We had family in town for Thanksgiving, from both of our families, which was a perfect opportunity for some outside perspective for me. None of these family members have seen Todd since before he had his stroke, so I was very interested to see how they found him now, as it's pretty difficult for me to see the incremental progress, being with him nearly every moment of every day.
I'm afraid that I kind of jumped on them for input, and I hope I didn't come across as insensitive or rude, but as I've told so many people, I don'thave the time or energy, or emotional wherewithall to beat around the bush, or worry about causing offence (or being offended, so don't worry, it does go both ways) or picking up on social cues or body language, or any of that. But the verdict was that he is changed, though not necessarily for the worse. That the stroke has aged him, or perhaps a better word would be matured him. He's slower, in movement, speech, and thought, and more deliberate. Which, if you knew Todd pre-stroke (or Todd v1.0 as his brother likes to call him) you would know that that isn't necessarily a bad thing. Todd's family kept forgetting that he had a stroke, and needed special consideration in things like noise level and physical labor. (Of course, they made every consideration, it was just hard to remember that he wasn't just tired, or on NiQuil or something normal like that.)
Todd has been making amazing strides lately. He gets himself up every day at a reasonable hour (before 10:00 a.m.) and I don't have to nag him to get out the door. In fact it's back to being pretty even as to who is responsible for making us late. Because we were never punctual people to begin with.
Each of his therapists are amazed at the progress he's made. He didn't see them much for a couple of weeks, due to illness (theirs and ours) and one was on vacation, and in that time he progressed a ton, though we didn't really see it at the time.
In talking to one of my sisters-in-law, I realized that I have a hard time quantifying Todd's progress, so I'm going to give it my best shot. In addition to the waking himself up (without an alarm by the way, which is more huge than it probably sounds) he can:
*Complete tasks with his therapists with relative ease that just a month ago were very difficult, both in the cognative ability to think it through, and generally stay on task with out getting distracted (and when he does, can redirect himself to get back on task.)
*Stay on topic in a conversation. When he does get tangential, it's a much smaller leap for outsiders to follow, and he's usually able to get himself back on track, or explain how he made the leap.
*Work on the computer. He has been doing a lot with our computer, and with my brother-in-law Devin's help, has replaced the power supply and hard drive, reformatted and reinstalled everything, backed up everything, and has been working on thelins.org, his family website, of which he was the web master. Other than the occasional hiccup, he's done great.
*Understand that some of the difficulties that he faces (like with crowds and noise) may never go away completely, but he is learing to compensate for his defacits in productive ways.
We hosted Thanksgiving Dinner for my side of the family at our house, and, well, it was a lesson in what not to do. It was just too much, for both of us, really. Oliver too, for that matter. But we were able to take some lessons from it, like that Todd really does need rest breaks, often, and needs to take them before he feels like he needs one. And that ear plugs are a good thing. And that we won't be hosting that many people again. At least, not for A LONG time.
The next big things on the horizon are getting him back behind a wheel, and repeating his cognative testing. In the next two weeks his OT will check out a student driver car, (the kind with the extra "just in case" set of brakes) and begin the steps to approve him to drive. They will approve him in incremental steps, for example, if he does ok with her, he may be able to drive on city streets, in the day time, without the radio, and with only me in the car with him, and move on from there.
The cognative testing will be done on Dec. 8th. We are hopeful that he will be approved to go back to work, but we know it may still be a little while. But things are progressing. I feel a lot more positive than I have in a long while.
The other perspective that I'm very interested in is when Todd's mom Sue comes to visit for Christmas. I know that she'll be amazed at how well Todd is doing, and she's really the only person who can give me an update from the perspective of someone who has seen Todd since his stroke, but not for a while. She was here for the month of August, basically from the time Todd was well enough to go home from the hospital, so I'm very interested in the progress that she sees.
I'm certain that all the prayers that are still offered in Todd's and our family's behalf are being heard, and the blessings are felt. I'm so grateful for all of you and your support. I'm grateful for the power of God's holy priesthood, and having worthy holders of it in my life, who were able to give not just one, but MANY blessings each of which independantly promised Todd's full recovery, which we are seeing in action before our very eyes. God is good.
Sunday, November 30, 2008
Thursday, November 13, 2008
We are still alive
This is a cross post from my other blog, but since that one's private, and I thought this pertained to this blog as well, I'm posting the same thing on here. If you read both, please forgive my redundancy.
It's been forever since I updated this blog. Or Todd's stroke blog. We're here, though. Still alive. We haven't dropped off the face of the earth, and we don't hate you. We've just been involuntarily booted off line for a while.
Our hard drive crashed, and we stopped breathing for a second (or a couple days) thinking we'd lost everything. Everything. All our pictures. Thankfully, Todd was able to recover it, the hard drive had not completely failed, but we went ahead and bought a new one (along with a new power supply) so that we could sleep a little better at night, knowing that all our precious data was safe and sound. Merry Christmas to us. Then we had all the fun of new installs, etc, and yadda yadda, we're finally back on line.
And thank goodness. I was starting to freak out, not being able to do my on line banking. Et Cettera. I wish I were one of those people who could disconnect and be happy about it, and go about my day buisily saving the planet or what not, but I can't. I'm not. I (heart) the internet, peeps. Can't live without it. And now that we're back on line I can tell you some good news.
Todd was awarded Long Term Disability through his (former) employer. It's not enough to live on, but it's enough to pay our mortgage. And he will receive it as long as he is eligible, until he's 65, if need be (which it won't, right? Right?) They will also help with him with returning to work, or vocational training should he not be able to return to his chosen career (it's called Vocational Rehab, I think.) And, as our caseworker pointedly told me, as a caregiver to a brain injury survivor herself, they have benefits for caregivers too. I'm guessing in the form of crisis hotlines, or counceling, or some such.
The other good bit of news is that our COBRA insurance has FINALLY been reinstated, so we can start billing all Todd's spendy drugs to the insurance company again. And be reimbursed for the $1000+ we've paid out of pocket this month. Yep, like the 2-month supply of one that I was lead to believe he'd be on long-term, and was rapidly transitioned off of. And several others that we paid for before I had the good sense to start filling in week-or-less incraments. You survive a stroke, but then the cost of the medications will kill you with a heart attack. Can you say $20 per pill? F'reals. And oh yes, COBRA is not cheap. But we only put Todd and Oliver on it, and part of the LTD package includes them paying some of Todd's portion, so really, we're pretty lucky. We're not paying the most you've ever hear of. Though it's still not cheap. And hey, if you know anyone who takes Lyrica, Depakote (generic) or Depakote ER, send them my way. We can trade for something. Say, money, for example. I'm not saying I'm a drug dealer, but if we have it and don't need it, and you need it but don't have it, well, it seems silly not to work out something to our mutual benefit, no?
So, the good news I suppose is that our savings will last us a little longer. There's still this dreadful day of recconing looming out there in the murky future, on which a decision will have to be made about what to do about the ever dwindeling savings, and lack of gainful employment, but I've given myself until after the first of the year to acknowledge it. Because there's just no way I'll be able to get throught the already hectic and stressful holiday season (made moreso by said dwindling and lack) if I also have to worry about finding a job, and all the logistics that go along with Working Mommy, Disabled Daddy, and Special Needs Son. Ug. And here comes the panic attack, right on cue.
I thought I'd apply for WIC, since we have no money, and strangely still need to eat. I guess I should have gotten on the ball sooner though, and done it before the LTD was granted, because now apparently we make too much money. I suppose I should be happy that even living off disability we are above the federal poverty line, but it just puts us back into that damned if we do, damned if we don't situation that has plagued us since Todd's stroke. We don't make enough to be self sufficent, pay all our bills, but we make too much (or have too many "liquid assets") to receive any aid from the programs that we've been paying into since we were 16. This is why people declare bankruptcy, and forclose on their homes.
At the risk of this post being a total downer, let me reassure you that we DO see the blessings. We have been blessed beyond measure, and recently another blessing was brought to our attention. We met a wonderful guy at LDS hospital, who happenes to be a survivor of a nearly identical stroke. However this man has suffered more physical imparement, and has no use of the left side of his body, and as such, is confined to a motorized wheel chair. Which Oliver, incidentally, thinks is just about the coolest thing since Yogurt. We had the opportunity to get to know him better, and meet his wife at the Brain Injury Support Group (which was fabulous, by the by) and decided that we need them to be our friends. When we got home that night, Todd and I were talking about getting together with them, and it struck us that it wouldn't be possible to invite them to dinner at our house. For starters, there are at minimum 4 stairs to even get into our house. Add to that that the bathrooms are either up or down a full flight fo stairs, and it hit us. How lucky are we that, with all Todd's dealing with, he has full use of his body. He can go up and down stairs no problem. Feed and bathe and dress himself. Heck, we raked and bagged leaves this morning. I can't even begin to think of what we'd be facing if Todd had suffered the physical affects of the same stroke, just after purchasing this stair-ridden house.
So blessed? Yes. Beyond measure. Thankful? Very. Still in need of lots and lots of help? Um. Yes.
Stay tuned for a very sad and pathetic post of things that we could really use help on. Cause this one is too long and already depressing enough. And I'm tired, and going to bed.
It's been forever since I updated this blog. Or Todd's stroke blog. We're here, though. Still alive. We haven't dropped off the face of the earth, and we don't hate you. We've just been involuntarily booted off line for a while.
Our hard drive crashed, and we stopped breathing for a second (or a couple days) thinking we'd lost everything. Everything. All our pictures. Thankfully, Todd was able to recover it, the hard drive had not completely failed, but we went ahead and bought a new one (along with a new power supply) so that we could sleep a little better at night, knowing that all our precious data was safe and sound. Merry Christmas to us. Then we had all the fun of new installs, etc, and yadda yadda, we're finally back on line.
And thank goodness. I was starting to freak out, not being able to do my on line banking. Et Cettera. I wish I were one of those people who could disconnect and be happy about it, and go about my day buisily saving the planet or what not, but I can't. I'm not. I (heart) the internet, peeps. Can't live without it. And now that we're back on line I can tell you some good news.
Todd was awarded Long Term Disability through his (former) employer. It's not enough to live on, but it's enough to pay our mortgage. And he will receive it as long as he is eligible, until he's 65, if need be (which it won't, right? Right?) They will also help with him with returning to work, or vocational training should he not be able to return to his chosen career (it's called Vocational Rehab, I think.) And, as our caseworker pointedly told me, as a caregiver to a brain injury survivor herself, they have benefits for caregivers too. I'm guessing in the form of crisis hotlines, or counceling, or some such.
The other good bit of news is that our COBRA insurance has FINALLY been reinstated, so we can start billing all Todd's spendy drugs to the insurance company again. And be reimbursed for the $1000+ we've paid out of pocket this month. Yep, like the 2-month supply of one that I was lead to believe he'd be on long-term, and was rapidly transitioned off of. And several others that we paid for before I had the good sense to start filling in week-or-less incraments. You survive a stroke, but then the cost of the medications will kill you with a heart attack. Can you say $20 per pill? F'reals. And oh yes, COBRA is not cheap. But we only put Todd and Oliver on it, and part of the LTD package includes them paying some of Todd's portion, so really, we're pretty lucky. We're not paying the most you've ever hear of. Though it's still not cheap. And hey, if you know anyone who takes Lyrica, Depakote (generic) or Depakote ER, send them my way. We can trade for something. Say, money, for example. I'm not saying I'm a drug dealer, but if we have it and don't need it, and you need it but don't have it, well, it seems silly not to work out something to our mutual benefit, no?
So, the good news I suppose is that our savings will last us a little longer. There's still this dreadful day of recconing looming out there in the murky future, on which a decision will have to be made about what to do about the ever dwindeling savings, and lack of gainful employment, but I've given myself until after the first of the year to acknowledge it. Because there's just no way I'll be able to get throught the already hectic and stressful holiday season (made moreso by said dwindling and lack) if I also have to worry about finding a job, and all the logistics that go along with Working Mommy, Disabled Daddy, and Special Needs Son. Ug. And here comes the panic attack, right on cue.
I thought I'd apply for WIC, since we have no money, and strangely still need to eat. I guess I should have gotten on the ball sooner though, and done it before the LTD was granted, because now apparently we make too much money. I suppose I should be happy that even living off disability we are above the federal poverty line, but it just puts us back into that damned if we do, damned if we don't situation that has plagued us since Todd's stroke. We don't make enough to be self sufficent, pay all our bills, but we make too much (or have too many "liquid assets") to receive any aid from the programs that we've been paying into since we were 16. This is why people declare bankruptcy, and forclose on their homes.
At the risk of this post being a total downer, let me reassure you that we DO see the blessings. We have been blessed beyond measure, and recently another blessing was brought to our attention. We met a wonderful guy at LDS hospital, who happenes to be a survivor of a nearly identical stroke. However this man has suffered more physical imparement, and has no use of the left side of his body, and as such, is confined to a motorized wheel chair. Which Oliver, incidentally, thinks is just about the coolest thing since Yogurt. We had the opportunity to get to know him better, and meet his wife at the Brain Injury Support Group (which was fabulous, by the by) and decided that we need them to be our friends. When we got home that night, Todd and I were talking about getting together with them, and it struck us that it wouldn't be possible to invite them to dinner at our house. For starters, there are at minimum 4 stairs to even get into our house. Add to that that the bathrooms are either up or down a full flight fo stairs, and it hit us. How lucky are we that, with all Todd's dealing with, he has full use of his body. He can go up and down stairs no problem. Feed and bathe and dress himself. Heck, we raked and bagged leaves this morning. I can't even begin to think of what we'd be facing if Todd had suffered the physical affects of the same stroke, just after purchasing this stair-ridden house.
So blessed? Yes. Beyond measure. Thankful? Very. Still in need of lots and lots of help? Um. Yes.
Stay tuned for a very sad and pathetic post of things that we could really use help on. Cause this one is too long and already depressing enough. And I'm tired, and going to bed.
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