One thing at a time. Please?

So, Katie hasn’t been sleeping well. She’s had a lot of spasticity lately, and has been kind of crabby. One could cause the other, or something else, like an infection, could cause both. I don’t know. She doesn’t have any signs of infection, though, so I think the tone is the starting point.

We have one more bottle of stuff to try. I haven’t tried it. The last bottle of stuff (oral baclofen) made her agitated and an insomniac. The bottle before (Artane) made her throw up. That was about three months ago. My three year old is still occasionally, randomly saying, ‘Katie’s dinner turned brown.’ Ugh. I just don’t have heart to try yet another thing in the same class of drugs.

She’s been on Clonazepam for quite awhile now, and it helps, but it also makes her sleepy. As soon as the sleepiness wears off, the spasticity comes right back. Of course, it’s also good for treating seizures (which she doesn’t officially have, but the undefined tics she has had did definitely decrease) and for treating anxiety. I’m pretty sure she has some of that, too. Especially around doctors, dentists, and anyone in scrubs.

So, anyway…

Her muscle tone is to the point that getting her into her chair, feeding her, and changing her diaper have gotten pretty challenging. So, I talked with her physiatrist yesterday. Even though the oral baclofen didn’t go over well, she thinks the baclofen pump would be our next option. Our last physiatrist had broached this awhile ago, and said that they like to do a trial. They admit the person for a day, and give the med by epidural to see how well it works. So, that was what I was expecting.

Our current doc says that they have basically stopped doing that, because they found it wasn’t a good indicator of anything. The epidural and the hospital setting don’t mimic real life very well. Besides, the results are apparently so positive that they are confident in it’s effectiveness.

Okay, so maybe it’s time to try this. But, this is another surgery, albeit a much smaller one than what is planned for October.

The physiatrist thinks it would be a good idea to do the pump first. She thinks it would be good to have on board before Kate’s spine surgery, to help her heal, and keep her tone down while she does. We might also be able to have it done at the same time, but our doc felt it would help more to be in place first.

So, it’s off to meet with the neurosurgeon.

The Baclofen pump sits in the abdomen, and has a little catheter that drips medicine onto the spinal cord.
The Baclofen pump sits in the abdomen, and has a little catheter that drips medicine onto the spinal cord.

Can I get that with a side of Fragile X…?

I have a group I get together with occasionally to talk about various ethical situations. You know – for fun. Recently we’ve been talking about something called PGS. This is a screen that can be done on embryos prior to being implanted into their would-be mommy. It can identify genetic anomalies. It can also tell sex and potentially even things like eye color and whatnot, although most clinics are taking a clear stance that they won’t let patients order up little blue eyed blond boys.

We have been trying to figure out the ethical stance on testing embryos for genetic anomalies prior to in vitro fertilization. It’s a muddy question. If you know an enbryo has the genetic code for a disorder that will let the child live about two painful weeks before expiring, should you weed that one out? To me, that seems pretty reasonable. Do you pitch every one that has trisomy 21? For me, that’s tougher. I know people with Down syndrome. Bright, beautiful, sweet, WHOLE, happy people. I think our world would be diminshed for the lack of them.

I’m going to add a quick aside here. This isn’t meant to be a discussion about abortion. When couples have in vitro fertilization, it is common that some embryos won’t be implanted. Wherever you happen to stand on that, this info is just meant to be background for what I’m trying to get to here.

That said, my real question is, why are we asking this? What do these would be parents think they are getting?

Parenting any child is hard. Being a parent means making a huge shift in your life, putting yourself, your dreams, your whatever, on the back burner, and finding a different kind of joy in the amazing little person you brought into the world.

If you sign up for parenting, you are contracting it in blood. You might have a child with a disability. It might be something that a casual observer doesn’t notice. It might keep you from going and doing the things you did before. It might result in your child dying.

You might have a child with no problems at all. Happy, healthy, gets good grades.

He might fall out of a tree.

He might break his neck.

He might get cancer.

Are you going to stop parenting because it got harder?

Odds are, no. Odds are, you will handle whatever your kids need, and you will adapt as their needs adapt. People don’t come with guarantees. Don’t count on a test ahead of time as the decision point of whether you want to be a parent.

Parenting is like enlisting in the army. If you aren’t prepared to do the tour, don’t sign up.

Katie's buddy Rylee.
Katie’s buddy Rylee.

Chapter 298: Wherein I realize I’ve done my daughter a grave injustice. Again.

I adore my girl. I adore both my girls, actually, but since this bit is primarily about Katie, I’m just going to talk about my feelings for her right now. Please don’t go off about Anna being neglected or marginalized. She has me wrapped around her little finger, and she knows it.

So, anyway.

Katie is special. She is awesome. She is almost ten years old, and since she really isn’t into presents, I think we’ll focus on a big happy party for her birthday in a couple weeks.

Since she was little, people have called her an angel. Initially, I felt the same way. My mom in law and I both used to say that if the Rapture started, we would grab onto her toes, because she would be going straight up.

It wasn’t until a couple of years ago that I realized this wasn’t a compliment. As an individual who happens to have autism as a characteristic explained, an angel is not a human being. When you refer to someone as an angel, you are robbing them of their humanity.

Kinda harsh, I know. It is only meant as a compliment. But the truth is, my daughter is a full fledged human being, with all the thoughts, desires, jealousy, vanity, and everything else that goes along with it. She’s no more an angel than I am.

Of course, having realized that she isn’t an angel, it occurred to me that I haven’t been giving her all the tools for life that I would have otherwise. This boils down to her education in Christianity. If she belongs to God already, is there any point in trying to teach her about Jesus and sin and forgiveness?

For the first several years of her life, Katie basically didn’t go to church. To be fair, the rest of the family didn’t, either. I had been meaning to find a place where I was comfortable, but made it out once or twice a year to check out new places, so it’s been slow going.

We have found a church that is a good fit, and my girls are both going. They both seem to be enjoying it immensely. Anna was actually distressed the other weekend when we skipped church to go for a ride on grandpa’s boat.

Katie is getting the tools she needs to work out the hard questions in life. I hope it helps her with the stresses she experiences as a ten year old, very human girl.

She isn’t an angel. She doesn’t express herself the way most 10 year olds do, but that doesn’t make her any less human. While I preach it to others, sometimes I need to remind myself of that.

Katie is almost ten.
Katie is almost ten.