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.
Friday, March 29, 2013
Thursday, March 28, 2013
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.
Really, this post is just to say that I hate everything. Except Lucy, Travis, and you.
Wednesday, March 27, 2013
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.
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.
Wednesday, March 20, 2013
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:
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.
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.
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.
Tuesday, March 19, 2013
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.
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.
Monday, March 18, 2013
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.
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.
Thursday, March 14, 2013
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.
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.
Subscribe to:
Posts (Atom)
