1 month since discharge

His new haircut - such a grown up Toby!

Food again!...

After changing to the baby formula milk Toby started waking up earlier than usual so after two nights of getting up at 2.30am we decided to try replacing his 10.30pm baby formula feed with the complete liquid feed to see if it was hunger that was disturbing him. He has slept a little later (waking now between 4 and 5am) since making this change so we will stick with it as long as he doesn't put on too much weight - the complete feed is higher in calories than the formula milk. This week Toby has also increased the amount of solid food he is eating at each meal so I think stopping the complete feed during the day was the right thing to do as he is hungrier and consequently eating more but maybe not quite enough to get him through the night.

This is Toby in the Bee Chair - we only use this for meals at the moment so he knows what to expect whenever we put him in the chair. It holds him in a good position to eat although its not the easiest thing to get him in and out of as it has many straps and adjustable parts that have to be done up and undone each time. The chair height is adjustable so it can be lowered to the floor or raised up to the height of the breakfast bar.

Toby is having weekly physio sessions with the physiotherapist from the Child Development Centre and we have lots of exercises to try and do with him between sessions. Toby shouts alot during physio but he will generally tolerate the positions for a while. Mat has been helping out - here Mat is encouraging Toby to stay in side lying and to let his head drop down to the mat.

Mat finally had his hair cut today (I think!) - just in time for school tomorrow!

I am not really doing an official physio exercise here but just playing with Toby in the morning.

Toby still enjoys his baths although he doesn't close his eyes and lie back in the same way as he did whilst he was in hospital - I think that then the bath was helpful in reducing the pain from the increased pressure in his head - our GP wondered if the drop in blood pressure that happens in a warm bath led to a similar reduction in the level of pressure in Toby's head and thus gave him a little relief from the pain. Its very hard to remember the pain that Toby seemed to be in for so long when he was in hospital - Martin and I tried constantly to work out what was causing the pain and to make Toby more comfortable but we didn't know that hydrocephalus was a potential consequence of meningitis until it was finally identified through a CT scan. Hopefully the shunt will continue to work effectively as Toby is so much more settled and hopefully more ready and able to engage in the tasks necessary to acquire new skills.

We visited the Rehab Centre yesterday. Despite this visit, it is still quite difficult to decide whether and when Toby will benefit from going as we really only saw buildings and empty rooms. We didn't have the opportunity to speak to any therapists but I think that even if we had, it would have been difficult for them to discuss how they might work with Tobes without having met and assessed him. We did speak with a doctor who immediately said that Martin or I would be able to stay in the same room as Toby if he does go to the centre. The admin officer showing us around was less sure about this but the doctor was quite firm in her belief that this is completely appropriate for parents to do when little ones are admitted. This was a big concern of mine as they had originally said we couldn't stay in the same building as Toby and we weren't prepared for him to stay without one of us so at least this problem has been resolved. I think we may only be able to find out if its the right thing for Toby by trying it out. We would stay at the centre from Sunday to Friday and return home each weekend. The doctor we spoke to suggested we have 3 months at home to recover from hospital and then go to the centre around Christmas. We are hoping to talk to a family whose son has undertaken a programme at the same centre to find out what their experiences were like and hopefully this will help us make a decision.

Play?

Toby has been hitting out at the toys that I have hung from a string above him and also hits and knocks over a blow up toy - we are not sure if this action is deliberate and he will hit out when the toy is not in place but watching him it seems that he hits out less often when the toy is not there so maybe he is trying to knock it down.

So after our first month at home we are managing and Toby seems to be settling and making some progress. We are so pleased that he is eating solid food - the next step will be to start tackling liquids but we will wait for advice from the SLT around this as I think we will need to start with thickened liquids and I am not sure how best to offer these to Toby. Sleep is ok although I am up and down quite a lot to reposition him and check on him when he wakes early in the morning. Tobes is also showing some signs that he might be able to start playing which is good. We are beginning to reduce some of the medication that he has been on - much of it was increased in the attempt to overcome the problems that were actually being caused by the hydrocephalus so hopefully some of this can be significantly reduced. When we were in hospital we were always shocked by the amount of waste incurred by the disposal of so many syringes and other bits of equipment. After a month at home my hands are falling apart from all the washing up and I am tired of standing at the sink numerous times each day - oh for disposable syringes!!

Two-way communication is the thing we are really hoping for and it just seems so hard to find a way to start without vision or hearing. Toby is going to be assessed for cochlea implants so this may be one way of communicating if he is suitable - he is having the MRI scan next week as part of the suitability assessment so we will wait and see if he passes this first hurdle.

Lisa