To My Miracle - 16 months

Little Man,

You are still so little, so helpless, so adorable. I look at you every day and wonder what goes on in that little head of yours. I am sure there is plenty, but it would be great to know what.

You have developed a severe hate relationship with your bed the last few weeks (it used to be just staying asleep you despised.) As soon as we enter your room, you scream, no matter what mood you were in before. If I don't put you in bed straight away, you calm down. I can feed you in there, change you and all that but the second we stand and head toward the cot, you start again. Its awful but at the same time I am pleased. That sounds crazy, I know it does. What kind of mad mother would be glad their child had a tantrum upon the sight of their own cot. The kind of mother who, when tantrum starts thinks "Yesssssss, that is blatant proof that there are plenty of connections happening in his brain ... he is associating room with cot with sleep/being alone. He is thinking. Physically he can't show us much, but inside, there is a lot going on"

Having your grandparents here last week was the best week you have had. We put it down to the fact that you just have to have something going on. You get bored easily and this is understandable. The more people around for you to interact with or observe, the better. They love you to pieces, which is no great surprise but with all the challenges you have given us, I am sure they were wondering what they were going to walk into. Well, what they walked into was a Nico FULL of smiles. Every time they caught your eyes you grinned a funny closed mouth grin I hadn't really seen before, followed by your giant, wide open smile, showing off your rabbit teeth. (2 at the bottom, 3 at the top) They looked after you every morning and sent me back to bed to catch up on sleep. Nanna fed you weetbix and Grandad pulled funny faces at you.

This month, just before Nanna and Grandad arrived, you had a tube put through your tum into your stomach. It's a good 75mm across at a guess. You had a terrible time recovering the first week and stayed in hospital longer than the anticipated 2 nights. I felt sick to my stomach, wondering what on earth I had signed those stupid consent papers for. Now, 2 weeks later, you are amazing. I still feel terrible that we had to go to such lengths to get you fed and growing, but I would do anything for you and unfortunately this was one of those not-so-fun anythings. So if you are 15 and reading this, I am sure I have already told you about the scar near your diaphragm... but if not, that's what it was all about.

Love everything about you (except perhaps the lack of sleep is lower on the love scale)

Mama.

PS: Drinking, oh my, the drinking. You are becoming a champion, slowly but surely. Since September / October, you have been averaging 20 ml per feed orally. And when I say averaging, that is only because once a day there was sometimes a 70 ml feed. The others were all 5-10 ml if we could cajoul you at all. In the last 10 days, since recoving from the PEG insertion, you have 3 times drunk 180ml+, and averaging 120ml.