14th May: PSB

Hi everyone

PSB? Personal Social Best. I took Mike on a wheel chair ride around the block to buy a coffee, because it was A GORGEOUS WELLINGTON DAY AS USUAL.
Quite a collection of his uncles(2), aunts (2 sort of), cousins (1), sister (1) and brother-in-law (1) were at the cafe because another cousin had rugby nearby. Mike coped well with this collection of rellies all talking at once, plus the crowded cafe plus the cafe music. I thought it would confuse and tire him, but he coped well and was not too bad by the time we got back. How the pleasure of the simple kicks in - just being able to be out in the sun, with family, choosing his own food etc. So another set of high fives.

It is easier to manage this sort of trip on the weekend because there is no therapy to tire him out.

Regards to everyone

Lee

10th May: Bye Bye P.E.G.

Another good step along the way today. A nurse came from Endoscopy (sp?) and pulled out the P.E.G.feeding tube into Mike's stomach, so now it's All by mouth. A fine change from 'Nil by mouth'. When I write 'pulled', I mean literally that. Amazing really. So now we have what many of us would regard as a nice challenge: How to whack heaps of calories into Mike, so he doesn't lose weight. The food still has to be of fairly uniform texture because he can't manage eating hard stuff, or chewy stuff, or too much variation in texture. We celebrated with a latte and a muffin in the hospital cafe.

The physio is going fine. Each time I watch I can see that Mike is getting his muscles a bit more stabilised and under control. In some ways it is very like gradually building up the weights in the gym. He starts out okay and then as he tires his muscles get wobbly. Because Mike is having to concentrate on each aspect of muscle movement, it is amazing to realise some of the complexity of even a small movement - stabilising other muscles, focusing on the one you want to move, controlling it, positioning the rest of your body to manage, bringing in to play the associated muscles etc.

Yours muscularly

Lee

9th May: More Milestones

I arrived at the rehab ward this morning to find a tired, beaming Mike emerging fromthe shower. He had managed his whole shower and shave himself and was most pleased. We'd had a conversation just the day before about the frustration of not being in control of things, so this was a good step.

Next the Team Leader came and said to us that they think Mike can cope with sometimes having two visitors at once now and to schedule visits between 4 and 8pm, so that makes life a bit easier. They also think he can cope with e-mailing too, so once we have him set up with a computer of some sort, expect lift off.

Finally this afternoon the Physio shifted Mike on to a walking frame. He still needs someone supporting him, but this is really good progress even just since last week.

One pleased Mike.

Lee

May 8th:Peaceful progress

We've been a bit quiet on the blog lately, but Mike has continued to make really good progress. Each day his walking is getting a bit stronger and his general posture is better. He can now sit in a regular chair to eat his meals, without needing the side and head support of a wheel chair. So with support he can walk out to the dining area at Cavit then just sit and eat. The sheer move to normality of this is a great joy to us all.

The cognitive testing proceeds when he is not too tired. He is doing pretty well, but as each level gets more complex he has to concentrate really hard. The therapists keep saying it is not pass/fail; that it is an indicator of where they need to focus the therapy interventions. However, I can see that as far as Mike is concerned every single question is definitely pass/fail. The difference in his mental reasoning between alert and fatigued is very marked and the switch is really sudden, but they say his stamina will increase.

We are gradually increasing Mike's visitors,now that the OE exodus seems to have stopped and we have a better idea of the rehab schedule each day. We don't have many slots because the day time during the week is taken up with rehab and resting most days. If you can find time to go out and see Mike, could you make sure you phone me (Lee) first and we'll arrange when to fit it in. As we've said before, the fatigue thing is so crucial we just have to be really careful about how we manage it. Generally, the evening or weekends will work the best. Mike can only cope with one person at a time and he needs to rest after each visitor, so it needs a bit of organising.

Regards

Lee