Saturday, May 02, 2009

Bye bye nappies

It has been a lovely day today. Most of the day has been busy sorting out deliveries of feed and their giving sets and containers etc. I never have the space for it all when we are fully stocked so it is always a challenge. I still get a kick of seeing all those bottles of feed arrive and looking at them knowing they will be tolerated and absorbed. It is soooo much nicer than a delivery of TPN! Today was even more chaotic than usual as we had our delivery of 2 months supply of nappies yesterday. I have 18 packets of nappies in a big pile in the conservatory and they may be there for quite a while as....drum roll.... William was in pants and dry all day today!! What a star! I decided to have a go at potty training on Wednesday and he used it straight away so I put him straight into the Thomas pants I bought as an incentive reward. He had a few accidents on Thursday and Friday and today was the first dry day. He is still in nappies when we are out and about and at night but I think it will be night time only within a few weeks, although I may invest in a travel potty as he does tend to go little and often. He thinks it is all very funny at the moment and is drinking as much as he can to 'make more wee'.

Potty training is one of those things thay got put on the shelf while we dealt with the more life threatening things. This will not be too difficult to catch up with but there are other things that need addressing now we are coming up to 6 months post transplant and William's health has stabilised (for the time being, I always say this because you can never be complacent after a transplant). One of these things is his cerebral palsy and maximising his mobility. We have never really done a huge amount of physio with him as it was not the priority. Now Wills is so well, we are able to see what of his physical limitations were due to him being unwell and what needs attention. He has a foot deformity and some tightness in his legs. His foot deformity would normally have been addressed when he as a baby but it was not in his best interests to do it all then and was out of the question once he was waiting for a transplant. I had a long chat with his physio about it this week and the time has now come for action to be taken. We are waiting to see his orthapeadic consultant but it is likely that William will have something called the 'ponseti method' carried out on his feet. This entails around 6 weeks with his legs in plaster up to the knee. Each week, the angle of the plaster is varied slightly to correct the deformity and bring his feet to 90 degrees. After that, he will probably need to wear boot joined with a bar for a proportion of the day. He is going to hate it and it seems a bit cruel when he is enjoying running around without his TPN. However, he has a great chance now to be healthy for, I hope, a good few years, maybe more. So, it is also cruel not to correct the deformity as that would mean he would almost certainly loose the ability to walk in time. He will probably still tire easily and use a combination of walking around the house and wheelchair for longer distances but that is still a lot better than being unable to walk at all. So, we will do this and we will keep him going through the process. I will ask that we wait until after the summer though. He deserves the summer on his feet, having fun first.

Despite being busy most of the day, I did steel some time sitting in the garden with a coffee and the paper. It is so lovely feeling the beginning of the summer and knowing that there is a very good chance we actually will spend it home together this year. Moments like that over the last few years have been spent in the knowledge that enjoying being at home and enjoying the garden would not last for long and we would soon be back in hospital.


Molly said...

Well done Wills, what a fantastic acheivement! :D

I'm sorry to hear that it looks like Wills will need some treatment on his feet, but it sounds like it'll make a real difference to his mobility.

Moll x x

Anonymous said...

That's brilliant about the potty training. I bought a potette for Max you don't have to buy the expensive liners for them nappy bags with a bit of tissue in work just as well. The potette plus is more robust and can be folded outwards to become a toilet seat
Best wishes