FRIDAY.
Went to see Ryan yesterday. Bob drove so I didn't have to take the train. Ryan had an unsettled day and had to be sedated a few times. Whilst he was not as bad as he was a few weeks ago, I was upset to see him  a little worse than I expected. In spite of everything, he still managed to give me just one, very welcome, smile.
He had a scan on his tummy where a little golf ball lump has appeared. In fact it turned out there are two lumps but the radiologist thought that they are not malignant. However she recommended further tests to make sure.
During the afternoon I became rather poorly and we had to leave earlier than planned. Once home some brandy and a few pills ensured I was able to get some sleep and I feel a bit better this morning.
I left with a strange feeling which I find it difficult to articulate.  I know he is going into the hospice on Monday with a view to getting him home as soon as possible.

Ryan is generally OK but going through a rather "twitchy" spell. I hope to visit him on Thursday.
 MPS Awareness Day - Wednesday 15th May 2013

WOW! Another good day yesterday with plenty of smiles. When you consider how bad he was just two weeks ago it is almost unbelievable. If Ryan keeps this remarkable turnaround going, he could soon be going home to be looked after there. 

Just spoken to Rachel (17.30) who tells me Ryan had a fairly good night and has has a good, SMILEY, day. He has also put on 2cm on his arms, which shows that he is digesting his feed. If all goes well he could be back home shortly.

I went to see Ryan yesterday (in spite of East Coast Rail's best efforts to stop me!) and found him to be in a stable condition. Apparently he did not go to sleep until 3am and that would explain why he kept dropping off. However, he was awake and watching DVD's for quite long periods. He also gave Elaine (who has a Hunter's boy and keeps in regular contact) and me a huge smile, which made our day.

Ryan has been awake all day and apart from a bit of discomfort, is doing as well as can be expected. He is still tolerating his food. I expect to notice a difference when I see him tomorrow; that's if the trains are running!

A good night with the exception of a bit of sedation; this may well have been because of discomfort from a mouth ulcer. Apart from a small fit, he has had a reasonable day too.

Just spoken to Rachel who tells me that Ryan has put on two kilos. This is really good news. She says that, this apart, Ryan is having some spells of discomfort but also some when he is alert and smiling. All being well I will be there on Thursday to see Ryan and give Rachel a short but much needed break.

Ryan had a not so good night on Friday and had to be sedated. He spent a lot of Saturday asleep. He only slept for 15 minutes last night BUT has had a good day today. Some smiles and he has been keenly watching Red Dwarf this afternoon. He has had quite a good feed and Bob says he looks a lot better than when we saw him last Monday.

Ryan is making slow progress with his new feeding regime. He had a reasonable night and not a bad day. One or two smiles for Rachel to boot. The main change is with his diet. He is now on a feed specially formulated for a child rather than an adult as previously. 

One day at a time!

Ryan is back in hospital and Rachel said he had a good day yesterday. It appears that he had a bad night and I await latest news from Rachel as to how bad it was. Bob said that he was a lot better when he rang this morning.
I had hoped to visit by rail today but unfortunately, an urgent doctor's appointment put paid to that.
LATEST. Rachel tells me that Ryan has had a reasonably good day. She has had some smiles and he is receiving good attention from the staff. As an example, the "teacher" came in twice today and read him a story both times - something that never happened in Manchester. Rachel also said that the "gastro" lady appears to be on the ball. So, we hope that the slow improvement continues with no more scares.

Ryan stayed an extra night in the hospice and we are waiting to hear what has happened today.

Ryan had a good night with the exception of some pain at around 4am. We now wait to see if he is to be moved back to the hospital.

There was some concern for Ryan this morning and Bob and I drove up to see him and Rachel.  We found him to be very, very thin and pale. However, in true Ryan style, he perked up as the day unfolded and even managed to give me a smile. The important thing for me was that there was very little discomfort displayed. As I have said many times, he is an amazing lad. 
Having said that, he is still very poorly and needs to continue taking some feed on board if he is to make progress. I hope to visit on Thursday and as I won't have Bob with me I will go by train.

Ryan is in the hospice for the weekend to give Rachel a rest. He returns to the hospital on Monday when he will have a 48 hour feeding break.

11.30.  Just heard from Rachel that Ryan is sleepy at the moment. She says that he was very smiley yesterday until about 4 o'clock when he got tummy ache again. She expects him to be in hospital for a good while yet.

The mystery of the "hoax" e-mail has been solved. Whilst away I was accessing my e-mails via my suppliers own site and the following one appeared. Coincidentally it was also sent whilst I was away and so made perfect sense to me. Naturally I did not look at the date and I received no other old e-mails. I have no explanation other than that at that time I was also using my suppliers own site.


Sent: 29 October 2012 01:30
To: Michael Briggs
Subject: Ryan

Hope ya got there safe not heard from you, ryan had rough night and day taken hi,m off milk got a doc from m house coming tomoz said i wasn't taking him to hos to wait arround when he uncomfortable dr kate on hol. Xxxxxxxxx

Please ignore the last blog as the information came from an hoax e-mail.
Ryan is going through a rough patch but the last information I received said he was pain free. I am struggling to make contact via e-mail or texts at the moment. I will be back on the 8th and that may be my next update.

Ryan is having a rough time again and his feed has had to be stopped. Rachel tells me that a doctor from Martin House is coming to see him and hopefully, offer some advice. Worrying times.