The Art of Humility

So, I was talking about humility the other day.  And it is an art and a promise and truly difficult and truly humbling.  I've had many experiences that have brought me to a level of humility that I now have, and I suspect that I will still have to hand over more of my pride and even more of my pride before I am done with my walk here on the bluish-greenish-brownish-smoggy ball. 

You see, being Lucy's mom has been extremely humbling.  In fact, I couldn't actually put words to it until now, not until someone else was kind enough to prime the pump for me.  This blog post by Dr. Karin really made me feel like she knew exactly how I had felt, and still often feel, about what it's like to be Lucy's mom.  Especially this passage:

I never knew fear until I put my child’s life in someone else’s hands, out of my sight, out of my control, and beyond the swinging doors of a room filled with masked healers with gloved hands.
I never knew faith until all I could hold onto were the reassurances of the nurse who took him away in her arms, the spoken confidence of the surgeon who promised he knew what he was doing, the words in the Bible that I had memorized in my youth … and the prayers of so many people, some family, some I did not even know, who loved my baby boy and wanted him healed.
I never knew the love of God until I realized that He was okay with the fact that I was angry, exhausted, confused, and petrified and unable to pray for a time when my newborn was first taken from me, but He waited right there by Hoyte’s bedside with me anyway, loving me all the way and waiting for me to come back.
I never knew gratitude until I saw the surgeon walk through the swinging door of the hospital waiting room, removing his mask to reveal a reassuring smile.
I never knew joy until I watched my child recover body and soul from infections, procedures and surgeries and then one day finally saw his smile again … even brighter than before.
I never knew closeness until I realized that God indeed had been tucked up beside each of us every single hour. And when I regained my strength and was able to reach back up to Him with a renewed spirit, His voice sounded closer than before, and the warmth of his compassion flooded my heart with indescribable blessing.
I never knew anything more certain than what I know today for sure: Our little Hoyte is a miracle, and he is HERE FOR A REASON.
And so is your child.

You see, when Lucy was first hospitalized, I had to actually give up being her mother.  I couldn't hold her or comfort her or even feed her anymore.  I pumped loads of milk that we poured down the sink.  I literally could do nothing for my infant daughter.  I couldn't save her.  I couldn't help her.  I had to hand her off to strangers, and hope for the best.  And I told people I prayed -- I tell people I prayed, and I think on some level I did.  But the inside of me looked like this:

I had to lean on the assurances and the help of strangers.  I had arrived at the hospital with the clothing on my back, with my purse, and with nothing else.  The nurses brought me food, found me soap and contact solution and a cell phone charger.

For the first time, I learned what it meant to put aside my pride and allow people to really help me.  But my lessons weren't over. 

When I returned to work, and the syndrome grew worse, I learned what it meant to have a good boss who was really there for me to help me.

I learned how to lean on friends, and talk to them, and tell them when I was sad or scared.  I learned what I really needed and what I wanted.  And through it all, the people have come back with love and support beyond what I have imagined.  My old pride has taken a beating -- because as I realized that first time, I am not enough. 

I have to accept more for Lucy.  She needs more.  She has assistance from the state.  She has a team of therapists and nurses and doctors.  I've slept in a Ronald McDonald House, and when I could, I gave back.  I've eaten the food given to me by complete strangers, and brought food back.  When se almost died last Christmas, the outpouring of support and love buoyed us up.  And so we work very hard to be anchors and pillars for those we see who are sad. 

Charity is not the strong helping the weak -- it is a symbol of infinity, in which we see how God's love shows for all of us.  The more humble I am, the more I can love the greater mass of humanity, because it allows me to see better how to love and to accept more love so as to give it.  Infinitely, infinitely, infinitely. 

Infinity.

Back so soon?

Ahhh.  Here we are back in the hospital.  It's weird to not enter through the Emergency Department.  To drive here in our own car.  To have to wrestle a toddler down for an EEG who's wide awake and not totally doped on diazepam.

Okay, I've done the last one a few times.  But still, not for a while.

Anyway, we're in for a visit to the Epilepsy Monitoring Unit.  Apparently, this is a level 4 EMU, which is probably pretty good, except that I didn't know there were levels and, well, let's just say that this is far superior to the last few stays we've had at EMUs.  See, once they hook you up to the wires, they hand you a button (or, in this case, hand your mom a button) and tell you to push it if something happens. 

Lucy got ahold of the button and pushed it. 

At the Shitty Hospital, where we've always done our EEGs up until now, that was it.  You push the button, there's a mark on the monitor, and the doctor looks at that point and says "seizure or no seizure."

At THIS hospital, when you push the button, an alarm goes off at the nurse's station, the lights in your room come on, the TV goes off, and an EEG tech and two nurses run into your room.  IMMEDIATELY.

To say that Lucy and I were not expecting this is an understatement.  We were preparing to EVACUATE.

This makes me teary every time.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Let's have some good news.

1.  Lucy counts to six.  With some help.

2.  We get a nurse.  A real one.  Not that we don't love our Carrie. 

3.  Lucy's posturing is better.  (Bad news -- it is better since they raised her zonegran, so that might mean it's seizures, BUT this is good news day.)

4.  Lucy can feed herself some yogurt.

5.  Last night she ate four grilled nuggets.

6.  She can put legos together and take them apart.

7.  She says "itsy-bitsy spider."  Okay, she says "itteh-betteh pideh."  But she says it when she pulls out the book.

8.  I think her feet are growing.

9.  She says she loves us a lot.

10.  She kisses fish.  Okay, she blows kisses at fish.  It's adorable. 

I want a Dravet buddy.

I don't want you guys to think I don't love you and appreciate you, because I really, really do.  You give me perspective and support and make me laugh and bounce me back and are so awesome beyond anything. 

Really.

But sometimes, I also want somebody who is in the trenches with me.  Who, if I say, "I think they're gonna put her on the DIET," doesn't need an explanation about the G-D EFFING DIET (the vitriol is not directed at you, it is directed at the diet.  The diet is the biggest pain in the ass.  Let me explain a few things about why:  1.  No sugar;  2.  You have to eat a specific amount of calories, no more and NO LESS, so a lot of kids end up with a supplemental feeding tube in case they don't eat all of their meals; and 3. If you cheat, you will have a seizure, so if my kid's crazy-ass grandparents slip her candy, she'll seize. GIANT PAIN IN THE ASS.)

Sometimes it feels a little lonely out here.  I keep trying to make a Dravet buddy, but the network feels a little like a closed club.  Especially since Lucy is, overall, doing pretty well compared to the other kids. 

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. 

Motherfucker.

That is all. 

Results. Finally.

Lucy's mutation is a de novo mutation.  Unfortunately, this may mean that her Dravet Spectrum disorder may be worse -- but on the bright side, we do know that other people in the family that plan on spawning have little to worry about.

Seriously?

Seriously.

SERIOUSLY?

You have to be kidding me. 

No results. 

At my house, we call this a "subtle hint."

Think he'll get it?

WEIGHT GAIN, Y'ALL!

Lucy gained 1.4 pounds.

In three weeks.

I KNOW.

We'd like to thank the Academy, Larabars, whole milk, and an increase in her activity level which is in turn leading to an increase in her appetite.  Not only does she eat three meals a day, but she also eats a snack.

Conspiracy theorists and nutjobs

Well, I have news, but it is not news.

I sent an email to the genetics counselor, and she let me know that the tests are done, and the report is being finalized, and they will be sending the results along next week. 

So . . . to me it sounds like she knows something, and isn't telling.  Or am I now the conspiracy theorist?

And, my husband's family came to visit last week.  They were on the road longer than they actually visited.  I will explain:

They are in ill health.  Very.  My sister-in-law doesn't walk (and yes, that is the correct word) and my mother-in-law has a lot of problems walking, and my father-in-law has mental health issues and no teeth and is in failing health.  None of them can drive long distances, and we live 7.5 hours away. 

In their town, there is a small town hospital.  And 45 minutes away, there is a Baptist hospital, which is actually the first hospital we ever took Lucy to when she was seizing.  The doctor there didn't even bother to examine her -- he listened to us and told us to put her in the car and take her 90 minutes by car to the University hospital, because there was nothing he or anything closer could do.  And the ambulance was out on a call and would be too long to get us there.  So we won't go to them, because we can't get Lucy to adequate medical care in adequate time.  (To add it all together, Lucy is 2:15 from a decent hospital at their house.)

We offered to meet them halfway at a town with a decent emergency room. 

And then, they said they wanted to come to us Easter weekend.  Friday night to Sunday midday.  So we said, "okay."  And then they said they got rooms at a local motel which I won't name but rest assured I tried to tell my husband to get them to go elsewhere. 

They would not.  It is a sad, sad, place.  Okay, it's a shithole. 

So they arrive on Friday.  (They make my 22-year-old nephew drive them.  Poor guy.)  We meet them at Cracker Barrel.  We eat.  They want us to come to their room.  We discover that the manager has offered them a hell of a deal:  You four pack yourself into one room with two double beds and it'll be the one room charge plus $10.  They can't pass it up.

We convince them to come to our house, because Lucy will be much more comfortable.  My SIL still says she cannot walk at all and therefore cannot navigate the stairs to the living room so she drives her Jazzy to the playroom.  We all sit in Lucy's playroom.  It's so fun.

The next morning, we have planned to go to the park so Lucy can enjoy the ducks, the Easter Bunny, have her face painted, and look at the kids. 

Travis gets a text Saturday morning that they want to leave asap.  The room is uncomfortable.  Nobody slept. 

So we go to the park (it's packed, natch) and they won't get out.  I tell Travis that we'll try it next year, because I don't want to be rude to our guests but jeeeeez.  So we come back to the house and we all sit in Lucy's playroom again.  It's so fun.  (This time, however, my sister-in-law WALKS into the house.  It's an Easter miracle.) 

Because it's also my mother-in-law's birthday, we do lunch.  We can't go out, obviously, because they won't go anywhere, so we have to bring lunch to them.  As options are now limited, we are left with Pizza Hut and Papa Johns.  We ask if anyone has a preference and they all say they don't care.  I opt for Pizza Hut because Lucy does have a preference. 

The pizza shows up and my nephew begins mentioning how much better Papa Johns is.  Lunch is just uncomfortable for everyone.  Travis and I surprised my mother-in-law with a cake.  My sister-in-law, the best and most awesome peach that ever lived, posted a picture to her FB page as though she bought the cake herself. 

And then they left.  Fortunately, Lucy is not yet old enough to understand, I hope, that they did something hurtful.  But I am going to have to be a little more diligent about protecting her from this in the future.

And there you have your nutjobs.  Also your assholes. 

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. 

It's not 5:00 here,

but if you're judging me and my glass of Pinot Evil, then you and I are not friends.

Lulu screamed for three hours before she finally fell asleep three minutes ago. 

And my in-laws are coming this weekend.  They don't understand toddlers, but they want to visit with Lucy. 

On an average day, Lucy falls asleep for afternoon nap somewhere between 1 and 3.  Today at 1, she was yawning and rubbing her eyes, so I put her down.  She screamed for 3 SOLID FREAKING HOURS.  My ears are still ringing. 

We had told the in-laws that she normally can't last much beyond 5:30 for her dinner (and normally she can't) but as she just now made it to sleep at 4pm, I doubt she'll wake before 5:15. 

AND they're here. 

Well, not HERE.  They're at their hotel.  And I am negotiating with Travis about whether to wake her at 5 or let her sleep a little and tell the people who don't speak toddler why the schedule has suddenly changed. 

Also, no results.  I am quite disappointed. 

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. 

A purple rumination.

Yesterday was Purple Day, and I was overwhelmed by the love.  Before I get into the negativity, and while I'm on the love, I can tell there are some new readers (because I'm obsessive and check my stats a lot) and you should know you're welcome. You should also know that you're welcome to comment. A lot of my friends have been making it a habit to email their comments to me, probably because of that post about not telling anyone on Facebook yet. But as you'll see, I should be out pretty soon -- people at work already know about Lucy's diagnosis, for the most part. Anyway, when I revamped this blog and decided that I'd start writing about Dravet, I opened up the comment section so that pretty much anyone could comment on the blog. I felt (and still kind of feel) alone out here, and if that's you too, come on and have a virtual cup of coffee.  Comments are always welcome and appreciated.  Unless, of course, all you want to do is swear at me. 

Of course, there was a lot of love, anyway.  The Supreme Court is finally hearing the marriage equality cases, and so there was love, love, love all over facebook.  It was red and purple everywhere I looked. 

Unfortunately, I kept having a bad feeling about March 26.  I had decided to make it a day of celebration, simply because I decided that bad feelings, unless you are my psychic sister, are hooey.

So I started my Facebook Advocacy posts (those were fun) and got our purple outfits, and a cake, and Travis and I had a special lunch and talked about how our special kid made us a special family -- stronger, wiser, and tougher. 

We did not, however, mention that it also made us more anxiety-driven and obssessive-compulsive.  But you only have to look at my "Doomsday Preppers" posts to know that. 

Anyway, the bad feeling didn't go away.  I fully expected to finally get our remaining genetics tests and finally come "out" on Facebook.  As it is bad either way, I felt like it would explain my feeling (de novo mutation = worse for Lucy; inherited mutation = better for Lucy, one of us has some guilt.)  However, they didn't come. 

But then, last night, we were all in her room.  Travis and I were both cuddled on the big beanbag, and we were reading to Lucy.  She was sitting on the floor, looking at us, and then she did it -- the same kind of posturing we saw this time last year.  It is what we read about here (scroll down to myoclonic seizures) and it is hella scary for us because we actually cannot say it was anything else.  We were both looking at her straight on.  She wasn't doing anything else, and it just pulled her into a totally unnatural position and squished her little face all up. 

It pisses me off to no end, because the doctors at the Hospital We Try Not To Go To But Sometimes End Up At In An Emergency Because It's Closer discounted these a year ago and then told me she didn't have epilepsy and tried to start weaning her off all of her antiepileptic drugs and then caused a REALLY BIG SCARY SEIZURE because she was, obviously, on far too low a dose of her AED.  It's really hard to get these on video because they happen so super-fast.  If you blink, they're over. 

This, of course, is coming on top of the super-scary events of Monday:  I had to go to a doctor's appointment at 4:00.  Travis had to work until 4:30 (he works at home, so he is literally right down a flight of stairs).  I wiggled Lucy's naps back and got her to sleep at 3:30, so I knew she'd be asleep until at least 4:30.  I'm a hero. 

I take Travis the baby monitor.  I go to the doctor. 

I return from the doctor at 5.  Lucy is still asleep.  She wakes up as Travis and I come up the stairs.  We hear one cry, and then it appears she goes back to sleep. 

When we go to get her from the crib (bedtime is between 7 and 8, so we don't need her to sleep too much past 5) she is markedly postictal.  Speech is slurred.  Eyes at half-mast.  She's in a fetal position, and doesn't want to come out of it.  Is disoriented.  Can't sit up.  Her feet and hands are purplish. 

We missed an EFFING SEIZURE. 

Emergency Preparedness, Part 1: Documentation

There are certain things you really need to have with you at all times in an emergency situation.  Among them, a list of medications, the names and phone numbers of your doctors, and your medical insurance information. 

If you are anything like me, you do not have this stuff memorized.

Therefore, I recommend that you prepare it ahead of time and stash copies in 2 places: 
1.  Your purse or wallet or diaper bag, and
2.  Your emergency room bag.  (We'll discuss this bag soon, I promise.  Not that we need to.  You probably already have one.)

But Melly, you are thinking, only TWO?  That's CRAZY.  I need at least 50, so I can stash one in each car and one in the kitchen and one in every single pair of shoes and . . . .

No. 

You need two.  Think logically with me.  You are going to update this document every time you see a doctor.  Every.  Single.  Time.  That means you are going to have to track down every copy and replace it.  And God forbid you end up in an emergency with an old one. 

You need two.  Because you will always either have your purse wallet or diaper bag OR the ER bag.  Trust me. 

But before we get to this, let's talk about your insurance cards. 

I recommend you do this, because it has been the biggest help in the world:  get thee to a scanner and scan that thing, front and back, and save it to your computer.  Now you can print a copy every time you need to go to a doctor.  I've been able to email it.  It's super-handy.  Then, make yourself a copy for the emergency room bag, just in case.  You don't want to end up in the hospital without your insurance information.  I always print our names and "please return" on the copy in red pen, because a lot of times we emd up at a different hospital from the one where we begin. 

Next, your emergency medical information: 
This is a personal document, so I'm going to talk about what needs to be on it, and then give you some pointers about what we put on Lucy's, though I'm not going to post the actual document.  Essentially, this needs to be quick and dirty. 

I keep this to one page, printed on the front.  I think it only needs to be information that is absolutely necessary in an emergency situation, and I try to imagine a situation in which I don't get to answer any questions and can only pin this page to Lucy before the doctors take her away.  What must they know so they can treat her properly?  Keep in mind, they'll only have time to skim, so your information needs to be bullets, and user-friendly to the doctors.  Try to pay attention (it's hard, I know) to the questions that the doctors ask most often so you can anticipate the information they need and in what order.

So what, specifically is on our document?  The following, in order -- although it is formatted out much like a resume. 
* Title (Emergency Medical Information)
*The date the document was last updated.
* Lucy's full name
* Lucy's date of birth.
* One sentence identifying Lucy's diagnosis. 
* One sentence identifying her unusual drug reaction to a common emergency anti-epileptic.
* Her neurologist's advice for doctors unsure about how to handle status epilepticus. 
* Her weight at last checkup.  I give this in pounds and also convert it to kilograms, and I recommend you do the same -- don't make the doctors and nurses waste time finding a calculator and doing a conversion. 
* Her list of current medications in the following format:
BRAND NAME(generic name) 00mg/mL sol 0x daily
* Information about her immunizations.  In Lucy's case, it's one sentence indicating that her immunizations are up to date. 
* Names and contact information for her pediatrician and neurologist.
* Our names, address, and contact information. 
* Brief information about Dravet Syndrome disorders, as most doctors in Emergency Departments haven't encountered them.  I yanked this mostly from dravet.org, and added a Lucy-specific sentence:

Quick info about Dravet: 
Dravet Spectrum Disorders describe a group of related epilepsies having a similar genetic cause, most commonly mutations in the SCN1A gene which encodes a sodium ion channel, NaV1.1, found in the brain. The Dravet Spectrum Disorders include the following syndromes, listed from least severe to most severe:  Familial Febrile Seizures (FS); Generalized Epilepsy with Febrile Seizures Plus (GEFS+) Intractable Childhood Epilepsy with Generalized Tonic Clonic Seizures (ICE-GTC); Severe Infantile Multifocal Epilepsy (SIMFE); Severe Myoclonic Epilepsy Borderline (SMEB); Severe Myoclonic Epilepsy of Infancy (SMEI); also called Dravet Syndrome.  These syndromes encompass not only epilepsy, but also often intellectual and developmental delays along with comorbid conditions.  Lucy’s doctors have not given a definitive diagnosis as to her specific syndrome yet – they are waiting to see how she develops.  If you need more information, please go to dravet.org.

Okay.  You've probably now figured out why you'll be updating this so often.  Every time there's a meds change, or your kid gains an ounce, this document gets trashed. 

So I keep one in a folder in Lucy's diaper bag with a pen, so I can mark changes to make when I get home (it's with me in a doctor's office, natch.) and 6-8 copies in a folder in the emergency bag, along with a copy of our insurance card. 

Why so many? 

A lot of times, we get about 4 doctors and nurses asking questions and shouting instructions to the point person, or doctor who is actually working on Lucy.  These people keep walking in and out of the room, and I've observed that the best way to handle things is to pass these documents out like I'm wearing a hot dog costume. 

Anyways, I hope this helps.  Good luck with preparing for your own emergency.  I'm so sorry you had to do this. 

Just a quickie, to cheer you up after yesterday.

Lucy climbed the stairs today.

YOU GUYS.  SHE CLIMBED THE STAIRS TODAY.

I mean, I had to sit behind her and hold her butt and also throw her blankie up three stairs at a time but she did it.  And you know what the best part is?

She decided to do it. 

My kid is awesome. 

Ugh, that look.

I know a lot of moms get it.  Probably every mother of a child with special needs.  Especially the moms of kids who have special needs that aren't immediately obvious.  I mean, look, if Lucy had to carry around an oxygen tank people would know how to arrange their faces, but she looks completely normal except for one teeny-tiny thing.

She's teeny-tiny. 

And I mean really teeny-tiny.  She is 18 months old and mostly wears 12-month-old clothes.  She can shock a granny in the grocery store with how well she talks -- because nobody expects a 1-year-old to say "turtle" and "Charlie" and "biscuit."  Well-meaning assistants in our favorite toy store suggest toys she's waaay to advanced for.  And when, inevitably, a stranger comes up to me and says, "Oh, she's adorable! How old is she?" I have to admit, I do sometimes think about lying.

But I don't.  I tell the truth.  I tell them that she is 18 months old.  And then I get that look. 

They nearly always look shocked.  And then they try to cover it up.  Some of them start talking about something else. 

Some of them tell me that it's okay, that they knew a kid who suddenly GREW.  Like I asked, or intimated that I was worried.  Asshats. 

Some of them just find a way to walk away.  And tsk as soon as they think I'm out of earshot.  I HEAR YOU OLD LADIES!!!!

I figured out today that I'm carrying around a lot of anger and resentment because of all of this judgment.  I mean, I thought I had been shrugging it all off, because I can't expect everybody to just KNOW.  And it really takes 3-4 sentences to get to it:  "Lucy has intractible epilepsy.  It doesn't respond to most medications, so she has to take a medication that has an unfortunate side effect -- anorexia.  No, there really isn't anything else.  Yes, we are monitoring her weight and growth with a doctor."

But today broke me down.  We took Lucy in for her 18-month checkup.  As she is now too long for her 12-month pants, I diaper-pinned 18-month pants to her. 

The nurse came in and introduced herself and said, "So we're seeing Miss Lucy for her 15-month checkup, right?"

And I said, "No, 18 month."

And she looked at Lucy.  And then SHE GAVE ME THAT LOOK.

I know she didn't mean to.  She recovered fast.  I held it together until she left. 

But I was pretty upset, and it is awful to have this kind of judgment rain down on me.  As though I'm in some way trying to hurt my kid.  As though I did something to hurt her on purpose, or by neglecting her, or simply because I'm not smart enough to know. 

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. 

Just one more month?

So, we got swabbed yesterday. 

And apparently, because they're only checking for the exact mutation that Lulu has, we'll have results in a month.  Wow. 

And, of course, like all other people who like to pretend to know what it's like to live my life without never actually lived it, the genetic counselor actually told us to make an emergency plan.

LIKE I DON'T HAVE ONE.  PLEASE. 

Also, as I do EVERY MOTHERLOVING TIME a person in a lab coat (or, in this case, in close proximity to a person in a lab coat) I pointed out that I can't tell an emergency room doctor what to do. 

Or, rather, that I can try, but they will never, ever, ever, ever (you picking this up, Taylor Swift?) listen to me.

So, they promised to write a letter that I can carry with me that explains what drugs not to use on Lulu.  It's better, but I'm not convinced that this is awesome because it's an EMERGENCY.  Who has time to read a letter? 

So, anyway, that has inspired me to start a series on this blog called "emergency preparedness" for the parents of twitchy kids. 

Yes, I know the four of you who read this blog don't have twitchy kids.  But one day, I hope that some mom who is just at her wit's end will stumble across me and find a little sanity and humor in the great land of epilepsy management. 

Also, some possible bad news/good news/good news?  I think Lucy had a seizure today.

That's the bad news.  The good news?  That I'm not sure.  See, normally, Lucy's seizures are like being in labor (if you think you're in labor, you are not in labor.  You will KNOW when you are in labor.  So will everybody in a -mile radius.  But I digress.)  But today, she stilled (tonic) and then her left leg began a rhythmic movement, just for about 7 seconds (partial focal seizure?)  and then (good news again) IT STOPPED ON ITS OWN.  Which is awesome.  Lucy's seizures, like, never do that. 

Mom In Motion Study

So, people have been asking me how *I* have been doing.  And I'm fine, really, but I tell them I'm a little bored because I suspect that's what they want to hear.

Mostly I'm not terribly bored.  I mean, this isn't as intellectually stimulating as trying to get 26 adults to identify a thesis statement when they have no idea either what a thesis statement is or what it does despite their insistence that they have advanced high school diplomas, but I'm not horribly bored.  I've been able to write more, which is kind of awesome, and I'm getting a lot of good stuff done for Lulu, which is super-awesome.

Also, I've been able to clean out three closets. 

But since people wonder what I *do* all day, I thought I'd write it down.  Apparently, they think I simply wipe bottom, drool, and then sing ABCs.  It's close, but not quite. 

And so, I present to you, with only a little more ado, a Mom in Motion Study. 

To get you in the mood, you probably need to listen to this:



My day begins between 5 and 5:30am.  I wake up after some crazy-ass dream (last night, I dreamed we were living in a townhouse with a teeny-tiny yard, and we bought a horse) and check for breathing. 
   Me:  Check
   T:  Check.
   Lulu . . . . . . . . . come on kid, give me something . . . . . . . . . .  . . . . .Lulu? . . . . . Ok, Check.

Then I carefully get out of bed and head for the bathroom in the hall.  Then coffee.  And then?

IT'S MOMMY'S FREE TIME EVERYBODY'S ASLEEP HOORAY!!!!!!!!!!!!!!

 

Some mornings (in fact, many mornings) MFTEAH doesn't happen.  Some mornings Lulu wakes up before I can even get out of bed, so we go right to:

 

EVERYBODY IN THE BIG BED SNUGGLE TIME AWESOME HAPPY.

 

This will last until I get kicked in the face, or someone looks at the clock and realizes that if both adults wish to be washed and dressed this morning that we need to get up, or my bladder is about to give out. 

 

Then we get up and I get Lucy her morning beverage and pull her hair into her ponytail in case she decides to fight the medicine and we commence the medicine taking.  Daddy is normally in charge of this, because she fights him less, and I am not going to take away a job he is clearly better at than me. 

 

And then I bathe and dress and dry my hair and then we switch and I try to entertain a toddler while making the beds and dressing her.  Then we attempt breakfast, though we're rarely successful, especially after we've just shoved 3 teaspoons of anti-epileptics into her.  And then Daddy goes to work, and we cry, and then it's time to try to watch the weather forecast and get a nebulizer treatment. 

 

You should probably picture an adult woman trying to herd kittens into a sack with one hand.  It's a little like that. 

 

And then we commence to working on our homework.  Lulu needs to learn to:

   1.  Stack

   2.  Scribble

   3.  Walk up the stairs

 

These are hard things.  The stacking is coming along nicely -- we're up to three blocks.  We like to make some dots on the paper and then try to gnaw on our crayon and we ARE SO MAD when Mommy takes them away. 

 

The stairs are HARD, you guys.  There is this shit called gravity and it is a bitch.  Lucy can make it up a step, but a lot of times she can then fall off of said step.  She never gets hurt (it's really just surprise) but she gets really scared.  However, it's good for her, because she needs to understand that there's a certain amount of danger and risk in going up the stairs.  I just hope I'm not creating too fearful a kid. 

 

Anyway, then it's 9:00 and it is naptime.  So we lay down and I get the computer and I check my work email and my regular email and then I get to write. 

 

Dudes, I have been so prolific in the past two months.  I write a humor column for an online magazine, and I wrote two in addition to all of my blogging.  And I started a book, but then again who isn't writing a book?  But anyway, I get some stuff DONE. And I also do the laundry and prep dinner and race around doing, well, stuff during naptime. 

 

Then she wakes up.  Back to homework. 

 

11:30am.  Lunch!  Throw raisins on the floor!  Throw cheese on the floor!  Throw crackers on the floor!  Eat some carrots! 

 

12noon:  While Mommy is cleaning up, eat raisins, cheese, and crackers off the floor.

 

12:05:  Daddy give Lucy her afternoon meds.  Tears. 

 

12:15.  Sesame Street is brought to you by the Letter C, the number 8, and some the highest people EVER.  I'm waiting for a segment called "Puff, Puff, Pass."

 

1:15:  Naptime.  Back to writing, emailing, blogging, hemming pants, cleaning out a closet, etc. 

 

2:00:  Tell Lucy that she has not had enough nap.  Nice try.

 

3:30:  Shit.  Is she ever going to wake up?

 

3:45:  Hi, Baby!  Let's play!

 

4:30:  Daddy comes home!  Time to make dinner.

 

5:00:  Dinner!  Throw raisins on the floor!  Throw crackers on the floor!  Eat some beans!  Chew up a roll and spit it in Mommy's hand! 

 

5:30:  Fussy time.  Tired again.  Daddy reads books.  Mommy tries to figure out what to defrost for tomorrow's dinner. 

 

6:00pm:  All the books go ON THE FLOOR. 

6:10:  Lucy wants to read Humpty Dumpty.  WHERE IS HUMPTY DUMPTY?

6:12:  Lucy is sitting on Humpty Dumpty.  I attempt to explain how she can't read the book that is under her bottom.  Fail.  Tears.  I pull her into my lap for soothing and rescue the damn book. 

6:20:  We read Humpty Dumpty.

6:21:  And again.

6:22:  And again.

6:23:  And again.

6:24:  And again.

6:25:  I put Humpty down and tell Lucy to find another book.  She chooses Little Pookie.

6:26: We read Little Pookie.

6:27: And again.

6:28: And again.

6:29: And again.

6:30: And again.

We repeat with other books until 7:00.  Then we take meds and a bath and go snuggle in front of Jeopardy with some milk. 

8:00pm:  Brush teeth, bedtime.  Also baby's bedtime.  Yaaaaaawn. 

8:30:  TV.  I normally watch about half of a show and then fall asleep, which leads to some wonky dreams. . . . .

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. 

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.