So we are home, unpacked and sort of in a routine! Its been a while since any updates on this page so Im sorry its been quiet for a while. Im sure you all understand we needed some family time with all of our girls but also to get our head around the many changes. Sophie is doing really well since coming home. As soon as she was able to sleep in her own bed we started to see more and more of our cheeky little lady returning. Lots of smiles, giggles and laughter by all, just what we all needed. All of Sophies care/medical needs have changed since her latest spell in hospital so the last 2 wks have been a tad challenging with all of the appointments, home visits and care plans. We have seen a lot of Sophies community nursing and ventilation team which has made the transition back home not as stressful and Sophie is adjusting to the CPAP at night really well, she even enjoys it now! We have one more very important meeting next week to review carers and hours that Sophie may be entitled to but otherwise I think we are almost re-adjusted for want of a better word and the most important thing is that we are back together as a family, in our home, caring for our daughter as any parent would do. We havent even contemplated Sophie returning to school in September which is a shame as she loves it so but with so many medical needs changing and no updated care plans as yet we need to make sure Sophie will be supported at all times and all of her medical needs will be met. What we dont want to do is to send Sophie back to school full time and then the amount of time she would spend out of the classroom receiving treatment would impact on her learning and generally socialising with her peers. That wouldnt be fair to Sophie. This is something we will be working through with Sophies very helpful teachers and school nurses to ensure we get it right. We have had a lot of response from people wanting to help Sophie and fundraise which is very much appreciated. I know monies from The Alfie Fisher Man Challenge that took place in June have now been paid into Sophies account held with the Tree of Hope, (actually on her birthday which was lovely). The cycle challenge raised a staggering £1,757.00 for Sophie which is an amazing achievement in itself but to also then found out that The Crows Nest pub who held a fun day and raffle also raised and additional £908.50 is just astonishing!! We simply cant thank you enough for all of your efforts. The difference the challenge monies raised will make to Sophies life is just remarkable. I also just wanted to make a special mention to Brittany, one of Sophies lovely carers who bravely skydived to raise money for Sophie. The skydive took place while Sophie was in hospital and things were very scary for us at the time so for that reason alone we didnt get the chance to link her efforts on Sophies page. But please know Brittany, Sophie found it very funny that you jumped out of an aeroplane, that you screamed and even more funny with the story you told us afterwards. I dont have an exact figure but Im aware Brittany has raised over £500 which again is just fantastic and really appreciated. We also want to mention Erica & Kylas school. Dunholme St Chads Primary who held a coffee morning while Sophie was in hospital and joined with a tots group fundraiser the total raised was £335.42, which is now in Sophies Tree of Hope account. Thank you so much to all involved with the coffee morning and tots group. We feel very blessed to be part of such a caring community. Which brings me on to my next mention regarding Dunholme St Chads Primary. While Sophie was in hospital, at the end of term, as they do every year, staff nominated a child for the Caring award. Unbeknown to Craig and myself the whole of the staff were in agreement to nominate Erica & Kyla this year. At the end of term they were both, rather surprised I believe, called up in assembly to receive their award for their caring nature with Sophie and always looking out for one another. Their little faces when they got to tell Mummy & Sophie all about it was just priceless. Thank you for recognising our girls who are continually travelling this journey with Sophie and see a lot most siblings shouldnt see but cope remarkably well with love and support from home and equally as much at school. Thank you. Im aware there are more fundraisers planned over the next coming weeks. From princess tea parties to hills in heels! Please watch the page for updates and links to sponsor these fantastic fundraisers. Finally with reference to the monies raised, I just wanted to take a moment to confirm that we do NOT hold any monies for Sophies Smile we are not a registered charity. We are able to raise these funds with kind permission from the Tree of Hope Charity who hold all monies in a designated account for Sophie. When we have sufficient funds we can contact Tree of Hope with a quote for said piece of equipment and they will order for us and make payments to relevant distributors. Im led to believe that we are in a position to start ordering some of the much needed equipment for Sophie so we will be contacting Tree of Hope in the next few days. I know over the last few weeks Sophie has touched the hearts of so many new followers which is just lovely. I always say I will be open and honest with Sophies obstacles and ours for that matter, so I will continue to do so and all the while you get to see the beauty that is our little girl, and family just as we do. And finally I just wanted to share with you all the excitement that is very high in our house today! Tomorrow Mummy & Daddy are renewing their wedding vows jointly with a family blessing for our girls. Its something that has been planned for a very long time but just recently with Sophie in hospital we very nearly cancelled as rightly so, Sophie and her sisters will always come first. We were convinced by our nearest and dearest to still go ahead once we knew Sophie was well enough to come home. We were a little unsure but were so glad weve decided to go ahead. For many reasons really but one that stood out the most was to celebrate our family and all of our achievements along this rollercoaster ride we call life but to also make some amazing memories with all our loved ones. We dont know what the future holds for us at the moment, weve been told so many uncertain things over the last 6 wks but what we do know is we have each other and were going to make the most of every second together! Life really is too short to worry about the little things, only you can make a change, and thats exactly what we intend to do xx
Posted on: Fri, 15 Aug 2014 07:25:51 +0000
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