This morning Pete woke me at 2.30am - yes, wet bed again, but this time it was the leg bag had disconnected from the night bag - ffs why???? It was exactly one week and one hour from the last disconnection! I can't really tape that connection up as it would have to be removed every morning and replaced every night and it takes ages to get it off. So again change sheets etc and turn mattress, the only difference was that Pete didn't need to get changed - just wash his legs! Once was bad enough, twice is a step too far - I dread next Sunday night, what will whatever, whoever think of next? The trouble is that I can't control my thoughts and they are there before you know it. I feel we are fighting a losing battle on every front and it will break us in the end.
The District Nurse came today for a weight check and, although Pete hasn't put on weight, he hasn't lost any more. This is a bit disappointing as I was sure he would have put on a bit. It was a new nurse so had to go through his diet again, and she said his weight still needs monitoring regularly. She also took blood for a full blood screen, so await results of that.
Letters, words and sounds aren't going anywhere although Pete can now write my name - that is, he can if it is the first thing he writes!! This morning we started with 'Martin' and, for the first time, he got the first 4 letters but then he couldn't do my name - where is the logic in that? It is very similar with sounds, he can usually do the first 6 or so sounds first time but then it all goes to hell and he has to make a big, big effort to do them again and never gets them right straight off. It is so hard to see him struggling and getting upset with himself. Is it worth putting him through it every day? But we have to keep on trying and live with a bit of hope.
We are really struggling at the moment.
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