First meeting of Finlay’s Fund

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.

Botox

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!

The story so far…

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.