Been so long since i updated as so much has happened. Charlie has been in and out of hospital a lot lately with various infections. Most recently was last week, he had a nasty cough and didn't really seem himself so I took him to the ward and they said he had reduced air entry into the bottom of the right lung. At first we thought it was pneumonia but his chest x ray didn't really show much so they then decided it was a plug of infected muccas that was causing the problem. So he was admitted and had four days of I.V antibiotics and intensive physiotherapy to try and move the blockage. When he got discharged he had more air entry but i still didn't and don't feel happy about him. He still has a nasty cough and is complaining of his ear hurting so we are off to the GP today and see what he thinks. I also spoke to the Brompton yesterday and it was decided that they are going to bring his appointment forward by a month so they can see whats going on. Normally when he gets discharged he is a lot better and I'm happy with him but this time I'm not at all happy with him. Whilst he was in there he missed a trip to go and see Mickey Mouse's magic show so he was very disappointed as he loves Mickey and was really looking forward to going. I had booked the tickets a couple of weeks before and felt so bad for him when he was unable to go.

He had a review with his immunologist last month and it has been decided that they will increase his plasma infusions to two weekly and also increase the dose because it seems as though the infections he is getting are always the week his infusion is due then it has to be put off because he's ill and then it's a vicious circle. Fingers crossed that will help. I was very keen on Charlie having a port fitted so that all of his medication etc could be done through that but whilst they agree he does need one the risk of infection in Charlie is to high because his body puts up no fight against infections we have to be very careful so they are not going to consider it until his vein access becomes almost impossible.

Olliver has been ok he's not been too happy lately as he is having to be shipped off to family and friends a lot when ever Charlie gets taken into hospital so he has been very unsettled. He has been staying with my mum in Brighton over the easter holidays so hopefully he has had a chance to relax as all the upheaval really does affect him.

I think that's about it for now I'm going to get ready for taking Charlie to the doctors now, I will update soon to let you know what going on.