WE DID IT!
Thank you to everyone who voted in the Pepsi Challenge - $250,000 has now been awarded to fund a year's worth of research into SMA! We are all blown away as a family and so very grateful to the family in USA who were inspired to apply to Pepsi for this donation, and to all those, globally, who have clicked! I am rather struck at the power of 'clicking' and it reminds me of that theory of 'a butterfly flaps its wings' in South America and this leads to a tropical storm in another part of the world. Just imagine how many tombolas and raffles and sweepstakes and store collections and bag packs, and fun runs and sponsored walks, etc, etc,that would have been needed to have raised such a huge amount of money for the research - yet all it took was Pepsi with an innovative idea and energised, electronic supporters. Amazing. Who knows what might happen as a result.........
It has been a heavenly week with my lovely Mum with us. We decked the house with flags on 25th as it was Mum's birthday and then we spent the whole day celebrating - breakfast with Candice; lunch with Rolf and I; tea with Tilly and Pauline and then champers, cake and candles with everyone, including Mich, the girl's godmother. Between sips of champagne Mum was on the phone to all of my three brothers and three sisters who were determined to share the moment. Wonderful - mission accomplished.
Mum also helped me chose a dress for the up and coming Caudwell Ball, which is perfect, but a little snug - so I must now seriously keep off the goodies as I am more 'ball-shaped' than in shape for the ball! The next mission will be to find a stunning creation for Tilly - can't wait!
Tilly's knee seems to have settled down a lot now and not causing the same level of discomfort when we move it. I can't wait to see her up on her feet in her standing frame again once she feels up to it. We have also received notification of a date for Tilly's impending surgery for both knees and her spinal rod extensions. It is planned to do all the procedures together which makes sense, but naturally will take some time. I am already starting to feel sick at the thought of it - but I must try not to worry too much as the whole thing may be postponed if there is not a bed available in Intensive Care. Time will tell.
Rolf has been magnificent all week taking on all the transport and after school activities. I am sure that he will be glad when I'm back in the driving seat, but I have a feeling that he has also enjoyed the change of scene, and I know that the girls have enjoyed seeing more of their Daddie.
As a family we are very fortunate to be able to access The Donna Louise Hospice, Treetops, which we consider a vital part of our lives, and we couldn't believe our luck when we were invited for a week-end stay because they'd had a cancellation. The girls excitement reached fever-pitched as they packed their suitcases and anticipated the high jinks and fun-filled times they were about to have. Mum and I loaded our bags with goodies and fluffy slippers (bang went the diet) and Rolf dropped us off on Friday evening after Chess.
We were welcomed with open arms and wide smiles and immediately felt engulfed in love, care and support. We were treated to a delicious meal 'en famille' with the other children and their assigned helpers, and I felt like a weight had been lifted from my shoulders. We'd landed on our very own paradise isle and could look forward to a temporary respite from our everyday challenges. After tea the girls evaporated to explore the wonders of all the different facilities - art and craft, library, music, computer, sensory,games, jacuzzi, etc, etc. - a perfect playground and all stunningly decorated and tailor-made to enhance and excite each and every visitor. However, if I ever ask the girls what's the best bit about Treetops - they always answer - 'the staff'. Over the years both girls have grown to love and adore each of them and they feel loved and adored right back, and so do I. Mum and I floated up to our cosy family quarters and settled ourselves down for a snuggly, girly evening, knowing that the girls were safe and having the time of their lives.
Treetops is a time to recharge the batteries and catch up on jobs that I've been meaning to do - thank-you letters, shaving my legs, reading a book, wrapping presents, etc. This time I did most of the above, but most of all, I spent some really special and precious time with my lovely Mum whilst the girls had a ball.
Rolf came and picked us up again on Sunday and joined us for a delicious Sunday lunch before leaving. Perfect.
Most of Sunday afternoon was spent unpacking and setting up all of Tilly's machines again as we do have to take each and every piece with us, even for a week-end. Rolf took the girls to their piano lesson and then we all settled down to a tea 'like a proper family for once' and watched the TV - the final of Dancing on Ice. Magic!
Monday morning was very quiet as we all struggled to get through the morning routines after a run of late nights and being robbed of an extra hour. We're all feeling very tatty and looking forward to the holidays. Much improved later in the day, Nana treated us to an evening meal at the local Carvery which was delicious and served as an early celebration for Daddie's birthday.
Tuesday morning saw us re-decking the house with banners and flags for Daddie, but it was also a very sad day as we had to wave Nana off on the bus back to Bridgend. It really never gets any easier to say good-bye. This time, however, I was stuck in the fracture clinic, and my dear friend Andrea was charged with the task of delivering Nana to the coach. What would I do without such a friend? The good news, however, was that I left the clinic after a four and a half hour stint without a cast so I am now once again in the driving seat! Hooray!!!
Rolf's birthday meal was Divine and he was showered with gifts and good wishes - the best one being that he can hang up his swimming trunks and tutu now that I'm unplastered!
The girls are now broken up from school and the alarm clock is no longer set for 0500which is a real treat. Candice and I had a great day with Rudyard Sailability on Thursday with young people from the Aiming High for Disabled Children enjoying a day at the Lake. Tilly stayed at home with Daddie to catch up on some Tilly/Daddie time.
Upon our return Tilly informed us that the Dogs for the Disabled had written to say that Tilly had been successful in her application for an assistance dog and subject to Rolf agreeing to putting up a fence and me getting a letter saying that I would be free to take the dog along to my volunteering settings, they would be actively looking for a dog for Tilly! Is that the tiny patter of paws I can almost hear?
We went to the Hot Cross Bun service at Church today which was very special. I then spent the afternoon with the girls creating the Easter Garden floral display for the Children's window at Church. Floral art is definitely not my forte, but we do try our best. Candice and I delivered it to the Choir House earlier today in an effort to avoid rolling it around the back of the van as has so often happened to my floral offerings in the past! So far so good - just got to try and get it up on the window ledge tomorrow without too much of a disaster, although it does weigh a ton!
Forgot to say that I managed to read some more of "Walking on Water" by Geoff Holt whilst at Treetops. This is such an inspirational book about triumph over adversity that I have been reading for ages, (mostly through a veil of tears)about a young man with a spinal injury who sails solo around the UK. Highly recommended! Geoff has signed a copy of this book to Tilly with the inscription "Keep Sailing Tilly". With trail-blazers like Geoff how could she stop?
Wednesday, 31 March 2010
Tuesday, 23 March 2010
With a lot of help from my friends (and family)!
Amazing news on the Pepsi vote - funding for a cure for SMA for one year has reached first position! Many, many thanks for all voters so far and please, please keep voting every day so that this amazing opportunity may be realised. Who knows what might happen with just the click of a mouse?
A very interesting week of role-reversal with Rolf taking on the school run and supporting Tilly at all her activities - swimming, ballet, contemporary dance, Brownies, Chess, etc. Clonking around in my pink plaster cast I've had the pleasure of taking care of the guests and the room-cleaning at the B&B! Can't wait to be back in the driving seat - but so pleased that Rolf has stepped to effortlessly into the breach and seems to be enjoying the challenge and the chance to socialise outside the B&B. They do say a change is as good as a rest - but we'll have to ask Rolf about that one.
I was scooped up on Wednesday and taken to the Special Matters Support Group where we were interested to hear all about the Family Fund Trust and how exactly they can offer help to families such as ours - holidays, white goods, specialist equipment, driving lessons and much more - definitely worth checking out - www.familyfund.org.uk.
I was also fascinated to meet another carer who fosters a child with disability and was amazed at the approach by the Local Authority who did not seem to be as helpful and supportive as one might have imagined. I would have thought that any family who undertake this admirable role should receive all the help required - without having to ask and without putting themselves at financial risk. As an added complication it seems that families are reluctant to complain for fear that their child will be removed from them. It's certainly a funny old world.
With expert teamwork and planning we somehow managed to pull off contemporary dance, Brownies, Guides and a Governors' Meeting on Wednesday evening with Pauline's (Crossroads Caring Employee) playing a key role.
I've been very fortunate and received an hours help from Pauline in the morning to help get Tilly off to school on time which has certainly been terrific.
I was scooped up on Thusday morning to do my "Talk" at Home-Start for their new intake of Volunteers. I just love talking to this particular group as it evokes such magical memories of Linda who came to our rescue all those years ago. Linda's two hours a week simply transformed our lives and we shall never forget her.
Had my beautiful friend, Andrea come around on Thursday evening and wash my hair which made me feel so much better. This feeling was further enhanced by yet another wonderful lady, Eileen, popping around with a sandal that goes over a cast which means I can get about easily outside, even in the rain! I've even been loaned a waterproof protector so I can now hop into the shower!
Flowers and good wishes have been arriving from many quarters - all expressing great concern and many marvelling at me being such a silly billy!
Friday was blessed with fabulous sunshine ,and so complete with my cast protector, I was able to join Rolf in a bit of tidying up in the garden which felt very theraputic and was much needed.
Pauline arrived early on Saturday morning to help get Tilly ready for her trip to Rotherham with Daddie for her County Chess Tournament. Rolf had to sit in with Tilly during her matches to attend to any medical crisis, but other than that, Tilly played independently using her amazing arm supports. The standard was very high and Tilly and her team played very well, although they did not bring home any silverware on this occasion.
Candice was an absolute Star and helped with all the jobs at the B&B - I really couldn't have managed without her. We also had fun making great fresh fruit smoothies and sorting out Candice's wardrobe ready for her forthcoming camps and school trip to France. I so adore having magical time with Candice.
It was great to see our travellers home safe as it was a wild and blustery day to make such a journey. We all settled down to one of Daddie's pastas 'like a proper family for once' and enjoyed catching up on Michael Winner's dining programme. I would just love Michael Winner to come and try one of Rolf's breakfast - I'm sure he'd be very impressed judging by the one we saw him eating.
Sunday was amazing. After a very busy breakfast service, Rolf put on the pork and drove us all to Britannia Stadium for Caudwell Children's Mad Hatter's Tea Party to celebrate the launch of its new Family Support Service, funded by Stoke-on-Trent City Council. We were also privileged to see the start of the awe-inspiring Star Biker Egg Run as we entered the party - thousands of roaring motorbikes heading off in bright sunshine to gather eggs for disadvantaged children.
The party was terrific with local families joining in with a huge range of fun activities. Rolf and the girls were particularly impressed with the circus skills and I just loved catching up with all the other Mums and carers who share our special world. I never cease to be amazed at the Caudwell's team energy, drive and enthusiasm as they give all of themselves to these events in their own time.
Having been at the stadium Tilly, along with a couple of other electric wheelchair users, are now determined to go along to a football match! I'll see what I can do! Tilly was also invited to another Dance Class taking place at the Regent theatre - she just can't wait as she has dance running through her core.
Sunday continued with a jaw-dropping performance of Snow White by the Russian All-Stars. Their performance left the audience gasping and weeping with their strength, skill and beauty. This special family treat was organised for us and other families by the Caudwell Children - is there no end to their kindness and insight? A family day out really is a gift beyond compare and much treasured by the Griffiths' Clan.
What then could have topped this magical day off better than one of Daddies' roast dinners and a family snuggle up on the couch to watch Dancing on Ice.
Life really does get better and better!
And to prove it my lovely Mum arrived on Monday afternoon to spend a week with us to help out. What a Darling! My Mum is my rock and my shining light of inspiration and the girls and Rolf also adore her.
Poor Tilly, however, has had a very sore knee since a knocking it against an open drawer on Friday. It is really uncomfortable to dress and Tilly is not able to manage her vital standing therapy. We took her up for an X-ray this morning at the local hospital and they were so warm, welcoming and efficient. Tilly was back in school with a support bandage by 0930, with the X-Ray being sent off for further review. No sign of a fracture! Let's just pray it will soon ease off.
I have heard that Louis Parsons has made a start on his soulscape representing Tilly. Every time I think about this awe-inspiring artwork my tummy tingles.
A very interesting week of role-reversal with Rolf taking on the school run and supporting Tilly at all her activities - swimming, ballet, contemporary dance, Brownies, Chess, etc. Clonking around in my pink plaster cast I've had the pleasure of taking care of the guests and the room-cleaning at the B&B! Can't wait to be back in the driving seat - but so pleased that Rolf has stepped to effortlessly into the breach and seems to be enjoying the challenge and the chance to socialise outside the B&B. They do say a change is as good as a rest - but we'll have to ask Rolf about that one.
I was scooped up on Wednesday and taken to the Special Matters Support Group where we were interested to hear all about the Family Fund Trust and how exactly they can offer help to families such as ours - holidays, white goods, specialist equipment, driving lessons and much more - definitely worth checking out - www.familyfund.org.uk.
I was also fascinated to meet another carer who fosters a child with disability and was amazed at the approach by the Local Authority who did not seem to be as helpful and supportive as one might have imagined. I would have thought that any family who undertake this admirable role should receive all the help required - without having to ask and without putting themselves at financial risk. As an added complication it seems that families are reluctant to complain for fear that their child will be removed from them. It's certainly a funny old world.
With expert teamwork and planning we somehow managed to pull off contemporary dance, Brownies, Guides and a Governors' Meeting on Wednesday evening with Pauline's (Crossroads Caring Employee) playing a key role.
I've been very fortunate and received an hours help from Pauline in the morning to help get Tilly off to school on time which has certainly been terrific.
I was scooped up on Thusday morning to do my "Talk" at Home-Start for their new intake of Volunteers. I just love talking to this particular group as it evokes such magical memories of Linda who came to our rescue all those years ago. Linda's two hours a week simply transformed our lives and we shall never forget her.
Had my beautiful friend, Andrea come around on Thursday evening and wash my hair which made me feel so much better. This feeling was further enhanced by yet another wonderful lady, Eileen, popping around with a sandal that goes over a cast which means I can get about easily outside, even in the rain! I've even been loaned a waterproof protector so I can now hop into the shower!
Flowers and good wishes have been arriving from many quarters - all expressing great concern and many marvelling at me being such a silly billy!
Friday was blessed with fabulous sunshine ,and so complete with my cast protector, I was able to join Rolf in a bit of tidying up in the garden which felt very theraputic and was much needed.
Pauline arrived early on Saturday morning to help get Tilly ready for her trip to Rotherham with Daddie for her County Chess Tournament. Rolf had to sit in with Tilly during her matches to attend to any medical crisis, but other than that, Tilly played independently using her amazing arm supports. The standard was very high and Tilly and her team played very well, although they did not bring home any silverware on this occasion.
Candice was an absolute Star and helped with all the jobs at the B&B - I really couldn't have managed without her. We also had fun making great fresh fruit smoothies and sorting out Candice's wardrobe ready for her forthcoming camps and school trip to France. I so adore having magical time with Candice.
It was great to see our travellers home safe as it was a wild and blustery day to make such a journey. We all settled down to one of Daddie's pastas 'like a proper family for once' and enjoyed catching up on Michael Winner's dining programme. I would just love Michael Winner to come and try one of Rolf's breakfast - I'm sure he'd be very impressed judging by the one we saw him eating.
Sunday was amazing. After a very busy breakfast service, Rolf put on the pork and drove us all to Britannia Stadium for Caudwell Children's Mad Hatter's Tea Party to celebrate the launch of its new Family Support Service, funded by Stoke-on-Trent City Council. We were also privileged to see the start of the awe-inspiring Star Biker Egg Run as we entered the party - thousands of roaring motorbikes heading off in bright sunshine to gather eggs for disadvantaged children.
The party was terrific with local families joining in with a huge range of fun activities. Rolf and the girls were particularly impressed with the circus skills and I just loved catching up with all the other Mums and carers who share our special world. I never cease to be amazed at the Caudwell's team energy, drive and enthusiasm as they give all of themselves to these events in their own time.
Having been at the stadium Tilly, along with a couple of other electric wheelchair users, are now determined to go along to a football match! I'll see what I can do! Tilly was also invited to another Dance Class taking place at the Regent theatre - she just can't wait as she has dance running through her core.
Sunday continued with a jaw-dropping performance of Snow White by the Russian All-Stars. Their performance left the audience gasping and weeping with their strength, skill and beauty. This special family treat was organised for us and other families by the Caudwell Children - is there no end to their kindness and insight? A family day out really is a gift beyond compare and much treasured by the Griffiths' Clan.
What then could have topped this magical day off better than one of Daddies' roast dinners and a family snuggle up on the couch to watch Dancing on Ice.
Life really does get better and better!
And to prove it my lovely Mum arrived on Monday afternoon to spend a week with us to help out. What a Darling! My Mum is my rock and my shining light of inspiration and the girls and Rolf also adore her.
Poor Tilly, however, has had a very sore knee since a knocking it against an open drawer on Friday. It is really uncomfortable to dress and Tilly is not able to manage her vital standing therapy. We took her up for an X-ray this morning at the local hospital and they were so warm, welcoming and efficient. Tilly was back in school with a support bandage by 0930, with the X-Ray being sent off for further review. No sign of a fracture! Let's just pray it will soon ease off.
I have heard that Louis Parsons has made a start on his soulscape representing Tilly. Every time I think about this awe-inspiring artwork my tummy tingles.
Tuesday, 16 March 2010
Plastered!
Had a unwelcome break on Mothering Sunday when I rolled my ankle ushering Tilly into her piano lesson. It seems I have cracked my fibula and damaged the tendons, and I am now sporting a bright pink cast to my knee. I spent the first couple of days on crutches unable to bear any weight, which did make life very difficult, but today I am able to hobble about without crutches which is so much easier.
The student social worker manning the 'Quick Response' Desk was amazing. I explained our new situation and he quickly set up temporary extra care to keep Tilly on her very busy schedule. Wonderful!
Candice has also been so beautiful and helpful - so Candice!
Rolf has dusted off his tutu and trunks and has valiantly taken up the challenge of supporting Tilly's extra activities - Rolf's not one to make a drama out of a crisis and keeps telling everyone that my fall was an attention-seeking ploy to get out of the school run! Bless Him - his 'Eric Morecambe' sense of humour and hysterical impressions really do keep me sane.
Mothering Sunday, however, was lovely, with a beatuiful Church Service, hand-made cards and gifts from the girls, and a cosy family day topped off with one of Daddie's scrumptious roast dinners. We all piled on the couch to watch 'Dancing on Wheels' and 'Dancing on Ice'. Heaven! Motherhood is such a privilege.
Great excitement on Monday night when Tilly tried out an exercise machine that will pedal her legs and rotate her arms whilst she remains in the comfort of her own chair. Sarah, Tilly's Physio, came along to check it out and we were all multo-impressed at what we saw. I would just love to see Tilly engaging in such activity at home and at school and I am convinced that the results would be positive on so many levels, just sorry it's taken me this long to find one! Isn't always the case -apparently chldren as young as three can use them. Can't believe that the Pepsi vote has gone from 8th to 3rd position - thank you all for voting every day and please keep it up as who knows what might happen.
I keep feeling waves of 'tingle' wasing over me, a sort of 'it's nearly Christmas' feeling that you get when you're a child and I wonder why for a few seconds and then I remember Louis Parsons' project and the Caudwell Children's Ball. I think the grown-up word is anticipation of something wonderful that's going happen........
The student social worker manning the 'Quick Response' Desk was amazing. I explained our new situation and he quickly set up temporary extra care to keep Tilly on her very busy schedule. Wonderful!
Candice has also been so beautiful and helpful - so Candice!
Rolf has dusted off his tutu and trunks and has valiantly taken up the challenge of supporting Tilly's extra activities - Rolf's not one to make a drama out of a crisis and keeps telling everyone that my fall was an attention-seeking ploy to get out of the school run! Bless Him - his 'Eric Morecambe' sense of humour and hysterical impressions really do keep me sane.
Mothering Sunday, however, was lovely, with a beatuiful Church Service, hand-made cards and gifts from the girls, and a cosy family day topped off with one of Daddie's scrumptious roast dinners. We all piled on the couch to watch 'Dancing on Wheels' and 'Dancing on Ice'. Heaven! Motherhood is such a privilege.
Great excitement on Monday night when Tilly tried out an exercise machine that will pedal her legs and rotate her arms whilst she remains in the comfort of her own chair. Sarah, Tilly's Physio, came along to check it out and we were all multo-impressed at what we saw. I would just love to see Tilly engaging in such activity at home and at school and I am convinced that the results would be positive on so many levels, just sorry it's taken me this long to find one! Isn't always the case -apparently chldren as young as three can use them. Can't believe that the Pepsi vote has gone from 8th to 3rd position - thank you all for voting every day and please keep it up as who knows what might happen.
I keep feeling waves of 'tingle' wasing over me, a sort of 'it's nearly Christmas' feeling that you get when you're a child and I wonder why for a few seconds and then I remember Louis Parsons' project and the Caudwell Children's Ball. I think the grown-up word is anticipation of something wonderful that's going happen........
Friday, 12 March 2010
Is it the weekend yet ?
Tilly continues to make great improvement with her swimming teacher Louise and the new floating aid, and I still marvel at how high Tilly is now able to lift her arms out of the water to do the backstroke. Louise is hoping to get Tilly to swim on her tummy using this float very soon. The most amazing thing about it is that it costs £6.40! I'm surprised because it is so often the case that anything like this with a 'special needs' application would usually have the decimal point after the four (more often after the zero really, Rolf says)!
The girls spent a perfect afternoon shopping with their special friend Molly. Andrea and I trailed an appropriate distance away so the girls could enjoy their independence seeking out the bargains. The biggest joy for us was seeing the trio enjoying their lunch together with Tilly managing on her own with her amazing arm supports. They are getting more and more an essential part of Tilly's life, and I love them.
We enjoyed a fabulous pasta 'like a proper family for once' on Saturday night and caught up with the Dancing on Wheels. We are all transfixed and inspired, and Brian Fortuna has gone up heaps in our estimation for his commitment to this form of dancing.
Rudyard Sailability's AGM was the meeting that I've been waiting for as the 'hot off the press' plans for the new building were shared. The proposed development is fantastic and will transform the lives of those using the Club. The drawings were viewed in a room filled with admiration and respect for all those involved in the intense mediation process, and immense gratitude to all those who have given so much to bring about such a positive outcome. Personally, after six years of battling, I am almost too afraid to cheer too loud until I see the first spade in the ground, or we are cutting ribbon at the opening! The next stage is to apply to the local council for planning permission which should happen very soon - 4th time lucky? We'll see!
A very special treat on Sunday evening was a family night out at a Chinese restaurant in support of Charlotte Atkins, our local MP. The girls loved being 'out in the dark' and once again Tilly's arm support played a major role in our enjoyment and caused quite a stir amongst the other diners.
Had to miss out on my trip to Treetops for their monthly support meeting as the 'man from the council' was coming to assess Tilly's bathroom with a view to installing a roll-in shower. After a quick chat and a couple of measurements he was off to discuss things with Tilly's Occupational Therapist - we await the results with interest.
Had the dreaded call from school on Tuesday as Tilly encountered a vertigo attack as she had laid back in her chair. Fortunately, Rolf and I were both at home and made our way to school behind every tractor and slow-moving vehicle we could find and arrived to find Tilly fearfully distressed and battling to steady the whirling room. The feeling of helplessness is profound and all we could do was wait and pray that this debilitating condition would pass. In the past, these attacks can last up to three days. We got lucky, and Tilly mastered the dizziness and we managed to get her home for an afternoon at home to recover, but sadly Tilly was not equal to her swimming session at Horton Lodge. Vertigo really is a curse - we've tried the Eplee manoeuvre with our wonderful GP and ended up calling the emergency services, and Tilly has had consultations and scans with the ENT team - all to no avail! Just another thing for Tilly to cope with.
I remember walking to the first school with Tilly when she was streaming with hay fever and we stopped for me to wiped her eyes - "SMA, Vertigo and now Hay Fever," she said, "Oh well - It could be worse!" and carried on her merry way.
Tilly had another splendid ballet lesson before school, dancing independently using her arm supports. It's another real challenge for teacher, Miss Jeanette, as she will adapt the syllabus so that Tilly can take her British Ballet Organisation exams. Can't wait to see how that unfolds.
Suited and booted, I whizzled off to the offices of Caudwell Children and immersed myself the vortex of this turbo-charged environment. I get an incredible buzz every time I enter as I know that all this dynamic energy is going to help families just like ours, and I love being part of them, if only for a few hours.
I dashed home and loaded up the car with all that was required to take Tilly to her new Frontline dance class, and then on to Brownies (dance gear, glide-away toilet seat, jacket-potato-cheezy-beanz, drink, Brownies' uniform, etc). Tilly loved the dance session came out saying that she'd made a new friend - a lovely little girl who asked Tilly if she could walk and when Tilly said that she couldn't this little girl took her hand and said that she would help her. Later in the session a young boy who was finding it hard to settle came to work with Tilly and Tilly said that he immediately became calm and gentle. He asked Tilly if she could talk, and then wanted to know how she got into bed. Tilly was tickled as this is the question that children so often ask her.
Yesterday was a day we've been dreading as it was Tilly's zolidronate infusion in Birmingham. The stress began with the car journey to the hospital with Daddy trying to find another route, avoiding the 70 minute delays on the M6. We had to go to Birmingham as it was the first time for this treatment, but hopefully we can arrange for it to be given in the local hospital next time.
This bone strengthening drug needs to be administered by a cannula which involves putting a needle into one of Tilly's veins. This is a highly traumatic and painful experience for Tilly as her veins hide deep below the surface and are notoriously difficult to find. Everyone in the clinic was lovely and friendly but that did not help calm Tilly's acute anxiety as she made her way to the treatment room. It was Daddie's first time present at such an occasion and it was not nice. After three failed attempts to get the cannula inserted, Tilly was purple with screaming and saturated with perspiration. Every one's nerves were in tatters. Rolf was ready to bundle Tilly up and retreat. A Registrar was called and Tilly was summoned for another try. More heart-wrenching yowls and sobs from Tilly, and eventually the job was done. Rolf and I were so grateful, but destroyed. Tilly recovered instantly, all forgiven and forgotten, and got on with her homework during the half an hour infusion.
When asked on a questionnaire what improvements to the service that we could suggest Rolf thinks that a range of optics installed in the treatment room might help!
We managed to negotiate the traffic in time to get home for a visit from Louis Parsons, an artist who has agreed to create a piece of artwork inspired by Tilly, that will be auctioned at this year's Caudwell Ball. Louis is no ordinary artist as he creates pictures that represent the spirit and emotion of the subject he is painting and he had come to meet Tilly to gain an insight to her soul. As Louis entered our home he brought with him a wonderful sense of passion and excitement about the project. Tilly took to Louis instantly and they were soon talking together effortlessly, with Tilly telling him all about her favourite things in life. Louis took notes and by the end of the session had made a sketch of what he has in mind for the oil painting he will create. It was beautiful. Louis said to Tilly that he thinks that this will be the coolest painting he will ever do and I believe him - his deep commitment to it is palpable and quite awesome. .
http://www.artwithsoul.co.uk/
As Tilly's Mummy I find it an incredible honour and quite overwhelming that my little girl's spirit will be captured on canvas by Louis as an eternal inspiration to others. As Louis left last night, as this remarkable project begins, I knew that Tilly's spirit is safe in Louis' hands, for he already has her in his heart
The girls spent a perfect afternoon shopping with their special friend Molly. Andrea and I trailed an appropriate distance away so the girls could enjoy their independence seeking out the bargains. The biggest joy for us was seeing the trio enjoying their lunch together with Tilly managing on her own with her amazing arm supports. They are getting more and more an essential part of Tilly's life, and I love them.
We enjoyed a fabulous pasta 'like a proper family for once' on Saturday night and caught up with the Dancing on Wheels. We are all transfixed and inspired, and Brian Fortuna has gone up heaps in our estimation for his commitment to this form of dancing.
Rudyard Sailability's AGM was the meeting that I've been waiting for as the 'hot off the press' plans for the new building were shared. The proposed development is fantastic and will transform the lives of those using the Club. The drawings were viewed in a room filled with admiration and respect for all those involved in the intense mediation process, and immense gratitude to all those who have given so much to bring about such a positive outcome. Personally, after six years of battling, I am almost too afraid to cheer too loud until I see the first spade in the ground, or we are cutting ribbon at the opening! The next stage is to apply to the local council for planning permission which should happen very soon - 4th time lucky? We'll see!
A very special treat on Sunday evening was a family night out at a Chinese restaurant in support of Charlotte Atkins, our local MP. The girls loved being 'out in the dark' and once again Tilly's arm support played a major role in our enjoyment and caused quite a stir amongst the other diners.
Had to miss out on my trip to Treetops for their monthly support meeting as the 'man from the council' was coming to assess Tilly's bathroom with a view to installing a roll-in shower. After a quick chat and a couple of measurements he was off to discuss things with Tilly's Occupational Therapist - we await the results with interest.
Had the dreaded call from school on Tuesday as Tilly encountered a vertigo attack as she had laid back in her chair. Fortunately, Rolf and I were both at home and made our way to school behind every tractor and slow-moving vehicle we could find and arrived to find Tilly fearfully distressed and battling to steady the whirling room. The feeling of helplessness is profound and all we could do was wait and pray that this debilitating condition would pass. In the past, these attacks can last up to three days. We got lucky, and Tilly mastered the dizziness and we managed to get her home for an afternoon at home to recover, but sadly Tilly was not equal to her swimming session at Horton Lodge. Vertigo really is a curse - we've tried the Eplee manoeuvre with our wonderful GP and ended up calling the emergency services, and Tilly has had consultations and scans with the ENT team - all to no avail! Just another thing for Tilly to cope with.
I remember walking to the first school with Tilly when she was streaming with hay fever and we stopped for me to wiped her eyes - "SMA, Vertigo and now Hay Fever," she said, "Oh well - It could be worse!" and carried on her merry way.
Tilly had another splendid ballet lesson before school, dancing independently using her arm supports. It's another real challenge for teacher, Miss Jeanette, as she will adapt the syllabus so that Tilly can take her British Ballet Organisation exams. Can't wait to see how that unfolds.
Suited and booted, I whizzled off to the offices of Caudwell Children and immersed myself the vortex of this turbo-charged environment. I get an incredible buzz every time I enter as I know that all this dynamic energy is going to help families just like ours, and I love being part of them, if only for a few hours.
I dashed home and loaded up the car with all that was required to take Tilly to her new Frontline dance class, and then on to Brownies (dance gear, glide-away toilet seat, jacket-potato-cheezy-beanz, drink, Brownies' uniform, etc). Tilly loved the dance session came out saying that she'd made a new friend - a lovely little girl who asked Tilly if she could walk and when Tilly said that she couldn't this little girl took her hand and said that she would help her. Later in the session a young boy who was finding it hard to settle came to work with Tilly and Tilly said that he immediately became calm and gentle. He asked Tilly if she could talk, and then wanted to know how she got into bed. Tilly was tickled as this is the question that children so often ask her.
Yesterday was a day we've been dreading as it was Tilly's zolidronate infusion in Birmingham. The stress began with the car journey to the hospital with Daddy trying to find another route, avoiding the 70 minute delays on the M6. We had to go to Birmingham as it was the first time for this treatment, but hopefully we can arrange for it to be given in the local hospital next time.
This bone strengthening drug needs to be administered by a cannula which involves putting a needle into one of Tilly's veins. This is a highly traumatic and painful experience for Tilly as her veins hide deep below the surface and are notoriously difficult to find. Everyone in the clinic was lovely and friendly but that did not help calm Tilly's acute anxiety as she made her way to the treatment room. It was Daddie's first time present at such an occasion and it was not nice. After three failed attempts to get the cannula inserted, Tilly was purple with screaming and saturated with perspiration. Every one's nerves were in tatters. Rolf was ready to bundle Tilly up and retreat. A Registrar was called and Tilly was summoned for another try. More heart-wrenching yowls and sobs from Tilly, and eventually the job was done. Rolf and I were so grateful, but destroyed. Tilly recovered instantly, all forgiven and forgotten, and got on with her homework during the half an hour infusion.
When asked on a questionnaire what improvements to the service that we could suggest Rolf thinks that a range of optics installed in the treatment room might help!
We managed to negotiate the traffic in time to get home for a visit from Louis Parsons, an artist who has agreed to create a piece of artwork inspired by Tilly, that will be auctioned at this year's Caudwell Ball. Louis is no ordinary artist as he creates pictures that represent the spirit and emotion of the subject he is painting and he had come to meet Tilly to gain an insight to her soul. As Louis entered our home he brought with him a wonderful sense of passion and excitement about the project. Tilly took to Louis instantly and they were soon talking together effortlessly, with Tilly telling him all about her favourite things in life. Louis took notes and by the end of the session had made a sketch of what he has in mind for the oil painting he will create. It was beautiful. Louis said to Tilly that he thinks that this will be the coolest painting he will ever do and I believe him - his deep commitment to it is palpable and quite awesome. .
http://www.artwithsoul.co.uk/
As Tilly's Mummy I find it an incredible honour and quite overwhelming that my little girl's spirit will be captured on canvas by Louis as an eternal inspiration to others. As Louis left last night, as this remarkable project begins, I knew that Tilly's spirit is safe in Louis' hands, for he already has her in his heart
Saturday, 6 March 2010
Hands Up for Tilly!
More progress for Tilly on the swimming front as her teacher, Louise, has introduced a new floating aid that means that Tilly can actually lift her arms out of the water and perform a backstroke! It is quite simply a 'woggle' bent in two with a net to support Tilly's back and allows Tilly to swim independently even in the rough waters of the Saturday morning swimming crowd. When Tilly went swimming in the quieter waters of Horton Lodge special school she found that she could do the backstroke, without the aid! I can hardly believe my eyes. Louise is an amazing teacher, always driving Tilly forward, and she is convinced that she will be able to have Tilly swimming on her tummy one day with this device.....can't wait!
Tilly has been practising Chess with Candice all week, and to our absolute delight has mastered the arm support to help her. Quite brilliant to watch Tilly's level of independence and confidence improve with the NeaterEater kit.
There was more to come as on Wednesday I failed to get Tilly comfortably in her standing sling ready to do ballet. We decided to give up as time was running out and Tilly chose to dance in her powerchair, but this time using both arm supports. The results saw Miss Jeanette and Tilly beaming from ear to ear as Tilly independently worked through her barre routines, achieving fifth position and more - a new chapter has begun - powered wheelchair ballet!
Still more breakthroughs as the days went by and Tilly's PE teacher at school advised us that a new group, Frontline Dance, were starting up after Easter. This company specialises in contemporary style dance, working with dancers of all abilities with wheelchairs welcome. Then the phone call came that the group was ready to begin that night and were we up for it! With a few hurried phone calls, a bit of rescheduling and organisation we went for it.
I scooped a delighted Tilly up after school, dashed her across town to meet up with Pauline, (Tilly's after school helper), spun back to school to crash in late to a Governors' meeting and then made my apologies to leave embarrassingly early; back to scoop up Tilly, who'd loved every minute, and then back up to the first school to have tea and get ready for Brownies which started at six. It seemed an impossible target to get all these jobs done within such a tight time-frame, but we were determined and I made the great mistake of triumphantly saying to Tilly on the way to Brownies - "We're on a roll!" and of course the 'Powers that Be' heard my self-congratulatory exclamation and before we knew it - Tilly powerchair was clamped in the car, unable to be moved out! Foiled again!
Fortunately, Pauline was able to dash up to collect Rolf who came charging down like the Cavalry and set Tilly free with a torch and screwdriver! Tilly made it to Brownies - all be it a little late - and can't wait for the next Frontline dance session!
The 'Powers that Be' were also listening when we had a marvellously quick and efficient trip to X-Ray for Tilly's CT Scan. This is a record I called to the staff as we skipped out, and cheered because we could even make it back to Chess Club at school. Big mistake, as no sooner had the words left my lips that it bacame obvious that I no longer had the car keys about my person. We scoured the car park, and were then taken pity on by a kindly member of staff who rang different departments and to our immense relief located the missing keys! I think I've learned my lesson and will button it next time things seem to be going our way!
Rolf forwarded me the call to vote every day in March for a Cure for SMA on the Pepsi website and I have been so uplifted by the many people who have responded to the call! Very touching and hopefully will help as we have moved up from 8th to 6th place since making the appeal. Thanks to all - keep it going and who knows what might happen?
I did a store collection for Caudwell Children this week and was so touched at the many people who stopped to talk to me and shared their experiences whilst they made their donation. So many lovely people about. I was also interested in the range of reactions to seeing me standing there with the bucket - those who felt that they had to give an excuse as to why they were not donating today; or those who found the crisp boxes opposite me so extremely fascinating and those who scrutinised their receipts until they were safely past. Naturally, I too have been in their shoes at some time or another - it's just human. I am sure it is a subject that comedian Michael McIntyre would have a field day with!
Rolf wrote to Boris about the lack of dropped kerbs in some of the very touristy areas of London and he had a reply from one of his assistants saying that it is the policy to be wheelchair accessible where possible in London, but that, in fact, the areas that we found lacking were not the responsibility of Boris as they were actually in Lambeth and Westminster! And there we were thinking that Boris was the Mayor of London and might be able to influence such locations! We've heard from a very reliable source, ie Bonnie,(commentator extraordinaire) that another group who advocate for wheelchair users are looking into this problem - so we wish them lots of luck as surely it is not too much to ask to be able to do the Lambeth Walk safely?
Yet more progress for Tilly this week as her Physio, Sarah, came round to the house to see adjust Tilly's standing frame, which is incorporated into her powered wheelchair. Tilly has been experiencing problems with standing as her splints have been out of action and she has developed a significant leg length discrepancy. Together they perfected Tilly's stand and to to our absolute joy and delight Tilly is also able to use her arm supports whilst standing. This means that Tilly can once again stand up every morning before school, whilst eating her breakfast. Double the joy - therapy and independence.
I'll vote for that!
Tilly has been practising Chess with Candice all week, and to our absolute delight has mastered the arm support to help her. Quite brilliant to watch Tilly's level of independence and confidence improve with the NeaterEater kit.
There was more to come as on Wednesday I failed to get Tilly comfortably in her standing sling ready to do ballet. We decided to give up as time was running out and Tilly chose to dance in her powerchair, but this time using both arm supports. The results saw Miss Jeanette and Tilly beaming from ear to ear as Tilly independently worked through her barre routines, achieving fifth position and more - a new chapter has begun - powered wheelchair ballet!
Still more breakthroughs as the days went by and Tilly's PE teacher at school advised us that a new group, Frontline Dance, were starting up after Easter. This company specialises in contemporary style dance, working with dancers of all abilities with wheelchairs welcome. Then the phone call came that the group was ready to begin that night and were we up for it! With a few hurried phone calls, a bit of rescheduling and organisation we went for it.
I scooped a delighted Tilly up after school, dashed her across town to meet up with Pauline, (Tilly's after school helper), spun back to school to crash in late to a Governors' meeting and then made my apologies to leave embarrassingly early; back to scoop up Tilly, who'd loved every minute, and then back up to the first school to have tea and get ready for Brownies which started at six. It seemed an impossible target to get all these jobs done within such a tight time-frame, but we were determined and I made the great mistake of triumphantly saying to Tilly on the way to Brownies - "We're on a roll!" and of course the 'Powers that Be' heard my self-congratulatory exclamation and before we knew it - Tilly powerchair was clamped in the car, unable to be moved out! Foiled again!
Fortunately, Pauline was able to dash up to collect Rolf who came charging down like the Cavalry and set Tilly free with a torch and screwdriver! Tilly made it to Brownies - all be it a little late - and can't wait for the next Frontline dance session!
The 'Powers that Be' were also listening when we had a marvellously quick and efficient trip to X-Ray for Tilly's CT Scan. This is a record I called to the staff as we skipped out, and cheered because we could even make it back to Chess Club at school. Big mistake, as no sooner had the words left my lips that it bacame obvious that I no longer had the car keys about my person. We scoured the car park, and were then taken pity on by a kindly member of staff who rang different departments and to our immense relief located the missing keys! I think I've learned my lesson and will button it next time things seem to be going our way!
Rolf forwarded me the call to vote every day in March for a Cure for SMA on the Pepsi website and I have been so uplifted by the many people who have responded to the call! Very touching and hopefully will help as we have moved up from 8th to 6th place since making the appeal. Thanks to all - keep it going and who knows what might happen?
I did a store collection for Caudwell Children this week and was so touched at the many people who stopped to talk to me and shared their experiences whilst they made their donation. So many lovely people about. I was also interested in the range of reactions to seeing me standing there with the bucket - those who felt that they had to give an excuse as to why they were not donating today; or those who found the crisp boxes opposite me so extremely fascinating and those who scrutinised their receipts until they were safely past. Naturally, I too have been in their shoes at some time or another - it's just human. I am sure it is a subject that comedian Michael McIntyre would have a field day with!
Rolf wrote to Boris about the lack of dropped kerbs in some of the very touristy areas of London and he had a reply from one of his assistants saying that it is the policy to be wheelchair accessible where possible in London, but that, in fact, the areas that we found lacking were not the responsibility of Boris as they were actually in Lambeth and Westminster! And there we were thinking that Boris was the Mayor of London and might be able to influence such locations! We've heard from a very reliable source, ie Bonnie,(commentator extraordinaire) that another group who advocate for wheelchair users are looking into this problem - so we wish them lots of luck as surely it is not too much to ask to be able to do the Lambeth Walk safely?
Yet more progress for Tilly this week as her Physio, Sarah, came round to the house to see adjust Tilly's standing frame, which is incorporated into her powered wheelchair. Tilly has been experiencing problems with standing as her splints have been out of action and she has developed a significant leg length discrepancy. Together they perfected Tilly's stand and to to our absolute joy and delight Tilly is also able to use her arm supports whilst standing. This means that Tilly can once again stand up every morning before school, whilst eating her breakfast. Double the joy - therapy and independence.
I'll vote for that!
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