Jacob is going to respite today. This is the first time in 2 months. Talk about feeling like running a marathon with no break!! I love the boy, but his demands are huge. Huge for us as a couple and a family.
This afternoon we have a meeting at the hospital with the palliative care practitioner and our paediatrician and several others who are playing a large role in Jacob's care. These meetings are vital as they get everyone's head together to talk about where we are situated, and where we are heading. No one ever knows for sure where we are heading, but it helps to know what the experts are thinking. Hopefully we gain some insight. A lot of changes have happened in the last month, so I'm curious as to what they have to say about all that.
We plan on heading away for a couple days with the other kids. This comes with more than a slight
amount of mixed emotions!! I would be content to stay close by the
respite home, but the kids really need a change of scenery. We told
them this morning and, boy oh boy, excitement hit the roof. The trip was
cancelled last month, and at that time, I was so thankful for not
telling the kids the plans before hand. I would hate to see their
disappointment! We never want them to think that Jacob was a negative in
their life!!
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