Saturday, May 28, 2011

Is she sick?

I spend a LOT of time watching Pumpkin -- trying to figure out if what she's got going on is baseline "normal" for her or if it's seizure behavior. Parenting a special needs child is difficult enough. But I've got to answer to so many people about her health. I've got a Medicaid nurse that calls once a month to go over all the day-to-day details. I've also got her family doctor, her neurologist, our agency SW, CPS, CASA, and all the lawyers. Despite my usual amounts of confidence when it comes to parenting young children, I find myself second-guessing my decisions with Pumpkin regularly.

Take today for example...

I slept in this morning. I was uber tired. Mr. Amazing and Herman are gone on a weekend excursion together. I had the bed to myself. I was all sprawled out and comfortable. The fan was blowing and it was good sleeping I say. Good sleeping.

At about 9:00AM though I figured I had better get myself up. My littlest cherubs had been up for a couple hours. They can get themselves breakfast and watch TV all on their own. As for Pumpkin though, I knew she was still just in her bed. I never know when she wakes up. I know that she likes to sleep in some on the weekends. But when she wakes she never does anything to get my attention. She doesn't even get out of bed. At best, she'll reach over and get some books off the shelf that is next to her bed. But, for the most part, she just lies there.

I went into in Pumpkin's room this morning and she hadn't moved at all. No books or toys were in bed with her. For all I know, she had just woken up. I got her dressed and did her hair without incident.

TT & Bart were watching SpongeBob. This just happens to be Pumpkin's absolute favorite thing in the whole entire world!!! She did not indicate any desire to eat breakfast. She crawled up on the couch to watch TV. Rather than take her away from her favorite thing, I got a bowl of dry cereal for her and handed her a sippy cup of milk. Pumpkin seemed fine as she sat there. She even ate the whole bowl of cereal.

I turned off the TV at 10:30. By 10:45 Pumpkin was crawling up on the love seat like she was tired. She was turning her face towards the cushions. She seemed rather "out of it". This is where the guess-work comes in. Why was she doing this? Was she mad because the TV got turned off? Was she simply tired because we were up late the night before? Did she have seizures all night?

I took Pumpkin by the hand and directed her to our guest bedroom downstairs. I covered her up with a blanket and tucked her in for a nap. I left the door open though so I could easily check on her. I also didn't want her to think she was being forced to stay in the room.

Pumpkin fell fast asleep and was out for around an hour. At noon I noticed she was awake and asked if she wanted to get up. She told me no.

She stayed in the bedroom until 5:00PM. I went in about every 30 minutes to see if she wanted to get up. Each time she responded with a "no" and then pulled the blanket up over her head.

For the first hour or two I was OK with this. By mid afternoon though I started to get worried. It's not normal for a child who is almost six to simply go into a dark bedroom and lie there by themselves all day doing nothing. She didn't have a fever. I never saw her have a seizure. She couldn't tell me what was wrong. She doesn't have those kinds of language skills. It was just plain weird.

But it wouldn't have made sense to take her to the doctor either. What would I say? She wants to lay in a dark bedroom and do nothing???? That's not exactly a medical emergency.

At 5:00PM I asked her if she wanted to eat. She popped right up and got out of bed. Of course, when I tried to fix her ponytail she got very upset. But this is typical for Pumpkin. When I offered her some yogurt she gave me a dirty look. But again, this is typical for Pumpkin. She ate the yogurt without complaining along with the rest of dinner. When she was done, she got down from the table and went in to her toys.

Right now she's in the living room playing with her toys. You'd never know anything was out of the ordinary today.

I never quite know how to handle these situations. They tell me she never wants to nap at school. But I see Pumpkin get "tired" like this almost every day she is home with me. I've been making notes on a calendar that I'm going to bring with me to her next neurology appointment. But everything is so vague. Her doctor only seems to want to know about actual seizures. And I see so few of those that all I can do is shrug my shoulders and say, "I don't know for sure". And since Pumpkin can't tell me a single thing about her health, does anyone know?!

It's complicated. The judge isn't going to let bio mom have unsupervised contact with Pumpkin until mom has been "trained" on Pumpkin's condition by a doctor. Pumpkin is never going to be normal though. The seizures aren't going to go away. Pumpkin isn't going to suddenly burst out with meaningful language. I wonder if a judge will ever trust that mom can actually manage her condition. And from what's happened so far with this case, all those people involved in deciding what should happen to Pumpkin, keep asking for my thoughts. Which is why I start second-guessing myself on days like this. Things I say about Pumpkin's condition are going to determine when (or worst case scenario...even whether or not) mom gets another chance at parenting Pumpkin. So how note worthy are today's events?

Of course I'll tell her doctor. And I'll tell any of the rest of the crew that asks. But I'm never going to get used to this level of special needs parenting.


jendoop said...

I wonder if they have any type of seizure monitoring device? Something that would attach to her and would record her brain activity, to tell how often she has seizures, even when they aren't obvious? They have things like that for heart conditions... but then again that newer technology is probably not available to a child in foster care.

CherubMamma said...

They do have extended tests. In fact, Pumpkin had an 11 hour EEG done back in early March. Her neurologist told me that she has extensive "abnormal brain activity". She didn't have any actual "events" during the EEG but I guess things aren't normal by any stretch of the imagination. When I questioned another doctor about the difference between seizure events and abnormal brain activity, I was told it's an arbitrary line drawn in the sand.

I'm still not sure what I'm supposed to do with that information. I suppose if I keep pressing the issue they might do a longer EEG test - possibly in a hospital. They also make backpack devices for extended testing at home. I'm just not sure if it's even possible to bring her seizure activity under control more than it already is. I have no idea what level of healing we can get to -- especially since we're combating severe mental retardation along with the epilepsy. Her quality of life is never going to be wonderful.

It's so sad.