10 am.just heard that Ryan is back in hospital and on IV's. He has not been tolerating his feed.

Not such good news today as Rachel says that Ryan has not been too good over the weekend.

FRIDAY
Rachel said that Ryan is not brilliant but not too bad. He did however manage to give her a lovely smile. I've said it many times - Ryan, you are amazing.



 Love it!

Not only has Ryan got back home but Rachel says he is doing a lot better since getting back.

It looks like Ryan has made another of his remarkable recoveries as, when we rang the hospital tonight, we were told he has gone back home.

Here's the photo I took of Ryan at the hospital on Thursday. I rang the hospital today and they said that he was fine and tolerating his feeds.You can see that he has put on weight since the last photo.

Ryan is poorly again.

Rachel tells me that Ryan is back on full feed today. He is still rather sleepy but was up and sitting on her lap at 6pm.

Bob, Rebecca and I went to see Ryan in Newcastle hospital today. He was a bit twitchy but looked a lot fatter than he did a few weeks ago, even though he has obviously lost a bit of weight over the last week. Whilst Rebecca went out to spend some quality time with Rachel, Bob and I stayed for a few hours with Ryan. He slept for about four hours and woke up looking as good as I have seen him for some time. He even managed to give Bob a smile and we had plenty of eye contact. He deteriorated a little bit before we left but over all he is making slow but good progress. Once again proving his great strength.I have a photo which I will download when I can retrieve it from my phone.

Rachel says he is settled and awake now (6.30pm) and has started on watery milk and reduced pain killer. Let's hope he is over the worst of this particular episode.

The hospital say that they seem to have got his meds right yesterday so he has had a couple of good days up until now (14.00 hours). I hope to be fit enough to visit on Thursday.

Apparently I gave some duff information on the last Blog. I assumed that "Ryan not good, same as last time " meant he was the same as the day before. Unfortunately, it meant that he was the same as the last time he was in hospital - this means he is very poorly and in a lot of pain.
It is a sad fact that Ryan is so strong that it is difficult to manage his pain. It is to be hoped that the doctors manage to find a way of doing so very quickly.

Just received a Text from Rachel telling me Ryan is still not good and about the same as yesterday.

Ryan had a rough night but was asleep earlier this afternoon.

I'm afraid that Ryan is back in hospital, where Rachel tells me they are trying to ease the pain he is in. Apparently the pain is not as bad as it has been in the past but still bad enough to cause him a lot of discomfort. Rachel is once again staying with him.

Not such good news I'm afraid. Ryan seems to be getting into a period of the bad stomach pains he has had periodically over the last few years. They are difficult to deal with and Rachel was seeking help from the hospice when I rang this evening. Let's hope for slightly better news soon.

When she heard Great-Great Aunty Anne was ill and asking to see Ryan, Rachel very kindly brough him down to see her. Whilst Anne couldn't get as close as she would have liked (she has an infection) she did manage to spend a couple of hours with him.
Ryan and Rachel both looked well and it was a pleasure to see them again. Some photos taken yesterday are below.

Great-Great Aunty Anne waiting for Ryan



Together again !



Looking relaxed with Mum.

 

Ryan is having a good day today.



Ryan watching football and looking good.


Another "better day" yesterday and Ryan was still asleep when Rachel and I spoke early this morning. Rachel has changed one of the medications in the hope that the new one will lesson the chances of seizures.
I had a MPS awareness day ribbon on yesterday and in spite of meeting about 50 people, not one of them asked me what it was for!!!!!!!

Another bad day yesterday followed by a better day today. I hope Ryan isn't getting back to the bad days of regular pain after a pretty good run of late.

A recent picture of Ryan on his "assisted" tricycle.

Not such good news as of late as Ryan had a bad day yesterday with the old problem of tummy pain. However, the good news is that he is a lot better today and we keep our fingers crossed for tomorrow.

Ryan is still doing well, the occasional  bit of agitation but otherwise OK and Rachel said she got some smiles yesterday.

Just spoken to Rachel who has taken advantage of a fabulous day's weather to have a BBQ. She tells me Ryan is OK and very alert. He has had a couple of seizures since we last spoke but as I have said before, these are unfortunately to be expected.

This is Ryan's new buggy and this is him in Newcastle yesterday. Still looking good.

I

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.

Ryan continues with his good progress with few upsets. Sarah  took Rebecca to see him and Rachel today. She says how pleasantly surprised at how well he looked she was. I hope to be seeing him at the hospice next week, when he is there for respite care.

I forgot to mention yesterday that Ryan has resumed his Enzyme Replacement Therapy. This is good but sad news for me. He started his treatment in April 2007. Until he moved up North, I assisted the nurses nearly every week in the six years which have since passed. 

THURSDAY.
Another couple of days with Ryan continuing to make slow but steady progress. He has had a seizure but they are to be expected from time to time, being one of the symptoms of his particular strain of Hunters.
After six years of continuous use, Ryan's buggy, given to him by David and Victoria Beckham, is to be retired. A new four wheeled version is on the way, courtesy of the NHS.

Ryan in his, then, brand new buggy. January 2007.

Another OK night and day for Ryan with some smiles. I am hoping to get a new photo of him next weekend when Sarah and Rebecca visit - weather permitting. No snow in Stobswood but loads in Harrogate. This was our garden today after half of it had melted!

An average night and day for Ryan as he continues his, sometimes slow, progress. We can't expect every day to be brilliant and the fact that he is making progress is enough.

THURSDAY.
Spoke to Rachel in the car taking Ryan out for a change of scenery  She said he had not had a brilliant night but was fine when we spoke. Still getting some smiles. The really good news is that he has put on some more weight, some five pounds since his last weigh-in and considerably more than his lowest some weeks ago. I repeat myself yet again - Ryan, you are an amazing and much loved young man.

TUESDAY
Message from Rachel to tell me that Ryan is OK, a bit twitchy but still smiling. He was snuggled up on a sofa watching a film with carer Paul.

A really upbeat report from Rachel today. Ryan not only looks better after a long awaited haircut but he is also feeling a lot better, with plenty of smiles. He has even taken to watching football on TV although, unfortunately, he won't get to see much of Arsenal!
I am hoping to get a Skype link set up so that I can not only talk to Rachel but also see both her and Ryan.

Only some four weeks ago there was enough concern about Ryan's prospects for Bob and me to travel up to see him, possibly for the last time. Now he is once again confounding everyone, including his doctors, with his progress. Apart from a small seizure today, he is comfortable and has settled well into his new home. He has also started putting on some much needed weight. Ryan you are one fantastic young man - keep it up.

Wednesday.
A good night followed by a good day with some smiles. Rachel describes him as "chilling out" - a positive sign. Ryan is having a hair cut on Saturday. This in itself is another positive sign, as he hasn't been fit enough to have one for many weeks.

Ryan appears to be holding his own at home . No spectacular improvement but no deterioration either. Rachel says she is getting a reasonable amount of smiles.

Rachel tells me that everything is going to plan so far, with no unexpected problems.

The first night back home has gone well and he has also had a good day. Well done so far Ryan.

The video below is one of Rachel's and my favourites. It shows him in happier times but he still retains the ability to bless us with his wonderful smile. We hope you like it.

HOME AT LAST!
Against some predictions Ryan has made it back home. He has had a chilled out day and can now get used to his new home. Well done Ryan and well done Mum.

Back from my visit to the hospice. Ryan looked washed out when we arrived. I was not surprised to be told that he had a seizure during the night, which explained how he looked. However, he improved in typical Ryan fashion as the day progressed and by the time we left, he looked quite relaxed. 
Home tomorrow and hopefully, he will continue his slow improvement.

Ryan had a good night again and has followed it with another good day. He has been baking chocolate "things" in the kitchen, has had a bath and hair wash and should look really clean when I visit tomorrow!

After a pretty good night, Ryan is now in St Oswalds. Some music therapy, a bath and hopefully, a good nights sleep. Fingers crossed for nothing to stop him going home on Thursday.

Apart from the occasional sedation, Ryan has had a couple of good days. Yesterday he was taken (in his bed) to the hospital cinema. An unique experience only spoilt by his missing the end of the show due to toiletry requirements!
He is of to the hospice tomorrow and all being well, back home on Thursday.

Just spoken to Rachel who tells me that Ryan was a lot better after we left!
He also had a reasonable night and an OK day today. Keep it up Ryan.

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.

Ryan had a good nights sleep but Rachel says he still looks wiped out. She also says he has been enrolled in the hospital school!

Spoke to Rachel who tells me that Ryan was fairly settled last night. He was up, washed and sitting on her knee. The plan now seems to be to increase his feed VERY SLOWLY over several weeks. Previously he has responded  well to starting his feed again but ultimately having severe pain and his feed having to be stopped. Fingers and everything crossed please. The downside of his return to hospital is that Rachel will have very little home time.

Ryan had an unsettled night. He is having a bath today and is back on milk. He is then off back to Newcastle hospital where I hope, should he be in pain,  they mange to control it !! 
I also hope that Rachel continues to stay strong for Ryan, as she has done for so many years.

Back from visiting Ryan in St. Oswalds where we (Kathie and Sarah) found him fairly relaxed and drifting in and out of sleep. However, he looked really frail and not at all well. He may be going back to Newcastle hospital tomorrow. I am not sure what they hope to achieve by moving him again but hope they can get some milk into him and that he does his usual trick of perking up again. I am so glad I was fit enough to make the journey and hope I am able to do so again soon. I do miss him and Rachel.

Rachel tells me that Ryan is not great today and having tummy ache again. She feels that something might be brewing and she is normally right when she gets this feeling.

I thought you would like to see this from Ethan's Mum on her CaringBridge page. Ethan has Hunters like Ryan and we went to see him in Ireland a few years ago. It is typical of the parents of Hunters children to find time to care and support others with the disease.

I would like to ask you to keep a very special boy, Ryan, in your thoughts, he is fighting Hunters and is having a hard time. We feel really close to Ryan and his family as we meet them a few years ago, they came from England for a visit and we fell in love with Ryan. 

Thank you all for checking up on Ethan, we appreciate the support and the messages are so uplifting... Thank you all.

Ryan has had a good day. He has tolerated his feed, had a spell in the Sensory room and watching a film in the lounge. He is settled and chilled this evening. 

Ryan has had quite a good day today.

Saw this on Facebook. It is Ryan in St Oawalds cinema.

Apparently Ryan is not so good today with some milk having to be removed from his tummy, as it was causing some distress. He is back into Newcastle hospital on Monday. I feel so upset about what looks as if it could be a return to more pain and I hope they can get on top of this recurring problem.

Spoke to a nurse at the hospice who said Ryan had a really good morning and sat in an armchair watching a film. At about 3pm he fell asleep and was still asleep when I rang at 8pm. I see from Rachel's Facebook that he is: "doing really well but talking about transferring us back to hospital". I hope this means that they think he is now responding to treatment, which would be better managed in hospital.

Ryan had a good night and a "poo" and has been out of bed sitting in a chair and on Rachel's knee. So far - so good. We have been here before, so I am not getting too excited yet. However, compared to the prognosis we were given in hospital, he is doing exceptionally well!

Rachel says Ryan had a bit of a tummy ache last night and today.

I am running out of words to describe how strong Ryan is. Every time I think he can't get better and just needs to be kept sedated and pain free, he fights back against all the odds.

After another settled night his milk intake is being increased to 20mls. As I write this (11am) Rachel tells me he is sitting in the children's lounge watching TV! AMAZING.

I asked Rachel if there is any news today and she said that there is a severe weather warning! She's not lost her sense of humour, thank goodness.
Ryan had a good night on the same amount of milk as yesterday but on full strength this time. He has been asleep most of the afternoon.
For those of you who didn't recognise Ryan's visitor yesterday, it was Peter Beardsley, one of Newcastle United's all time greats. I believe he signed a United shirt for Ryan. Still a great man then. 

Ryan had a settled night and is now on 15mls of milk an hour. This might not sound a lot but as long as he tolerates it, is a real step forward. We are keeping everything crossed that he continues to make progress after the traumatic time he has had recently.

Look who popped in to see Ryan today!
(Some ladies might not recognise him)

Rachel says Ryan had quite a settled night and is now watching a bit of TV between naps. She might try a bit of half strength milk later but obviously wants to take things VERY slowly.
LATER. He has had 60mls and has digested it. So far, so good.

Ryan had a slightly unsettled night but appeared to cope with the changes detailed yesterday. The next 24 hours should let us know if he continues to cope.

Just seen this on Facebook and couldn't believe my eyes. This was Ryan today, proving once again to be an amazingly strong boy.

Rachel tells me that They are reducing one of Ryan's sedations and trying to get some water and an antibiotic into his stomach. This after several days with nothing other than via a drip. He has been awake for a short spell and watching TV. All this is positive news and shows once again what a very strong boy he is.
276 views  today.

My Ryan is such a brave amazing boy just managed a smile and a kiss for me. Priceless. Come on son xxxxxx
Text from Rachel's Facebook page at about 10pm.

Ryan had a good night and is still asleep albeit slightly fidgety at 11.45 this morning.

After a terrible night Ryan has had a very settled day. Fingers crossed for tonight when Bob will relieve Rachel.

We visited St Oswalds in Gosforth, where we found Ryan is still suffering from bouts of extreme pain, interspersed with some long quiet moments. The nurses are able to respond quickly when the pain starts but it is distressing to watch him whilst the various treatments kick in. I understood from the doctor in Newcastle that they would try and keep him permanently sedated to avoid these  painful episodes but apparently this can't be done.
Someone queried my comment that Ryan was being sedated above the normal limits. Just to explain, the doctor told me this was the case, as normal sedation was not working.
I am not sure when I can visit again as, to add to my back and leg problem, I now have what appears to be a frozen shoulder. Compared to what Ryan has to put up with, this is nothing but it does make driving (with in effect one hand)  difficult.
Friday 345 Views.

It appears that Ryan is still having some uncomfortable spells. I hope to find out more when I visit this evening with Sarah.

Apparently Ryan had an awful night and had to be sedated to above the normal limit. Bob is going up to relieve Rachel tonight and Sarah and I will be there tomorrow. 

Becky, Bob and I went to see Ryan last evening. He is now in a single room and was heavily sedated. The plan is to keep him this way, as when he wakes up he is very soon in agony from the pain in his stomach. There is talk of relocating him to the local hospice.
We had a new record page viewing yesterday with 212 visits. I am sure Ryan would wish to thank everyone who takes an interest in him.
LATEST. Just had a text message from Rachel saying Ryan had a good night and is now watching TV! He is such a strong lad as there is no way he should be able to do this with the drugs he is on. Anyway, he is not in pain and has now drifted back to sleep.

Back from visiting Ryan at 6.30 this morning after witnessing him in considerable pain for many hours. After a significant amount of all sorts of pain relief, he eventually fell asleep at around 4am and was still asleep when we left. Poor Rachel looked washed out by then and is in need of some sleep herself.
I'm hoping Ryan stabilizes enough for me to relieve Rachel for a few hours so she can get some rest. Knowing her though, it will take some effort to get her away from him.

Ryan is now in HDU. Apparently he is OK until he gets something in his stomach and then he is in agony. We (Bob and Becky) are off to see him this evening.

Ryan back in hospital again. I will post further information when I get it.
LATEST. Ryan is in the Gastro ward and following an Xray, an excessive amount of trapped wind has been spotted. This can cause an immense amount of pain and we hope the doctors in Newcastle are able to sort this ongoing problem out.

I understand that Ryan had a very painful night and may have to go back to hospital. I will update as soon as I know. Worrying times.

Things got a bit worse and Ryan is now in hospital in Newcastle. 
LATER. Good news, Ryan has been discharged and is now home.

Ryan is not so well today and Rachel has called the doctor to see if he needs a course of antibiotics.

Rachel says Ryan had a bit of a rough night on Tuesday but was not too bad yesterday.