The latest on the boys

7th June 2009

Well it's been over two years since Oliver and Samuel started their treatment and I have been treating them on my own at home since February 2008, and ABSOLUTELY LOVING IT!!

They are both doing extremely well and have grown too! Oliver is now 124cm and Samuel 121cm. When they started the enzyme replacement therapy they were 113cm and 104cm. This to me is one of the most important things as I know how cruel society can be with anyone who differs from 'the norm'. My precious little boys are tough but I still worry about them getting teased as they get older. The enzyme replacement therapy doesn't help their bones so I am grateful they are growing. Their hearts are stable and we don't have to go back to cardiac clinic until 2010 which is excellent news. All their heart valves are leaking but only the mitral valve needs treating. They both take Lisinopril which reduces their blood pressure and takes the pressure off the valve. They both have lots of energy and are pink which is a very good sign!!

Oliver and Samuel are now 9 and a half and 7 and a half and love to be outside playing with their friends, on the trampoline or on their bikes. We are trying to encourage Oliver to try to ride his bike without stabilisers. He has worn a splint for nearly 6 years to help his weak leg (from his brain haemorrhage at birth) and the orthotist is letting him go 3 months without wearing it to see how he goes. He is very unsure of balancing on his bike, but gets around very well without it and is able to put his heel down flat which is excellent.

I remain exhausted as they drain me of any energy!! Samuel will be leaving his Infant school to go to junior school and Oliver has two more years before he moves on. Not sure where he will go but hopefully it will be to a Special Needs Unit in our town which will take him through to school leavers age. He does worry us, with his increasingly autistic like ways, he worries about so much and keeps on and on, driving us mad!!! He has just joined a special needs football team and commented: "There are poorly children there-we might lose!!"

He just wants to be like everyone else and is starting to notice differences in ability etc which is hard to witness.

Samuel has joined the Under 7's football team and as most of his team are at his school, he is absolutely loving it!! His manager, who has been a star and really encouraging, called him 'a little battler'.

They reamin hard work but very loveable and although they may drive us mad, we do realise how lucky we are to have them, and so healthy