summer



    So..... following the infliximab infusion at the end of may Aaron did very well for about 4 weeks, then had some blood after that which we put down to slightly more fruit and it then settled until nearly 6 weeks when the blood started again with diarrhea etc and getting very weary in the day with chills and headaches and taking lots of impromptu naps on the sofa and even under my chair on the field on sports day! this carried on fluctuating right until the next infusion 2 weeks later, which was hard on him and so also took him longer to bounce back after. They remembered to take his medication levels this time and even though we are still awaiting the results (specialised tests which are sent away still not back mid August!) we expect them to decrease the gap from 8 weeks to 6 between infusions, although we do think he might have started having blood again already at not quite 4 weeks.


sleepy

infusion day

    The infusion which supresses his immune system, combined with his other immune supressing daily medicine leaves us frequently holding our breath, every time someone says they have a chest infection, sick bug, virus etc, or one of his brothers gets a rash or verucca and we have to quarantine them, as what would be mild to another child is potentially serious to Aaron who is not equipped to fight it off.
 It was a very busy end of term with the usual going on to juggle plus Aaron's infusion and an appointment for Josh and then we booked a last minute holiday leaving the 1st weekend of the holidays, so a LOT to organise! Aaron left playschool who have been so good with both of our boys and their troubles so that was an emotional day. The older boys got glowing reports referring to Josh as a gift to a teacher due to his enthusiasm and knowledge, and Ethan's ability in reading writing maths science and ICT, already getting levels which would be good next year in his SATS.

pub celebration meal

    Amazingly everyone was mostly well whilst we were in Spain, this was our 1st beach abroad holiday in 8 years so Josh and Aaron's first plane trip, and Ethan's 1st real memory of one. We had a panic with an overnight appearing couple of moles, but they miraculously disappeared the next day! and also trials of screaming children when re-applying suncream (allergies), but nothing too disastrous. The 1st night home however we had Aaron up til midnight or so with knee pains, Ethan unsettled with ear ache which turned out to be an infection, and Josh had another funny turn with his stomach with lots of pain etc. It was lovely to relax whilst in Spain though as we had gone 'all inclusive' and the food was lovely, the entertainment fun and the only decision to make each day was beach or pool!


 

1st plane trip and cockpit visit

Tom's 40th on holiday

lollies and icecreams

at the beach

weird mole

 Next term is already filling up with appointments; more infusions, urology for Josh and also Ethan, rheumatology for Josh who when we finally got a referral showed a lot of hypermobility but also combined with muscle weakness which we were not expecting, paediatrics for Aaron and Josh, ophthalmology for Ethan who has developed a twitch, and gastro appts for Josh and Aaron. Just in case I thought I'd be bored when Aaron started school, I think this works out at nearly 1 every other week.