So, a few things have happened since I last posted. Katha is doing well, and we are really grateful for that. We are worried, however, that seizures have started, kind of. Most people know seizures from what they show in movies and television. Someone falls on the floor and "shakes" for the lack of a better word. Well, that's not what Katha is doing at all. We think she is having "absence seizures". Which is when someone kind of spaces out. The difference between a seizure and someone in la la land, is that you can't bring someone in a seizure out of it.
Katha will "space out" for a few seconds and you can't call her back. I'm not overly worried yet because they don't seem to have any lasting effect. Afterwards she gets really tired and sometimes will complain of a headache, but she is still doing well developmentally.
We have also done the applications so that we can get some respite care when we will need it. After Christmas, we can start looking for a nurse who would be willing to help us out maybe once a week. They will also come in and help me bathe her because it is getting harder. Katha has a hard time getting in and out of the bath, and with my back it's hard for me to lift her in and out all of the time. She also has trouble getting in and out of the vehicle.
Last night was a long one, which is why I decided to post. For the last month at least Katha hasn't had any vertigo which has been a real blessing. However, last night as I was putting her to bed she had one of the worst ones yet, and kept screaming that she couldn't breathe. After waking up several times last night grunting (I think she may have been having seizures but by the time I got there she was sleeping again) she woke up vomiting and with a headache. Now she is afraid to go back to bed.
So, with the all of this happening Amory and I have decided to really make it our goal to get her back to Disneyworld one last time in September while she still can. She lights up on vacation and we just want to be able to do that with her one last time.
Her assessment is finally getting done in the new year, which is great because we will be able to know for sure if these episodes are having any effect of her developmentally.
Well, onto the symptoms:
Enlarged Liver and Spleen: Still the same as far as I know.
Dysarthria (slurred speech): I only catch about 75% of what Katha is saying, but can usually figure out what she is trying to say from that.
Dysphagia (trouble swallowing): Well, as I was getting an up close look at her stomach contents this morning I was noticing she has been eating a lot of food that is easy to swallow and she doesn't need to chew much (which she doesn't!) TMI, I know.
Basal Ganglia (holding limbs at awkward positions): The more tired, or the harder Katha is trying to walk, the more her arm goes almost behind her.
Dementia (memory loss): Katha gets confused easily and forgets quite a bit. The other day she was having a really bad memory day and forgot where the seat belt is in the car. Luckily, she is an easy going child and doesn't get easily frustrated from forgetting things she ought to know.
Seizures: As I mentioned above, we believe these have started.
Gelastic Cataplexy (falling down in response to a large emotional outburst): We try not to make Katha laugh when she's standing anymore. It's a guaranteed fall. Oreo scared her the other day and she took a pretty rough fall. I was actually scared from the way she fell that she might have broken her wrist. So, when she got up I asked if anywhere hurt, she pointed at the very tip of her finger and with a cry said "here". My response was, you're fine, carry on, and she did.
Sleep related disorders: Katha still has trouble getting to sleep but not having a set time she has to get up helps tremendously. On days she has to be up at a certain time (doc appointments, etc.) it is generally not a good day.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): It is best just to assume at this point, Katha can no longer look up. However, she can on her good days. She will also complain fairly often that she "can't see". I believe her vision is starting to fade in and out. Her EA noticed this too. The other day Katha had to find her wheelchair by sound because it seemed she couldn't see at all.
Medication: We still haven't been cut off. The drug company in the states recently tried to cut all the Americans off their drug program but the NIH (National Institute of Health) got involved and had the drug company change it's mind. Hopefully, that makes the |Canadian chapter think about not cutting us Canadians off too!
Thank you everyone for all of your prayers and support. I really do appreciate all of it. I'm always so amazed at people's kindness and generosity!