Busy Days and sleepless nights

Its all getting so close now and we are so scared. 

Days are spent having special times with Lyall and he is loving it. He has such a spirit, is such a character and sucks every last drop of pleasure from everything he experiences. Today at the Yorkshire Sculpture Park he waved at people, kicked his ball, jumped off logs and generally bossed us all around. When we were having a cup of tea he wandered round the cafe area signing "ice cream" at those eating ice creams, "chocolate" at the person eating chocolate and helpfully signed to some people that they had a dog under their table. He was confident and engaging and all we could think about is that this time next week he will be in PICU and we will be wondering whether or not the op has worked. Lyall is oblivious as to what is going to happen. We try to tell him he is going into hospital, show him photos of the surgeon, talk about his trachy going but its beyond what he can understand.

He is so so well, the best he has ever been and to put him through something so huge feels like a massive responsibility. There are risks. It may not work or his vocal chords could be damaged, his swallow could be affected, he may contract infections.......BUT the potential benefits are massive. 

The nights are so hard, all the fears come to the fore. Racing hearts, panic, doubts. One of us has to sleep with Lyall at the moment and many hours have been spent just watching him sleeping. When he stirs attempts to get him back to sleep in his own bed have given way to letting him snuggle up in our bed. He has a habit of wanting to sleep with his cheek touching ours or with his arms wrapped round your head. At the moment its fine, almost reassuring and makes you realise how trusting he is off us. 

We have to take that trust and do what we feel is right for him. We know that if it wasn't for us he probably wouldn't have survived. We have done all we can to make him into the confident, beautiful, inspiring boy he is and we couldn't be prouder of him and us!

Massive thank-yous to everyone who has shown us so much love and support, for all the cards, the gifts, the kind words. It really is helping.