At last we have managed to get Skype working and I have had my first contact with Rachel and Ryan.   I can at last see them both and hopefully, get a smile from Ryan - eventually!  He looked great but I don't think he has quite got the hang of it yet!
I took photos but for some reason my computer will not let me download them. I'll work it out one day!

Rachel rang and said she was sitting watching Grease with Ryan who is still doing well.
A correction. The chair in yesterday's photo is just that and not his new buggy!

A picture of Ryan in his brand new buggy. Notice the cool hair cut. Notice too how well he looks. He is heavier now than when he left Harrogate and looks like a teenager!

Rachel tells me that Ryan had a check-up yesterday and the doctors are pleased with his progress. One doctor who last saw him two weeks ago, said she could see how much better he looked in just that short time!

MONDAY

HAPPY 14th BIRTHDAY RYAN

A nice visit to the aquarium and then home to this great cake.



The worlds greatest Grandson.



Just caught Rachel this morning, on the way out for a walk with Ryan. He continues to be OK with just the normal Hunter set backs from time to time.  All in all, still good news.

                                               Saying hello to the donkeys down the road.

Just spoken with Rachel and the good news continues. Rachel was on the way back from a shopping expedition with Ryan; he is a great people watcher (especially the ladies) and will have been in his element.
This followed a really good night and a laid back morning. Keep it going Ryan!

The steady progress continues. No news is good news!

The last of the promised hospice pictures.

My favourite picture of Dr Ed (as Ryan called him). 

 2007.

Ryan is still doing well albeit a bit twitchy today.
Sad news today that Professor Ed Wraith, world authority on mucopolysaccharide storage diseases, has died. Ed looked after Ryan for many years and was voted Well Child, Best Doctor in 2009. 

Ryan still OK with nothing new to report. Another photo from Sunday at St Oswalds. This one taken by carer Sarah shows Ryan and I playing the Bongo.

What are you looking at then!

The first of yesterday's photos.

What a difference four weeks have made. It was only four weeks ago that Bob and I were last at St Oswalds hospice. The difference is amazing - Ryan has put on over five pounds in weight and was relaxed and alert for most of the time. He was suffering from loads of secretions for 50% of the time but this did not appear to upset him too much. Although we got no proper smile, we did get plenty of eye contact and he displayed a lot of interest in what was going on around him. The only downside was the short time that he caught a tooth in what remains of his lip ulcer. This caused him a lot of pain. 
I have photos taken by carer Sarah, Bob and myself and will print them over the next few days.

Next report on Sunday, hopefully with another photo.

I  am pleased to tell you that Ryan continues to astound the medical experts yet again and is making steady progress. I am looking forward to seeing him in the hospice on Sunday. In the meantime, you might enjoy this photo of Ryan with an Easter chic given to him.

This blog has had a high of 371 visits on one day, to a low of 27. It would be nice to know who reads it on fairly regular basis. If you are one of these, would you kindly click on "no comments" and enter your  name. Thank you.

For those of you who have asked what Hunters is, I have pinched this explanation which I found on Facebook.
All our cells accumulate garbage and normally have garbage trucks. MPS II cells are missing the garbage trucks (enzyme). Some cells are like the kitchen and accumulate more garbage (joints, heart valves, etc.) and so they get worse. The rooms end up bulging full of garbage until they don't work very well anymore.