Tuesday 11 June 2013

June 11, 2013

So, we had an ultrasound yesterday.  This morning the G.I. clinic called to tell us that Katha's Liver is a normal size and more importantly functioning completely normally.  With NPC it often effects the liver and spleen, and although Katha's spleen is still slightly enlarged, this is really good news.  Hopefully her liver remains functioning properly.

I also had a meeting today with a nurse for the Lacombe Health Clinic.  She is AADL (Alberta Aids Daily Living) approved.  We will finally start getting some assistance with Katha's pull-ups.  We now have to go to the Shopper's Drug Mart in Lacombe for pull-ups but considering how many she is going through, it's worth it.

For those of you who follow me on facebook, you will already know, but we got a dog as well.  He is really small and only 9 weeks old.  We've only had him for just over a week but it's going well so far.  One of the main reasons we got our dog (Oreo) was so that he could be someone for Katha to cuddle with when she becomes bed ridden.  We wanted to make sure to get the dog now so that they have time to bond while Katha is still doing well.



Onto the symptoms:

Enlarged liver and spleen:  Her spleen is slightly enlarged, while her liver is completely normal.  Both are functioning normally.

Ataxia (unsteady gait):  Katha is walking pretty well.  Her cataplexy causes problems once in a while, but she is very stubborn and enjoys walking as much as she can.  In fact, if she can jog a little, she generally will.  She had her "fun day" at school.  Which is what we used to call track and field day.  She really enjoyed it and when she got home she spent half an hour showing me what kind of activities they were doing.  Just while showing me she fell on her face and hurt herself, but she keeps a great sense of humour when these things happen.

Dysarthria (slurred speech):  Katha is still quiet and often needs me to translate for her when talking to people she doesn't know.  But, with the dementia that she shows, she often talks in bits and pieces.  For example in one sentence she might have 3 different thoughts about what happened in her day and will try to express that all at once.

Dysphagia (trouble swallowing):  I have received and filled out the form.  I'm just waiting for them to call and set up an appointment.  I have already called them to tell them that I am ready whenever they are.

Basal Ganglia (holding limbs at awkward positions):  She does this, but it's not noticeable unless you are looking for it.

Dementia (memory loss):  This has remained the same.  It is affecting her, however, she deals with it well, and if you remind her of what she was trying to remember, she generally will remember.

Seizures:  Katha still has not had any seizures.

Gelastic Cataplexy (falling down in response to a large emotional outburst):  This happens probably once every couple days.

Sleep related disorders:  Katha sleeping has evened out.  She is still quite tired in the morning but gets over it quickly.  Having the dog has helped with this by having someone new to play with she won't go lay down instead of playing in the afternoon.

Sensitivity to touch:  Katha REALLY doesn't like it when the puppy nips at her (of course!) so this does effect them bonding (which I'm sure will happen eventually).  However, she will pet Oreo if he will sit still long enough to let her.  They generally just ignore each other right now.  I got her to cuddle him after his bath last night.  I'm thinking this might have to be Katha's job right now as it's the only time he's calm enough for her right now.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):  Katha has been doing pretty good with this lately.  She still has trouble looking up but sometimes she is actually able to look up slightly.

Hearing:  Although her test came back normal, the doctor put in his last set of notes that he believes that she may have sensitive hearing because of all the times she complains that places are too loud.

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