A good night last night and still rather sleepy during the day.
I am off on holiday for two weeks and am not sure if I will be able to keep this blog up-to-date whilst I am away. So, do not panic if there are no entries!

Not a good night but a better day with quite a few very welcome smiles. Ryan continues to amaze us. He is pictured on his birthday with Aunty Sarah and a singing duck!

                                   Rebecca reading from RYAN'S 13th Birthday cards

Where to start! Sunday was Ryan's birthday and the day he became a teenager. He was awake for all but 40minutes on Saturday night and on Sunday morning he finished up in hospital with, what was eventually diagnosed as, a perforated ear drum. So, another course of antibiotics - something which is virtually the norm for him. God knows what pain he was experiencing and how frustrating it must be not to be able to tell people what and where it is.
On his return from hospital he stayed awake for the rest of the day and Rebecca read from the many cards he received. Eventually he went to sleep and had a good nights rest at last. Today he received his ERT treatment. He gave us a smile at the beginning and then slept through the rest of it. He was awake when I left at one  and I hope he has a good rest of the day.

Not a very good day which, after a not too bad night, started with a fit. When I visited at lunch time, Ryan was awake but suffering some discomfort from we know not what.  However, he did manage to give Rachel a little smile.

A quiet couple of days for Ryan. No better but no worse.

Ryan had a fit on Friday night and was unable to go for a donkey ride on Saturday. He was OK Saturday night but had little sleep last night. Remarkably, he was alert and gave us some good smiles during his ERT this morning.

This a picture of Ryan on a donkey last November.

Ryan continues to be a bit unsettled and needs additional medication to ensure some sleep at night. He does not look particularly happy at the moment. We are changing his antibiotic medication in the hope that this will help.

Whilst Ryan is not having bouts of extreme pain, he does not appear to be comfortable (most of the time) and smiles are hard to come by.

At last, a really good nights sleep and he didn't wake up until 11.30!

Not particularly happy but at least Ryan had a good night's sleep.

Ryan is still not having a very happy time.

Two nights with no sleep for Ryan. I don't know how he does it. Not easy for Rachel and Bob who also have no sleep. Ryan is also having a lot of wind and secretions of late and consequently is not looking very happy these days.