Updates on Charlie, adaptions, fundraising and expenditures.
Updates on Charlie, adaptions, fundraising and expenditures.
December 2015 saw the start of some works, Oyster financial planning, Brendon from Home Project Solutions, Aaron Bennett Plastering services, Debbie House's Home Decorating Services and Life is Paint, came together to transform our living room into Charlie's new bedroom. Being large enough to support all the equipment Charlie may need and situated next to the bathroom to provide a one hoist track system to run directly through both rooms, it all made perfect sense.
We are continuing to fund raise and trying to secure loans to enable the second part of the journey, where we will see the existing conservatory converted into a new living room complete with solid roof, a accessible wet room for Charlie, level wheelchair access to the home, doors widened, remote lighting and automatic door openers fitted.
We are so excited at the prospect of a accessible home, providing independence for Charlie and a place he can feel safe and secure.
2017 left us with many delays in starting the main adaptions for Charlie. We were still in the process of finishing making an accessible garden (post to follow), still in talks with New Forest Council, still trying to secure funding and loans, the list goes on. It certainly is not a straight forward process!
After a routine appointment at Great Ormond Street Hospital it became very apparent that Charlie needed an accessible home within the upcoming year. Charlie had and continues to loose muscle function, it has been a very emotional year seeing how quickly he has started to decline and it has made us even more egar to get the building work underway.
New Forest Council have now agreed a grant and have provided us with the work needed to be done to secure the grant. The work that needs doing is more than their grant amount What they have suggested falls short of what we deem necessary, for example, we would like to widen all doorways to allow Charlie access to the whole home, where the council only deem certain doors necessary.
The anxiety of not having the house meeting his needs and not quite knowing how to fund the shortfall has been difficult. However, after finally securing a loan, combined with almost £4000 raised for Charlie and the addition grant we are now in a position to start.
With the kind support and help of IHD Architectural Services we have now submitted our plans and hope they are approved. As soon as they are we would like to start work immediately, in hope that by the end of the year the home will be fully accessible and safe for Charlie.
We are very lucky to have a Great Aunt Joan, she recently booked us a trip to St Brides, Pembrokeshire. This break has come at the perfect time. Charlie has recently undergone lots of tests and a break away was much needed!
Charlie's weight and height is constantly monitored, it was noticed that he has dropped from the 50th centile to the 2nd in both weight and height! Great Ormond Street have ran 8 blood tests to try and get to the bottom of this. Along with these tests, he is also having one for a potential blood disorder. We are yet to receive the results. Everything always works out in the end but we are naturally feeling anxious. I always think the not knowing is the hardest part of anything. Charlie has also been diagnosed with ADHD and Autistic traits this year, which has been a testing and challenging experience both with the process and behaviour. He continues to make great strides at school, despite the challenges. However, the whole day is exhausting him and his mobility is undeniably worsening.
Not only has the start of the year been an emotional one it has been trying, we have re submitted plans to the New Forest Council, our originals did not provide us adequate space for Charlie's wheelchair and furniture. These plans have been declined and are now going to appeal. The whole process will put us 4-5 months behind schedule and with Charlie's mobility it is clear that we need to get the work done as a matter of importance. We have also undertaken several fundraisers, one upcoming event is our Royal Wedding fete on May the 19th. Not to mention attempting to finish Charlie's garden project that has been over 2 years in the making.
After all we have had on, (the above is only the highlights) we have really needed to recharge, refocus and make some memories. This break is the perfect chance to do just that!
What an amazing place to stay! The children were amazed as we arrived and instantly wanted to explore the grounds. Charlie took his chair out for a spin, we found a library, pool table, ping pong, swimming pool, sauna, steam room, a park and golf. There is so much to do here and we feel so lucky to have a whole week!
We stumbled across this wonderful beach. So many beaches are off limits to Charlie. It is too difficult for him to walk on uneven ground such as pebbles and most beaches are far from accessible. This beach had a slip way down to a perfectly sandy beach that was compacted due to the tides. We were able to walk down to the sea at Charlie's pace. Whilst on the beach we got talking to a man in a tractor. It turned out he was waiting to pick up the life boat that had been out to rescue someone. Whilst the man waited we walked around the corner to discover 'Batman's' cave. Charlie thought it was incredible! We then took our socks and shoes off and paddled in the cold sea. Whilst Charlie is still walking I want him to feel the sand and sea between his toes. Just watching him enjoy it filled me with equal happiness and sadness, as one day this won't be something he will enjoy in the same way. For now I will just embrace the laughs as he tries to escape the waves. After chasing sea we were about to carry Charlie back, as is legs were tired. The man we previously spoke to, started backing into the water to collect the lifeboat. The kids watched on in excitement. The RNLI called Charlie and Sienna over and asked if they would like a ride up the beach, they were so excited. We lifted them on the boat and they even got to try the helmets on.
Moments like these are free and the ones we cherish for a lifetime. Writing this blog is in hope that I never forget. This was a magical day!
WOW! What a great place. Finding days out that are exciting and accessible to both Charlie and Sienna are difficult to find. We were advised that this place was a must, they were not wrong! The farm consisted of a indoor farm, reptiles, fair ground and play area. Not only that they had a massive outdoor zoo, with Lions, Rhinos, Giraffes and more. I would say 90% was accessible. There was just so much to do and the kids said it was the best day ever.
We started off with the zoo which was the perfect size and Charlie cruised around with Sienna catching a ride on the wheelchair. After the zoo we headed to an indoor area which we thought was a restaurant, turned out it had a massive play area attached. I instantly felt panicky as Charlie always wants to do these but can't and Sienna gets upset too as we usually make a excuse to move on. We had already avoided and incredible outdoor pirate park earlier in the day. We made another excuse to go to the toilet and thought we would distract them with something else to do. It happens that we all got lost and ended up in separate areas. The place I took Leo to was next to a indoor Victorian playground. I called Matt who had ended up back in the play area. I went to meet them and promised the children I had found something brilliant, much better than a play area, they happily came to investigate. We spent the next 2 hours on swings, bumper cars, fair rides and even watched a pirate show whilst eating the best doughnuts. We followed this up with visiting the reptiles, bats, parrots and farm animals. Charlie loved the Macaws who repeatedly squawked 'hello' at us. We could have easily done another day here and were so pleased we found a place that ticked so many boxes for both Charlie and Sienna.
We have also visited St Davids the smallest city in the UK. We were worried this would not capture Charlie's imagination, we were so wrong!
After stopping for a fantastic lunch at a place called The Meadow, we walked down the hill to the Cathedral. As we turned the corner we were all blown away. Charlie even shouted 'cool'. The Cathedral and Bishop's Palace was seated at the bottom of a hill with beautiful scenery as the backdrop, it was breathtaking.
Directly next to the Cathedral lies the ruins of 14th century Bishop's palace. Charlie was captured by this and we made it our first stop. Bishops palace is set over 2 floors. Unfortunately the lift was broken. Thankfully Matt is still just able to lift Charlie, who was ecstatic to pretend to play castles and shoot pretend arrows from the upstairs windows. As we walked around we explained the history of the church and how the Bishop's used to be in charge until King Henry VIII reformed the churches. We explained the top floor was for the Bishop and his wealthy guests and that underneath was for the servants, who were mainly male and paid with a loaf of bread and a gallon of Ale! He thought the underneath was incredible as it played into his love of Harry Potter. The servants quarters being the Chamber of Secrets!
After exploring the palace we walked out and played in the stream that runs along side, followed by a look around the Cathedral. Charlie was able to see some 13th century treasures, including coins buried with a Bishop and Silver from the Norman era. We even looked at the oldest book, dating back 500 years. We finished the tour with Charlie lighting a candle for each of us, he prayed for Ralph to be a helper dog and for better muscles. Mummy prayed for the same and the health and happiness of us all.
Today turned out to be yet another fantastic, educational day full of fantastic memories!
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