Finlay and I are just home from a week at Craighalbert and we are both shattered!

We had a fabulous week and i learned so many new stretches and exercises to help build up his muscles – i only wish the staff up here were as proactive and up-to-date with preventative measures!Finlay found the course pretty tiring but he worked really hard and i see a difference in his stability when sitting so hopeully we will continue to build upon that.  He loved the sessions in the hydrotherapy pool, he can (in his words) “swim like a fish!!!”  He’s such a clever boy!Next session is booked for September so we have a lot of work to do over the next few months so we are ready to take the next step.If you have any questions about what we do please ask or use the links to look at their website.

What a bunch of generous people we have in this world!

Okay the bank account is looking really healthy just now.We had a very generous donation of £500 but unfortunately we have no idea who it is from.  If it was you THANK YOU!!!

1981 reunion group have kindly donated £250

We have had loads of other donations from people who didn’t make the Fit for Finlay day approximately another £400.

Parade shopping night was a great success too! We have a cheque winging its way to us for £169.  Thanks to all who treated themselves.

All in all if has been amazing and we are so grateful for all the donations regardless of their size.

THANKS TO EVERYONE WHO HAS DONATED OR IS THINKING ABOUT DONATING.

Flowers by Lesley montly bouquet – Paula Clyne

Massage – Keith Louden

Body Pump/Combat voucher – Graeme Robson

Angel Tarot Voucher – Diane Low

Newton Arms Meal voucher – Paula ClyneBody

Attack/Balance Voucher – Sarah Blackaller

Auntie Betty’s Decorative Boat – Jennifer Anderson

1lt Gin – Susan Keillar1lt Vodka – Joanna Blake

1lt Whisky – Jennifer Stephen1lt Baileys – Rita Peacock

Well we had the botox today and Finlay was  a super star.  He was so relaxed and happy when he was being examined – that was before the sedation!!!  The doctors took a look and agreed that the botox could be used in several muscles but due to Finlay’s weight (he’s on the small side!) they had to go for an area that would have the best impact on his life.  After consulting us we agreed that he would get 2 injections in each calf muscle.The sedation went well, he was out of it fairly quickly so the injections went ahead.  He wriggled a wee bit when the injections were fully in but the sedation means he won’t have any memory of the event. The doctors were very happy with the way they went and we were home by 1.30pm.  Finlay has slept most of the day but is now eating a large dinner of chicken pasta to fill his empty tummy.As yet we can see no change but we will hopefully report more through the week.

Well the bank account is finally open and we have a date set for the first official meeting of Finlay’s Fund!  Everything seems to be coming together.First meeting to be held on Thursday 30th April 8pm.If you wish to join the commitee please drop me an email through the contact page and i’ll give you more details.

Finlay has been offered a date for botox treatment!  We have a clinic date for 5th May 2009, we’re so excited about the possible outcomes.Hopefully this treatment will sort out the over active muscles in his legs and let the underactive ones get a look in.  With any luck this will make him more relaxed and easier to handle.Watch this space!

Finlay was a little impatient and joined us 12 weeks early.  All was pretty straightforward in the hospital – Finlay sailed through all the rooms without catching any infections and it seemed easy in comparison to what other parents were dealing with.He got home from hospital at 8 weeks old and he was just like any other newborn.As he got older we began to notice he wasn’t meeting the milestones and we had a gut feeling that something wasn’t right.  After many appointments, lots of worrying and being made feel like a neurotic first time mother we were finally told that Finlay was suffering from cerebral palsy just after his first birthday.  It’s strange to say but it was a relief to finally be told there was something wrong! We didn’t really know what this meant for us as a family, as we didn’t fully understand (and the doctor wasn’t the best at explaining or reassuring us!!!) so it took a while for it to become clear how it would impact our family life.  To be honest i think it’s only now that we are seeing the true impact as he’s getting too heavy to carry everywhere!As Finlay grew and milestones continued to be untouched we knew our life was going to be ‘different’.  Equipment started getting delivered taking up most of the house and appointment cards dropped through the door every second day – or at least that’s what it felt like!  We were finally in the system so Finlay’s needs would be catered for.  How wrong could we be!?For the last 2 years we have had to fight for nearly every inch of care.  ~At present we have not had an Occupational Therapist for 7 months and we have only had 3 physio sessions this year when he should be receiving both of these visits weekly.  Every time Finlay needs a new piece of equipment (chair, standing frame) we have to go through the awful process of meeting reps, getting quotes, getting approval and then getting delivery.  This process can take up to a year by which time he has grown and the piece of equipment can sometimes be too small.  Unfortunately the lack of communication with the team who are ‘looking after’ us has meant we have sourced equipment ourselves and looked for other methods of him receiving his much needed therapy.  This all comes at a cost.  His specially adapted bike cost 1300 and a week long therapy session at a specialist centre costs over 500.Friends and family have watched Finlay thrive with the basic care and can’t help wonder where he’d be if he had the care he is entitled to hence the fact that we have got together and decided to do something about it without the support of the council.I hope this gives you a picture of the start Finlay has had, however, I must point out that he is a perfect little boy.  He lives life to the full and we try to let him access a ‘normal’ life as much as physically possible.  We that with the fundraising we can allow access his environment more fully with better equipment and greater care.