So, when I first started this blog it was because I had a lot of questions after Katha was diagnosed. I went to the internet for answers. My biggest question was what is our journey going to look like?
What I found was a lot of medical sites but not a lot of personal experiences. So, I figured I would start a blog that could keep all of my loved ones updated while hopefully giving another parent some answers they were looking for.
Mostly, I wanted to know what the end is going to look like.
Well, in this latest update, we're experiencing what I wanted to know about at the beginning.
For months now, Katha has not been eating or drinking a lot. Currently, she has a couple of bites of food a day, if any food at all. She also has about 10 oz. of fluid.
Katha's weight has dropped significantly. At Katha's highest weight she was just over 200 pounds. Currently, Amory and I guess she's around 120 pounds. Her bones are sticking out and I can lift her again.
I believe Katha's blood platelets are low causing her to bleed and bruise easily.
She is getting pressure ulcers from the way she sits. We went to the hospital for this a couple weeks ago because I was worried it was infected. It wasn't and the doctor informed us that it would heal by itself.
Katha is tired all of the time. She still gets out of bed every single day. Mostly, I think because she is too stubborn to stay in bed. She gets up between 1 and 4, usually, falling asleep at the table by 8 and can be convinced to go to bed around 10.
She has also started to have absence seizures. When most people think of seizures, they think of falling on the floor and flopping around. That's not what happens to Katha. She spaces out and it looks just like when anyone spaces out. However, when you call her name and touch her, she doesn't "come back". It usually lasts 2 or 3 minutes. One night, while I was putting her to bed, she had an absence seizure and I noticed I couldn't hear her breathe. So, I put my ear to her chest and I still couldn't hear her breathe. As I lifted my head she started breathing again and looking around, then she fell asleep. I was so worried she wouldn't be breathing the next morning but she continues to be the warrior princess I know her to be.
Dom and I were discussing Katha and he was saying he just wants one more Christmas with her. I'm not convinced she will make it to Christmas so, this weekend, we are going to set up the tree. I figured, why wait?
I don't know when I'll be able to update next, it's emotionally difficult right now but I do want to record this as it happens so that I remember everything. I also know, it's awkward to know what to say during a time like this so I have a request. Please, feel free to message me on facebook with some memories you have of Katha or favorite stories of her or a way she has touched your life. I'm finding myself very sentimental and it's helping to remember the good times.
Thank you everyone for your continued support I truly love and appreciate all of you. Onto the symptoms:
Enlarged liver and spleen: They are large but not overly.
Dysphagia: I believe this is part of the reason Katha doesn't eat. She chokes on everything, and badly. It freaks people out when they are around her. I think she's partially scared to eat because the choking is so bad.
Basal Ganglia (holding limbs in awkward positions): Whenever I wash Katha's hand I have to pull them straight and it's stiff and sore.
Dementia: Katha shows a lot of signs of dementia now. About a month ago she was sitting on the toilet watching me go about my business. I looked at her and suddenly a look of recognition came across her face. I believe that she actually forgot who I was for a minutes. But, being completely non-verbal now, it's hard to know for sure.
Seizures: As stated above, Katha has absence seizures. The frequency, I would say, is every few days. Which, for a person who has seizures is still quite rarely.
Gelatstic Cataplexy (falling down in response to a large emotional outburst): When Katha passes out now, it lasts about 45 to 60 seconds. Her breathing can get really shallow during these spells.
Sleep related disorders: Katha sleeps on and off most the time. She always seems tired but refuses to stay in bed.
Hearing Loss: I haven't noticed any significant change but again, with her being non-verbal, it's difficult to assess this.
Diabetes: Katha has been on 2 types of insulin since her diabetes diagnosis. Fast acting insulin is for when she eating and helps control her blood sugar quickly. Long lasting is for keeping her blood sugar stable consistently. Katha hasn't had any fast-acting insulin in a few days. We also try to keep her blood sugar slightly high because we often can't get her to eat or drink anything and lows can be quite dangerous.
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