An addendum to yesterday's post

So, as I had to hurriedly finish yesterday, as naptime was not half as long as I expected (or hoped), I am planning to tell my cousin and family. I just want to have all the information before I do. I don't want to start the conversation with "Hey, cuz, your kid may be a ticking time bomb, but I'll be able to tell you more in three months after the lab gets my results back, try not to worry until then." My sarcasm is veiling some anxiety. I do not actually want to have this conversation with my cousin, because I really don't want to have to bring bad news. I'd rather be able to call her up and say "Lucy has a genetic condition, but it's only her. So you don't have to worry unless you really want to."

Why I don't tell Facebook.

1. Nobody at work knows about this blog yet.
2. My cousin the germophobe who stays home with her baby also doesn't know about this blog yet.
3. My mom's best friend is my facebook friend.

So let's go one at a time here:

1. Nobody at work knows about this blog. Let's take a purely practical stance here. I live 45 minutes from the shitty hospital with a PICU and 90 minutes from the good hospital where our neurologist is based with a PICU. Every single time Lucy goes into status, we get airlifted to one of these hospitals. It costs us approximately one year's salary for each flight. Our insurance has been awesome about covering this, but there's a couple of things we worry about: (1) we have a $2 million/year cap which at some point we might actually meet because of this; and 2. remember I said the closest hospital is shitty? We have to try to convince the local ER doctor to send us farther away to the good hospital, and I'm not always successful. The last time we were there, the doctors not only tried to kill Lucy themselves, but then they tried to instruct us to kill her. So we might need to move to put us closer to the better hospital, which will mean that I might need to not go back to work. Please don't tell my boss.

2. My cousin is a germophobe who stays home with her kid. Her kid who is the EXACT same age as Lucy. Hold onto that thought for a moment, and consider this one: DSDs are genetic disorders. Sometimes they are de novo (which means that Lucy's genes broke themselves) or sometimes they are inherited. So we are going back for some parental cheek-swabbing in a few weeks. Our google-researching tells us that if it's inherited it's better for Lucy. However, I've been told that my cousin's kid has never had a fever. Since Davet's frequently presents as febrile seizures, I'm a little freaked out by this. So I can't say "Dravet" on facebook, because I don't need her googling yet.

3. My mom's best friend is my facebook friend. And my mom thinks she's a doctor who can solve this by rereading medical textbooks from 1964. I'm not ready to say "Dravet" to mom yet, because I'm not ready to tell her what it means yet. But I suspect it's coming, because I'm getting tired of telling people that Lucy's last seizure is not her last seizure, if you get my drift. And the final reason, ultimately: our neurologist, who really is awesome, isn't nailing down a diagnosis yet. Lucy has an SCN1A mutation. We know that. I've had a professional come to the house and look at her, and I know that Lucy has some significant gross and fine motor delays. I also know that intellectually and verbally, she's doing fine. She has a huge vocabulary (between 75-150 words) uses simple sentences, follows some 2- and 3-step commands, and is even starting to use pronouns.

Dravet is a scary thing to say. Any of the diagnoses are scary. When they first told us she had a seizure disorder, that is all I would say. I couldn't bring myself to say epilepsy, because that sounded worse. It also made it true. I don't know if I'm ready for this to be true. This is a link to a video about a girl with Dravet's called Ciara's Light. Some seizures are shown, so it can be pretty upsetting. Also, the mother discusses the possibility of SUDEP, which every episode of status seems to make more possible, along with the terrible possibility of death during a seizure.

Practical Miracles

I believe in practical miracles.

I don't believe that God will magically heal Lucy. This is how she was made, perfect the way she is. We have no choice but to live with what we have.

But I believe that prayer is a powerful thing that makes it possible for us to be strong and brave in the face of catastrophe and disaster. I believe that it makes it possible for the impatient to be patient and calm. To find ways to be happy with my primary daily conversations with someone who only has about 100 words.

Practical miracles make it possible for the doctors to find better treatments. For us to have found our superhero Dr. Heidi and for the miracle that got us away from the doctors who were too busy to treat Lucy and to our amazing Dr. P. Prayer makes it possible for the medicine to go down. For treatments to work better. For us to figure out what therapists we need, and for the therapy to work. For us to continue to believe. For Lucy to continue to thrive even after all of the obstacles placed in her way.

Practical miracles. Little bits of magic.

What? I'm back.

And where to begin?

I guess with some of the big stuff I don't tell Facebook. Let's go ahead and open Pandora's box. Lu has a Dravet Spectrum Disorder. On facebook, we call it a "genetic mutation" that causes her epilepsy. We call it this because we haven't yet completed the testing that will tell us if it is a de novo mutation (a new mutation that occurred in Lucy alone) or an inherited mutation from one of us. Kind people, some of whom are related to me, keep telling me that they are sure that one day she will outgrow these seizures.

It will never happen.

 Lucy will have seizures her entire life. This syndrome will affect every aspect of her life. 20% of the individuals diagnosed with these disorders do not live to see their 18th birthday. I can't find statistics for life expectancy beyond that -- but I have yet to read about a Dravet patient living into his or her 80s.

Lucy is already experiencing some pretty severe motor delays. She has some obvious immune disregulation, though we haven't and probably cannot back that up with science. I took her to Lowe's for 20 minutes over the weekend. I wiped the cart with Lysol wipes and used the cart cover. I didn't let her touch anything and stayed 10 feet away from all people, including the checkout person. She now has a cold. I am home with her now, on leave from work, though I can't guarantee how long that will happen. Because of Lucy's fragile immune system, we're not sure if it's safe to put her back in daycare; or if it will be safe to expose her to the germs I could bring home; or if it will be safe to bring another person into the bubble to be her nanny.  There are so many uncertainties -- it's hard to make the right decisions.

In Greek and Roman myth, hope was at the bottom of Pandora's box. We think of this as a gift -- after all of the awfulness, a ray of light. I suppose that could make sense -- Lucy's name, after all, comes from the Latin word for light, "lux." However, the ancients would have recognized hope as the cruelest of the punishments in Pandora's box. Hope allows for the idea that life might change -- that things might get better. The cruelest part of Dravet's is what it ultimately takes away -- the child you had. You see, children with Dravet's often develop mostly normally for the first 2 years of their lives, and then they begin to regress. When we look at our little light, we often wonder if we might lose her. Slowly. A little at a time.

Before and after

I am a worrier by nature. When I had a kid, I just simply ramped up the worrying, but that's really because there's just more to worry about. I mean, you get to run the wprry-gamut from whether baby is cold or hot or sick or comfortable to worrying about a plugged tear duct and dry skin and unusual discharge.

And then, on Thanksgiving, there was a line drawn, and I went to a new level.

Baby had some sort of event on Thanksgiving. She had a tremor in her left arm; or some sort of seizure but only involving her left arm. We spent that evening in the emergency room at a country hospital in KY and then in the pediatric emergency room at the University of Kentucky. She spent two days at Children's Hospital. They ran every test*. They all came back negative. So they discharged us with a diagnosis of "dystpnic posturing" which we both googled and got freaked out about and have sworn off the googles because of. I know that's a lot of poor preposition use. Bite me.

We made an appointment with our pediatrician before we left the hospital. We were hoping that it was a fluke of sorts -- after all, there had been no activity while we were at KCH.

And then yesterday, I saw the shaking again. And again today. So either it's simply something she does and we're overprotective or something is wrong and nobody knows what. I keep looking at the pictures we took Thanksgiving when she met her paternal grandparents. They are from "before." We live in the "after," where we're all scared.

*I am not joking. From 10pm on, we were in an episode of "House" -- they did a lumbar puncture, an mri, an eeg, bloodwork. Travis and I were waiting for one of the residents to say "auto-immune."

Scenes From a Marriage, New Parent Edition

I'm nursing Baby Blue, and she makes about the cutest face ever -- while her right hand is clearly flashing the "East Coast" gang sign. I called in my husband, and we chuckled, and I said, "I wish I could get a picture of this."

In no more than THREE SECONDS FLAT, Superdad is standing in front of me with a camera.

And I said, "Um, you're not actually going to take this picture, are you?"

Holy crap you guys, we're getting a new roommate this week.

Another human being is moving in here in the next seven days. She won't be paying rent.

I've organized just about everything, except the areas that I really just can't. (Seriously -- it's hard to crawl into our closets, so those I've been trying to ignore. But now I'm going to have to obsess about them for the next three days, because I can't obsess about the linen closet anymore, because I cleaned it out.)

I'd pack my cats into boxes, except that seems cruel. But very organized . . . .

Speaking of which, my cats are high right now. We put these calming-pheromone collars on them so they don't freak out too much when we bring the tiny human home, and they are in a state of zen most often seen after too many special brownies. So I suppose I did "nest" the cats, although luckily enough for them that just included furminating and a new collar.

I highly recommend. These things kept them calm on a 24-hour car trip, the last four hours of which involved a Very Loud Radio and a driver who was belting every song she knew (I was trying to stay awake by any means necessary.) Needless to say, I lost my voice.

And, to bring this stream-of-consciousness back around, I was pregnant during that move.

So now, we continue to wait for the little . . . .