We are now at Martin House and Ryan, whilst not on top form, is quite comfortable and we are all (Becky is here) being very well looked after. There was a bit  of a scare last night when Ryan pulled his Gastro Button out but it was quickly spotted and a new one inserted.

I have been away for a few days but keeping up-to-date with Ryan. He has had one or two bad nights with his secretions. Today he went to Manchester for a checkup and the message I get is that he is better than expected!
I will get full details tomorrow. On Friday I am off to Martin House Hospice for a few days with Ryan so that Mum and Dad have a break.

Just back from seeing Ryan who, after a bad night, was on top form; no doubt helped by the fact that another of his favourite carers (Justina) was back from her holiday in Poland.

Another goodish day with a nice smile when I saw him this afternoon. He "helped" to make a cake today and I am sure the extra attention he is getting is helping him.

Today Ryan was visited by Rozanne from The Green Hut, where he spent many happy hours as a pre school toddler.

A lovely picture of Ryan and Rebecca. I was sitting with him and asked Rebecca to keep an eye on him when I left the room. This is what I found when I came back.

SATURDAY. After a good night's sleep Ryan proceeded to sleep for most of the day. He woke up at about 3.30 and was nice and relaxed when I visited at about 4.00. This is reflected in the photo I took of him with one of his excellent carers, Princess Fiona.

Although not sleeping at night particularly well, Ryan has been very smiley and appears quite relaxed most of the time. His secretions are still frequent and he also  suffers from excessive wind. The picture below shows him with his Springwater teacher. He seems to have got a new lease of life since she started.
I thought you might also like to see how Rebecca has grown since she started at the Grammer School. Cick on the photos to enlarge them.

Ryan had rather a bad seizure yesterday and was very sleepy whilst having his ERT today. However, he still managed a smile when he woke up.

A good day today. Ryan had some physiotherapy and arrangements were made to try and get him back to Springwater special school, where he used to be so happy. Just for a short time at first and then take one day at a time. WE WOULD NEVER HAVE THOUGHT THIS POSSIBLE A YEAR AGO

Ryan was looking good when I arrived for his treatment this morning. Nurse Paula accessed a vein without any trouble and off we went. Towards the end his temperature went up to over 28, as it has on other occasions recently. Paula reduced the speed of the infusion and when I left at the end of his treatment, Ryan was looking and feeling cooler and quite relaxed.

A reasonable night but Ryan was not really with it this morning.

After a couple of good days, Ryan had a disturbed night and has been sleepy for most of the day. He was awake and alert late this afternoon but smiles were hard to come by. This picture was taken on Thursday and shows Ryan, with his new England coat, looking quite like he used to pre Manchester.