Well, as I posted on my Facebook page, we have found out that Katha won't be getting into the cyclodextrin trials. Honestly, this was a huge blow after talking with her doctor and him telling us this was the one chance we have at extending our daughters life at all.
I left this in God's hand knowing he would know what is best for Katha. Sometimes, giving things up to God is really hard when you don't get the answer you were expecting. But, I have faith that God knows more than I do, and knows what's best for my daughter.
Yesterday I got a call from Katha's teacher that the aid is starting today. So, I drove Katha and Dom to school and met her. She seems really nice and I can't wait to work with her more in the future. I haven't seen her interact with Katha yet, but as she is going to be working with her every morning I'm sure they will develop a relationship quickly.
I told her that I really want Katha to like school again. Her two biggest complaints is that the classroom is too noisy and she doesn't have any friends. I also told her that I have noticed that whenever I'm at the school, her classmates all really make an effort to say "hi" to Katha but she doesn't seem to notice.
I think part of the problem is that everything moves to quickly for her, so to cope with that she withdraws and thinks that the world is withdrawing from her. I'm hoping that if she can have someone who can help slow things down for her she will be able to interact with her peers more.
Also, when I got home, there was a message from the Make a Wish Foundation. I had recently applied on their web-site for Katha, and today it was acknowledged that she is eligible. Then this afternoon they called and her doctor had mentioned that the sooner we get our wish the better. It sounds like they will be sending us to Disney World, but they will be doing an interview with Katha when she gets home from school to see if that's the best option for her.
We have also started to plan a trip to B.C. for this summer so Katha can see the ocean for the first time. Amory's dad was telling us there's a mini-reunion in Ontario this year. So, we asked Katha if she would like to go to the ocean, to Montana or to Gramma and Grandpa's. Her initial concern was that she would have to swim with whales in the ocean. Once we told her that there would be no whale actually touching her in the ocean, she voted that one.
So far, we've only been looking at cabins, but thanks to some friends on Facebook, we have started finding reasonably priced places.
For the past few weeks Katha stomach has been really bad. She has been having a lot of accidents. It was to the point last week that she missed three days of school. What has been most frustrating was that she is still on her lactose free diet. I thought that maybe fresh fruit was causing her problems, but after making sure she wasn't having any of that she was still having problems.
So, on Friday I called her doctor who told us to start her dosage of Zavesca all over again. Because she was going to the bathroom every hour they were worried she would start loosing weight if we let that go on too long. If lowering the dosage of the medication doesn't work we will have to take her off of the Zavesca. I would like to avoid this because I honestly think it's helping. Katha has been becoming increasingly aware of her surroundings and hasn't fallen down at home in nearly as much.
She has already started having less trouble with her stomach, and is in school today, so we will see how that goes.
I plan to call Katha's doctor next week because the boys test results should be in by that time to let us know if they have Niemann-Pick as well. I can honestly say I'm scared. It's really tough trying to be strong for one of your kids, but thankful you have two healthy ones. It would be a real blow to find out you have more sick kids than healthy ones.
I know that other Niemann-Pick parents go through exactly that, and I admire them for that. I also know that if one or both of the boys have it we will deal with it. I just pray we don't have to.
I don't think there's anymore updates. Hopefully, the next one will be a happy one saying both the boys are fine!
Here are the symptoms as they stand now:
Enlarged liver: Still enlarged
Enlarged spleen: Still enlarged
Ataxia (unsteady gait): Katha still walks on her toes constantly. In the snow her hand needs to be held constantly because she just doesn't have the balance to navigate the snow.
Dysarthria (slurred speech): Katha still speaks very slowly. She has, however, been able to express herself more clearly and even tells us stories once in a while.
Dysphagia (trouble swallowing): I've been noticing Katha has been having more trouble eating. Not only is it getting harder for her to feed herself, she has trouble swallowing bigger pieces of food. When she coughs, it's like she can't fully cough, which scares me if she ever really chokes.
Basal Ganglia (holding limbs at awkward positions): Katha still does this quite a bit. It makes it difficult to hold her hand when helping her walk. After being on facebook with other Niemann-Pick moms some have mentioned that giving them a gait belt. Which is a belt you can hold onto while they walk to ensure they won't fall down. I think this might be something we invest in soon.
Dementia (memory loss): Katha has been improving in this area. She is starting to remember things that happened a couple days ago. Where before, if it wasn't something big, she probably wouldn't remember it. However, recently she has recalled small things that have happened in day to day life. Things such as which toy she was playing with which day. Small things that we would think nothing of remembering is a big deal for her.
Seizures: No seizures, hopefully it stay that way!
Sleep related disorders: Katha still has trouble going to sleep and waking up. But, all of my kids seem to have that problem.
Gelastic Cataplexy (falling down in response to a large emotional outburst): Katha hasn't had a really bad episode of this since January. I hope it stays that way.
Sensitive Touch: Katha has started initiating hugs with other people again. She will give her grandparents hugs hello and goodbye.