Wednesday 25 November 2009

D +194

Oliver has his immunoglobulin via canula 2 weeks ago and he surprised us all by being really co-operative. When they showed him it was a little straw that stayed in his hand and not a horrid needle he accepted it and the infusion ran without incident apart from the usual boredem.

Had some excellent news yesterday tea time. Olivers lymphocyte sub set results came back and his CD4 count is 309! This is fab news as it seems to be the Magic number GOSH use to determine if he is safe to mix with other children and go to nursery. He will now be going to nursery in January - and I will be taking him to all the soft play areas he used to enjoy - the difference being I can now take him without having that sick feeling in the pit of my stomach the whole time we are there thinking he was going to have a bleed or a bad bump and end up in hospital or worse. It will be so liberating for him and us for sure! A wonderful early Christmas present.

This also means that his immune system is rebuilding well. He is not fully there yet and he will remain on immunoglobulin until Spring to protect him from the winter bugs. After that he should start his vaccination program again as his previous ones will have been wiped out by the transplant.

We are all having our swine flu vaccine and seasonal flu vaccine tomorrow night which we need to have to protect Oliver. Adam has escaped though as he is too young bless him.

Will continue to update when I can. Again I must stress that this would have been so much harder without the support of family (especially mum, dad and Linda- olivers auntie) and friends. We love and thank you all.

Saturday 7 November 2009

D +176

Olivers Hickman line was successfully removed on Wednesday last week, he was a bit hysterical when he came out of the anaesthetic as he had a canula in the back of his hand,but he soon calmed down. We have to now have his immunoglobulin via a canula which should be fun but better than the constant threat of infection with the Hickman line.

He continues to be well and he is full of energy but his behaviour is taking a downward turn he is just so fed up of being cooped up in the house. GOSH have said he can go swimming at quiet times which is another huge step forward. They have also said he should be able to start nursery in January which is great news for us all particularly Oliver. We have got an inclusion support worker who will liaise with the school to ensure they give him his medication and inform us of any illnesses in school, in particular, Chickenpox as this is still quite serious for Oliver whilst his immune system is reconstituting.

Our next appointment at GOSH is on the 27th January and we are hoping at that point we can go to 6 monthly appointments, but I suspect it will stay at 3 monthly for a while. We will always be in the debt of GOSH who have played a very important part in saving Olivers life. We intend to apply to the Anthony Nolan Trust after 2 years to meet Olivers donor, this is of course his decision. What do you say to the person who has saved your sons life? Thank you seems so inadequate. He will be 23 years old by then and Oliver will be 5 1/2. Mind blowing.

Will continue to update when possible - very busy at moment with a caged 4 year old and a 2 month old - who continues to be a joy.

Bye for now