So despite pulling the fluid out of the cyst, there was no significant improvement. The better part of the day is in the afternoon after a nap, which Petya takes 3 hours a day. He is more alert after such a good sleep, communication is better. Occasionally he will say one word when I explicitly put pressure on him that I expect a response. But mostly we communicate with body language, with looks.
Physically, handling him is difficult. That is why I am now intensively starting to look for caregivers who can come to us during the day and help me move Pete from the bed to the wheelchair, do his morning hygiene and toileting, and possibly feed him.
There is a lot of administrative work around securing such a person. At the same time, these people are not always available in the region, which I am struggling with at the moment. But we go step by step, because there are still many things to deal with during each day, not only around Pete, but also around the children and the household. And of course, I also have to think about not getting injured and staying healthy and strong for all those who need me at home right now.
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