Finally a Finlay update.......

[Guest guest]

Hello Everyone.

Its been such a long time since I posted here.....to be honest I

haven't even been reading the messages lately. Life has been really

busy.

Finlay is now 5. He will start school in January (the academic year

starts in January here). He is doing really really well - a

different child!

We started giving him GH shots last Feb. In May/June we noticed

that he had started snoring heavily at night - we did a sleep study

and discovered he was having significnat sleep apnea and using a lot

of energy to breathe through the night. The GH seemed to be causing

a bit of localised oedema around the tonsils and adenoids - so we

scheduled surgery to have them removed and stopped giving him GH

shots until the surgery had been done. The surgeon who removed

Finlay's tonsils and adenoids said they were HUGE and definately

taking up a lot of room in his airway! So it seems the GH just

brought it to our attention more quickly! Anyway by the time we had

the surgery done and Finlay had a chance to recover it was

September! We started the shots again then and since then he really

has gone from strength to strength! He has muscles that he never

had before. He runs, jumps, plays soccer! He had enough " puff "

this year to blow out all his birthday candles! His hypoglycaemia is

no longer an issue. During the 3 mths we took him off GH (July -

Sep) he was hospitalised with hypo-g. GH really is a life changing

medication for Finlay! And he has grown - 10cms - since starting GH

10mths ago (inlcuding the 3mths he wasn't getting it!) He has also

gained nearly 3kgs this year and currently weighs 14.5kgs! We are

very happy!!!

As some of you know we are in the middle of a beurocratic battle

here in New Zealand as GH for Finlay is not funded - so we have to

fork out the cost ourselves. We've been working pretty hard to try

and reform the system though and along with another family (the

Wilkinsons - also on this list serve) we fronted for the media! One

of our national newspapers ran a large feature article about our

situation and 60 mins (the New Zealand division) did a story about

us too. We've had a lot of very postive feedback as a result of the

media attention. Lots of parents have come forward becuase they

have a child with similar issues. And we have been writing letters

back and forth to parliament and ,with MAGIC NZ, had a meeting at

parliament to discuss the wider issues around GH access for kiwi

kids!

If you are interested you can read the newspaper article on the

MAGIC NZ website www.magicnz.org.nz click on the " in the news " button

So 2004 has been a really busy year for us!

The main thing though, is that Finlay is really thriving!! All our

friends are amazed at the change in him in such a short time. At

his end of year show at kindergarten he had been chosen to stand up

at the end and thank everyone for coming. Last year he was a tiny

shy little boy who would never have volunteered to do this

job...this year he stood up full of confidence and spoke clearly and

audibly....a few mums confessed afterwards that they had tears in

their eyes as they watched - I certainly did too!!!

I wish you all a very happy holiday time and a fantastic 2005!

And I promise to be more communicative in 2005!!!

hugs

in New Zealand

Finlay 5yrs, RSS, G-tube, Genotropin,

and Logan 2yrs 8mths - and full of mischief!!!