Shriner's - Day 9 (cross-post)

Sorry for the lack of a post last night (or this morning when you had your coffee, Mom), but I was so tired last night, I could hardly think, let alone write.

Yesterday wasn't a bad day. But I didn't get near enough sleep the night before (partly my fault for staying up til after midnight reading and partly Ben's fault for waking up about 8 times between midnight and 3am as well as being up for the day at 6am). So combine a rough night with the physicality that is required to deal with Ben and that makes for one tired Mommy.

So I thought I'd talk about what a day looks like for us....paying particular attention to how many times I have to transfer Ben. Because that seems to be what's taking it's toll on me the most. You see, Ben had major surgery on his spine. That means for the next 6 months we have to make sure that there is no undue strain on his back. It means that all active movement is OK...meaning movements that Ben does on his own are OK (that's why we have pain...he'll know when he's gone too far), but passive movement (like us moving Ben) has all sorts of restrictions on it. In particular, I cannot pick Ben up under the armpits (how we all pick our kids up). And I need to make sure that his legs are never bent so that his trunk and legs are at less than a 90 degree angle. And at this point, it means no floor sitting. The only sitting allowed is in his wheelchair or on a bench.

Here's a video of Stephanie moving Ben from the wheelchair to the mat. This is how I transfer Ben many, many times each day.



SO here is how our day went yesterday:

6am - Ben is awake. I can't believe it. I was so hoping for at least 7:30. After listing to him giggle and laugh in his bed for 20 minutes, I finally get up and put my ipad in front of him so he can watch cartoons on netflix for a little while.

7am - we are both up for the day. I transfer him (#1) from his bed to the wheelchair. Up to this point, he's been eating all his meals from the bed but it's time for him to start eating sitting up.

7:30am - breakfast arrives for him. I head to the cafeteria to get myself something.

8am - Ben needs to pee. Transfer him to the bed (#2) to get his pants off. Transfer to the nifty potty/wheelchair thing we have (#3). Then back to the bed once he's done (#4).

8:30 - Time for a bike ride. Transfer him from the bed to the to the bike (#5).

9am - End the bike ride in the playroom. I go back to our room to get his standing frame. Transfer him from the bike to the stander (#6). I head back to the room to get a shower.

9:45 - Return to the playroom with Ben's wheelchair. Transfer him from the stander to the wheelchair (#7). I return to our room to catch up on emails, etc.

11am - return to the playroom to take him to PT. Find out he has to pee. Return to the room. Transfer from wheelchair to bed (#8) From bed to potty (#9) From potty back to bed (#10) and from bed back to chair (#11). Go to PT and stay with him at PT from 11 til noon. Here's a video from our morning PT session.



Noon - Return to the room for lunch. After lunch, decide it is FINALLY time for Ben to have a bath. Transfer from chair to bed (#12) so I can undress him. Then from bed to (#13) bathtub. They have a little bathseat for him to go in. It looks just like a reclined beach chair.
1pm - transfer from bathtub to bed (#14). Then from bed to wheelchair (#15).

1:30 - Take Ben to the playroom to play with his favourite volunteer, Philip. Return to room for a little nap.

2:45 - Pick Ben up from playroom. And head to PT. After being there for 5 minutes, he then informs me that he needs to pee. So back to the room we go. Transfer to bed (#16), to potty (#17), to bed (#18) and back to wheelchair (#19).

3pm - Back at PT. Transfer from chair to PT bed (#20) to change him into his bathing suit (or babing suit, as he says). Transfer him to the pool (#21). Hang out and watch his pool session.
3:45 - Transfer from pool to PT bed (#22) and then to floor mat (#23) for stretching. Stretching is so great right after he's been in the pool as his muscles are all warmed up. Thankfully, Stephanie transfers him back to his chair after the stretching.

4pm - Return to room. He's tuckered out. So transfer to bed (#23).

4:30pm - Supper arrives. Help him eat his supper. Go to the cafeteria for my supper.

5:30pm - Ben decides he wants to go for another bike ride. So transfer from bed to bike (#24). Go for a little bike ride around the hospital.

5:45 - Return to room as Ben has to pee. Transfer from bike to bed (#25), to potty (#26), and back to bed (#27). Where Ben is happy to hang out til bedtime watching Backyardigans' videos. Thankfully...because by now, my back is telling me that it will take no more. And I am EXHAUSTED.

7pm - Ben goes to sleep. And I crash with my book.