Another day similar to the last few. Awake early, some pain, some agitation and some peaceful moments. I was lucky enough to sit with him for an hour of peace this afternoon - heaven!

The picture on the left is the front of a very large farewell card from Springwater School. We will miss them when Ryan moves up North next week.
The picture under is taken today in my hour of heaven.

Yet another day similar to the last two.

Again not much change. Awake at 4 am but not too bad thereafter. I saw him at around 6 pm and had a nice long cuddle but still no smile.

No change today, much as yesterday. 
We had a record 95 visits on Monday!

ERT day again and quite a good one for Ryan. Vein accessed first time and not too much agitation.

Ryan's body clock is out of sync! He has been awake since 2 am. He is not too bad though, a little bit agitated but facially quite relaxed and alert. 

Ryan eventually got to sleep at 2 am and slept right through until 2 pm today. He was just starting to get agitated again at about 5 pm and the Buccle treatment is being tried again. It is now 7 pm and thank goodness Ryan is now calm. Let's hope he has another good night - at least when he is asleep he is not in pain.

A depressing day as Ryan has been very agitated all day. All sorts of things have been tried, including "Buccle" which often works but to no avail. I wonder if he has an ulcer or if his hernia is troubling him. Whatever it is we need to eliminate these two. It would be good to find out what is causing this extreme discomfort before he leaves for Morpeth where he will be dealing with people who no nothing about him and Rachel has to start from scratch.

Not a bad night and not a too bad day. Moving up North day is now confirmed as December 4th.

A bad night for Ryan. He looked quite well albeit rather fidgety when I saw him this afternoon.

After a reasonable night Ryan's ERT went rather well with no problems. He was a little unsettled at times but that was all. When Rachel returned from her latest trip to Morpeth, she was rewarded by a big smile. Only another couple of weeks or so before Ryan also leaves for Morpeth - for good.

A better night and day for Ryan. He was just beginning to get agitated when I left and a "trachy" change was being considered. All in all much improved.

Ryan appears a lot better today. He was a bit agitated when I arrived but nice and calm when I left.
I bought him a CD player and some ear phones and this is a picture of him using them for the first time today. He looks a real cool dude. Click on the photo to view it in a larger format.

FRIDAY
Another very uncomfortable night and day for Ryan. He saw Dr Kate this afternoon and is now on yet another antibiotic. His feed is to be given more slowly and we wait and hope for an improvement tomorrow.

Not a very happy couple of days with Ryan's food not being properly digested, Rachel, Dr Kate and nurse Jilly have come up with a plan and I hope to see an improvement tomorrow.

Another sleepless night for Ryan but luckily, we were still able to proceed with his ERT. He was a bit drowsy to start with and became a somewhat agitated during the morning. Although he lost what we think was a troublesome tooth, he still appears to be having some discomfort from the others. His tummy is still bloated but he has passed some wind and another messy poo. Mother home this afternoon and is busy arranging her move, 100 miles away, to Morpeth.

Just back from seeing Ryan. Most upset to see him so disturbed. His tummy is huge and full of wind which we are unable to shift, on top of this it is obvious that his teeth are still troubling him. He managed a bowel clearance just before I left and I was pleased to be able to help by holding him whilst Bob changed the ever wriggling lad. ERT tomorrow and I hope he gets a good nights sleep - he certainly needs it.

Not a bad day but not a particularly good day either. Ryan has lost his smile and we hope it will come back soon.

Ryan went to Springwater School today and his carer, Justina, helped him make a lovely poppy. He has also had a much needed hair cut and looks really cool. He was not too bad when I called in at 4.30 and I managed a nice long cuddle with him.

Ryan had a bad night and was asleep when I went to see him. At least we know he is not in pain when he sleeps.

Not able to see Ryan today but Rachel says he is OK and fit enough for three hours at Springwater special school tomorrow.

After a good night, Ryan was rather unsettled for most of his ERT today. After receiving some Diazepam he settled down and looked quite comfortable when I left.

Yet another unsettled day. ERT tomorrow and fingers crossed for a better day.

Yet another disturbed day for Ryan. I'm told that the treatment to a troublesome tooth should begin to benefit him tomorrow.

Ryan visited the dentist and a bad tooth was treated. No extractions as that would be dangerous. He is still not smiling.