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Long time, no real update
Mar. 29th, 2008 06:31 pmGood grief, Charlie Brown, I don't even know where to start...
Alex stuff: We finished his testing with the school district. He's placing right around a year behind where he should be as far as speech development goes. This means he qualifies for a more intensive, preschool-style program within the school district. We've finished meeting with the once-a-week speech therapy, and he starts preschool next week. It'll be a couple hours a day, four days a week. It's a small class (maybe ten students?) and the other children are very close to him in terms of both age and development. They work in a partner system, so he should get some good, regular social interaction as well as the learning, and I think he's really going to love it all around. He's got his Cars backpack and everything's ready... just gotta get him used to the new routine. It's covered by the school district, which is awesome since private speech therapy can be costly, and I just think it's going to be a really good thing for him. Hoping the wee bit of free time in the mornings will let me get more done as well. Monday will tell whether I cry at letting him go to school for the first time.
Mom stuff: She's... good and bad, I guess? She had a second MRI done, and there hasn't been any significant change since the previous one, so she's not getting much worse at a base level. Her neurologist has said though that we are looking at a chronic condition; she's never going to be "cured", and some of the damage to her brain is likely permanent. Since the disease will continue to attack her brain, she is going to get worse; it's simply a matter of how slowly/quickly, and how much of the damage can be masked/helped by medications and treatments. I don't think that's really sunk in for her; she's accepted that she's probably never going to be able to go back to work, etc, the life she used to know... but I think she's deliberately ignoring or in denial over the idea of continuing to not just be as she is currently, but steadily deteriorating. It's a pretty major thing to get used to, and I'm certainly in no hurry to make her come to terms with it; it won't change anything, and she'll get there in her own time. I'm... hoping that we don't get back to suicidal, but honestly am expecting at least some major depression as a result eventually. Since her chemotherapy treatments have stopped, she's been backsliding somewhat mentally; not as bad as she was for a while, but it's easy to see that her memory and focus are a lot shakier than she'd gotten used to, and some of the personality issues are coming back. Her doctors are most likely putting her back on chemotherapy again; it's not a permanent solution, but it works, and will buy time until we can find something better; it may be a year or two of monthly chemo. It's (relatively) low-dose and I think we all feel like the side effects are an acceptable trade-off for the mental and physical improvements it affords her. So... that's that.
General life: I've been enjoying spring a whole bunch lately. My freesias are up and I sniff them like crack while they last... absolutely my favorite scent ever. My wisteria's also blooming, smelling all cinnamon-y and incredible, and there's just general awesomeness with the sunshine and the flowers and everything. Easter was a little crazy but mostly good, and got in some time with the niece and nephew (Cassie's little ones) and Alex was pretty into finding plastic eggs this year, what with how they contained candy and money and such. It was a pretty good time.
Also, um. We are getting a sailboat. My mind's still wrapping around "free sailboat" but one of Nate's coworker friends needs to get rid of it and doesn't want to try selling it and offered it to us, and it's supposed to be in great condition and everything, and neither of us knows how to *sail*, good God, but yeah. It should be... fun. And if it doesn't work out, we can always sell it. I think we're hoping to keep it and do cool boat things though.
I miss people. I know I do that crazy hermit thing all the time, and we were all way way sick for like a month, but now I want to see people. And am kind of bummed that I don't think I could talk people into playing zombie tag, at least locally. But you know, other social activities are good too.
Alex stuff: We finished his testing with the school district. He's placing right around a year behind where he should be as far as speech development goes. This means he qualifies for a more intensive, preschool-style program within the school district. We've finished meeting with the once-a-week speech therapy, and he starts preschool next week. It'll be a couple hours a day, four days a week. It's a small class (maybe ten students?) and the other children are very close to him in terms of both age and development. They work in a partner system, so he should get some good, regular social interaction as well as the learning, and I think he's really going to love it all around. He's got his Cars backpack and everything's ready... just gotta get him used to the new routine. It's covered by the school district, which is awesome since private speech therapy can be costly, and I just think it's going to be a really good thing for him. Hoping the wee bit of free time in the mornings will let me get more done as well. Monday will tell whether I cry at letting him go to school for the first time.
Mom stuff: She's... good and bad, I guess? She had a second MRI done, and there hasn't been any significant change since the previous one, so she's not getting much worse at a base level. Her neurologist has said though that we are looking at a chronic condition; she's never going to be "cured", and some of the damage to her brain is likely permanent. Since the disease will continue to attack her brain, she is going to get worse; it's simply a matter of how slowly/quickly, and how much of the damage can be masked/helped by medications and treatments. I don't think that's really sunk in for her; she's accepted that she's probably never going to be able to go back to work, etc, the life she used to know... but I think she's deliberately ignoring or in denial over the idea of continuing to not just be as she is currently, but steadily deteriorating. It's a pretty major thing to get used to, and I'm certainly in no hurry to make her come to terms with it; it won't change anything, and she'll get there in her own time. I'm... hoping that we don't get back to suicidal, but honestly am expecting at least some major depression as a result eventually. Since her chemotherapy treatments have stopped, she's been backsliding somewhat mentally; not as bad as she was for a while, but it's easy to see that her memory and focus are a lot shakier than she'd gotten used to, and some of the personality issues are coming back. Her doctors are most likely putting her back on chemotherapy again; it's not a permanent solution, but it works, and will buy time until we can find something better; it may be a year or two of monthly chemo. It's (relatively) low-dose and I think we all feel like the side effects are an acceptable trade-off for the mental and physical improvements it affords her. So... that's that.
General life: I've been enjoying spring a whole bunch lately. My freesias are up and I sniff them like crack while they last... absolutely my favorite scent ever. My wisteria's also blooming, smelling all cinnamon-y and incredible, and there's just general awesomeness with the sunshine and the flowers and everything. Easter was a little crazy but mostly good, and got in some time with the niece and nephew (Cassie's little ones) and Alex was pretty into finding plastic eggs this year, what with how they contained candy and money and such. It was a pretty good time.
Also, um. We are getting a sailboat. My mind's still wrapping around "free sailboat" but one of Nate's coworker friends needs to get rid of it and doesn't want to try selling it and offered it to us, and it's supposed to be in great condition and everything, and neither of us knows how to *sail*, good God, but yeah. It should be... fun. And if it doesn't work out, we can always sell it. I think we're hoping to keep it and do cool boat things though.
I miss people. I know I do that crazy hermit thing all the time, and we were all way way sick for like a month, but now I want to see people. And am kind of bummed that I don't think I could talk people into playing zombie tag, at least locally. But you know, other social activities are good too.
