starting foods plan

So I've not written much as we've been working out a plan, so its been hard to know what to write until we knew ourselves!
Life has been busy, doing everything on top of feeds and plan making decision making appointments etc has been tiring!

Genie the cat keeping Aaron company again

Aaron has tolerated the tube incredibly well, never complaining, the worst he got was obsessive about his dummy, so we feel all our efforts of managing everyone else's eating etc have been worth it, nice to know we did something right!
We have done some fun things too like a closely monitored trip to Bocketts Farm

milk time all round

 and pre-Christmas activities have started already too, such as the school fair. At the end of November was of course Aaron's birthday - he is now 4! He enjoyed his pirate party and all his presents a LOT, complete with an ice lolly cake and candy floss!

pirates in the ship's mess

Ethan had a sickness bug and we quarantined him which actually worked as noone else caught it, what a relief! I met a new friend for a walk at Polesden Lacey National Trust, her boy is just 2 and also has a feeding tube, goes to Epsom and Great Ormond street hospitals and has Crohns, he has had a much harder journey but is doing better on the infliximab drug i have mentioned before.

Aaron and the ticket machine

At the end of the 6 weeks we treked up to GOS, which as usual involved comical toilet stops with a bottle on the station, the train, the cafe...plus all the feeds for the day on the move which is always more challenging. 1st there was a surprise ultrasound, which was fine, but nice to be through. They decided to wait another week of 100% feeds to get a better remission, before starting the slow wean (rice 1st) to solids, this time aiming only at 50% of his requirements solid the rest the current feed, as there is some new evidence that this can prevent him flaring again. we also tinkered with his medicines again as some of his levels are now too high.... we hope to hold off the infliximab for now but we'll see how it goes.

ultrasound waiting area is fun!

So far he is enjoying his baby rice porridge, we did have a hiccup day 1-3 with some diarrhea, but he is settled again now, so we keep going.
Tomorrow we meet a local paediatrician for the 1st time to add to his team, the idea being he will be better known locally in case of any problems.
Saturday we are taking the boys out for pizza whilst Aaron goes to a friend's to play, as a thank you for all their help, support and tolerance