since last on here Josh had a very enjoyable 4th birthday, and is enjoying being 4 very much! and Aaron is now 1 and we had a family tea to celebrate.
Josh had a hearing test due to some listening troubles but mainly as Ethan had had so much difficulty with his ears, but all was fine, he just doesn't listen!
His paediatrician at Epsom saw him regarding his weeing troubles and after the scan showed the problems with his emptying the bladder, she has prescribed him some medication that relaxes the muscle or something like that. This has worked well and he is much more comfortable and has far fewer accidents. He saw the urologist up at GOS too just to rule out anything more complicated resulting from the surgery (surgeons referred him) and all was fine, they would like to do a whole day study of his bladder emptying but we haven't heard yet. A very early start this time for an appointment at 9 and ultrasound at 9.30, we missed our train which meant a mad dash and a taxi ride treat to make us only slightly late.
He had a review with the GP to see where we are at and which medications etc are still needed on his repeat, they must have had too many letters from various drs to keep track of!
We received an evening of babysitting from Crossroads (they provide respite for carers) which was lovely and relaxing in amoungst so many appointments.
We had another Gastro appointment up at GOS. we saw a nice registrar good and bad points to seeing someone new though; a fresh pair of eyes and new ideas are a good thing and he said that there are 'x' number of tests and when they are done if they don't show anything onbvious then they have to start thinking of theories (i've been wanting them to do this for well over a year!). However he did want to repeat some tests which is the disadvantage of someone new along ith having to start the story over again. He also noted a slight incisional hernia from his op.
It was an exhausting day though; up to London with both Aaron and Josh and juggling the pair of them whist listening to the dr, and then we were very popular on the commuter train home Josh eating macdonalds and Aaron a jar of babyfood and screaming with wind, culminating in Josh needing diarrhea whilst still onboard but luckily just after the last big station so that me popping one of Aarons rather small nappies in his clothes was only slightly embarrassing!
So following on from this we had to go up ealy again for a barium swallow, but being the day after a stormy night the signals were down at Clapham making us an hour delayed even having left in good time this time! They checked that his new pains were not caused by the bowel being kinked following the surgery, but it was all fine and settled back into the correct position. He must be the only person who seemed to acually enjoy his strawberry nesquick flavoured barium meal, downed it in 1! Below are some fun pictures of the GOS activities;
We had a review with the Epsom dieticain who was lovely and very thorough, she called back after analysing his weeks diet and went through which areas he was low in; low iodine and vitamin D, quite low zinc and slightly low vitamins B. low fat and carbs and 60% calories. some of which we knew (he is on a exclusion diet afetr all) some not, he is now on a multivitamin to cover some of these.
All not helped by having no phone line since end of November (nearly 3 weeks) and no car since 12th November (well not our car, we do have a hire car) when a van drove into the back of us on the A3 on our failed birthday trip to the sealife centre for Josh. Everyone was fine just Josh and i with sore necks, Josh is fine now but i still have some shoulder trouble and headaches, but nothing serious.
Nothing more before Christmas (i hope, they only gave me 3 days warning before this Tuesday's one) except for booster injections for Aaron and Josh. We start the ne year with a paediatrician appointment for both Aaron and Josh.
In himself he is his usual happy jokey self, however he still get 30-40 episodes of diarrhea a month and in the past couple of months his tummy pains have started to return, nothing like the screaming and vomiting and passing out he had before, but we are keeping a watchful eye. He has also had half a dozen now unexplained fevers, these last anything from a few days to a few hours and no other symptoms present, hoping its just a kiddie type of thing but you never know with Josh so again, keeping a watchful eye.
- a sudden high temp had him fall asleep on the sofaso... thats all, well done if you're still reading this!!!
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