Ryan had an uneventful ERT session yesterday followed by a tricycle and buggy ride. He had a reasonable night and is looking good today. He did have a quite scary coughing fit but recovered after treatment and was soon smiling again. What a strong and brave lad he is.

Ryan with Becky's new dog - Mia

Ryan is just back from a "walk" and gave us the longest smile ever. He looks really relaxed and happy. ERT in the morning and let's hope this relaxed, happy mode continues. Becky took a photo and I hope to put on the blog in the next day or two.

Ryan has broken the 2012 record for the most consecutive good nights sleep! He was taken for a long "walk" in his buggy by Michelle and gave me a nice smile when I called in at about five.

Yet another good night's sleep and Ryan looks really alert today. Super carer/nurse Paula was treading a book to him when we called and his eye contact was great. Paula took him out in his buggy today and bought  a European lottery ticket. She says she is going to elope with Ryan when the ticket wins a million! A good day.

Ryan has now had three good nights sleep; almost unheard of these last few months. It may be a coincidence but these follow three days when he has been taken out, either in his buggy or on his tricycle. ( He doesn't pedal on his tricycle. His feet are strapped to the pedals so he gets plenty of leg movement which he otherwise doesn't!). Let's hope the better weather continues so he can get out more often.

Although he had a seizure last night, Ryan was quite alert for his ERT today. Nurse Paula managed to access a vein in record time and everything went smoothly. This afternoon his carer, Dave, took him out on his tricycle and then for a stroll in his buggy. A good day.

                                            Ryan yesterday - as promised!

A restless night for Ryan (and Bob) has been followed by a good day. Carer Michelle and I took him out on his tricycle this afternoon. We were out for an hour and a quarter and Ryan looked quite relaxed and with it. When we got back he thanked us with the most enormous smile - it made my day. When I can get the photo from my phone to my computer, I will post it on this blog.

I've come back to find Ryan looking quite relaxed albeit with a lot of secretions and wind. Apparently he had a great day at Springwater school yesterday. He appeared to really enjoy the children singing and dancing. What a pity they have now broken up for the summer.

                             Ryan looking very grown up at Springwater school yesterday.

Not a bad night and a few smiles this morning. As I write this Ryan is at Springwater School for a two hour session. The fact that he can go is something we would never have imagined a year ago! I am away for two days so the next Blog will be on Friday.

ERT day and almost a repeat of last week. Ryan was awake for the beginning and then slept through the rest of his treatment. Springwater came for an hour to play with him this afternoon and he has been OK since.

After a good night Ryan had a mixed day. He was lethargic again early on but looked a lot better later this evening. He had loads of wind and needed plenty of suctioning to get rid of it.

Ryan looks very tired and lethargic today.

At last Ryan had a good night's sleep (and half the morning too!). He looked relaxed this afternoon and was being really well looked after by his new super nurse, Paula.

Just back from seeing Ryan. He was looking really good and I took this photo of him.

MONDAY. Enzyme Replacement Therapy day and Ryan is awake when I arrive after another restless night (that's for Ryan, not me!). His vein is accessed first time and treatment begins. Ryan then decides to go to sleep and wakes up some three plus hours later, just in time to see the end of his treatment. He does appear to be getting his night and days mixed up.

Just back from seeing Ryan. Apparently he only slept for one hour last night but you would never have guessed it by looking at him. He was alert and apart from being rather "snotty", was looking good. No carer tonight so I hope he sleeps well for Bob. ERT in the morning.

Ryan looks really well this evening. Still plenty of secretions and wind but his face was stress free.

Just when you think things are getting bad - I visited Ryan this evening to be greeted by the biggest smile in ages. Apart from non stop secretions, he looked relaxed and very "with it". A good day.

Ryan had a reasonable night but was asleep when I saw him this morning. He looked stress free though. Yesterday his carers, Paula and Michelle, took him to the library and he has now joined. This means his carers will now be able to read  to him and take away his dependence on TV. A positive move which, allied to Springwater School's involvement, should make life more interesting for him.

Ryan is not at his best today as he is suffering from excessive wind and secretions. So, no smile for me this morning!
Afternoon. Just to complete the day, Ryan had a seizure  and Rachel took him to the hospital for a check up. Nothing unexpected yet found.

Ryan had a a disturbed night and was not looking too happy when Rachel went to collect him from Martin House today. The good news is that he is now at home and looking quite relaxed.
He is scheduled to to have two days times two hours a week at Springwater school plus three days times one hour at home. This is excellent news as he seems much happier after these sessions.