Not too bad last night and a quiet time for Ryan today.

Ryan is quite subdued today after a rather disturbed night.

A good nights sleep and a big smile when we got him ready for his treatment this morning. A vein was accessed and he then went back to sleep until the treatment was finished.

It looks as if Ryan may be sickening for something. Not a good nights sleep and no smiles today.

Another good night but average day.
For those of you joining this blog, you can find out about Hunters Disease by accessing this link:
http://mpssociety.co.uk/uploads/Guide-MPS%20II.pdf

Another good nights sleep has set Ryan up for his second ERT of the week. This is to make up for missing it last week. He is not quite as smiley this week and a bit restless at times. However, he is not showing signs of any significant pain.

A good nights sleep again but Ryan is a bit subdued today.

Ryan was still awake when I arrived last evening. However, he had a good nights sleep and was awake but a bit fidgety, when I arrived for his treatment this morning. A vein was located and everything proceeded reasonably well. He fell asleep at about 10.30 and was still asleep when I left.
The Willink team who came to see him last week at Martin House are apparently doing blood tests to see if he is building up anti-bodies to the Enzyme Replacement Therapy.

Once again Ryan has amazed me. He was awake most of the night and is still awake this morning and smiling! We are going round to see him this evening and I wonder if he will still be awake. Watch this space.

After a bad night Ryan looked very relaxed when I went to Martin House yesterday. Smiles were few and far between but he looked very "with it" and there was plenty of intense eye contact.
Today Rachel is meeting with Dr Ed (we think) from the Willink at Manchester, who is visiting Ryan at Martin House. It will be interesting to hear what he thinks of his recent progress. Ryan then comes home later this afternoon.

Went to see Ryan in Martin House. Got a great big smile there yesterday but none today. However, he had a good nights sleep and I was able to enjoy an hour and a half's cuddle, as we watched Cbeebies together. I will visit again tomorrow and he returns home on Thursday. No ERT this week as there is no one available to cannulate! So, two treatments next week.

Ryan had a very good nights sleep and had a good day today. He went to the donkey sanctury this morning and out in his buggy this afternoon. A few smiles when I saw him completed a good news day.

It looks as if his diary has at last been closed by BT. Some time ago the British Library Web Archive asked if they could archive it for posterity. They said it would take a long time to get round to it and it looks as if they have now missed the opportunity. A great pity as it covered a large part of Ryan's life.

A vein was accessed and Ryan received his Enzyme Replacement Therapy yesterday. He slept through most of it and had a generally peaceful day. Not quite so peaceful last night and no smiles today so far. However, he is still generally free of major pain.
The next entry will be on Saturday as I am away until then.

After failing to find a vein for Ryan's treatment on Monday, we failed again on Wednesday. Next treatment scheduled for Monday, when we hope for better luck.
There is however had some good news in that he has had quite good nights and not bad days since my last blog.