Yesterday was Ryan's new treatment day. Unfortunately his veins collapsed whilst trying to insert the cannular and it couldn't take place. The cannulation has to be done because the portacath, fitted in Manchester, has given us nothing but trouble and now can't be used!
Apart from this, Ryan has had some quite good nights and has been subdued but quite smiley during the day.

Ryan had a small fit on Wednesday but had a good nights sleep yesterday and was looking really good today, with the added bonus of some great smiles! How does he do it?

Ryan is back to waking very early (5am this morning) and continues to have spells of rocking forwards, backwards and side to side. This does not appear to be as a result of severe pain but it does stop him getting to sleep.

Well, the new medicine only worked for one night! Ryan is sleeping when he should be awake and vice verca. The good news is that he is still generally pain free.

Things continue to improve, albeit very slowly. A new medicine given yesterday helped Ryan get to sleep last night. We hope it will continue to work so Rachel and Bob can also get a good nights sleep!

A strange couple of days with a generally pain free time. However, He is still staying awake for most of the night with loads of secretions. If we could find a way around this his quality of life would be greatly improved. He is looking a lot better, has put on some much needed weight and is smiling a lot more. He never fails to amaze us. One week you think he is down and out and the next he is as he is now.

9 February 2012


Ryan has had a couple of reasonably good days and a good nights sleep too. One or two great smiles as well. The CCTV system is working but is stopping Becky using the Internet on her computer upstairs - a small price to pay! Ryan's web site has mysteriously re-appeared but will no doubt vanish again when BT catch on.

7 February 2012
It looks as if BT have finally pulled the plug on Ryan's web site. So this will be the only way of continuing his Diary.

Ryan has had a mixed time since the last entry. He has not been sleeping too well at night BUT he has still been giving us a few smiles and appears to be putting on a bit of weight.

We are trying a new CCTV system out which we hope will give Rachel and Bob a bit more sleep at night. It sounds a warning if Ryan moves around so they will know if he is awake. At the moment this new system, which is wireless so the monitor can move around the house with them, is conflicting with their Internet system.
Anyone know how to change the band on their wireless hub?

3 February 2012
An average night with Ryan requiring a lot of suction. The ERT was aborted as his veins have had enough of needles being inserted! So, because his Portacath is useless, something different has to be tried in order that he may continue with his treatment.Perhaps a Hickman catheter.

2 February 2012
A quiet few days. Ryan has been generally lethargic and very "twitchy". Last night he hardly slept at all and needed constant suctioning. Still getting some smiles though.