It was our first trip out with Chris connected to his feed backpack, but it was OK, the only time he has to think about it is when he wants the loo. Then I have to unhook it from the back of his chair and put it on his back. He has the odd Aero mousse or a couple of Lindt chocolate balls a day, but otherwise eats nothing now. Even his hot chocolate and Bailey's ends up down the PEG tube after a couple of sips. Yet my brave boy still smiles, I have no idea how or why, but it is part of his fighting strategy I think, to not give in to it.
Chris's feet swell up a bit now so I have to encourage him to keep his feet up when he can.
Chris's Dell tablet that works his Tobi i has just died, I rang the support line as the eye gaze programme kept crashing, I was told to shut down the programme via the switch and now it won't come back on again. The people from The Dame Hannah trust are coming down again soon and I think they said they would be giving Chris the larger Tobi i computer, just as well I guess. I have no idea what happened to it, good job Chris doesn't rely on it entirely yet. I asked his speech therapist a while ago for some old fashioned speech boards for Chris to get used to for times like this in the future as another way to communicate and she has managed to get one for us which is great. As I said his support team down here are just wonderful.
Well life goes on in this MND dominated world. I wish with all my heart it wasn't so, but it is, so all we can do is make the best of each day and always live in hope, well we have to, what else is there with a disease like this? We must never give up hope of a cure one day.
