So, not too much to update everyone on. Katha is continuing to do well since starting school. She sleeps most of her weekends away but she likes getting out as well.
On October 14, we went to a Neurologist appointment. Everything was great, it was really just a catch up to see how she is doing. As the doctor said, if Katha was to have a seizure sometime in the next few months, it's good to know how she was fairly recently.
We have recently applied for respite care (even though the forms were sent to me back in April, bad mom!). We should hear about that soon.
Katha is sticking to the wheelchair pretty consistently outside of the house. However, at home, we are thankfully keeping her out of the wheelchair. She needs help in and out of the van and bathtub now. So, I'm starting to have to lift her more.
As far as getting to and from school is going, it's going well. Every Wednesday is hot lunch day and they let Katha hand it out to her class. Even though I have explained that if we are at school at 10 like usually Katha is still up and raring to go at 7:30. We have even beat the teacher to school a couple times on Wednesdays.
So, onto the symptoms:
Enlarged Liver and Spleen: No Change.
Dysarthria (slurred speech): Katha is hard to understand most days but she still insists on telling stories. So, even if I don't understand everything she is saying, I enjoy the fact that at least she is still trying.
Dysphagia (trouble swallowing): Katha is almost guaranteed to choke at least once a day. But, she isn't needing help recovering from it yet.
Basal Ganglia (holding limbs at awkward positions): It can be awkward to hold Katha's hand as she walks because of the way she is holding her arm. Her limbs are quite weak, though, so it's definitely best to use the wheelchair whenever possible. If for some reason we have to leave it behind and she falls down, she is quick to tell me how this is "ALL MY FAULT!" (She may be losing the ability to walk and talk but she sure hasn't lost her attitude, ha ha)
Dementia (memory loss): Katha often forgets what day it is (unless it's Wednesday or Friday). She often refers to things that happened months ago as going to happen any day now. She can get quite confused, but can easily be distracted if it starts to upset her.
Seizures: Still no seizures!
Gelastic Cataplexy (falling down in response to a large emotional outburst): As I told the neurologist, Katha laughs and we dive. We were offered medication for this again, but I turned it down again. I worry about the side effects and the fact there will be a day when she will be taking an outrageous number of pills. I want to hold that day off as long as possible. Plus, as long as she is in her wheelchair, this isn't really an issue as she just slumps in her wheelchair for a second.
Sleep related disorders: Katha has been having trouble getting to sleep again, but she wakes up just fine. Often coming out of her room as I get the boys on the bus at 7:30.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): You don't realise how often you need to look up until you can't. Katha hasn't looked up in a while. She still gets very upset if she is asked to lay on her back or tilt her head back. I really think these two things are related.
Medication: I haven't heard anything from anyone other than to refill the prescription. I'm taking it as no news is good news. A friend on facebook sent me a link to a charity that helps people with these kinds of things when no other funding is available. If push comes to shove, I may have to go that route eventually.