Daughter Update
I've come over time to believe that the phrase "Sleep like a baby" is a load of horseshit, because my dear daughter doesn't sleep. She kicks her daddy in the ribs, she flails, she hits her head against things--she puts out more energy sleeping than I do awake.
My official diagnosis for my daughter right now is congenital cytomegalovirus (CMV or CCMV, depending on where you look). The way that it's manifested itself the most is deafness--she was born with total hearing loss in the right ear, and a 70-80% loss in the left--and the concern with CMV is that she could also lose her eyesight, which would leave her deaf-blind. Yesterday we received a bit of hope from her ENT doctor, who said that the hearing she has is maintaining nicely, and that with CMV kids most of the problems are there at birth, and almost certainly by age three. We're halfway there, so it gives us a target.
Insurance is a pain in the ass. Couldn't live my life right now without it, but it's still a wonky, wonky system. My daughter is qualified for physical therapy and speech therapy, but they only authorize for 12 visits at a time, and the referral has to come from her family doctor, not from the office where we get PT and speech. That means that I have to do some careful calendar watching to make sure we're not running out of referrals, then call the family practice, who calls Group Health, who calls the PT center, who confirms with Group Health, who then sends out a referral. We do this every 10 weeks or so. With my daughter, who is certainly going to need both for the forseeable future, wouldn't it make more sense to give me a 1-year authorization with a reminder to stay under the 60 visit cap that's in the plan?
Such is life with a special needs child.
In other news, we're still efforting getting an appointment with the pediatric neurologist to go over the results of her MRI and find out what exactly that scar tissue in her brain means. That'll be a big appointment. In two weeks we have her eye appointment, and we're praying hard for that one to be where we want it to be. If you're of that bent, and candles lit would be appreciated.
Happy weekend!
My official diagnosis for my daughter right now is congenital cytomegalovirus (CMV or CCMV, depending on where you look). The way that it's manifested itself the most is deafness--she was born with total hearing loss in the right ear, and a 70-80% loss in the left--and the concern with CMV is that she could also lose her eyesight, which would leave her deaf-blind. Yesterday we received a bit of hope from her ENT doctor, who said that the hearing she has is maintaining nicely, and that with CMV kids most of the problems are there at birth, and almost certainly by age three. We're halfway there, so it gives us a target.
Insurance is a pain in the ass. Couldn't live my life right now without it, but it's still a wonky, wonky system. My daughter is qualified for physical therapy and speech therapy, but they only authorize for 12 visits at a time, and the referral has to come from her family doctor, not from the office where we get PT and speech. That means that I have to do some careful calendar watching to make sure we're not running out of referrals, then call the family practice, who calls Group Health, who calls the PT center, who confirms with Group Health, who then sends out a referral. We do this every 10 weeks or so. With my daughter, who is certainly going to need both for the forseeable future, wouldn't it make more sense to give me a 1-year authorization with a reminder to stay under the 60 visit cap that's in the plan?
Such is life with a special needs child.
In other news, we're still efforting getting an appointment with the pediatric neurologist to go over the results of her MRI and find out what exactly that scar tissue in her brain means. That'll be a big appointment. In two weeks we have her eye appointment, and we're praying hard for that one to be where we want it to be. If you're of that bent, and candles lit would be appreciated.
Happy weekend!
posted by Ryan at 10:28 PM
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