Zoe: Sofa so good

Sonny hasn't got enough energy to make it into school for the afternoon today so we are chilling out on the sofa building Plo Koon's Jedi Starfighter out of Lego instead (thank you Martin). Our community nurse has just left with some of Sonny's blood in her rucksack. Later on today we'll get a phone call with the results hopefully saying that yesterday's platelets are beginning to hold. He's having to have them replaced every 3 days at the moment which is incredibly worrying.  In the meantime, I'm making the most of his time on the sofa to pump him full of fluids as all the concern over his kidneys has meant that his daily fluid target has been increased to 2L a day. This gives his ears a break as I don't have to nag him to drink every 20 seconds if he's on the pump and it also means he can sleep in his own bed. To give his kidneys a break some of his regular medicines have been suspended and replaced with other medication to reduce his whoppingly high blood pressure. 

This turn of events has really freaked us out but I don't know if its an accumulation of worry or if we should be really worried. As always we'll be guided by Sonny and if it wasn't for the fact he's covered in bruises from the lack of platelets we'd be feeling more positive. I'm always at my most tetchy when his treatment is undecided. But, until his next PET scan we won't know whats lurking round the corner treatment wise. You can't help but worry that his damaged blood vessels are indicating that his young body's reached its tipping point from the assault course of chemicals and procedures its been on for the last 20 months but while he's still chirpy and busy building things we'll just have to keep counting the grey hairs.