oh my what a busy week we've had and next week is no better!! euans had soooo many appointments its unreal! Had his main bloodtest/renal appointment wednesday, said his thyroid glad has pretty much packed in so has started thyroxine (to add to all his others) and he's got to go in for the day in a couple of weeks to have some iron via IV as hes really anaemic, they dont want to add it to his daily drugs as its such a gastric irritant and he's already on 2 anti reflux meds so dont want to upset him any more .

Also, had physio check today, he's about 12months behind on his gross motor skills still but he is 'developing' so thats a possitive, he might not catch up but he's coping. She said there isnt really alot physio can do as he has alot of bone problems and she cant influence that, as for his low muscle tone she said he basically works 2-3 times harder than a normal child so he should be resting more, she even filled out the form for us to send to wheelchair services to get a maclaren major hopefully hear off them soon.

At the minute euans asleep undergoing an overngiht EEG, had them all glued on thisafternoon, got to go back in the morning to have them all taken off, the diary that goes with it is a bit of a pain, im not 100% sure what to write but i'm giving it a go (will add a piccy at the bottom )

After taking him the hospital in the morning got to get back as social services are coming out to do our assessment and then euan has school.....not sure i'll be sitting down much tomoro either lol!!

Got another hospital appointment thursday too but thats with my favourite doctor. i'm a bit gutted as i've herd he might be retiring next year hes the one who diagnosed euans condition, we've seen him since euan was born and ive got a lot of respect for him! will be so sad when he leaves!!

so...theres my rant over lol.....urgh i am sooooooo tierd!!

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awwww how did you get him to keep them on and carry his bag ?

hes still got them on now n hes in bed, been quite unsettled tho, keeps murmering and talking in his sleep i told him it would help him become batman LOL, i tried ben10 again but he wouldnt accept that this time, he said batman so i said 'ok' and ive promised to buy him a new drink bottle hehe, he has been picking at them but they are glued on pretty tight. fingers crossed they hold out

xx

Excellent news!
Euan kept the EEG machine on overnight and much bribery
So hopefully they will have a clear conclusive test
Off to hospital shortly to have it removed

Aww bless him, what an adorable photo, he's gorgeous! What a trooper!