andy, a staff member, and all the kit plus Nathan and me!
The wedding was a really well organised day, organised by my sister and brother-in-law themselves and as a family we enjoyed ourselves immensely. Sam, my sister, made a speech and mentioned about marriage being for life and through good and bad times, touching upon our situation, which as I sensed it coming I started to feel the tears coming and some friends all turned around and checked I was ok!! Andy wasn't there at that point, he had gone back to The Dean by then.
It was lovely to catch up with friends from way back and with family we don't see so often too.
Andy was absolutely shattered by 3 hours being there, so the taxi returned for him and I think he slept for quite a few hours after that! Andy's fatigue is one of the things I struggle with a lot because it's restrictive to all of us. His fatigue is not just sleepy tired but his muscles become unable to support him and his breathing can then become affected. SCI (spinal cord injury) isn't just about the spine not working it affects everything because the messages from the brain go through the spine and as in Andy's case the spine is affected high up so everything is affected. It rained horrendously during the day and as we moved from one place to another Andy got a bit wet as did the rest of us, we though were able to brush it off, sotospeak but Andy got shivery and needed his winter blanket covering him to warm up again.
Despite everything though we were a family at a family wedding and I appreciated and enjoyed every bit of the time I had with him there!!