We saw Dr. P today. He rushed us in after we called to report on Lulu.

I'll back up. 

Lulu has been doing that weird posturing stuff for over a year, and nobody knows what it is. 

For three weeks, she's been having episodes of muscle weakness.  And we can't get her to respond well -- she's dazed and grunty and kind of unresponsive. 

Sometimes, immediately following these episodes, she postures for a while.  And wanders around.  He says they might be complex partial seizures.

Awesomepants.

-----
But, in other awesomepants news, Lulu is interested in the potty.  I'm not holding out any timeline here, because with all her stuff I wasn't actually expecting her to use the toilet with any regularity before the age of four (hypotonia affects all the muscles, including bowel and bladder).  But she is now the proud owner of a froggy potty.  Just in case, you know. 

Why Howdy Neighbor.

Dravet Syndrome is going to make me lose my shit.

So, today has not been a good day.  We lost one of our kids today. 

And no, I have no hold on this child.  I don't know the parents or the kid.  But yes, it hurts me like a part of me is cut off because every day we all fight to not lose one of our own.  So she was one of mine. 

And THEN my neighbors threw a party and one of their guest parked in front of my driveway.  I swear, if Lulu had had a seizure I would have just rammed that damn Kia.  As it was, Travis had to just about restrain me from leaving a note with some thinly veiled sarcasm.

Mean Red Days

A little girl died from Dravet last night.  She wasn't yet four.

I still think it's intolerable that any kid dies from any condition.  But it's slightly more intolerable that any kid dies from my kid's condition. 

I've spent much of the day leaking from my tear ducts. 

Oh, AND

22 pounds.

She officially can no longer use the newborn carrier. 

:sniff:

And also YAY!!!!!!!!!!!

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. 

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.