I took the three little ones to see our Physiatrist today. The baby
and our 7 year old are doing really well and there are no changes. Our
5 year old, Topher is not doing so well. The physiatrist would like us
to have him admitted to a rehab hospital for intensive PT for 2-3
weeks. The closest one is almost 4 hours away and Topher can not be
away from me. I would have to stay with him. That would leave my
other 4 children (2 with significant medical needs) and my husband
(with a vascular brain tumor and memory problems) home alone. IT WOULD
BE IMPOSSIBLE. Topher has PT at school 3 times per week and now at our
local hospital 2 times per week. We work every evening with him in his
stander and with the walker. We stretch him at least 5 times per day.
I feel like he would not handle anything more at home. So, what do I
do? The hospitalization is clearly not an option. Has anyone had any
luck with getting PT in there home? My other issue is that Topher does
not walk at all and can only stand with full leg braces and
assistance. He is not motivated to walk. He seems perfectly happy to
crawl or use his wheelchair to get around. Part of me feels like "hey,
this kid isn't even supposed to be alive, isn't this good enough?".
But another part of me wonders if we don't push him now will he regret
it in the future? Help.
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