Tuesday, 5 February 2013


The early alarm call at 05:15, early in January 2013 was the first sign. Tilly's PA, Sally, arriving in the dark and cold at 06:30 to help get Tilly through her morning routine of respiratory work-out; shower/hair wash; dressing; standing in standing frame; breakfast and ready to leave at 08:15 told us that it was time to press the 'fast forward' button as we were back to school.

Standing room only!

On the first day back a minor disaster struck - Tilly's arm supports stopped working!  Within a few moments of life without them we all realised just how much independence Tilly has with them.  Everything took so much longer as Tilly was unable to feed herself; take her own medication; clean her teeth; log on to her computer; use her phone; scratch her nose; move hair out of her eyes, etc. etc.  It was astonishing as we also all kept forgetting - even Tilly!  She said she couldn't believe how 'different' she felt; so very weak; and she even requested to be fed her lunch anywhere other than the dining hall as she didn't want to be seen being 'spoon-fed'.

And up to fifth position

Miraculously, the customer service given by Neater Solutions, is outstanding and, John the Engineer, arranged to call to sort it out at 07:30 before school within a couple of days.  This was such a relief and is just the sort of care that we have come to know over the last four years.  Driving into school with her 'arms' back in-situe Tilly also remarked how much better she could sit up with her arm supports on, and how much more control she had of her head.  Tilly felt that she was rotating forward without them making it very difficult to keep her balance.  Who'd have thought that?  They are the most wonderful bits of kit!
Good for taking tablets and using my tablet

Tilly's arm supports' malfunction was not the only snag in the new year, as Tilly's powerchair presented with an intermittent electrical fault.  Once again, such sophisticated bits of kit will occasionally develop a fault, especially when they are being used 12 hours per day, 7 days per week, 52 weeks of the year.  However, what makes the difference, and stops a little drama becoming a crisis, is when the technical service support is faultless.  Within moments of reporting the fault to Eric at Five Towns Mobility Centre,  Tilly was booked in to get her wheels sorted with Dave, the Engineer, before returning to school.  Magic!  The prospect of Tilly managing without her chair really makes my blood run cold as it is not only her means of getting from A to B, but seems to be the animator of her very soul.  Once, when Tilly had to use a manual wheelchair for a day, she actually commented that evening, "I don't really feel like 'me' without my chair."  These chairs may cost a lot of money initially, but the impact they have seems priceless.   Praise be, as always, to Caudwell Children for this precious gift.
My Beautiful Chair

Now it is often said that things come along in threes and so it was that during the first week back to school Tilly's 'buzzer' to her Teaching Assistant ceased working.  This ingenious little device, supplied by the NHS Department, Access to Communication Technology, allows Tilly  independence to sit and chat with her friends at lunch or at break, without an adult in earshot - very important I should think for all young ladies!  However, if Tilly needs any support, (urgent choking rescue, or just the lid off her drink) then she can press a button and the Assistant will be alerted.  We were so delighted when we reported the fault to find that ACT offered to send a replacement immediately.  What service!  Tilly was soon able to catch up on all the girlie gossip once her buzzer was back in place.

Rondish Attendant Call and Pager

We were blessed also in early January with another very special delivery from the Tissue Viability Team.  Following night after night of chronic pain in her tailbone; needing attention at least once an hour to try to relieve the discomfort; sleep deprivation on all sides starting to show, a specialist pressure-relieving air-mattress arrived and transformed our nights.  Tilly slept right through the night completely pain-free which was wonderful, she said it was like 'sleeping on a cloud'.  What price for a good night's sleep?

Huntleigh Auto Logic "Cloud" Mattress

Tilly is so lucky to have such a dedicated team around her, like her Physiotherapist, who arranged for Tilly to trial a 'Tens' machine to try to manage pain in her hip.  It seems that instead of a ball and socket hip joint, Tilly has more of  'an egg on a saucer' arrangement which does lead to pain during the day.  The improved night's sleep seems to have helped reduce this pain, but alas, the tens machine didn't, but we are so glad that we gave it a try. 

Tilly saw her spinal surgeon this month who is planning to remove Tilly's current extension spinal rods and replace them with a fixed rod.  This major operation should take place in the summer so that she is ready to go on to start her new school in September.  If Tilly's hip pain becomes intolerable then her orthopaedic surgeon has offered to try and put it right in theatre.  This, however, is another big job so we'll continue to look into alternative means of pain control, although, being rather needle-phobic, Tilly has already ruled out acupuncture!

It was great to see Tilly back swimming again after her break following her last round of surgery late November.  Her swimming teacher, Dan, already has Tilly making a bit of independent motion on her back without her swimming buoyancy collar which is fantastic.  Tilly's hip was so much better after being in the water that we might just contemplate an accessible hot tub at home for daily hydro-therapy!

Cheddleton Snow Patrol
The snow was met with great celebration as the girls' schools closed for a few days.  Complete with Tilly's 'all-terrain' three-wheeled buggy, the Cheddleton Snow Patrol set off in search of arctic adventures.  Beautiful Candice was steering and I was leading Lexi who pulled Tilly along the frozen lanes.  We made it through a swirling blizzard to a magnificent, pristine snow-field and delighted in watching an ecstatic Lexi leaping like a reindeer; burying her nose in the snow and rolling on her back to make the most heavenly snow angels.  Her golden retriever grin was beyond compare as she chased Candice's snow balls and tried to catch big, fat, fluffy snowflakes.

Three Snow Maidens
Just messing about in the snow!

We couldn't resist lifting Tilly out onto the snow to make her very own snow angel, and to feel the chill when the snow sneaks inside your glove and wedges of ice freeze your neck as it falls under your scarf.  With the snow getting heavier, and the temperature dropping, we made our way back up the frozen lane on the packed ice, and were so pleased to be assisted by Farmer Stan, our very own 'Good King Wenceslas', who helped push us up the relentless hill.  Back at base, Tilly's body was covered in a blanket of snow with ruby cheeks and her eyelashes dressed with mascara snowflakes.  I couldn't tell if Tilly was smiling beneath her frozen scarf;  her jaw was so cold that she could hardly speak, but her eyes were gleaming with delight.  She had been out in the snow, just like all her mates at school. 

Snow Princess

 It has to be said, however, that this magical adventure wouldn't have been possible without the help and enthusiasm of our very own Snow Angel, Candice.

Snow Angels

Within a twinkling of being inside the tropical warmth of home, we all jumped into snuggly 'onesies', and thawed out on the couch with the Prince Caspian DVD, hot chocolate and cookies.  I don't think we shall ever forget this priceless, snowy escapade.  
There's no place like home
January is often thought of as a rather dull month, but not so chez Tilly as not only do Rolf and I have our wedding anniversary on Burns' Night, but the girls celebrate their birthdays each side of this day.  It is a whirlwind of birthday bunting, ceremonies, cakes, candles, cards, presents, special outings and haggis!  (Greater love has no ex-veggie wife that she will join her husband in such a delicacy)! 

Where did those ten year's go?
 The major treat on the birthday week-end was a night at the X-Factor Tour in Manchester.  The stage show was dazzling, and all the acts did themselves proud, with both girls particularly enjoying the boy band, Union J.  I get the impression that they'll soon be making an appearance on Tilly's bedroom wall as all the Disney princesses that once danced around the room are banished as Tilly is now, well and truly, a teenager!  Bring it on!

Happy 15th Birthday Candice!
It seems that there are many expensive items that have a profound effect on our lives, but there are also the affordable items too that can transform us beyond words.  Yet, it can often be that we can be blessed by priceless moments of pure joy that don't cost a penny, but rely on a bit of creativity, effort and a lot of belief. 

Once such moment that comes to mind is when Tilly took to the ice and skated with Jane Torvill and Christopher Dean.  I have a photograph of this experience in a frame with the words, "Life is not measured  by the number of breaths take, but by the moments that take our breath away".  Take a look at the link and see what you think?


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