Chris was also meant to see the speech therapist today, but it was cancelled as she is sick. We have been experimenting a bit with some more different foods that Chris might be able to eat. He loves his cake, but it was causing way too many choking episodes. I thought I'd buy some malt loaf and Jamaica ginger cake as they are both moist, sticky cakes and so far Chris hasn't choked on them which is brilliant. I also made him some Russian cream which is a Cornish, custard type of pudding. I've never actually made it before, but Chris's sister gave me the recipe and Chris is really enjoying that too along with some jelly. It's all a game of trial and error for now though the neurologist did tell him that he will be totally reliant on the PEG to feed him one day, but not yet, for now he can still eat some things.
Another few days living with MND has gone by and mostly we just live each day as it comes. We both miss Chloe and she is a little home sick, but in a month she will be home for her Christmas break. This term was the worst last year, I think the dark evenings and miserable weather don't help. At least in this modern world there are plenty of ways to communicate. I know Chris misses her loads.
For any of us our children are our reason for living. For anyone with a terminal illness like MND this is especially so. I know Chris will fight with every last cell in his body to be around for as long as he can. MND is ultimately in control, but we are both great believers in inner strength and that it will help to put up a good defence and stall things for a while if we fight, just the same as giving up can bring things on faster. Giving up is just not an option. Fighting is a requisite.
