I'll start with our fabulous half-term holiday to Great Yarmouth. As a family, we've found that Haven holidays are the perfect place for us to enjoy a little week away at the sea-side as they're not only fully wheelchair accessible, but they also allow doggies! Our caravan was ideal, completely clean and providing all things necessary for a short break. It was just minutes walk from the beach - much to Lexi's delight! - and had direct access to the town which was, again, fully wheelchair accessible.
Lexi on the beach in Great Yarmouth!
As Great Yarmouth is quite a way down, we took the decision to stop for a night on the way at a Best Western hotel in Cambridge. I strongly suggest these hotels to anyone either needing wheelchair access, or even just pet owners. It was in a great location - only a short/wheel walk from some of the town's main attractions! We knew that it was practically illegal to leave Cambridge without having a punt down the River Cam, and so of course it was a must. We found the place and, after being lifted out of my chair and carried down the steps onto the quay, we boarded the punt. It was pretty difficult to get comfortable at first, but once I did, we were shown all of the famous sights and given background information on some of the colleges that are located just by the river.
Made it on to the punt!
Lexi!!
We also had a look around the rest of Cambridge, but I think I was most impressed by the stone steps that transformed into a platform lift before our very eyes - I've never seen anything like it! Sometimes, I do agree that things that are needed to make places wheelchair accessible can be quite unsightly, and just not look right within the surroundings. In my opinion, these Harry Potter-style steps solve all of those problems...
The rest of our holiday was brilliant, including a trip to the Halloween circus and a boat ride along the Norfolk Broads - it definitely confirmed our thoughts that Haven parks are the best place for us.
This is the life!
Our bonfire night didn't turn out quite as we'd planned as I decided that it would be a good idea to have an out-of-the-blue chest infection that very morning. Usually we are given lots of signs, warning us that some sort of chesty thing is on the way, but this time there was nothing. I often have a few little secretions on my chest in the morning that are easily removed with the help of my machines, but on this occasion, they would not budge! They started to gradually block my airway, meaning that my oxygen levels were dropping below 92%. I usually sit at around 99-100% and so this is a clue for us that something isn't quite right. My breathing began to get extremely shallow, I started to sweat, and my chest became very painful. Because we weren't really making any progress, we thought that we would give the 'out of hours' team a ring. After a short while of my Mum on the phone trying to find the right person to speak to, we eventually discovered that the 'out of hours' team don't actually come on duty until 9 o'clock! Once we recovered from this outrageously shocking news, it was suggested that we call the Children's Intensive Care Unit to see if they could give us any advice. They were great as usual, so caring and understanding, and helped us to get through the day without having to be admitted to hospital. This meant that we could all still enjoy my Dad's fabulous firework display, even if I did watch through my bedroom window to avoid the smoke!
Despite feeling much better by the next day, the Doctor suggested that we still popped in to double check that everything was okay as we had never previously experienced a chest infection so sudden. They were incredibly thorough, taking bloods, x-rays etc. not leaving any stone unturned. It was concluded that there was in fact a chest infection at the base of my lungs, and that the pain was caused by a bit of pleurisy.
Looking back, my Mum does feel that it would have been a wiser move to call the ambulance straight away, as of course, they don't actually have to cart you away with blue flashing lights if it's not necessary - they can just give you a hand at home.
For the past year or so, I haven't really had any real friends at school, but recently, I think that situation might be improving. We've had lots of meetings about various things, but our main goal has been to significantly increase my independence around school. It's going to be a long process, but it will surely help with my social situation not having an adult glued to me 24/7.
To round off November I had a very special stay at the Donna Louise Children's Hospice in Trentham. I was booked in with the other girls from the Youth Club, and had planned a weekend of pampering, DVDs, chocolate and plenty of other girlie things. I stayed on my own for the first night, and then my Mum and Candice arrived later the following day. A lot of people are worried by the word 'hospice' and think it must be a place filled with tubes and machine and other scary things, but really, it's quite the opposite! It's an amazing place where not only I can have a rest, but also my Mum can actually have some time either for herself or to spend with my sister knowing that I am in safe hands. I was aware that there was going to be some sort of surprise taking place, but never could have guessed what was to come. After the Christmas Fayre and a Chinese takeaway, were all told to stay in the dining room and await our visitor. I have never been so shocked in all my life!
I may have mentioned Ollie Marland one or two times before, but for those who don't know, he's an up and coming singer from Stoke who has now moved to London and is in the process of becoming a huge star. He arrived at the hospice alongside his Mum and Dad, had such a natural conversation with all there, and then had photos with everyone individually. I first met Ollie just over two years ago and since then he has always been so genuinely lovely. Just to top it all off, he then went through to the hospice's teenage lounge and sang a few songs for us all! It honestly was an evening I'll never forget - I'm so grateful to Ollie for taking time out of his extremely busy schedule to come and see us, and also a huge thank you to everyone involved that made it possible (especially Mel!).
Festive Ollie Marland photo!xo
"Ollie Ollie Ollie!"
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Video of Ollie's visit: Part 1 - https://www.youtube.com/watch?v=JP8Bhbwrbkc
Back in the summer, I'm pretty sure that I spoke about going for my orthotics appointment to be cast for my new foot-splints. This is a relatively simple process involving making a sort of plaster cast around my leg, and then cutting it open at the front. These are then sent away to be made into proper, plastic splints. On arriving at my fitting appointment earlier on in December, I took one look at my new splints and knew immediately that something was wrong. They didn't even look like my feet! As I guessed they were nowhere near to fitting, and so they were left with no choice but to re-cast, meaning that another trip to orthotics is now on the cards for the new year. As if I don't miss enough school as it is!
As soon as my orthotics appointment was over, it was time to get ready for the panto! We were lucky enough to be given some tickets, again by the Donna Louise Children's Hospice, for the Regent Theatre's Dick Whittington, and so, as a family, we went along for a festive treat. I've always loved the Regent pantomime, and this year certainly did not disappoint.
A couple of weeks later we were invited, again by the DLC Hospice, to attend a meet and greet with the cast from the panto, including Jonathan Wilkes, Louise Dearman, and Christian Patterson. I still can't believe how they'd given their heart and soul to two performances already that day, jumped straight into a taxi (in full costume and makeup), spent time at the hospice chatting to each person individually, and then went directly back to the theatre for a third performance! They were all so genuinely lovely and interested, and I also feel very privileged to have been able to see Louise (aka Alice) sing 'Let It Go' so amazingly live in such an intimate setting.
"Oh no he didn't!"
With school having finished last Friday, what better way to celebrate the beginning of the holidays than to go to the Union J CD signing at Morrison's in Festival Park! Having got up at 6:30am - in the holidays! - we headed to Stoke as early as possible, fully prepared to stand outside in the freezing cold for 7 hours solid. We went into the entrance just to check that we were in the right place, and were immediately greeted by Paul the Duty Manager. I am eternally grateful to him and his colleague Lorraine for letting Candice and I stand inside to wait for Union J - they looked after us so well throughout the day, and I can't thank them enough for everything that they did.
After a long, but extremely worth-while wait, Union J arrived and, seeing as though we were now at the front of the queue, they saw us first. We were instantly recognised, and honestly lost count of the amount of hugs we were given! A group photo was taken by the press, and then I had selfies - oh yes, selfies - with each of them on my phone! They were continuously giving Candice more and more hugs, and having a really natural chat with her. My lip has this terrible habit of going completely numb whenever we meet someone like this, making conversation and smiling slightly tricky, but I don't think anyone noticed...
Selfie time!
We never expected anything as long as the amount of time that we had with them, and still can't get over how amazing the whole experience was. The entire team from Morrison's and those supporting Union J were fantastic, making the day perfect in every way from start to finish.
A long day, but DEFINITELY worth the wait!
We're now on the real countdown to Christmas, but I do have one more thing to tick off my to-do list before we get there. My coccyx (tailbone) has been unbelievably painful over the past few years, but thanks to my special mattress and these particular anaesthetic and steroid injections for pain relief, it has been manageable. Presumably due to the injection having warn off, it has recently become more excruciating than ever before, and nothing seems to be helping. Luckily it only hurts overnight in bed, and so during the day, whilst in my chair, I am pain free. I have been booked in for my injection on Christmas Eve, with a view to being in and out in as little time as possible. If all goes to plan, I should be all done and home by mid-afternoon, all ready for the following day!I really do hope that everyone has a fabulous Christmas, and fingers crossed I'll be able to post again sometime in the New Year.
Write soon,
Tilly,xox
