A quiet day for Ryan. He looks quite relaxed but smiles are rare today.

A disappointing day! After a good nights sleep we were once again unable to access a vein for Ryan's Enzyme Replacement Therapy. I wonder what affect it will have on him; he has not been very happy since missing the last treatment but this could be a coincidence.

Sarah, Michelle and I took Ryan out on his power assisted tricycle today so that his legs got some exercise. We had a bit of a scare when he had some breathing problems but with the help of his inhaler and some oxygen, we were able to get him back on track. Still no smiles but he does look quite relaxed albeit still windy and "snotty".

Not such a good day with Ryan starting it with a seizure. He was OK this afternoon but not in a smiley mood and I can't say I blame him!

Ryan on the trampoline with Justina today. He loved it.
(Justina did all the bouncing for Ryan)

Relaxing with the new puppy.

At the Donkey Sanctuary yesterday.

Another day at the donkey sanctuary for Ryan. He was not so smiley this time but still appeared to enjoy it.

After a good nights sleep, Ryan looked good today. If it were not for an excess of wind and secretions, it would have been perfect.

I thought you might like to see this video Rebecca made. I hope it works on your computer!

After a good nights sleep Ryan has had a very good day. This morning we took him to the donkey sanctuary to ride a donkey. He normally looks quite disinterested but today he really seemed to enjoy it; he even did some trotting!  Then, this afternoon, he did some baking with Rebecca and princess Fiona.

                                                   Getting ready to ride.

Ryan looked good today. Rebecca was making a short film with him in it. I hope to get it on the blog soon.

Ryan looked relaxed when I visited today and gave me the most enormous smile. It made my day.

SUNDAY. Ryan had a good day today and looked relaxed and happy when we visited this evening.

Just back from Ryan's. He looked very relaxed. He has been into town today and Princess Fiona has been doing some painting with him. He appears to enjoy putting his hands in the paint to actually painting a picture. A good day.

Top. Ryan greeting Sarah.                     Left. A selection of paintings done with the help of carers Fiona and Michelle

Ryan has had a couple of OK days and was very smiley this afternoon. He has had two seizures since the last entry, which is a bit worrying.

Ryan had a good Sunday night but another "snotty" Monday night. No smile today when I saw him but he was suffering with a lot of wind. His antibiotic is being changed and enemas twice a day is what is being trialed in an effort to sort the wind problem out. Physically he is doing really well. He can now sit up straight without help.

After a good nights sleep, Ryan looked really good, albeit a bit uncomfortable, when I saw him this evening. He is suffering from an inordinate amount of wind and we we need to try and find out why.

Saturday. Ryan is full of wind and very "snotty" today. He woke up at 3am and did not  sleep thereafter!

Another steady day for Ryan. A fantastic smile when I saw him at lunch time. He was out in his buggy again today and the fresh air seems to be agreeing with him.

A good night and a good day so, nothing to report!