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.

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