Every Tuesday evening they have Pet Therapy. Ethan normally gets pretty smiley with the dogs and cats, but today he took a special liking to one of them. We took his socks off and Ethan gave his little friend a belly rub with his feet. They both seemed to enjoy it.
Today, We’re still at a loss when it comes to sleep. Literally. Last night he was awake from 3-6 am, then napped for just under an hour and was then awake till 2pm. He’s tired, we can tell, but his body just can’t settle. Physio believes that maybe his dystonia is part of the problem, as we can tell he’s tired but he keeps arching and thrashing, and get quite frustrated after a while. A good plan needs to be put in place. They’re hoping OT and PT will help with his tone, which will hopefully help with his sleep. But in the meantime, we need to figure something else out because he needs sleep. I need to sleep. We can’t keep functioning on these short nights and it throws off his day as well. It feels so ironic that 1.5 months ago we were begging him to wake up, and now we need him to desperately sleep. But he needs it. His brain needs to heal. He needs to tolerate therapy. And mama bear needs sleep too before she turns too grumpy
This photo says it all. Ethan loves pool time and it helps settle his tense muscles. That smile is absolutely incredible.
Today we got our anticipated discharge date: April 16.
Right now the team believes at that point Ethan will be ready to transition back into the community and use the support available to us there. It won’t mean he’s back to where he was before, he has a long way to go, but there comes a point where this intensive therapy does not benefit more than being back home. It’s a balancing act, as we need to keep the whole family unit in mind.
Today was a slow day for Therapy because Ethan and I went to SickKids to pick up the telephone transmitter in case he has another tachy episode. This will give us the chance to capture exactly what is going on and will tell them what the next steps will be.
Shane and Timothy came to visit this weekend. We rented an Airbnb to get some time together and away from the hospital, as Ethan can go on a leave-of-absence as long as he is medically stable. On Saturday we visited Ripleys Aquarium and Sunday was spent at Legoland. Timothy had a blast! And that was our goal. To spend time together and really focus on things Timothy would love. He even got to touch a Stingray!