A long time coming

It has been a while since I have been able to update Shay's story, I am very sorry for the delay. Shay has had fantastic health since his peg tube placement back in July. He has gone from strength to strength with his feeding. He is still not a great eater but that now is such a little thing since he has feeds through his tube. The pressure has lifted from Shay to eat orally and he is more willing to try a different food at least every couple of months. More likely its a small bite of a new food and then he pulls a yuck face! He doesn't complain of his body aching as much and his energy levels have gone skywards. It is a very demanding job to get him to slow down at the moment. Shay had a fantastic summer and was back to his cheeky self running around causing havoc.
Since September, Shay has had numerous days of school due to him coughing and having the odd virus. Shay is coping really well with the winter months upon us, it has been a long time since he was in hospital because of an illness.
My priority for Shay at the moment is to work through the red tape for him having an educational statement. Our first attempt was declined and our local education authority turned him down on the grounds of refusal to assess. Utter disbelief after the phone call I received!! So the following few months will see me advocating for Shay at meetings, appeals and if necessary tribunals. Shay is a very bright boy and his general knowledge is incredible to say the least. When it comes to other subjects he is like a sponge but a day later its forgotten. It seems he is able to take in all this knowledge but when he comes to retrieve it he finds this very difficult. I find outside professionals do not understand the syndrome he has especially educational specialists. They need to look at Shay as a whole and not concentrate on the little bits if that makes sense. To me Shay's energy in the playground is amazing, something has to give for this and I think his learning has taken a major knock because of this.
I have spent hours today researching trying to find links with mitochondrial disease and a child's education. There is very little on the net with this and I only came up with a few points to help my case with the education authority.

Shay looking super cool, driving a police digger!!

 

A good piece of new is Shay's school are donating all the proceeds of their Christmas concerts donations to a charity connected to mitochondrial disease. They asked me to choose the charity which I was thrilled to be able to help with. It is a registered UK charity for children who have mitochondrial disease. They are not aware yet as it should take a few days to sort out.  Shay has an exciting Christmas planned. There are people out there who are doing very special things for him at the moment. I will up date you all on that very soon.