30 January 2012
A generally quiet time for Ryan. He is still very "twitchy" from time to time but is still pain free for the long periods. He gave me the best and longest smile for weeks yesterday, which was a real bonus.
The priority is still to keep him pain free and get some weight on.

27 January 2012

We were not able to give Ryan his ERT today as the cannula, only inserted yesterday, was bent! We hope he can have it next Monday.
Ryan continues to be relatively pain free but gets a bit agitated from time to time. He gave us some brief but broad smiles which made us all happy.
He is up to 830ml of feed and we hope this puts back some of the weight he has lost, as he is very thin.

25 January 2012A disturbed night, sleepy morning and not too bad early afternoon, with a bit of discomfort. However, through it all I got some big smiles and a great cuddle.

24 January 2012No change today. Ryan has been fairly quiet, a bit of pain and a few smiles. we continue to try to build him up from the 24kg he now weighs.

22 January 2012Ryan had a good first night at Martin House and was quite alert and gave me the odd smile when I arrived at 2.30.
However, at about four o'clock he deteriorated and was in a lot of discomfort. In the end the contents of his tummy had to be aspirated, as the pain relief was not being absorbed. The various medications were then re-administered. When I left at 6.30, he was slightly better. I hope he has a good night!

I wonder that, if some of the medication had been given via IV's instead of his tummy, it would have avoided some of the pain! He is back home tomorrow afternoon and I will report again in the evening.

20 January 2012Ryan, after a reasonably quiet night, was fairly relaxed for his ERT this morning. He was pain free and even managed a few half smiles. He is now in Martin House for three days to give Rachel and Bob a chance to rest up. I will be there on Sunday and write the diary up when I get home. 
18 January 2012One good night and one not so good with a sleepy day yesterday. Ryan had 500ml of feed yesterday and appears to be tolerating it; this is a good sign. So far the new pain control regime is working most of the time.