You may be wondering

why Carrie the CNA is here, since there's that medication issue.  And we are waiting on a nurse. 

I might be getting her in trouble with this post.

But fear not.  Carrie isn't her real name. 

I will not post the name of the agency she works for.  But, when we went over emergency procedures, I assured her that in the event of a seizure that required rescue diazapam, both Travis and I would assume that Lucy administered it herself, if she and Carrie were the only ones here. 

I've also assured the agency that same thing. 

And we all gave each other the look over Lucy's sweet little head, which is to say that nobody's going to stand by and watch the toddler seize and do nothing.

Love and Other Stuff

I love watching Lucy fall in love.

I can see how some people hate watching their kids reach for other people, but I'd rather have Lucy love and trust the person she's with.  And she, after all of two visits from Carrie the CNA, really likes Carrie.  She likes to play with Carrie and hug Carrie and make Carrie eat her necklace (Carrie's necklace, not Lucy's necklace.  Lucy does not wear necklaces.)

I guess my fear is that Carrie isn't me -- so she won't challenge her and teach her the way I will, and Lucy might not keep gaining skills.  So I'll have to teach Carrie, in this time, to think like me.  It's amazing how when you have a kid with a catastrophic illness, you do not fear that they will love their caregiver more.  You instead fear that there will be a stagnation in skills, or that they won't be loved enough because they're so different. 

God bless Carrie. 

As for the Other Stuff, well, Travis had a question about Dravet Spectrum Disorders.  So I called our genetic counselor.  Let me catch y'all up. 

DSDs are unlike most, if not all other genetic disorders in that when you break an SCN1A or SCN1B gene, you may have any of the following:  Febrile seizures, GEFS+, ICE-GTC, SIMFE, or SMEI, which is Dravet Syndrome.  I've listed them in order from mild to severe.  We already know that Febrile Seizures, the mildest form, is off the table.  If you want a brief catchup, go here.

GEFS+ is the next one, and the last of these to be classified as "mild."  We've seen the "G" explained as "generalized" or "genetic" -- and so we wanted to know if that meant that there needed to be a family history for this to still be a possibility. 

Look, we pretty much knew, given how her seizures progress, that this one was off the table, too.  And we also are smart enough to know that labeling Lucy at this point isn't helping.  Knowing that she has this mutation helps, but labeling her after that doesn't, except to give us some closure and maybe give us some idea that it has gotten as bad as it can get. Naming the beast doesn't change treatments or meds, or anything.  We still have to be as aggressinve as we can, and we still have to stop trying to limit her abilities as much as we can.  In fact, I think not naming it keeps us from limiting her as best we can. 

But GEFS+ needs a family history of seizures, which we don't have, and so it is off the table.  Which means we are now in the part of the map where there be dragons.

Beware, dragons.  You don't know what you're up against. 

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. 

This is my last nerve.

Still no results.  Also, they are coming for our EDCD screening tomorrow, and so I am nervous, and also today I am having a root canal, so the title of this post is marvelously apropos.

This is a big pile of whine.

I hate having people in my house, and I hate paperwork, and I really hate root canals, I think -- except I've never had one. 

So . . .

So we still have no genetics results, and it's still bumming me out, and I'm still wading through this paperwork which if I was being totally honest with myself (and if I wasn't kind of reeling from the seizures of the last 4-5 days) should have been done already but I'm having a hard time focusing.  Also, I do not want to have to call the geneticist (she told us to call if we hadn't heard by the end of March, and my agoraphobia is kind of ramping up a lot lately, so I'm loathe to make phone calls or make unnecessary trips.)

Really, this post is just to say that I hate everything.  Except Lucy, Travis, and you. 

MINUTES LIKE HOURS YOU GUYS!!!!!

I'm going nuts.

Seriously.

I wait every day for the freakin'mail-woman, and then she has the nerve to only bring me a catalog and a pizza flyer!!!!!

BRING ME MY TEST RESULTS DAGGONE IT!!!

In the meantime, I am working my way through the EDCD Waiver.  And the Medicaid application.  The application is 18 pages long. 

My college applications weren't that long. 

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.