The last ten days have been really chaotic with hardly a minute to think. A sign of this is that Candice and I skidded down for our swine flu vaccination last Saturday, only to discover that we'd arrived a week early! This absolute waste time happens all too often with me.
Another sign that I'm speeding is the telephone call from a member of the CAST team to tell me that they are outside and hoping to come in and look after Tilly overnight! I love these calls, but feel so embarrassed that I'm not up on my hind legs to welcome them in! These week's was much needed as Tilly has been rather restless and in need of attention during the night.
We waved a teary farewell to my lovely Mum who had been with us for two weeks' holiday. We'd had a wonderful time and she had been able to share the girls' birthdays with us which was perfect. The other fantastic thing that Mum helped with was getting "Tilly Smiles" off my desk. It was with great ceremony and relief that I delivered it the the Caudwell Children's Design Team, and now I wait with with baited breath to see how it will turn out. The Jennifer Trust for Spinal Muscular Atrophy have secured funding for this project and they too are very excited and are hoping to have it ready for this year's annual conference and 25th Anniversary.
I'm half hopeful that it might be ready before the General Election and Tilly will be able to take it to No. 10 to show Gordon Brown as he did say that she was welcome to visit him at another occasion when she missed out due to ill health last year. Rolf thinks I'm bonkers!
I did my "Talk" for the Caudwell Children's Volunteer programme again last week and found myself reliving those early 'fresh diagnosis' days. We really have come a long way and have received a lot of amazing support.
Spun into Treetops, the Donna Louise Hospice, for a couple of hours of solidarity and calm. These coffee morning sessions are so healing and helpful and I always leave feeling energised and hopeful. We found out that the Treetops team are hoping to be involved in the Aiming High activity days which will mean that even the children with complex needs will be able to attend. Brilliant!
There has been mountains of preparation for Rudyard Sailability's Mediation meeting which takes place on Monday, 15th February. It is very much hoped that there will be a positive outcome that will really suit all parties and that the Charity will be able to settle down and concentrate on its future. I dread to think how much time and energy has gone in to solving this dispute that has rumbled on for six years. Crazy - but now we find ourselves at a 'make or break' time and I feel very tense, but ever optimistic - surely a an accessible boat store at a Lake is not too much too ask? We'll see.
Tilly has had to endure many appointments over the last few days including one that didn't even happen, but meant a morning off school hanging around to see if she could go to Birmingham for an infusion to strengthen her bones. This new drug can only be administered in Birmingham and the wards were full. Another appointment has been scheduled to see Tilly as a day case, so this should go ahead next time. I'm really dreading it as needles are really not Tilly's forte!
We've also picked up Tilly's night resting splints and day splints and once again Tilly's feet are being held comfortably in a reasonable position. Tilly chose the colour black for her day splints so that they would blend into her school uniform, but unfortunately they are pink with butterflies - very Tilly but not very cool for school. A black pair of leg warmers has addressed this situation and Tilly feels she part of the school gang!
We also saw Tilly's orthopaedic surgeon who discovered that her left knee seems to have suffered a fracture or infection and has stopped growing! The right leg is charging ahead with the help of the bone strengthening drugs, and the discrepancy grows ever bigger. An operation has been planned to try to encourage one leg's growth and arrest the other's! Never a dull moment. I must say it took us rather by surprise. The good news is that they will try and do Tilly's spinal rods lengthening at the same time.......like anything like this, we'll be glad when it is over as the waiting for it is rather painful, but unfortunately we have to wait until there is space in the intensive care unit and we have heard that they are very busy with very poorly children, so wait we must.
Had a great Annual Review with Tilly at the Junior High School where Tilly is continuing to make wonderful progress and is very happy. In order to increase Tilly's independence and to keep up with her learning Tilly has begun to use her NeaterEater arm supports all the more, and they are brilliant. Tilly needs also to make more use of her Dragon Speak computer which have voice activated software. Very exciting. We are also going to investigate the possibility of Tilly engaging in a course of Tai Chi or Yoga when she is unable to access the PE because of a muddy field or whatever. Sounds very exciting and again the arm supports will be brilliant for this. Another exploration is to see if the school can get a high-lift platform so that Tilly can access the stage for awards and performances. Even more exciting. I love the school and their obvious love and commitment for Tilly's complete inclusion.
Candice had a fantastic report too from the Junior High and was delighted to have spent a session at Keele University with the Pupil Council. Candice's school life is filled with rowing, hockey, dance, football, tag rugby, netball and cross country - all brilliant stuff and I'm so pleased that she enjoys it all so much.
I spent a couple of days at the girls' First School as they were blessed with a visit from the dreaded OFSTED inspectors. It is such an amazing school, but I don't think anyone likes to be put under the magnifying glass and the tension was palpable. Even Tilly made an appearance and had to tell the Inspector about all the fabulous times she had there - he seemed genuinely impressed as indeed he should have been - they all did an exemplary job and set a very high standard for others to follow. I spent my days helping out as I used to on a regular basis and so enjoyed being back reliving so many memories of so many wonderfully happy times. The whole school are outstanding and they all deserved the excellent report that they had from the Inspectors.
The tension mounts now with the Junior High school as the Inspectors are circling and will be arriving at any time. I attended a Governors' meeting with this school and the impending visit was certainly near the top of the Agenda.
We had a stunning time at Shelton Pool with Special Matters last Sunday. A group of families who have children with special needs were treated by the Mothers' Union to an afternoon of splashing fun. It felt a bit like being on holiday with the warm waters and shrieks of joy from the children, without a single length being counted!
Tilly was back with her Saturday private swimming lesson this week which was great, and a super opportunity to build on all that Tilly has achieved at Horton Lodge. There is nothing to beat the rewards from seeing Tilly in the water.
Candice, Rolf and I also took it in turns to stay with Tilly and disappear off for our flu jabs. Another little job done!
Rolf has been an absolute gem and guided me through the process of setting up a new computer following the crash of the old one. I think that I'm now back in the e-world, but there's no real guarantee as yet!
With half term upon us I feel that the Griffiths'-mobile is gently slowing down with the welcome return of 'tea like a proper family for once' last night, followed by a snuggle up on the couch to watch our TV favourites.
Looks like we're headed for cruise mode?