ah so much for 2010
Well I have not been on here for ages, mainly due to my ill health but we have had a double blow Josh who had been feed free for three months and food trailing is back to feed only.
Josh was taken into hospital last week after four weeks of not keeping anything inside him apart from spending one week on diaorlyte as this was the only thing he could tolerate. He became worse last monday morning so gosh sent us to our local village hospital, where josh spent another three days on diaorlyte and then we slowly had to reintroduce the feed at a very slow pace. He is out of school again and had only attended 204 sessions out of 337 possible sessions.
I have had great support from Helen as usual but I have to say I felt like crying as my three dont seem to be improving at all infact I would say they are reacting to more and more things.
Callum starts secondry school in september and I am wondering how many lessons he will miss, he also has been unwell with reoccuring chest infections.
I am having good days and bad I am very tired and I am not sure if that is a result of losing the overies and starting the hrt. I am due another op but I have said no more until the winter now. The last six months have been awful for us as a family and we were hoping that things would pick up in the next six months but Josh is that yucky grey colour and he is totally exhusted all the time.
Josh also has psdumonuas in his peg site so he was faced with the options of keeping the peg and suffering with the pain, get rid of the peg and drink 2litres of unflavoured eo28extra per day or change the peg to a mic-key so the infection could not survive, after two weeks of try to decide what to do Josh has choose to change to a mic-key but now we are in the battle of who is going to do it GOSH or our local consultant who believes Josh could drink the feed. so much stress.
Alexandra was suppose to start food trailing but with me still not 100% and Josh been ill we have put this on hold also.
oh well just a brief update on the lucas clan.
oh yea kitty thanks for the cake link.
love michelle xxxx
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Hi Michelle
I am so sorry to hear what a nightmare you are having. I don't blame you for wanting to cry - I would too! It is so unfair that all of you are struggling to get well. You must be such a strong person - your kids are very lucky.
I can't believe Josh has to make such difficult decisions at his age. That must be very hard.
I'm sorry to hear you need yet more surgery. Sounds like you could do with a break - but with 3 kids that can't be an option.
Does GOSH have any idea why they are responding to more things as they get older? is it mainly food that triggers their flare ups or is it illness too?
Our eldest son has had a better week thanks to starting the Neocate Advance - his school have noticed a change in his energy levels - so relieved. Our youngest son started the week off okay and ate well last weekend but he has refused to eat again today and has tummy ache and complaining of pain inside his bottom (he does this every now and then and gets very upset - i haven't a clue why as he doesn't like sore?).
Anyway, I hope Josh gets on ok when the change the peg.
Take care,
Kitty