Progress
Q has had an interesting run with professionals lately. Tuesday he saw his pediatrician - all is well, though my definition for such things may not be the same as that of the general population. He hasn't used the nebulizer this season (fingers crossed), his skin is unbroken (except for the self-inflicted scrapes and bite marks on his hands), and he's happy. No small thing, that.
Today his new caseworker from the Department for Developmental Disabilities spent three hours here, doing the initial intake interview. How much help does he need dressing? Managing grooming? How about feeding? In learning and play activities? I think the more effective question would be: what doesn't he need help with? It would certainly have made the whole process shorter. Heh. I have no idea what the expectation should be for the outcome with this evaluation. The caseworker will return tomorrow with the completed plan so we can have the option for care coverage for the month of March. As of today, the estimate for care hours is 86.
I have two reactions to this. First - thank heavens that there's an option for this. At all. I may choose to have someone spend the night to turn Q and reposition him, should he awake, between the hours of ten and six once or twice a month so I can sleep. I can think of other very useful applications for this as well. This poses such a huge blessing that contemplating it makes me a little light-headed. I'd be giddy if I were less tired. Second - so, um, let me get this straight. It takes eighty-six hours a month to care for Quinn? What? No comprende. Eighty-six hours? In what context would this be true?
The caseworker is a very nice man. He spoke of his own experience helping to care for his cousin who had severe and complicated CP. He said that I'm doing an excellent job (blush) with a very time intensive and exhausting situation. He found Q's smile engaging, touching, beautiful. He considers the result of my efforts and my knowledge of Q's specifics, as well as the human body generally, to be remarkable. He's spending some time tomorrow morning going over the notes to fine-tune Q's profile and will return the final results to me quickly, so that we can get this moving, as I mentioned.
Eighty-six hours. I'm guessing that this means that an algorithm has decided that a typical five year old requires eighty-six hours less care than Q? When the nice man asked about the biggest needs for Q, I told him that our challenges here right now center around the fact that Q, himself, is a full-time endeavour. Add in the medical and therapy management and administrative issues, plus his sibs, and suddenly there's more to do in a week than I can realistically complete. For example, we still don't have window coverings up. Deep breath.
And yet. (You knew I had one of these, didn't you?)
The kitchen is pretty darn clean, though a crevice tool would be welcome under the edge of the stove. The whole house was vacuumed yesterday, including many of the baseboards. The kids are excited about their Greek temple models. Everyone is making some kind of measurable progress in learning. The bathrooms are pretty darn clean, though I suspect G's shower could use some scrubbing. The ubiquitous boxes are becoming less so. There are pictures on some walls, and slowly, steadily, more things are finding their homes in shelves.
Q has an orthopedics appointment at nine tomorrow. Both his therapy center and school PTs as well as his OT would like to see the lumbar testing and possible placement of the Baclofen pump before any potential surgery. Management of both pain and spastic tone would be much easier post-op with the pump, resulting in a vastly better experience for him. (Head between the knees... hating the prospect of all this...) I'll have more info tomorrow about all kinds of stuff. Knowledge is power. Tra la.
Three Good Things:
My shower squeegees. Such effective little tools, and they make less work for those cleaning the showers. Win!
Things I've learned over the years from certain people, some of whom you might not suspect I'd include in a gratitude list. Thanks to those people, I have encyclopedic level stuff in my head, and it ends up being useful in all kinds of situations.
My kids, the punkinheads. They're smile-inducing, work-creating, attention-deserving, organizationally-motivating, daily challenges, in all the right ways. They prod me onward, require that I be brutally and painfully honest with myself, and they bless me incomparably. All at the same time.
More soon. XO.
Today his new caseworker from the Department for Developmental Disabilities spent three hours here, doing the initial intake interview. How much help does he need dressing? Managing grooming? How about feeding? In learning and play activities? I think the more effective question would be: what doesn't he need help with? It would certainly have made the whole process shorter. Heh. I have no idea what the expectation should be for the outcome with this evaluation. The caseworker will return tomorrow with the completed plan so we can have the option for care coverage for the month of March. As of today, the estimate for care hours is 86.
I have two reactions to this. First - thank heavens that there's an option for this. At all. I may choose to have someone spend the night to turn Q and reposition him, should he awake, between the hours of ten and six once or twice a month so I can sleep. I can think of other very useful applications for this as well. This poses such a huge blessing that contemplating it makes me a little light-headed. I'd be giddy if I were less tired. Second - so, um, let me get this straight. It takes eighty-six hours a month to care for Quinn? What? No comprende. Eighty-six hours? In what context would this be true?
The caseworker is a very nice man. He spoke of his own experience helping to care for his cousin who had severe and complicated CP. He said that I'm doing an excellent job (blush) with a very time intensive and exhausting situation. He found Q's smile engaging, touching, beautiful. He considers the result of my efforts and my knowledge of Q's specifics, as well as the human body generally, to be remarkable. He's spending some time tomorrow morning going over the notes to fine-tune Q's profile and will return the final results to me quickly, so that we can get this moving, as I mentioned.
Eighty-six hours. I'm guessing that this means that an algorithm has decided that a typical five year old requires eighty-six hours less care than Q? When the nice man asked about the biggest needs for Q, I told him that our challenges here right now center around the fact that Q, himself, is a full-time endeavour. Add in the medical and therapy management and administrative issues, plus his sibs, and suddenly there's more to do in a week than I can realistically complete. For example, we still don't have window coverings up. Deep breath.
And yet. (You knew I had one of these, didn't you?)
The kitchen is pretty darn clean, though a crevice tool would be welcome under the edge of the stove. The whole house was vacuumed yesterday, including many of the baseboards. The kids are excited about their Greek temple models. Everyone is making some kind of measurable progress in learning. The bathrooms are pretty darn clean, though I suspect G's shower could use some scrubbing. The ubiquitous boxes are becoming less so. There are pictures on some walls, and slowly, steadily, more things are finding their homes in shelves.
Q has an orthopedics appointment at nine tomorrow. Both his therapy center and school PTs as well as his OT would like to see the lumbar testing and possible placement of the Baclofen pump before any potential surgery. Management of both pain and spastic tone would be much easier post-op with the pump, resulting in a vastly better experience for him. (Head between the knees... hating the prospect of all this...) I'll have more info tomorrow about all kinds of stuff. Knowledge is power. Tra la.
Three Good Things:
My shower squeegees. Such effective little tools, and they make less work for those cleaning the showers. Win!
Things I've learned over the years from certain people, some of whom you might not suspect I'd include in a gratitude list. Thanks to those people, I have encyclopedic level stuff in my head, and it ends up being useful in all kinds of situations.
My kids, the punkinheads. They're smile-inducing, work-creating, attention-deserving, organizationally-motivating, daily challenges, in all the right ways. They prod me onward, require that I be brutally and painfully honest with myself, and they bless me incomparably. All at the same time.
More soon. XO.
No comments:
Post a Comment