Tuesday, July 29th

Sorry for the lack of updates


The weekend was Full of Friends, Family, Food and Fun.

Since Susie is sleeping more and more, there isn't much new that is happening.

Here is a new snapshot - copy and pasted from before with updates.

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Memory: not much change.
She does recognize this house as our home from time to time, but mostly, she just thinks that we are on vacation here (and isn't happy about it, but also she doesn't seem to talk about it very much, so I'm not sure what she is thinking). She does remember people without any problem and pets.

Vision:
Her vision has gotten even worse. She normally wears a pretty strong prescription, but those glasses don't seem to help much at all - she doesn't wear her glasses much at all anymore. She can see big shapes, and can take a hand when one is offered. But in dim light, it seems like she can't see much at all.

Balance:
Pretty much gone at this point. She has been unable to stand - even with arm support for a few weeks now. you can hold her up, but you have to take nearly all of her weight.

Strength:
Nearly gone now. much less muscle mass than before. Her bones are easier to see.

Intake:
She is drinking/eating nearly nothing these days.
We are still seeing vomiting from time to time - it's hard to say if it was caused by the water/food/etc.

Body:
In the past 2 weeks, she has been completely incontinent. We don't even attempt to make trips to the commode or the bathroom anymore.

Sleeping:
She sometimes sleeps for days and then seems to be more awake for a few days, then back to sleeping again. Sometimes, the pain medication seems to come on quite strong and she gets into a really fidgety state. She can't lie still, but to tired to physically move about.

Pills:
Most of her meds are liquid at this point. We are also giving her many suppositories since she has started accepting them. But with her sleeping so much these days, it can take all day just to get her a.m. meds in her. Some days we don't get a lot of her meds in her.

Episodes:
She seems to be having less seizures these days. They seems to be triggered by how tired she gets. They range in symptoms, but primarily she loses her body strength and can stay uprightslumps to the side. She can hear us because I've asked her to squeeze my hand if she can hear me - and she does, but can't speak back. I've also asked her several times if it hurts to squeeze my hand and she doesn't squeeze it - so that's good that it doesn't hurt, but it is still scary to watch. Episodes are usually followed by more sleep than before.

Communication:
She can barely have simple conversations at this point. Her brain seems to be thinking of the words that she needs to use and that seems like it's really hard, so she doesn't say much. She can easily say her canned phrases, but new sentences are few and far between. "Do you want X,Y, Z etc?" just confuses her because her brain has to think about each item to see if she likes/wants it. When she's fresh, she can talk a tiny bit, but cannot initiate much in the way of conversation now - she can only answer.

Humor:
No lack of humor however - watch what you say in front of her! She does hear everything!
Comments are fewer , but the sarcasm is still there.