I'm Back!
Ryan has had an unsettled time whilst I have been away. This morning he was looking a bit dozy but was not too agitated - he is on Diazepam. Tomorrow we are taking him to the paediatric dentist in Leeds, when we hope he will be able to sedate Ryan and do some remedial work on his teeth.

Another unsettled day.
I am away for one week - in Turkey sorting out the problem with Syria!
If I get any news on Ryan I will try and let you know via the IPad.

After a disturbed nights sleep Ryan was awake for his ERT. Unfortunately, we were unable to access a vein and there will be another attempt later this week. As soon as the nurse had gone, Ryan went to sleep. He was still asleep when I left at lunch time.

Another disappointing day. I feel that the pain killers are not strong enough and hope alternatives can be found - easier said than done with several being discounted owing to his tummy problems.

It was true good to be true yesterday, for today it was back to an unsettled day for Ryan and strictly no smiles.

               Remarkable!   Remarkable!  Remarkable!

There is no other word to describe Ryan. Following yesterday's blog and just as I was getting depressed about him, he suddenly rediscovers his smile. Maybe the pain killers are kicking in at last but whatever it is, long may it last.

Ryan, I have said it before and I say it again, you are  one amazingly tough person.

Photo taken late last evening with Bob' phone.

Bad news today. Ryan had a long seizure last night and looked washed out when I saw him this morning. He often makes a remarkable recovery and I hope this is the case when I see him tomorrow.

MONDAY. Treatment day, which went off without a hitch. Ryan was not too bad but was still having trouble with his teeth. I hope his new prescription will contain better pain killers.

I bought a Chewy Tubes for Ryan to chew on instead of his hands and he has not let go of it all day. Combined with the pain killing regime, this has ensured a better day for him. It was a pleasure to have a long cuddle without him wriggling about in pain. We will see what tomorrow brings.

Ryan looks a little bit more with it today. He is receiving some pain killers and that seems to have settled him somewhat.

Off to the Paediatric Dentist today. He was very thorough and confirmed my fear that Ryan is indeed suffering with pain from his teeth. He has new teeth trying to grow and they are pushing his current teeth into his cheeks and causing considerable discomfort. He has told us to keep him on a high level of pain killers and to bring him back on November 23rd. In the meantime he will contact Ryan's doctors to see if he would tolerate an anaesthetic if that becomes necessary.

No change today, Ryan still looks VERY poorly. Dentist tomorrow to see if there is anything obvious in his mouth which is causing the distress.

Ryan is still looking very sad. Apart from the now normal excessive secretions and tummy problems, he now appears to have some sort of teething troubles. He is putting his hands into his mouth almost continuously and when given a teething ring will do the same with it.

Ryan looks really poorly and has a sad looking face. Not good.

Ryan's ERT went well this morning. After a good nights sleep he was more alert than yesterday. His main problem today seemed to be a problem with his teeth. It's difficult to be precise when he can't tell us what the problem is.

No change today I'm afraid. ERT tomorrow.

I am rather concerned following my visit this afternoon. Ryan seems to be in  more discomfort than of late and he looks rather sad. His face appears to be bloated and looks a bit like it did last year in Manchester, when he was very poorly.

Ryan is going through a rough time. Most of the problem is with his tummy and it is proving difficult to give him some relief.

A quiet day!

Just back from Ryan's ERT which was successful today. He was a bit agitated to start with but settled down and went to sleep. When he woke up he looked a lot more relaxed and even gave me a half smile. He is to receive a catchup treatment on Thursday, to make up for missing last weeks.

                I took this photo on my phone whilst he slept.