Tired

A very tiring week. Everything takes a lot of planning to fit in the feeds etc, and that plus already being tired from late nights and broken sleep means small outings feel major!

Guildford castle outing

Tuesday brought Messy church's 1st birthday party, we wanted to attend as we have really enjoyed the launch of this monthly event and they had a clown act followed by tea. However to do so i packed up half the house, having found out what the tea was so i could bring the same foods for Josh and a milk feed for Aaron, finding out the timings so i knew when i could feed Aaron and kindly being lent a back room to feed him in. It all worked out but it was lonely being in a back room whilst everyone else was chatting at the party tea, for both of us! and the tube wouldn't aspirate meaning we were ages, and i had to rely on others to supervise both the boys behaviour and what Josh ate.
Wednesday was Josh's St Helier appt, till no progress on him; we have him back on wheat with no change, maybe slightly better? have trialled lots of carrot (as opposed to carrot exclusion) with no adverse effects. have done sweetcorn transit studies, where we feed him sweetcorn and time how long it take to 'reappear'! but we are waiting on more imaging of his bowel, and are waiting to hear about using little beads to look more closely at the movement of his small bowel. He continues to have diarrhea. Also during the visit Aaron had to wee in the carpark, again whilst waiting and missed and went all over the floor and his trousers etc, and just as the appointment started and hooked up to the feeding pump, thats what a liquid diet does!
Thursday was Aaron's 1/2 way appointment, they weighed and measured him to check he is doing ok with elemental feeds only, took bloods and stool samples to see what the inflammation is currently and chatted about his symptoms. It turns out the diet is an alternative to steroids to 'induce remission', we will see in 2 weeks if it has worked. He also has an ultrasound on friday coming to look at the small bowel and see if there are signs of inflammation there as the scope does not reach that far down. He has medicine again for the blood he is getting in his aspirate and occassional sick. GOS referal still pending.....
The bad news of the day was that the Dr we see there for both boys told us she was leaving for Newcastle (not even close) in 6 weeks :(
Friday to finish the week at Aaron's 10.30 feed last night i discovered his tube out partially, but this time guiding it back in made him sick several times. Then because he had emptied his stomach we couldn't aspirate for the longest time ever, in the end he wasn't back to bed til nearly 1am, then up at 6 to wee!

my candyfloss birthday cake, something everyone could enjoy!