Day 4

Just like day 3, day 4 involves 2 sessions of physiotherapy - one session in the morning and the second in the afternoon. Some children may require the parent to be close by to encourage and give comfort when necessary. We've discovered early on with James that he does much better when we're out of sight. We tried to back away during the morning session but still in eye sight and although he wasn't as upset as yesterday, it still wasn't great. This afternoon however we stayed out of sight in a small room in the gym and it worked much better! As parents we're frequently balancing the push and pull of James' emotional wellbeing as well as pushing him towards his mobility goals. We try to carefully read James' cry - is it frustration, discomfort, pain, anxiety? It's quite difficult with limited verbal skills. It was reinforced today that James does much better when we're out of sight and that was satisfying to see him succeed and closer to his pre-SDR temperament.

We enjoyed the gardens again today, this time with James.

Hospital life hasn't been all bad! Look at that relaxed pose (and the spread of food!) It's been amazing to see how loose and relaxed James' legs feel after SDR.

Tomorrow is discharge day!

Day 3

Day 3 lived up to the challenge as being the dreaded day for patients when they're required to get up for the first time after 3 days of being in bed. In the morning, after James had his catheter and epidural removed, we were taught how to get James up to a sitting position and transfer to his stroller. We also talked about precautions for lifting and motions to avoid in his initial rehabilitation. Our afternoon therapy appointment was in the gym and it pushed James from the start.

Mad at us for making him get out of bed

A major change for James post SDR is to learn how to activate isolated muscle groups. When he had spasticity, his muscles would contract all at once. Isolating these muscle groups is a completely new experience for James and will take time to get used to this new ability. Our physiotherapist today, Jordan, was great to push through James' spirited ways (see photos below). We sensed he was more angry than anything this afternoon that he was having to work!

This morning we enjoyed some time in the garden on the 8th floor of the hospital. We'll take James up there today or tomorrow before we're discharged on Tuesday morning. It's beautiful.

We've had some happy and restful moments today too.

Day 2

James has had a better day than yesterday. He didn't require as many pain meds and he's had a good appetite. He enjoyed a visit with his Gran, Opa and sister this morning. We're watching again and again James' favourite shows so we're running out of new things to keep him entertained. It's a long time to stay in bed! Tomorrow we're told by many families is a hard day when they will get James out of bed and start some physiotherapy. But we're ready for some change so bring it on!

Shae is enjoying her time with Gran and Opa.