Week Two of The Summer Hols!

Week two of the summer holidays began with a trip to the Orthotics department at the hospital to have my foot splints re-cast. Ever since I was little I have worn hard, plastic splints on my wrists and feet to try and slow down the deviation that comes with my condition, and every year or so I go in and have them re-cast using Plaster of Paris. I used to clear the waiting room when I was younger with all my screaming, but it really doesn't hurt at all. It was just 'fear of the unknown' I guess. They aren't exactly the most comfortable things in the world, but as long as my feet stay 'shoe-shaped', I don't really mind (I'm rather fond of my shoes to say the least). They do rub sometimes, but they're nothing compared to the spinal braces that I wore up until I was about 8 years old, which encased me in even more hard plastic from my shoulder blades to my pelvis - now that was sore!

 

    



 My spinal brace and foot splints.

 

 Another part of my disability (SMA) is Scoliosis, where the spine curves and can eventually compromise things like the respiratory system, and so a brace is used to try, again, to slow it down. When you reach a certain point, it's time for spinal surgery. I have a scar from the top to bottom of my back from when I had rods placed either side of my spine in order to try and straighten it all out - it honestly transformed me. They had to be extended in surgery every year or so to make sure that my trunk could still grow, as I was only young and small when the procedure took place.

I know this looks quite scary, but minutes later I was sat up chatting and eating McDonald's!



In September 2013 I went down to theatre, one more time with feeling, to have my rods replaced and then fused to my spine. The two main operations (the first and the last) take about 8 hours, and so it can be a long day for my Mum and Dad - time flies for me under general anaesthetic! I had begun to lean to the left again over the last 12 months, the name 'Leaning Tower of Tilly' slowly making its return, and so my fabulous surgeon decided that it was time for me to become the Eifel Tower. I had some pins placed around my pelvis at a diagonal from the bottom of my rods - et voila! - if you were to look at my spinal x-rays now, the Eifel Tower you would see.

The past few days have been spent with some friends, and so it was lovely to see them and have a catch up. Lexi (our Golden Retriever) loves everyone she meets, and so having three relatively small children in the house, all desperate to play and cuddle her, is heridea of Heaven. She is beautiful though, and so gentle too. We went down the route of Dogs For The Disabled, but soon realised that it just wasn't for us, and so we found Princess Alexis (she allows us to call her Lexi) - she is perfect.

Our Princess Alexis.



Lexi absolutely adores Rudyard Lake, and so she comes along with us every time we go. We took our friends there, as Rudyard Sailability had a group down called PHAB (Physically Handicapped and Able Bodied) Camp, and we were going to help out. The people who volunteer on this Birmingham-based camp are all fabulous people, and are they're there for no other reason than to make sure that these young people had the best time possible. Our friends were completely and utterly astounded and inspired by their energy, enthusiasm, and commitment, with their young boy saying that when he grows up he wants to become a PHAB volunteer - that says it all in my opinion.

Every evening we'd come home to a delicious meal, lovingly prepared my Dad, who I must say is a most excellent chef. He is that brilliant in fact, that my sister once told Gordon Ramsey at the Pride of Britain Awards that our Dad was the best chef in the world - he agreed with her straight away of course, but then whispered something into my Dad's ear, and you can imagine what sort of thing it was. I don't know what we'd do with out him, as he's not only Head of Catering, but also Head of Maintenance, Head of Ironing, Head of Food Shopping, Head of Technology-Fixing.... the list goes on and on! He tends to look after things whilst my Mum is helping me with various things, and so along with my sister Candice, and Lexi of course, we all make a pretty good team!



Daddy's little girl.x

One last thing before I go, sort of a 'Tip of The Week' thing really, is that my new phone case arrived in the post a couple of days ago, and it is ideal for someone like me who has a tendency  to drop things. It comes with a detachable chain so that I can wear it instead of trying to balance it on my knee whilst driving which, let's face it, was never going to work.

New Phone Case!

 



I can't have it in a bag as, in an emergency or just in general, I wouldn't be able to reach it, dig it out etc. and so I thought I'd share it just incase it would be of any use (there are other styles available, but it wouldn't be complete for me without a little bit - okay a lot - of bling). It'll be especially handy over the coming week, as the festival season finally descends upon us! I'm sure you'll here all about them in my next blog...

Write soon,

Tilly,xox