I decided I'm going to try to update as things happen. Hopefully, I'll be able to keep it up. We got Katha a walker for school. Her teacher told us that the supervisors keep finding her laying on the ground outside of the school. They don't know whether she is falling or just getting tired and laying down. Either way, with the walker she can sit if she needs to and it will help keep her on her feet if she's falling. Whenever I take her out of the house she generally wants to hold my hand to help her walk. People stare at us funny all of the time because I'm holding my 8 year olds hand to walk and it probably doesn't help she could pass for 12. Oh well, it just goes to show that you shouldn't judge other people, you never know the reasoning behind the things they do.
We saw Katha's paediatrician. We ended up agreeing that because Katha is doing so well there's really not much she can do for us right now. My heart skipped a beat when she told me this, but after thinking about it for a minute I agreed. However, I did tell her she will become invaluable as this disease progresses.
Her metabolic doctor told us that kids with this disease often end up dying of pneumonia. Their immune system is diminished so as the disease progresses a simple flu could have disastrous results. So, I made sure to inform her paediatrician that when she starts getting bad, we're going to need a doctor in Red Deer that knows Katha's history.
The Make a Wish foundation has set up Katha's going away party for April 20th. The Collicut centre in Red Deer has donated passes for Katha and her entire class to go swimming that day. Katha is very excited about it. She was even wondering if we could invite Dominik's class as well. But, I told her it's better if we just have hers.
While we were in Disneyland Katha fell in love with 2 rides. One was in California Adventure, it was a Little Mermaid ride where you get into a little clam shell and go through the story of the little mermaid. The other was in Fantasy Land and a ride we are all familiar with, it was the Dumbo ride. I have told Katha repeatedly that while we will get to go on the Dumbo ride at Disney world, they won't have the Little Mermaid ride. After looking around the Disney world website I realise that they have recently put in the Little Mermaid ride. Not only that, they have put it almost next to the Dumbo Ride. When I told Katha this her whole face just lit up! I have a feeling we will be spending a lot of time in that little corner of Fantasy land. And it will be totally worth it.
I love being able to talk to other parents on facebook that have kids with Niemann-Pick. They are so supportive and amazing and know exactly what you are going through. The downside is at least twice a month there is a notice of whose child has had to succumb to this terrible disease. So, at least every other week your heart breaks for a family that is going through the worst situation imaginable. And I dread the day it is us. Sometimes, you really do need to remind yourself to enjoy it. Even the hard parts, because it's not going to last forever, or even a long time.
Sometimes, it's just hard. Thank God for the people in my life.
So onto the symptoms:
Enlarged liver: Still enlarged.
Enlarged spleen: Ditto
Ataxia (unsteady gait): Snow and ice are not Katha's friends. In fact, she is desperately afraid of ice on sidewalks and will avoid having to walk through snow like it's the plague. I cannot wait for the winter to be over! She tries so hard to keep up with her friends. I think she finds it easier to keep up with the kindergartners at her school. I think it will be that way for a while.
Dysarthria (slurred speech): Katha can be very difficult to understand but she tries her very best. We have really been focusing on Jarrome's pronunciations, and Katha tries to help. It's really quite funny to watch her try to correct Jarrome when she can't even say the word she's trying to teach him correctly.
Dysphagia (trouble swallowing): Katha has good days and bad days with this. Some days she will tell she no longer likes a food she has loved her entire life. Then, the next day she will eat it again. Her weight is still an issue, but she is holding steady at her current weight. She is in the 88th percentile for height and only about the 60th for weight. So, we are looking into supplements. Hopefully we will be able to find one that she likes.
Basal Ganglia (holding limbs at awkward positions): Katha tries so hard to keep her writing strong. She apparently had a good day yesterday, which is awesome. She has a hard time with writing and with playing the Wii because of this. The reason the Wii is hard is because you have to point the controller at the screen and she can't keep her hand where she needs to to be able to do this.
Dementia (memory loss): I think this is improving. It has gotten a lot better since her aid got her a "me book" in which we help her write about both her day at school and her day at home. The nice thing about this is instead of just asking "how was your day" I can ask "did you have fun playing with this friend?" Which is just what she needs in order to be able to recall most of her day.
Seizures: Still no seizures. Although, last night I had a dream she had her first one, was I ever glad to wake up.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens quite a bit. If Katha starts to find something funny she generally looks for a place to sit down too. It's good she knows to do this, but kind of sad that she has to. But, the wonderful thing is, she still laughs, no matter what.
Sleep related disorders: Katha can get to sleep usually at a fairly decent time, but she does tend to wake up early. When she is home, if she can lay down in the afternoon, it generally helps.
Sensitivity to touch: Katha has started to ask for family cuddles. For her, this is huge considering just a few months ago she wouldn't let anyone but me touch her. When we do have family cuddles we usually go to our room and it usually ends up in a tickle war. Katha is always the first one in the room. She also loves to be tickled.
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