Five months down and, I must say, life is beginning to feel normal again. Jason continues to amaze me with his persistence and his progress. For those of you keeping track at home, here’s where we’re at...
Mobility: There’s very little that prevents him from getting around now. He can manage curbs, stairs (if the situation really demanded it. In wheelchair-friendly California, this is not much of an issue), transfers (the transfer board is rarely seen these days), and general maneuvering. He’s begun taking the shuttle recently, and will wheel himself down to the BART every morning for that. He’s also beginning to get a bit more adventurous with work-venturing further afield for meals, interviews, and other obligations.
Pain: N/A
Exercise and Therapy: 5 hours per week at SCI-FIT. A bit more than that through December, actually, to make up the time he’ll lose when they’re closed for Christmas. He also wheels to/from the shuttle stop and does stretching exercises at home every day.
Daily Life Activities: He can now watch Savannah if I need to run errands (it’s soooo nice being able to run to the grocery store without a grabby toddler on my hands!), take Sonja out on a (short) walk on his own, do laundry, clean the kitchen, clean up the bathroom, etc, etc. There’s not much he can’t do. If I had to note the biggest change over the last few weeks and months in this area, it would be that he’s making a really concerted effort to be more active as a husband and father. When he was first injured, one of the biggest questions we had was how parenting would change with Jason in a wheelchair. I think he’s realized now that the wheelchair places only (relatively) minor limitations on him as a parent. As he’s gotten stronger, he’s begun doing more with Savannah. Now, he can get out of his chair onto the floor to play with her puzzles, read books, or whatever else she’d like to do. He can interact with her a lot more now.
Sensation/Motor Control: I don’t know that there’s a lot that’s “new” this month, but what we have seen is that the sensation and control that Jason’s regained below the level of injury has gotten stronger and more consistent, which is very good. He’s also feeling a lot of “deep touch” in his legs. e.g. He can feel the tightness of socks on his feet, that his hip muscles are tight, and so on.
Biggest Issue at the Moment: His seat back on the wheelchair. He was fitted for his wheelchair only a few weeks after his accident, so they ordered him a chair back that’s relatively high (to give more stability, which most people with a T4 injury level need). Now that he’s gotten so much back, the seat back is getting in the way and needs to be substantially lower. We’re meeting with the wheelchair vendor next week and, hopefully, we can find a way of switching out the seat backs that does not involve completely buying a new one.
Biggest Success: Graduating PT, watching Savannah solo, walking Sonja.
In the next month, we hope to..... Enjoy Christmas with our family, travel a bit (we’re hoping to take Savannah to Monterey next week), and keep moving forward.
Coming up on the six month mark is a pretty big deal, as most people we’ve spoken to made their biggest advances around months six and seven. Jason and I have talked a lot about this, and we’re a bit torn about how to view this next period. Obviously, Jason will continue to work as hard as he can towards a “full” recovery, but, with so much already regained, can we realistically expect much more? I think this is the worse part of SCI-the not knowing. Not knowing how much he’ll recover. Not knowing if there will be a cure for this (actually, I think the science for a cure is there, but many of the clinical trials have encountered road blocks due to funding being cut or because people get anxious about stem cell research). The uncertainty is tough. I try to not focus on this too much, because, at this point, our worst case scenario is that Jason remains where he is, which is great, really. It’d still be nice to have a crystal ball on occasion :)
I hope you are all doing well, and enjoying the holiday season!
Love you all,
Ashley
Mobility: There’s very little that prevents him from getting around now. He can manage curbs, stairs (if the situation really demanded it. In wheelchair-friendly California, this is not much of an issue), transfers (the transfer board is rarely seen these days), and general maneuvering. He’s begun taking the shuttle recently, and will wheel himself down to the BART every morning for that. He’s also beginning to get a bit more adventurous with work-venturing further afield for meals, interviews, and other obligations.
Pain: N/A
Exercise and Therapy: 5 hours per week at SCI-FIT. A bit more than that through December, actually, to make up the time he’ll lose when they’re closed for Christmas. He also wheels to/from the shuttle stop and does stretching exercises at home every day.
Daily Life Activities: He can now watch Savannah if I need to run errands (it’s soooo nice being able to run to the grocery store without a grabby toddler on my hands!), take Sonja out on a (short) walk on his own, do laundry, clean the kitchen, clean up the bathroom, etc, etc. There’s not much he can’t do. If I had to note the biggest change over the last few weeks and months in this area, it would be that he’s making a really concerted effort to be more active as a husband and father. When he was first injured, one of the biggest questions we had was how parenting would change with Jason in a wheelchair. I think he’s realized now that the wheelchair places only (relatively) minor limitations on him as a parent. As he’s gotten stronger, he’s begun doing more with Savannah. Now, he can get out of his chair onto the floor to play with her puzzles, read books, or whatever else she’d like to do. He can interact with her a lot more now.
Sensation/Motor Control: I don’t know that there’s a lot that’s “new” this month, but what we have seen is that the sensation and control that Jason’s regained below the level of injury has gotten stronger and more consistent, which is very good. He’s also feeling a lot of “deep touch” in his legs. e.g. He can feel the tightness of socks on his feet, that his hip muscles are tight, and so on.
Biggest Issue at the Moment: His seat back on the wheelchair. He was fitted for his wheelchair only a few weeks after his accident, so they ordered him a chair back that’s relatively high (to give more stability, which most people with a T4 injury level need). Now that he’s gotten so much back, the seat back is getting in the way and needs to be substantially lower. We’re meeting with the wheelchair vendor next week and, hopefully, we can find a way of switching out the seat backs that does not involve completely buying a new one.
Biggest Success: Graduating PT, watching Savannah solo, walking Sonja.
In the next month, we hope to..... Enjoy Christmas with our family, travel a bit (we’re hoping to take Savannah to Monterey next week), and keep moving forward.
Coming up on the six month mark is a pretty big deal, as most people we’ve spoken to made their biggest advances around months six and seven. Jason and I have talked a lot about this, and we’re a bit torn about how to view this next period. Obviously, Jason will continue to work as hard as he can towards a “full” recovery, but, with so much already regained, can we realistically expect much more? I think this is the worse part of SCI-the not knowing. Not knowing how much he’ll recover. Not knowing if there will be a cure for this (actually, I think the science for a cure is there, but many of the clinical trials have encountered road blocks due to funding being cut or because people get anxious about stem cell research). The uncertainty is tough. I try to not focus on this too much, because, at this point, our worst case scenario is that Jason remains where he is, which is great, really. It’d still be nice to have a crystal ball on occasion :)
I hope you are all doing well, and enjoying the holiday season!
Love you all,
Ashley
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