The daily feeds and backpack for Chris came within a couple of days as did the Fresubin nurse to show me how to use the pump with the back pack and the regime from the dietician came in the post, so Chris could start his daily feeds. He has 850mls of feed with fibre during the day over 7 hours to start with and then over 5 though Chris hasn't been able to tolerate it at the faster rate yet, it makes him feel sick, so he is sticking to the slower rate for now. It is much easier for both of us and once connected Chris can forget about it for a few hours. He still has his night feed as well.
I had my sister's family around for dinner on Sunday and I felt for Chris with all of us eating a great big meal. He had a very small bowl of vanilla ice cream, but he said he didn't fancy the meal anyway. It must be tough for him all the same. He still has his hot chocolate with Bailey's at bedtime, but now he only has a couple of sips and I put the rest down his PEG, well he needs the calories anyway and he at least gets to taste it.
The ramp for the front door is being built so soon Chris will be able to get in and out through the front door rather than the garage.
The palliative care nurse came too and she is always helpful and supportive and encourages Chris to open up a bit about everything.
We managed to get out on Saturday and went to see 'Blood Brothers' at the Hall for Cornwall in Truro. The show was brilliant and the HFC is excellent for disabled access. It was really nice to get out and enjoy ourselves for a couple of hours.
Boy how things have changed in 12 months. I can hardly believe the difference. I try not to think ahead to next year as it can be a little scary, but Chris isn't allowed to leave us yet and he is in no hurry to go. He has Chloe's graduation to go to in the Autumn of 2016 and his presence is mandatory, so give him a break MND and just get lost will you..enough already OK?
