Riding the bipolar train

This.  Is.  Just.  Intolerable.

Okay.  So, we were okayed for the EDCD waiver, and then we got Medicaid funding, and then while I was having a happy little phone chat with a person I discovered that their CNAs are prohibited from giving medication. 

To quote her:  "We can  remind a patient, but we cannot administer."

This isn't great, especially since the patient may be convulsing and might need rescue diazapam. In her butt. 

I got what I wanted SO WHY DON'T I LIKE IT?

Lucy has medicaid.

We are getting a caregiver.

I am going back to work.

BALLS, Y'ALL.

Just balls.

Excuse me.  I will be off in the corner sniffing her shoes and sobbing. 

Motherfucker.

That is all. 

Hope is the thing with feathers, right Emily?

Because right now, there are feathers EVERYWHERE.

And I am afraid of feathers. I might, might, MIGHT get to go back to work.

See, today, we met again with the folks from the local government who are going to offer services to Lucy.  They brought in a coordinator, a registered nurse, a physical therapist, and an occupational therapist.  A lot of people looked at Lucy.  The news was what we expected -- some good, some bad.  Her actual chronological age is 17.5 months. 

Social and emotional:  21 months.  Very good.
Verbal:  24 months.  EXCELLENT.
Gross motor:  16 months.  This was actually surprising, because we thought she was more delayed than that. 
Fine motor:  14 months.  Disappointing.  We thought she was not quite so delayed here. 

The physical therapist helped us understand some things about Lucy in regards to the delay, which I'll explain in a moment -- but for those of you with kids, or considering kids, I really recommend any book by Dr. Sears.  He has a philosophy of trying to get behind your kid's eyes, which can really help you understand your child.  Why does Lucy fight sleeping alone in a crib?  It's scary when I walk away -- she's never been alone in her life, EVER.  It's so much better if she can see another human being. 

That being said, Travis and I don't really understand what it's like to be in her body.  In addition to the seizures, Lucy has a condition called hypotonia.  Essentially, her muscles and ligaments are extremely loose and flexible, which doesn;t sound necessarily bad, but she can't always control them, which is bad.  This isn't a muscle thing, which we could counter with exercises, but a brain-to-body thing.  When she was first learning to walk, she would pull up and take a step and then just Bambi out. 

The PT explained that kids with hypotonia learn not to trust their bodies.  They don't trust that the messages they get will be accurate, and they don't trust that their bodies will be there for them.  Understanding this really helped me understand a lot about Lucy -- why she doesn't want to use a fork -- because she doesn't trust that she'll be able to.  That she doesn't want to stack blocks, because it's really frustrating -- but she'll stack anything with a hole on it on her wooden ring-stack toy.  She knows she's supposed to do these things, and part of her wants to, but mostly she's either afraid to or she's given up.  I'm so sad about this, but at least we know what to work on now. 

Lucy's homework: 

1. Stack blocks.

2.  Scribble with crayon.

3.  Try to walk up the stairs.

BUT, while talking with the service coordinator today, I discovered that for some reason, Lucy is eligible for medicaid.  (Just Lucy.  Not us.)  Which means that she might then be eligible for home health services.  Which might mean that the person who comes to take care of her everyday might be an LPN.

Which might mean that I get to go back to work.

I KNOW.  I'm so happy I'm sharing happyfuntimes with all of you. 

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.

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.

Nice shoes, lady! or, a blog about vomit.

I'm pregnant.

I feel that this would have been obvious to the average person who knew me pretty well and saw me on a day to day basis -- if you had been working with me for the last two months, you would have undoubtedly noticed that I (1) stopped wearing all high heels and (2) stopped wearing anything with a waist, and (3) perhaps the most obvious -- I am not drinking coffee like it's a life support system.*

This means, of course, that I'm down to five outfits and three pairs of shoes. Maybe my new coworkers think I'm poor. Or that I don't care what I look like. I mean, they've seen me on wild hair mornings when I just don't have the energy to dry my hair -- or when I think the hair dryer might make me hurl.

You know, pregnancy is teaching me a great deal of humility. I had to tell my boss earlier than I intended for a number of reasons, most notably that the fall schedule was already being created and because I figured I should tell him in case somewhat reports that I am frequently in the ladies' ralphing.

The problem ultimately is (if you'll let me whine) that people are really happy for me. And I'm really happy, too -- but all I can feel right now is sick. Like I have the stomach flu all the time. So when someone comes up to me and is really overjoyed and says, "CONGRATULATIONS!" mostly all I can come up with is a wan smile.

Seriously, folks -- I will do an overwhelmingly gooey, happy, overjoyed post. Just as soon as toothpaste stops being disgusting. Promise.

*I swear Starbucks is going to send my husband a condolence card soon.