A good day today with plenty of smiles to send his visitors from Ireland back home feeling happy. Ryan is now receiving an hours "schooling" each day at home. It is provided by those wonderful people from Springwater school, who have kept in constant contact over the many, many months since he last went to school. 

This was Ryan yesterday when his teacher got him ready for the Jubilee celebrations.

An exciting day for Ryan with visitors from Ireland and Ware coming to see him. He was not in a smiley mood but he looked relaxed and there was plenty of eye contact. The picture below shows him in 2006 with his beloved Laura and the one above today with her having just qualified as a Doctor. We (and Ryan) are all so proud of her.

A different day today with plenty of smiles. The treatment went well. There was a bit of a problem when his temperature hit 28 but slowing down the ERT flow seemed to help.

After his two not-so-good days, Ryan has had two good nights followed by two good days. This follows a slight change to his medication.

Not so good for Ryan over the last two days. Lack of sleep and a lot of diarrhoea. I just popped in to see him at lunch time and Fiona was about to take him out in his wheel chair, this in the hope it would wake him up. I then had a magical moment - I gave him a kiss on the cheek, he slowly opened his eyes, gazed into mine, and gave me a really big smile. He then went back to sleep.

This was Ryan this morning awaiting his Enzyme Replacement Therapy. He was like this for most of the morning. It was particularly unexpected as he had not had a good night. We had trouble getting a receptive vein but once we did everything went well. 

                              Ryan watching Shrek yesterday.

Another fit this morning but Ryan was looking relaxed at lunchtime when I popped in and even managed half a smile.

A quiet couple of days. Ryan had a fit yesterday but managed to receive is ERT.

14.00 Hours. Back from my nursing assistant duties where I found a smiley Ryan. Unfortunately, we were unable to access a vein successfully, so he has not had his ERT. Now scheduled for Wednesday.
At our normal Sunday family meal last night, Ryan was so relaxed and full of smiles. He looked as good as he has for a long time. This in spite of having had problems with a bloated tummy.
Every time we tried to take a photograph of him in this relaxed and happy mode. He stopped smiling. So, I regret, no photograph for you to look at.

Ryan looking thoughtful yesterday.

 

I'M BACK!
Ryan has had a mixed time whilst I have been away. I'm told that this week has been a smiley one though and I was graced with a few when I went to see him this afternoon. We bought a Ronaldo tee shirt for him on holiday and I will try and get a photo to post next week.