Since I last updated there has been a lot of good news. First, we found out that Amory's work insurance will cover Katha's medication with no limit. They also don't require us to be reimbursed. Which means the medication that would have cost us $60,000/year according to the doctor is now virtually free to us.
We also got a wheelchair for Katha to use whenever she is walking a long way. Which will be very helpful when we go to Disneyland. We got it from the Lending Cupboard in Red Deer. They allow us to keep it for as long as we need it, and they didn't charge us anything for it.
Dr. Khan when we were in his office told us that kids with NPC often end up dying of pneumonia because their lungs fill up with fluid and their little bodies aren't strong enough to fight it off. When we went to get our flu shots the health nurse mentioned that there is a new pneumococcal shot that protects against 23 strains of pneumonia instead of the 7 Katha originally got. So, we updated that shot. Although, Katha was REALLY not happy with us.
We still cannot find travel insurance for Disneyland, but I think I found a company that will insure us if we get into the cyclodextrin trials.
I also just heard from Dr. Smyth (the neurologist) that they are willing to give us a prescription for a medication we can give Katha if she starts having seizures while we're in the States. It will stop the seizure until we can get back to Canada and have her checked out.
Last, but certainly not least, we completed her evaluation and her cognitive skills are under the first percentile. If she was a normal kid, they should be near the 50th. However, she is currently keeping up to the 25th or 30th percentile in her work. This means that she is working her butt off everyday to do as much as she can and I am so proud of her. What this means for me is that I'm not simply letting her slack off. Which, honestly, is a huge concern of mine because I want to give her as much as I can. Which, includes the best education she can handle.
At the evaluation one of the women mentioned that they have never had someone come in with a fatal diagnosis. She was amazed that I was just like any other mother. I'm not quite sure what she meant, I think she expected me to be a basket case. I feel like that a lot, actually. That people expect me to be a wreck and are shocked when I'm not. Don't get me wrong, I have my moments, but I feel like I've already been dealing with this for 3 months. 3 months ago, I was an absolute wreck every time I was by myself. It took me 2 weeks to be able to look at any of my kids without wanting to break down and cry. But, when she asked me how I was able to be so strong, I told her the truth, it is the incredible support from my family and friends, but also the fact that I know God is giving me strength to get through this.
Honestly, the waiting was a very difficult part. Especially because I didn't want to tell anyone about it until we had a confirmed diagnosis. Now, being able to talk to people about it, that has helped a great deal.
Anyways, onto the symptoms:
Enlarged liver: Same
Enlarged spleen: Still 6cm below her ribcage. (Your spleen should be completely hidden by your ribcage.
Ataxia (unsteady gait): Katha continues to fall down a lot. When speaking with her teacher we both agreed to keep her out of her wheelchair and keep her walking as much as we can.
Dysarthria (slurred speech): She still slurs, and talks slowly. But has been singing and telling more stories, especially about Disneyland.
Dysphagia (trouble swallowing): Katha's drooling is getting worse. She is having trouble drinking out of a regular glass because she can't tilt her head back and because of worsening small motor skills can't hold onto the glass. She is quite happy when given a sippy cup because she can't spill. But, I'm thinking a water bottle with a straw top would work better for her.
Basal Ganglia (holding limbs at awkward positions): Katha dexterity is becoming seriously compromised. She can hardly do any small task anymore and is easily frustrated when she can't. But, really, who can blame her. Her fingers seem like they can't completely close against her hand anymore, which makes handling small objects impossible.
Dementia (memory loss): She simply seems to have a bad memory. New things you try to teach her don't seem to stick around long.
Seizures: She still has not had a seizure. We are going to have the presciption for her neurologist hopefully soon to help deal with this when it does happen.
Sleep related disorders: Katha sleeps 12 hours a night, and still often requires an hour nap during the day.
Gelastic Cataplexy (falling down in response to a large emotional outburst): Katha falls down a lot because of this. Whenever she scared or happy. The fact that the medication for it has a lot of bad side effects and only works some of the time, this is something we're just going to have to deal with from here on out.
Sensitive Touch: This definitely did not help having to get a needle this week. She hasn't shown as many signs of her sensitive touch this week.
Bladder control: Katha is trying very hard to make sure this does not become a serious issue.
Hearing Loss: Dr. Khan should be testing for this very soon.