Sunday, 30 June 2013

June 30, 2013

We had an appointment with Katha's neurologist on Thursday.  Katha was having a bad day and was finally able to show the neurologist her Cataplexy.  However, she also looked up really well.  The neurologist was extremely pleased with Katha's progress since starting the medication.  She is walking better, even her reflexes are better.  She said that she believes that mentally Katha is stable and she doesn't need to see us for a year.

The bad news is that she is transferring hospitals and is not allowed to take any patients with her.  Which means, that by the time we go back (as long as there continues to be no seizures) we will have a different neurologist.  The reason this is bad news is this is the one doctor Katha would be excited to go see.  I hope her new doctor will be as awesome as this one was.

Katha has finished school for the year along with Dominik.  On Wednesday Katha and I went on her field trip.  She had a lot of fun, but is definitely excited to be done school.

She has also been getting up really early and not going to sleep again until late.  I thought this was straightening itself out as insomnia is a side effect of the medication like lactose intolerance which has been going away slowly but surely.

Katha is able to eat pizza again, along with pancakes and bagels.  She is a very happy girl.  I would like to try ice cream, but am a little worried on how her stomach would react.  However, if we could do this, she wouldn't really have any eating restrictions anymore.  It would make her very happy.

We leave for Manitoba on Friday or Saturday.  Last year right after we got back from Manitoba was when they started testing for NPC.  It will be the first time Don and Patty have seen her since she was diagnosed.  We usually would let them come here this year, but we figure this will probably be the last time Katha will be able to make such a long trip, so we'd better do it while she still can.

Onto the symptoms:

Enlarged liver and spleen:  Still the same, liver is good, spleen is slightly enlarged.

Ataxia (unsteady gait):  Katha is still Katha.  She falls down, and she gets back up.  Her walk, I don't think, will ever be normal, but she makes do.

Dysarthria (slurred speech):  Katha has good days and bad days.  Sometimes, people seem to understand her, other times I have to translate for her.

Dysphagia (trouble swallowing):  She still chokes on water.  She has an appointment in mid-July with the people who will be doing a swallowing assessment.

Basal Ganglia (holding limbs at awkward positions):  She still does this and still, unless your looking for it, I don't think you would ever notice it.

Dementia (memory loss):  Same.  We're continuing to play memory games, but her memory will still slip a lot.

Seizures:  Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst):  This happens quite a bit, especially when she is tired.

Sleep related disorders:  Like I said before, she has trouble going to sleep and is often up early

Sensitivity to touch:  Katha doesn't show much signs of this other than the puppy.  His general fluffiness doesn't sit well with Katha, but she does try.  She still likes to cuddle Oreo if he is wrapped up in a towel or something.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):  Katha has been doing fairly well with this.  She looked up at an air balloon the other day and said there was two of them.  So, even when she can look up, she sees double.  She FINALLY has an opthamologist appointment in July.

Hearing:  I still wonder if she has sensitive hearing.  When I get the opportunity I will have this tested.

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.