So, today we had Katha's yearly check up. As expected, we decided it was best to stop her medications. The only medication she has now is her fast acting and long lasting insulin
plus an anti-nausea medication for her vertigo which she rarely takes.
The doctor wanted to know what we wanted to do if Katha starts having seizures. He helped us decide that we only wanted to make her comfortable if that happens. We pray that she will remain seizure free her whole life but she is deteriorating and it is a distinct possibility.
He mentioned that he doesn't think that seizures will be a life ending incident but pneumonia from her choking.
Speaking of choking, Katha now chokes at every meal, sometimes to the point of vomiting. However, she is still able to eat unassisted and that includes assistance when choking.
Katha is no longer able to walk at all, she trips over her own feet. If she has aid (either holding on to something or someone) she is able to stand by herself but can no longer move forward.
She also sleeps approximately 18 hours a day, waking only to eat, then go back to bed.
But, as the doctor said today, she's happy. She sings, she laughs, she bosses her brothers around. She's happy and that is our only goal anymore. Although it's harder to understand her, she seems very content.
Onto the symptoms:
Enlarged liver and spleen: Apparently, they are quite large but the doctor doesn't seem concerned about this anymore.
Dysphagia (trouble swallowing): Getting worse and will continue that way. The doctor figures she already aspirating into her lungs, it just a matter of time before she starts getting pneumonia
Basal Ganglia (holding limbs at awkward positions): Katha can no longer walk and has a hard time holding things because of the awkward position of her feet and hands.
Dementia (memory loss): Katha keep reverting. She likes movies and shows she liked years ago. She has trouble remembering much but there isn't much she needs to remember.
Seizures: She still hasn't had a seizure. We hope that this continues.
Gelastic Cataplexy (falling down in response to a large emotional outburst): The doctor offered us medication to help control this. We decided against it. As long as we're careful to let her breathe when she has these episodes they don't seem to bother her. Just like everything else, she has just learned to deal with it, because she's amazing like that.
