Sarah is doing better on the high preds. We're watching and waiting. No BM since about 36 hours ago. She's still got pain but no more bleeding.
Now I've shifted gears to freaking out about Izzy. She just turned 2 yesterday and she's still barely speaking. She UNDERSTANDS words, she just won't say them. She probably has 40 or 50 words but if you add the qualifier that someone besides mom and dad must understand them, she probably has 5.
When she does speak, reluctantly, she talks like a deaf person. It sounds very similar to me, anyway. She talks from the back of her throat and fails to enunciate. She doesn't use teeth or tongue to form sounds except in a few isolated cases. She has inflection and tone down cold, which is why we can understand her, but that's all.
She had very severe jaundice when she was born, which I touched on a bit in my Sarah blog. The hospital and her pediatrician were cavalier about it and we don't believe they acted fast enough or treated long enough. She was discharged looking very, very brown and with a bilirubin count still too high for comfort.
I'm starting to think she has "mild" kernicterus, if there is such a thing. There seem to be few or no support forums online that even come close to this one in terms of usability and an active community. There's P.I.C.K. which I'm still waiting for "permission" to join, FFS.
We've in the past had Izzy evaluated by a neurologist for twitches and convulsions in her eyes, arms, and back but we have always shied away from an EEG because we don't want to frighten her and we are dead set opposed to treating her with anti-convulsants anyway.
She doesn't SEEM to have vision problems, but we're not entirely sure because it's difficult for her to communicate what she's pointing at so it's hard to test distance vision.
Early intervention people have been out to test her and said she was "normal" at 20 months, but I think they have a very high tolerance for what exactly "normal" is. They said she could be re-evaluated in 3 months if she hadn't improved.
Well it's been 4 and she's barely improved. She says maybe 2 more words, poorly.
I'm trying to get an appointment with an ENT to get her hearing tested. I wish I could talk to somebody who actually knows something about kernicterus besides what they sort of read in an article once. We were told that kernicterus is ALWAYS severe and ALWAYS causes palsy and retardation so Elizabeth CAN'T have it, but I'm seeing things now online to indicate that this isn't true.
But nobody here, her pediatrician, her neurologist, anybody at all, seems to want to discuss it. I think they're worried to get involved because nearly every kernicterus case results in a malpractice suit against the birth hospital, OB, whatever.
I just want to know what's going on with Izzy so that we can address it but I'm hitting this Wall of Silence or being given what appears to be misinformation. I'm like, the King of internet research when it comes to medical crap but I'm getting almost nothing and becoming extremely frustrated, here. :ymad:
Now I've shifted gears to freaking out about Izzy. She just turned 2 yesterday and she's still barely speaking. She UNDERSTANDS words, she just won't say them. She probably has 40 or 50 words but if you add the qualifier that someone besides mom and dad must understand them, she probably has 5.
When she does speak, reluctantly, she talks like a deaf person. It sounds very similar to me, anyway. She talks from the back of her throat and fails to enunciate. She doesn't use teeth or tongue to form sounds except in a few isolated cases. She has inflection and tone down cold, which is why we can understand her, but that's all.
She had very severe jaundice when she was born, which I touched on a bit in my Sarah blog. The hospital and her pediatrician were cavalier about it and we don't believe they acted fast enough or treated long enough. She was discharged looking very, very brown and with a bilirubin count still too high for comfort.
I'm starting to think she has "mild" kernicterus, if there is such a thing. There seem to be few or no support forums online that even come close to this one in terms of usability and an active community. There's P.I.C.K. which I'm still waiting for "permission" to join, FFS.
We've in the past had Izzy evaluated by a neurologist for twitches and convulsions in her eyes, arms, and back but we have always shied away from an EEG because we don't want to frighten her and we are dead set opposed to treating her with anti-convulsants anyway.
She doesn't SEEM to have vision problems, but we're not entirely sure because it's difficult for her to communicate what she's pointing at so it's hard to test distance vision.
Early intervention people have been out to test her and said she was "normal" at 20 months, but I think they have a very high tolerance for what exactly "normal" is. They said she could be re-evaluated in 3 months if she hadn't improved.
Well it's been 4 and she's barely improved. She says maybe 2 more words, poorly.
I'm trying to get an appointment with an ENT to get her hearing tested. I wish I could talk to somebody who actually knows something about kernicterus besides what they sort of read in an article once. We were told that kernicterus is ALWAYS severe and ALWAYS causes palsy and retardation so Elizabeth CAN'T have it, but I'm seeing things now online to indicate that this isn't true.
But nobody here, her pediatrician, her neurologist, anybody at all, seems to want to discuss it. I think they're worried to get involved because nearly every kernicterus case results in a malpractice suit against the birth hospital, OB, whatever.
I just want to know what's going on with Izzy so that we can address it but I'm hitting this Wall of Silence or being given what appears to be misinformation. I'm like, the King of internet research when it comes to medical crap but I'm getting almost nothing and becoming extremely frustrated, here. :ymad:
