Well - he went to a specialist unit once a week for a year (like a nursery) with children aged between 2-3 (he was 2 when he started) for children with special needs - everything from speech and language (why he was referred - that and occupational therapy needs) to severe cerebal palsy and autism and everything in between. There were 8 children in Kerr's class (with a teacher, a play worker and 3 volunteers) so not quite 1-1, but a high ratio of care. And after about 4 months (when they did his first review) they finally recorded what I'd been telling them - that he's all there mentally - he just has funciton difficulty.
So with some equipment from the Occupational Therapist, with a care plan from our Paediatrician who's given lots of information about his illnesses, and with help from the Health Visitor to create the care plan with the Paediatrician - we're here. We're at mainstream.
A momentous day
And yes - I know you'll ask so here goes
He has cystic fibrosis - and it's not one of the common strains - they don't know the exact strain yet which is making treatment hard. Once we know what strain he has we can give him an enzyme to make his pancreas work properly. He doesn't digest food properly which means his development has been slow and he's very small for age (he's nearly 4 but he's still in 12 month clothes). When he gets poorly (with his lungs) he gets very sick, very quickly. He is very mucussy - you can hear it in him, you can feel it in his chest, and he passes a lot of mucus in his poop - he has never made a "formed " poop - his poops are all very wet, sticky and mucussy (a bit like newborn poop). Most people would probably think he's got diorreah -he doesn't.
He needs a special high calorie milk, if he doesn't have 600cals via that milk every day - he drops off the weight chart.
He eats like a horse, but he has some alergies - such as wholemeal flour (don't ask), eggs (call an ambulance) and peanuts (same).
We have been through all the dietry things they can throw at us - but regardless of his diet - his poop remains the same.
On top of this he is very atopic - he breaks out with anything. He has wet wraps at night and dry wraps during the day and requires frequent emoliation and various inhalers etc.
So he keeps me busy - very busy!
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