How to play?

Play has become our main focus now that we have conquered eating. I think that Tobes is definitely getting frustrated and bored and we are trying everything we can think of to find things that will grab his attention but we are struggling. One of the things we have discovered is that Toby enjoys the rough play that might be typical of a normal toddler - his face lights up when I hold his hands to bash his blow-up ball or when I shake his legs really quickly so that he shakes all over - its even better when he's lying on the bed after his bath. He's quite good at hitting his hanging toys but his enjoyment of these only lasts a short time before he's shouting and showing he's unhappy. We have tried to photograph the look that comes over his face when he's enjoying the shaking game but the camera doesn't quite capture the way his eyes light up and we can almost see the old Toby in his face. The picture shows him on the bed after his bath when I am shaking his legs - he is almost smiling - this is the closest we have seen to a smile since Easter Sunday when we enjoyed lunch and the afternoon with Grandma and Grandpa.

Recently we have noticed Toby is having more sudden jerking movements - he will suddenly turn his head very quickly to the right and hold it there for a few seconds before coming back and carrying on with whatever he was doing. This was a bit tricky to manage in the bath as he ends up putting his face under the water but we are a bit more prepared for it these days. A new jerking movement has started this week in which Toby looks as if he has had a sudden electric shock - his whole body moves and his eyes take on a rather surprised look. We are not sure what these jerks are - there is no sign of altered consciousness and he carries on with his activity. We have an appointment with the Community Paediatrician this week so maybe she can shed some light on the movements.

Toby asleep on the floor in the afternoon. Sometimes he just drops off wherever he happens to be.

Night time sleep is still a problem. Toby is now waking around 3.30am every night (well morning really) and generally doesn't go back to sleep until about 9am, having had his porridge or weetabix at 7am. I don't think its hunger waking him - I tried putting his last liquid feed on at midnight rather than 11 but he still woke early - this time at 2.30am and he can't have been hungry. He could be uncomfortable but changing his position doesn't result in him returning to sleep. He does seem to need more sleep than he gets when he wakes at 3am but he just isn't able to sustain sleep throughout the night - this morning Tobes woke at 3.30am, went back to sleep at 9.30am and woke up at 12.15pm for lunch. I am sure he would feel much better if he could get this sleep all in one chunk. It would be so much better for everyone really if we could find a way to help him sleep until at least 6am - Martin and I are rather tired and even Mat is being disturbed at times. I am really not keen on trying sedation - he's on enough drugs as it is so we need to find ways that he can use up more energy during the day.

Toby fell asleep in the standing frame during physio last week! He still doesn't like the standing frame but will tolerate it for about 15 minutes at present.

Toby and Daddy in the morning!

Toby finally had the MRI and CT scan on Friday. He was really good and coped well with being starved (he had to have a general anaesthetic for the scans) but it was fortunate that he ended up being first on the list in the morning so he only had to go without food for a couple of hours. After being brought round from the anaesthetic Toby slept for another 1.5 hours - we sat next to him and read the newspaper for the first time in months whilst waiting for him to wake up. On the way out of the hospital we stopped by the ward where Toby spent 16.5 weeks between leaving PICU in April and finally being discharged home on 1st August. It was lovely to see some of the nurses we had spent so much time with and they were pleased to see Toby was looking so well. We will wait for the results of the scans to find out whether Toby can be put forward as a candidate for cochlea implants.

We have a new routine of getting washed and cleaning teeth each morning. Toby seems to quite like dipping his hands in the water but he isn't so keen on cleaning his teeth.

It seems that we will be going to the Rehab Centre from the week of 20th Oct. I am waiting to find out what we need to take with us and what will be provided - they have said they will provide Toby's food but I might take his meals with us each week - I spend so much time cooking different casseroles and other dishes for him and I am quite keen that he continues to get the variety of fresh food that he has been having. I am sure their chefs are competent but I'm not sure if they are familiar with Annabel Karmel's recipe books?!! I also need to control the amount of fattening foods he has as he is so very big for his age - when I cook I know exactly what is in each meal. He does still have some treats though - this week we introduced Toby to Syrup Sponge Pudding and Custard and he ate this pudding with great enthusiasm!

Lisa xx