Happy New Year

what a busy December! the day after my live post i popped in to ask about the flu jab and she squeezed us in then and there! he obviously didn't like having an injection but looked surprised as it was so much quicker and therefore less painful than a blood test. I was worried about reactions but there were none. That day he also started the steroids and the immune suppressant. The steroids made him very lively, even playschool commented how funny he was, not so funny at home though trying to ride down the stairs on his trike and biting me when I didn't let him and doing laps of the hall at a coffee group I go to!
Christmas added in the usual mix of trying to fit in nativities/Christingle services/shows/cubs carols and rehearsals, special church Christmas services, late night shopping, toddler group parties, 2 discos, regular clubs and friend's birthday parties, seeing old friends, school Santa and school party, and a cubs theatre trip! ever time we left the house it seemed we had to bring the contents of our kitchen just in case there were mincepies/biscuits/cake/chocolate/sweets/crisps/sausages/themed food etc there!

We had also planned special outings;
Bluebell railway Santa special which was really lovely and very old fashioned and traditional.

Great Ormond Street Christmas party which Tom Ethan and Josh got the afternoon off for, lovely to do something hospital related that was fun! it was a very impressive extravaganza!

We then went to look at the lights in Oxford/Regents street and to look round Hamleys and have dinner at Pizza Express, the only place I knew that could cater for Josh and Aaron.

Then Christmas itself, Christmas Eve traditions, the BIG DAY, family meet ups after on the 27th for tea and 28th in London (not hospital for a change!).

Then Ethan's birthday and 'polesdenopoly' (a local activity walk) and back for real monopoly, and 2 days later friends round for New Years.

Lots of it was fun, some was an organisational nightmare, and quite a bit of OTT behaviour - we are pretty exhausted, in a way it'll be good to get them back to school! Oh yes except Josh has an appointment that day at 10am, see above for all the dates coming up! and in the middle 10 9yr olds coming round for Ethan's party!
He has been having the weekly blood tests (once I had spoken to everyone to set them up) the 1st one showed no change but after 10days the results were back from GOS to say that he could tolerate the azathioprine so his dose was doubled. The 2nd test showed a lymphocyte reduction to what they wanted, the 3rd test was yesterday so we'll see if it is the same, hopefully not gone too low. The tests themselves are variable; didn't like them and cried for the 1st 2, ok with the 3rd, but really screamed yesterday. He is full of recurring mouth ulcers for about 2 weeks now, still unsure if they are from having a lowered immune system, a reaction to the medicine or a 'extra manifestation' or his crohns disease.

magic cream on ready for the blood test

ulcers