Even though we are home, its still very much a weight-ing game for us all. Albie is putting on weight ever so slowly and is now 3.86 kgs. Weight, or lack of it, is often the bain of the cardiac kid as so much energy is being used on his circulation set-up that not alot is left over for growing.
So settling in at home is punctuated every three hours by a feeding schedule of calorie supplements, tube feeds and expressing. Its had me a wee bit down I have to admit. I think its because somehow I thought that leaving hospital would mean leaving behind all the medical bumpf that has surrounded Wrigglesworth since his arrival. But looking at the syringes, litmus paper and gastric tubes that now occupy our kitchen, I am starting to realise that medical bumpf will be surrounding Albie, wherever we are, for sometime yet.
And then I look at Wrigglesworth – and all is well again. He is delighting in time on his own on the ground, his toy Ruru that hoots, and anyone whispering. He has a strange looking claw hand in the last photo. Thankfully, thats just a trick of photography.