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.
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