So, we have now been on Zavesca now over 3 weeks. We picked up the medication at the Children's hospital and discovered there were only 180 pills. That means that this medication was much more than we anticipated. We thank God everyday that it is covered. I have noticed a few changes in Katha, but not a lot. Which the doctor said would be pretty much what would happen.
Christmas is just around the corner, and I think I'm completely ready for it. We had the kids Christmas concert last night and while Katha was up on stage, all I could think was "is this the last Christmas concert she's going to be well enough to be in?" I try not to think of these things too often. It makes me cry.
We had someone come out to make some suggestions for what we will need for renovations to the house for when Katha becomes immobile. They suggested tracks along the roof, a walk-in shower and a lift for the back deck rather than a ramp. They also let us know that the lift alone will cost us $6000. That's installed but without any of the prep work that would have to be done before they could install it. We would have to landscape to raise the ground beneath it 4 inches because the largest lift available is 6 feet, and our deck is 6 feet 4 inches.
We also went to look at how a walk-in shower works. It's kind of awesome. Imagine a walk-in closet turned into a shower, because that's exactly what the one we went to look at was. I think it will be do-able in that room. Which is good.
Amory and I have been talking a lot about the renovations. We are going to start them in the spring hopefully. I told him that I think we shouldn't build a separate room in the basement because I'm sure the boys would rather share a room down there. Also, by the time this is all over, I'm not sure we'll be staying in this house. Too many memories. Amory figures I won't want to move because of all the good memories. I honestly could see it going either way.
Katha has lost all interest in school. It worries me because last year she would cry if I made her stay home because she was sick. This year she cries if I make her go. I spoke with the special needs teacher at Katha's school, and she's going to start going to the special needs classroom for language arts and math. Her principal also told me that she is going to start having an EA full time just for her starting in January. We're hoping to get Katha to start liking school again. Hopefully, then she will start making an effort again.
Katha has also mentioned several times that she has no friends at school and that the kids are too loud there. Her teacher is going to let her wear earphones in class, and when I went to see the special needs teacher Katha wasn't there for more than 2 minutes when a little girl named Emily came up, shook Katha's hand and asked her if she wanted to play. I think the special needs class might be the place for Katha, but I'm going to see if the EA can do something with her in the New Year because I'm pretty sure that if she goes into the special needs class there will be no EA for her.
Anyways, onto the symptoms:
Enlarged liver: According to our last ultrasound, it is slightly enlarged
Enlarged spleen: The same ultrasound revealed the Dr. Khan was right, and it is enlarged quite a bit.
Ataxia (unsteady gait): Katha is slightly more steady on her feet since starting the medication. She hasn't had a bad spill at school for about a week.
Dysarthria (slurred speech): Her speech is still quite slurred. She is very shy about it, so won't talk very loudly because of it. So, when she is in a crowed place ends up yelling because I just can't hear her.
Dysphagia (trouble swallowing): Katha still drools quite a bit, but her eating is still normal.
Basal Ganglia (holding limbs at awkward positions): Since starting the medication Katha's dexterity has been the most notable improved. She isn't dropping things as much, and writing has become a little easier.
Dementia (memory loss): Katha forgets much more than I realised. She has started forgetting certain movies she used to watch all the time, or she won't remember when or where she got a toy. She also struggles to remember certain words.
Seizures: I don't think Katha has had a seizure. She has an EEG on January 10th that will let us know for sure.
Sleep related disorders: Katha has started to stay up really late at night (11 or 12) I don't know if she's trying to go to school or if the medication or disease is effecting her.
Gelastic Cataplexy (falling down in response to a large emotional outburst): Amory thinks this is getting better, I don't. I still see her fall down a lot when she is laughing. Amory swears he can tickle her once in a while now without her falling down. We'll keep an eye on this one.
Sensitive Touch: Katha is still very affectionate with me, and she has been more affectionate with Amory lately. During the Christmas concert the girl behind Katha kept touching her back and you could tell Katha didn't know whether to laugh it off or get mad. I don't know if this had anything to do with it but it made me giggle.
Bladder control: Katha is in a pull-up full time but still makes it to the bathroom regularly. Even with the medications main symptom being loose bowels Katha has yet to have a bad accident because of it.
Hearing Loss: We finally got Katha tested and her hearing is perfectly normal. Now, because of her complaining about loud noises we're worried her hearing might be overly sensitive.
Friday 21 December 2012
Monday 3 December 2012
Dec. 3/12
So, we have gotten home from our Disneyland. The kids all had a wonderful time and best of all, there were no medical emergencies! I spent most of the bus ride from Anaheim to LA just thanking God for taking care of us on our trip.
Before we left we found out Katha's medication is in. We got a phone call on the Friday before we left asking us for all of our insurance information. The pharmacist let us know that just this batch we're getting is worth $20,000. I haven't heard back from them. So, I'm guessing that the payment when through. She told us if there was a problem she would call back.
Katha had such a great time in Disneyland. Amory and I started calling her "perma-grin" because she just wouldn't stop smiling, which made all of us happy.
We didn't send Dom or Katha to school today. Dom got a cold while we were there because it rained on Friday. He's, of course, milking it for all he can.
I think it kind of shocked Mom and Dad to see Katha having to deal with her illness on an everyday level. Simple things that she could do a few months ago she can no longer do.
The wheelchair was a life-saver. There was no way Katha would have lasted more than a couple hours if we didn't have it. But, if we weren't going to be walking to much (down to a restaurant or something) we would make her walk. Plus, she hasn't touched it since we've gotten home.
We did a journal of the whole trip and I saved whatever I could so the kids could make a scrapbook out of it. I hope this will remind all of them of the trip for years to come.
Before we left we went to Bashaw to see Beauty and The Beast. My cousins Connie and Kristy both had their kids in it.
They heard we were coming and about Katha being sick and really went above and beyond. She not only got a front row seat but they gave her a pillow, a Christmas ornament, programs, a picture book, a bow, a rose, and a t-shirt. She was in seventh heaven. In fact, when we met Belle at our character breakfast she told her that she liked the other Belle better. Luckily, the Disney Belle didn't exactly understand her, lol.
I posted a lot of pictures on my facebook of everything. I still haven't gone through all of Amory's pictures, and he took a lot more than I did.
Auntie Donna and Jenna met us at the airport when we got back. Auntie Donna had even found chocolate chips that are lactose free and made Katha some chocolate chip cookies. She could barely wait until we got home to try one. Her whole face lit up when she took a bite.
We also got an e-mail while we were in California from the NIH. They will be doing the cyclodextrin trials. They are still hoping to start in January, but they are now accepting applicants. From what I got in the e-mail there are a couple things that worry me.
They are putting the 9 patients in groups of 3 and are doing dosages according to the group. So, if in your group the NIH decides they want to up the dosage, you are not allowed to say no. From what I gather, we are going to have to sign something that won't let us back out of testing once we enter.
I have spoken to some other NPC families and from what I gather the NIH doesn't have your kids best interest at heart. In fact, they treat them like lab rats. So, this caused Amory and I to have a very serious discussion on the way home about whether or not we even want to be part of the trial anymore.
After receiving the e-mail I sent it straight to Dr. Khan with the request to be able to see him on Dec. 5th, when we will be down in Calgary for an ultrasound. I haven't heard back from him yet. But, I think we're going to apply but since they are only accepting 9 people and most likely wanting Americans to cut down on expenses, there's little chance we'll get in.
I will re-update after we've been on the Zavesca for a while to see if there's much difference if any on Katha symptoms. So, as of today they are:
Enlarged liver: Same
Enlarged spleen: Still 6cm below her ribcage.
Ataxia (unsteady gait): Katha continues to fall down a lot. The need for a wheelchair is become more and more evident. Luckily, she seems to like the wheelchair, but is still willing to walk if it is not too great of a distance.
Dysarthria (slurred speech): Katha is becoming harder to understand. Unless you are around her a lot, you sometimes have a great difficulty making out what she is trying to say. This causes Katha to not want to talk to strangers a lot. It also causes her great frustration when you have to ask her to repeat herself.
Dysphagia (trouble swallowing): Katha's drooling is becoming more of a problem. But, she still rarely chokes and still has a good appetite.
Basal Ganglia (holding limbs at awkward positions): Katha's finger are often curled and her small motor skills are all but gone because of it. She now asks for a sippy cup rather than a regular cup because she can't hold a cup very well. If she can't get a sippy cup she wants a straw. Her printing (although always sloppy) is almost unreadable now.
Dementia (memory loss): Katha needs a lot of reminders throughout the day. I noticed this most when doing the journal. I would ask her about her day and she simply wouldn't remember. However, when I would remind her what we did that day, she would have a conversation about it.
Seizures: Katha still has not had a seizure and we're hoping to keep it this way for a while.
Sleep related disorders: She often comments on how tired she is. When asked if she wants to go to school she will often say she doesn't want to because she is too tired. I don't know if this is just an excuse or she really is exhausted. Honestly, I think it's a little of both.
Gelastic Cataplexy (falling down in response to a large emotional outburst): The wheelchair was great for this as well. I could finally make her laugh without fear that she would hurt herself. It was great to hear her really laugh again.
Sensitive Touch: We noticed that Katha doesn't really like anyone but me touching her anymore. We wondered if this was because of her increased sensitivity to touch. I worry how long it will be until she doesn't want me touching her anymore either.
Bladder control: Katha was in pull-ups our entire trip but kept them dry most of the time.
Hearing Loss: Dr. Khan should be testing for this very soon but I honestly wonder if it wasn't just my imagination because she seems to hear things I don't think she should be able to.
Before we left we found out Katha's medication is in. We got a phone call on the Friday before we left asking us for all of our insurance information. The pharmacist let us know that just this batch we're getting is worth $20,000. I haven't heard back from them. So, I'm guessing that the payment when through. She told us if there was a problem she would call back.
Katha had such a great time in Disneyland. Amory and I started calling her "perma-grin" because she just wouldn't stop smiling, which made all of us happy.
We didn't send Dom or Katha to school today. Dom got a cold while we were there because it rained on Friday. He's, of course, milking it for all he can.
I think it kind of shocked Mom and Dad to see Katha having to deal with her illness on an everyday level. Simple things that she could do a few months ago she can no longer do.
The wheelchair was a life-saver. There was no way Katha would have lasted more than a couple hours if we didn't have it. But, if we weren't going to be walking to much (down to a restaurant or something) we would make her walk. Plus, she hasn't touched it since we've gotten home.
We did a journal of the whole trip and I saved whatever I could so the kids could make a scrapbook out of it. I hope this will remind all of them of the trip for years to come.
Before we left we went to Bashaw to see Beauty and The Beast. My cousins Connie and Kristy both had their kids in it.
They heard we were coming and about Katha being sick and really went above and beyond. She not only got a front row seat but they gave her a pillow, a Christmas ornament, programs, a picture book, a bow, a rose, and a t-shirt. She was in seventh heaven. In fact, when we met Belle at our character breakfast she told her that she liked the other Belle better. Luckily, the Disney Belle didn't exactly understand her, lol.
I posted a lot of pictures on my facebook of everything. I still haven't gone through all of Amory's pictures, and he took a lot more than I did.
Auntie Donna and Jenna met us at the airport when we got back. Auntie Donna had even found chocolate chips that are lactose free and made Katha some chocolate chip cookies. She could barely wait until we got home to try one. Her whole face lit up when she took a bite.
We also got an e-mail while we were in California from the NIH. They will be doing the cyclodextrin trials. They are still hoping to start in January, but they are now accepting applicants. From what I got in the e-mail there are a couple things that worry me.
They are putting the 9 patients in groups of 3 and are doing dosages according to the group. So, if in your group the NIH decides they want to up the dosage, you are not allowed to say no. From what I gather, we are going to have to sign something that won't let us back out of testing once we enter.
I have spoken to some other NPC families and from what I gather the NIH doesn't have your kids best interest at heart. In fact, they treat them like lab rats. So, this caused Amory and I to have a very serious discussion on the way home about whether or not we even want to be part of the trial anymore.
After receiving the e-mail I sent it straight to Dr. Khan with the request to be able to see him on Dec. 5th, when we will be down in Calgary for an ultrasound. I haven't heard back from him yet. But, I think we're going to apply but since they are only accepting 9 people and most likely wanting Americans to cut down on expenses, there's little chance we'll get in.
I will re-update after we've been on the Zavesca for a while to see if there's much difference if any on Katha symptoms. So, as of today they are:
Enlarged liver: Same
Enlarged spleen: Still 6cm below her ribcage.
Ataxia (unsteady gait): Katha continues to fall down a lot. The need for a wheelchair is become more and more evident. Luckily, she seems to like the wheelchair, but is still willing to walk if it is not too great of a distance.
Dysarthria (slurred speech): Katha is becoming harder to understand. Unless you are around her a lot, you sometimes have a great difficulty making out what she is trying to say. This causes Katha to not want to talk to strangers a lot. It also causes her great frustration when you have to ask her to repeat herself.
Dysphagia (trouble swallowing): Katha's drooling is becoming more of a problem. But, she still rarely chokes and still has a good appetite.
Basal Ganglia (holding limbs at awkward positions): Katha's finger are often curled and her small motor skills are all but gone because of it. She now asks for a sippy cup rather than a regular cup because she can't hold a cup very well. If she can't get a sippy cup she wants a straw. Her printing (although always sloppy) is almost unreadable now.
Dementia (memory loss): Katha needs a lot of reminders throughout the day. I noticed this most when doing the journal. I would ask her about her day and she simply wouldn't remember. However, when I would remind her what we did that day, she would have a conversation about it.
Seizures: Katha still has not had a seizure and we're hoping to keep it this way for a while.
Sleep related disorders: She often comments on how tired she is. When asked if she wants to go to school she will often say she doesn't want to because she is too tired. I don't know if this is just an excuse or she really is exhausted. Honestly, I think it's a little of both.
Gelastic Cataplexy (falling down in response to a large emotional outburst): The wheelchair was great for this as well. I could finally make her laugh without fear that she would hurt herself. It was great to hear her really laugh again.
Sensitive Touch: We noticed that Katha doesn't really like anyone but me touching her anymore. We wondered if this was because of her increased sensitivity to touch. I worry how long it will be until she doesn't want me touching her anymore either.
Bladder control: Katha was in pull-ups our entire trip but kept them dry most of the time.
Hearing Loss: Dr. Khan should be testing for this very soon but I honestly wonder if it wasn't just my imagination because she seems to hear things I don't think she should be able to.
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