Tuesday update
I didn't see any of Linda's therapies today, but I talked with my sister who did. She said that Linda worked on a kneeling balance exercise for her afternoon PT session. Linda apparently found the exercise really hard, because it left her pretty unhappy this evening when I found her. I was surprised, because usually the things she does with Fred don't upset her.
Her occupational therapist ordered some kind of arm support for Linda to use during meals. I think the idea is that it should lift her arms enough that she can begin to feed herself. It sounds difficult, so we'll have to see. Linda usually succeeds at things up pretty quickly as you already know by now.
Tonight Linda told me that the doctors said she should start taking all of her medications by mouth. They apparently forgot to write an order for it, so the nurses didn't know, and she still got her meds tonight by tube. According to Linda, the doctor would like to remove her peg tube by Friday. I was surprised that she wasn't in a better mood with news like that; the tube really makes her feel not-human.
She also told me that the doctors want us to have Ellie tested for Linda's blood disorder. This is the second time they have mentioned it, so I suppose the mean it. Even if she has it I don't think there is anything they specifically would suggest for treating it at such a young age, but it's something we should know about if she has an accident or breaks a bone, etc. I'll have to set that up with our physician. They said her siblings should all be tested, and I think they would want her mother to do it too (since the trait seems to run on her side).
I didn't see any of Linda's therapies today, but I talked with my sister who did. She said that Linda worked on a kneeling balance exercise for her afternoon PT session. Linda apparently found the exercise really hard, because it left her pretty unhappy this evening when I found her. I was surprised, because usually the things she does with Fred don't upset her.
Her occupational therapist ordered some kind of arm support for Linda to use during meals. I think the idea is that it should lift her arms enough that she can begin to feed herself. It sounds difficult, so we'll have to see. Linda usually succeeds at things up pretty quickly as you already know by now.
Tonight Linda told me that the doctors said she should start taking all of her medications by mouth. They apparently forgot to write an order for it, so the nurses didn't know, and she still got her meds tonight by tube. According to Linda, the doctor would like to remove her peg tube by Friday. I was surprised that she wasn't in a better mood with news like that; the tube really makes her feel not-human.
She also told me that the doctors want us to have Ellie tested for Linda's blood disorder. This is the second time they have mentioned it, so I suppose the mean it. Even if she has it I don't think there is anything they specifically would suggest for treating it at such a young age, but it's something we should know about if she has an accident or breaks a bone, etc. I'll have to set that up with our physician. They said her siblings should all be tested, and I think they would want her mother to do it too (since the trait seems to run on her side).
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