One of the things I am terrible at, besides, of course, flagrant overuse of commas, jumping in and out of tenses like it was my job (ed note: it is not my job), Misusing Capitol Letters, and generally making people uncomfortable with the assumed familiarity that a nickname like “Aunt Becky” brings, is updating my loyal Internet Army about things I’d previously whined about.

It’s not that I don’t HAVE updates or think to tell you of them, it’s just that without collecting several things to update you about at once, the post becomes even more boring than normal. If my blog reads “and then (dot, dot, dot) and then (dot, dot, dot)” even I become irritated.

—————–

The Internet was both shocked and appalled that someone who has Crohn’s disease (or maybe NOT Crohn’s disease) would try a weight loss drug like Alli. And I was shocked and appalled that after cutting out butter as a food group, the scale zoomed up 12 pounds. Seemed mighty suspicious.

(my scale is broken)

But, because I’d tried Weight Watchers and found it to be too much work for someone barely sleeping and barely able to cook–thanks to a certain squally infant (read: The Daver)–I decided to go with Alli. Against the better judgement of many of my closest friends in the computer. Alli trumped a tapeworm (and since regular diet and exercise wasn’t cutting it), so I took my first pill with great trepidation.

I sat there at my computer for the first couple of hours, waiting for the butt-butter to liberally pour out of me. My diet wasn’t terrible to begin with–shockingly, I look as though I polish of boxes of Little Debbie every night–but everywhere I went I was told to not wear white pants (Thankfully for eyeballs everywhere, I do not own white pants), wear a panty-liner and to watch out for flatulence with particulate matter.

Terribly anticlimactic for me when absolutely nothing at all happened.

Save for this: I awoke the following morning–mornings are notoriously bad for my guts around these here parts–and waited for the spew, the pain and the cramping (this happens without Alli). It was only when I felt absolutely no pain whatsoever that I realized that I really HAD been in constant serious pain before this.

Day after day, I hesitantly popped the blue pill–waiting for the inevitable agony–and noticed that for the first time in many years, my guts felt oddly normal. Not like they were trying to eject themselves from my body cavity through my belly-button or like they were imploding. I’d never found anything–even Demerol–that controlled the pain I was in, I just sucked it up and dealt with it. Because what else CAN you do? Chronic pain is chronic pain and you get used to it.

So the drug that was supposed to induce terrible cramping, diarrhea and seepage made me…better. I swear on a stack of Bibles that I have never been more baffled.

I will admit before you, o! Internet, that I have indulged in some fattier meals and paid the price. The price was shockingly low, truth be told, and I’m not sure if it’s my particular GI anatomy or that I’m used to this pain, but I did pay. The oil, if you read in the wise comments I got on those posts, I should tell you, comes out of your body looking just like…oil. Neither here nor there, honestly, but sort of amusing.

I haven’t shat myself, ruined any pants (white or otherwise), and I’m not exactly sure if I’m seeing results. Like I said, my scale is broken, and I stupidly stepped on it a week or so ago while very bloated and noticed I’d gained a pound and a half. I moped about for awhile afterward and vowed to get the hell off the scale. It does me no good.

So there you have it. I am pretty pleased with it but cannot honestly tell you if I have seen results. I have no desire to be a slave to my scale, and I know soon enough my body will realize that it doesn’t desperately need my fat stores to feed a baby or nourish a fetus. Time will tell.

——————–

Earlier this week, my agents schlepped off my book proposal to the first round of publishers in the first of many months of “hurry up -n- wait.” The beauty of agents is this: not only do they know what to do, you aren’t rejected YOURSELF. I am not subjected to the “You suck ass” rejection emails, and the few rejections I have been sent (by my agents) have been ridiculously flattering.

I realize I sound not terribly excited and I know that’s weird, but like I said, I won’t hear anything for MONTHS. I’d much rather be excited about my new site design or this fantastic bottle of blueberry flavored vodka Daver bought me.

Another one of those “time will tell,” “laughter heals all wounds” stupid platitudely bullshitty statements that serve to annoy most people.

Like me.

—————-

Thanks to your votes, I made it into the top 5 Funniest Blogs, a title I know full well that I do not deserve. But I’m ridiculously flattered that I made it there and from here on out, the top 2 will be determined by a stealthy secret panel of judges. Actually, they’re not stealthy at all, they’re listed on the site somewhere, but I don’t read fine print and besides, what does it matter who these people are?

Cake Wrecks will somehow no doubt win both spots.

(I am super pumped to go through those posts and remove my pleas to you to vote for me. Because I felt like a total assbag begging you. Shit, I *still* feel like an assbag)

———————-

Amelia is still working on rolling over which means one of two things:

1) She gets flipped onto her belly and becomes furious and indignant about it

B) She isn’t sleeping because all she wants to do is “roll, roll, roll.” Indignantly. She is obviously my child.

Her scar, rather than shrink like everyone seemed to think it would–which, in hindsight, makes very little sense to me–is expanding rapidly towards her forehead. I am no longer sure the hair in the back will easily cover it, but this is okay. Hats, oh hats, they will become our friend.

Although my brother seems to think that a scorpion tattoo would be even cooler.

The stretching of said scar has shown that I was correct: there is another fucking stitch back there to be removed. Awesome. Even creepier is that you can now see her skull implants. Which, yeah.

Anyway, before someone pipes up with, “AT LEAST SHE HAS FEET! HOW DARE YOU COMPLAIN WHEN THERE ARE PEOPLE WITHOUT FEET!!!” I’ll end this post with an adorable baby picture.

Maybe green and sparkly won’t be her first choice in headgear. Can’t win them all.

So here’s the button should you want to vote for me. Should you NOT want to vote, I dig that too. It’s a simple process, hand to God.

I am also up for the other two Bloggers Choice Awards displayed so kindly on my sidebar, and should you want to go through the annoying registration, I would be most thrilled. If only so that I could beat Dooce, who wins everything.

I also wanted to let you know that–should you want to be bored stiff–I am on Facebook as I am a lemming. A stupid, stupid lemming. My full name is at the bottom of your screen. We should SO be BFF.

I am also on Flickr AND Twitter. Because of the aforementioned lemmingness.

————-

Okay, so that top shit was written this morning when I was anxiously awaiting the Early Intervention people.

Dave and I handle adverse situations differently. While I am busy wringing my hands and preparing myself for the worst possible outcome, he calmly expects the best of any given situation. I’m not exactly Chicken Little, instead I’m his cousin, Aunt Chicken The-Sky-Might-Fall-Soon-Better-Prepare-Now and while I do appreciate Daver’s rose colored glasses, honestly my way has proved to be more useful for me.

Neither way is either wrong or right.

Amelia had her meeting with the therapists this afternoon, and all week I’ve had a sort of heavy-rock-in-my-guts type feeling. Not because, you see, I was terribly concerned about what they would find–shocking, I know–but because, I guess, I didn’t know what was going to happen. Which to me is worse than the bad outcomes. Dave, on the other hand, was optimistic and unconcerned.

Today, I have to eat my words (with a side of fava beans): Amelia, it has been determined, is (so far) normal. Completely meeting her milestones, ripping ass and taking names. The therapists will be back in a couple months to reevaluate, because her diagnosis is an automatic qualifier for the program, but so far, she’s spectacularly…normal.

I’m so beyond thrilled that I’m in shock. Tonight, the champagne will flow freely, but today, I will simply gape, slack-jawed at my daughter. My principessa.

I’m not worthy.

I’m in the running for Funniest Blog and while I won’t win, I will hassle you to vote for me. Because you can vote daily and that rules the school.

——————

As part of the requirement to get into nursing school (other requirements at my school included: a general bad attitude and the disregard for others), I had to enroll–and pass–Anatomy and Physiology I and II. And as part of A & P I and II, we had a weekly lab practicum. In addition to a nifty cadaver and an actual skeleton (now they are often made of hard plastic), my professor had somehow acquired a brain.

Now and again, he’d pull it out and leave it on the front lab bench. It would float there in it’s glass house, suspended in a clear yellow liquid almost as though it were another member of the class, nodding along. Because my professor had a great sense of humor, he’d labeled it years before with a fading sticker that read: “Abby Matter.”

It was a nerdy Young Frankenstein joke, he explained when I asked, wondering if the name was of the brain’s previous owner.

So to pay tribute to him, I have begun the process of labeling all the entries that involve me whining about Amelia’s encephalocele “Abby Matter.”

In a valiant effort to distract myself from myself, I tried my daughter on solids this morning now that she is the same age as my son’s were when they tried solids for the first time. I was sad to note that the formula, unlike breast milk, does not digest those simple carbohydrates the same way, so the longer it sat, the more it stayed the same.

Amelia was…not thrilled by the idea. Maybe she was picking up on the grimace I was no doubt making as I tried to feed her the paste-like rice cereal, maybe she just has better sensibilities than her brothers, but she was less than thrilled by the entire experience.

What I have not been talking about, though, is that Amelia’s Early Intervention interview with the therapists begins on Friday afternoon. I am less than thrilled by this idea, even though I keep reminding myself over and over than so many kids have problems so much greater than hers and that I should just shut the fuck up.

The marked rigidity of her limbs could just be a further sign of her awesomeness and her readiness to take on the world, but I’ll admit to you, Internet, that my heart breaks a little every time I see the strange Frankenstein way she uses her arms sometimes. Is this something? Is this nothing?

I’m just not sure.

I’m just not sure.

When my eldest child was 2, he was referred by an Asshole Pediatrician (do I sense a common theme among my doctors or what?) to Early Interventions for speech therapy.

He wasn’t talking, you see, and that coupled with his incredible love for the planets–which, I should add, the MD didn’t know about–made for a strange child. It took a couple months for a case worker to be assigned and ages after that to get the initial evaluations done, because like any state program, the need is greater than the ability to provide services.

When he was finally tentatively diagnosed with autism, I will be completely honest, I was relieved. It sounds weird, to be thankful my child has a disability, but it was the first thing about him that made sense to me.

My son had been rejecting me since he was born and my heart was not only broken, it was smashed to bits by his second birthday. He loved my mother, yes, but not me. If I never came back home, I promise you, he’d not have cared.

Ben and Mommy (colon) It’s Complicated.

He didn’t care for me, and while I’d like to say that it was because he sensed that I was an asshole, his brother certainly (still) cannot get enough of me. At some point I finally realized that it’s him, not me, that has the problem. But parents, of course, always blame themselves and it took years for me to be able to see that.

Ben was in therapy for years, many times a week, both speech and occupational, and it helped. My life isn’t a Lifetime Movie, where I’m played by Tori Spelling and Ben is played by that cute kid that I kinda wanted to strangle from Jerry Maguire, so you know that things still aren’t exactly normal, but they’re more…manageable.

Ben and Mom (Colon) It’s Still Complicated.

—————

Today I owned up to my old demons and pushed the fucking denial aside and called to set up a caseworker for Amelia for Early Interventions.

I did it because it’s the right thing to do. Like it or not.

Maybe, like some of you suggested, her extra brain matter was just her Awesomeness being uncontainable in her skull. A sign of high intelligence. I like that explanation best, I think.

It’s the right thing to do. But that doesn’t mean I have to like it.

If you can believe it, Amelia will be 4 months old on the 28th. Which, holy shit, where the fcuk did time go? I guess the constant sleep deprivation which is constantly making me wonder what season it is again as I put on my gardening gloves is making me a wee bit spacey. Or perhaps I am just stupid. Doesn’t matter.

Today marks Visit 2 from the Home Heath Nurse. When we were in the NICU, Amelia’s diagnosis was flagged. Bolded, red flagged, signed, sealed and delivered. It seems as though every single department of the state knows about her encephalocele and I imagine when I go in for my driver’s license renewal in a (blessed) couple of years, I think the clerk will say “Oh YOUR daughter has the encephalocele!” If that gets me a better spot in the (wrong) line, well, then that will be the bright spot in this whole mess.

Developmentally, though, my daughter seems fine. I had a number of people tell me that the synapses in wee brain’s can regenerate much better than those of adults (which, yeah, duh, look at me. Obviously my synapses are dying left and right. Some might say it’s a direct result of my three kids and I would heartily agree).

It’s really easy to forget how serious her diagnosis was until I look at things like this:

Forgive the terrible quality of this picture. It was taken right before Amelia was taken back to surgery and right after the nurse had come in with a gown designed for probably a three or four year old. She apologized, saying that this was the smallest gown they had. Which really bothered me more than it should have.

And then I look at this:

I don’t have many pictures of Amelia’s encephalocele because I couldn’t bear to look at it without taking a couple of Xanax beforehand. But you can see the area where her brain was hanging out of her head pretty well on this handy MRI that I was given copies of.

Which. Yeah. Wigged me out. I don’t relish looking at spirally sections of my kids’ brain. As my mother would say, “I don’t know why NOT.” She’s a pistol, my mother.

This is what it looks like today, although the picture makes it look more muted and subdued than it is in the flesh. It’s VERY red and incredibly angry looking. I find that fitting.

She’s just like any other baby.

But…

The nurse was concerned by my daughter’s inability to travel in the car. See, now, both of my boys were assholes in the car, but as babies they were Assholes Period, so it didn’t make a difference what we were doing. Driving illicited the same unpleasant response as breathing.

Amelia, however, is an excellent baby. Sure, she has a temper and admirable lung strength (in addition to an iron clad will), but the times she spends honking each day is measured in minutes, not hours. Unless, of course, we go in the car.

The minute we start moving in the car, she screams. And I don’t mean some pansy-ass little whimpers, I mean full-on hollering. Like she’s in horrible pain. Having seen my daughter in incredible pain before, I know the sound. The swing we have moves her from side-to-side and doesn’t bother her, and we don’t do the stroller because I don’t know why we don’t. My kids all seem to hate the stroller.

(For someone who had her brain sliced and diced, she’s an awfully big crybaby when it comes to shots)

See, her encephalocele was in the parietal lobe of her brain, and among other things…

(hear that? That’s the sound of a zillion bored readers clicking away from here)

…it controls proprioception, which is a fancy word for the feeling of her body in space. No, not OUTER space, but the feeling that tells you, “Hey, you’re standing up” or alternately, “Hey, you’re NOT standing up.”

If your eyeballs just fuzed shut in boredom, I am sincerely sorry.

So it would make sense that the backwards movement in the car would bother her. We’ve been desperate enough to buy different car seats to try and see if that was the problem, we’ve driven quickly, we’ve driven slowly, nothing seems to help. Which means that we’re not effectively shut-in’s just as we’ve gotten Alex okay with the car. Figures.

But the nurse, she was concerned. Not about my shut-in status, because I’m pretty sure she’s here for my daughter and not for me. Unless, of course, she saw that I was turning my cats into bonsai kitties or building a shrine to Britney Spears (note to self: hide Britney shrine). Then I imagine she would be highly concerned.

So, it looks like it’s likely back to the neurologist with us. While this in and of itself isn’t a huge deal–save for the fact that he is an asshole and will probably make me cry –it’s discouraging and it’s a reminder that maybe we didn’t skate by problems as easily as we’d thought.

I don’t really have a clever or witty end to this post so I’ll distract you…

LOOK, A CUTE BABY PICTURE!!

Last week after sprinting jauntily to the mailbox to see if I’d finally won that bazillion dollars I keep hearing about (a Nigerian Prince TOLD ME SO), when I found a pile of junk mail. After sorting through it, I realized that I had one piece that was not junk. From the county. Dreading anything I ever get from the county (on principal, not because they send me Nasty-Grams. DOWN WITH THE MAN!!), I tore into it.

It was a referral for Amelia to Early Interventions.

This wasn’t the first time I’d seen this paper (the name of the child was different, of course) and for some reason it smacked me blind. It’s SO not the end of the world to have a kid that needs some therapy. Shit, she’s in decent shape, by comparison (and by comparison, I mean NOT DEAD. Because this kills a lot of kids), and I really need to get the fcuk over myself.

I guess I’d just been in denial the whole time. Like going through the day to day motions with all that goes on in my Circus of a House, without thinking, honestly THINKING about what a diagnosis of encephalocele really means. I am, apparently, the only one who thinks this way because I called The Daver at work that day in a mild panic:

(ring ring)

“Hello?”

“OHMYGOD DAVER, OHMYGOD.”

“Uh…what?” (he knows better than to really worry when I call in a panic)

“Amelia….got her referral to Early Intervention,” I waited to hear him freak out.

“….” Typing sounds in the background.

“…and?”

I sighed deeply before we hung up. Apparently, I am the only one who is bothered by this. Figures.

I need to put on my big girl panties and just call for the appointments and evaluations, I know I do. Well, okay, I’ll tell YOU Internet, but let’s keep it between us, okay? I actually DID call. And then I promptly hung up when someone answered. Maturity has never been my strong suit, you know?

So I will do what I always do! Distract you with pictures! Because what else can I do? AND WHO DOESN’T LIKE PICTURES?

The Devil doesn’t. I swear.

I know that I post more pictures of my younger kids and while that would make it appear that I am favoring them, I assure you that it’s not.

This, this picture is Ben, In Real Life. Always in motion.

And this is my second born, Alex:

Playing with bath crayons. Outside the bath. Because he is that kind of kid. (what the fuck ever that means)

Daver was sick a couple of weeks ago with the flu–influenza I mean–and slept pretty much 24 by 7 for a week. While I am normally annoyed by him and his irritating and incredibly dramatical Man Colds, my cold, mean heart felt sorry for him.

MAYBE IT WAS THE SWINE FLU!! OH EM GEE!! (note the 2 exclamation points which should illustrate just HOW emphatically emotional I was being) Actually, I think it might have been.

And lastly, Amelia says, “You moron. It wasn’t the fucking swine flu.”

When I showed up to the pediatric transplant unit for my first day of clinicals, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.

Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.

I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.

It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.

And still, even as these children died, life went on outside.

People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.

They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.

This secret place, the land of tears.

When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.

Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.

Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.

Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.

—————–

My universe is less random than I once thought it to be.

When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.

The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.

Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.

We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.

The unit of sadness, of broken dreams and tears. Laughter and heartache.

This secret place, the land of tears.

After Amelia was born and it was determined that there was some sort of issue with her head and brain (bright spots, although excellent on jewelry–think diamonds–are not something, apparently, you want to see on an MRI), I could barely watch that commercial with Alec Baldwin and the brain. Nor could I watch House, MD without having to avert my eyes whenever the picture of the brain came up in the credits.

Neurotic much?

Why yes, yes I was neurotic. I was probably as bat-shit crazy as I’ll ever be (God willing) and there’s a small part of me that feels as though I should be apologetic for it. Things did, after all, turn out as well as they could, especially considering the diagnosis.

But I’m not sorry. Not even remotely. Since I hadn’t thought there was an actual encephalocele, I’d actually prepared myself for a better Worst Case scenario than. Which means I wasn’t nearly as neurotic as I could have been. How frightening is THAT?

Besides, from the moment she was born, no one told us jack SHIT about anything. It was kind of remarkable, just how little information the hospital and it’s employees would divulge. I probably could have learned more from the lady who cleaned my bathroom than I did from all of the nurses and doctors. COMBINED. My friends who have been there will know if that’s standard or not, but damn, how powerless did we feel?

Moving right ahead, now that my neuroses have been well documented yet again. (If that’s not the purpose of blogging, I don’t know what is)

Amelia turned a whopping 2 months old on the 28th of March and we celebrated, perhaps a bit belatedly, by going to back-to-back doctors appointments. Lucky girl!

Before we went to her pediatrician yesterday, I had a rare couple of quiet minutes wherein I waxed eloquent (If Aunt Becky waxes eloquent and no one is around to hear it…? Did it happen?) about how relieved I am that this is my last child. With my other two, even with Ben’s autism, I was much more laid back and relaxed.

So what if Ben ate from exactly one food group (White Food, for those who wonder)? Who cares if Alex didn’t walk until 16 months? That rash on his ass? Slap some Vaseline on it and call it a damn morning.

But suddenly, after Amelia was born and the threat of her developing abnormally was a Front and Center Issue, I consistently noticed things about her. Wait, she’s rolling her eyes into the back of her head as she sleeps, IS THAT A SEIZURE? Oh my GOD, what is WRONG with her hard and soft palate? IT LOOKS WEIRD.

From neurotic to MORE neurotic, I quickly went.

Until yesterday, when I went to the ped with her and I had an epiphany (ala Arby’s = RB’s = Roast Beef! What? I never claimed my epiphanies were bright.). My daughter seemed…normal. Completely normal. She eats well, has regular craptastrophies wherein several items of clothing are damaged, smiles when she’s happy, pouts and screams when she’s mad, and acts just like a…baby.

MY baby.

Maybe she’ll never join MENSA (to be fair, they’ve certainly never beat down MY door either), maybe she’ll have as hard a time with fractions as her dear old mother does, and maybe she’ll never be known as a Brilliant Mind.

Say it with me now: So. Fucking. What?

Today, at her follow up with with her neuro (F/U in medical lingo. Which always brought me much satisfaction to see in a chart when I was an actual nurse because I am very, very mature) she was discharged from the neurologist who told us that we’d see him in the next lifetime. Which may be entirely too soon for me.

Next week, we’ll be visited by the county health nurse who will follow Amelia for the next two years to determine if she’s meeting all of her milestones. We’re also being followed by the University of Illinois. Apparently her diagnosis is not only rare, but totally interesting!

And they’ll probably find something, because if you look for something long enough, you’re bound to find something or another wrong. But I don’t care.

Normality is totally overrated.

Because we are all about consolidating here at Casa de la Sausage (plus girl) my GP is the same as our pediatrician. He’s an Old Skool former military doc which means he’s incredibly no-nonsense kind of guy and for that I love him. But since I delivered Amelia at a hospital that he doesn’t have privileges at (likely by his own design), we were seen by another ped. Rather than transfer everything over to my GP after we were discharged because we are also lazy, we’ve been having Amelia see the doc she saw in the hospital.

Man, that was a long and boring paragraph. But it has a point!

This week I had to follow up with my GP after my dosage of my anti-depressant was tweaked just to make sure, I guess, that I wasn’t going to kill myself OR others (and if I had, thanks to my incredibly helpful OB nurse, I’d have gone IMMEDIATELY to the ER. Because that’s what suicidal/homicidal people do. They behave rationally! Because suicide and homicide are both REALLY rational things to do! Obviously!). And because I am an incredibly wonderful daughter, rather than saddle my mother with all three of my children, I took my youngest along with me.

(complete aside! You know you’ve been to the doctor WAAY TOO MUCH when you actually notice that all of magazines are ones you’ve seen already! Like Audubon Monthly! Although I don’t read them, preferring to stare vapidly into space, I like to see different things at different offices)

The point of that insanely boring first paragraph is that my GP had not yet met my daughter who will become his patient (arbitrarily) after she is (hopefully) discharged from the neuro. So, because I am that kind of patient–you know, the kind that wastes the precious time of busy doctors–I immediately showed him the back of her head and told him all about Amelia’s encephalocele.

He examined her and told me about one of the saddest stories I’d heard in awhile. Sometime in the 70’s or 80’s, he’d gotten a call from an OB asking him to come to be at this C-Section. The OB suspected a problem with the baby, but without the fancy diagnostic tools we have now, he had no idea what the problem WAS.

Well, it turned out to be a mighty encephaolcele stretching from the top of the head to the nape of the neck.

As you can imagine, the baby didn’t make it.

This was the beginning and end of the experience he’d had with my daughter’s diagnosis.

And this reminded me of how amazing it is that any of us turn out as well as we do. How often things actually go RIGHT.

And what a fucking miracle Amelia is. Needless to say, I’ve been holding all of my kids a little tighter.

The pictures, they speak for themselves:

AW! Lookit! Alex is FEEDING THE BABY! What an awesome big brother!

Oh, and there he goes, trying to pick out her eyeball.

Kids. I tell you.

—————–

To answer your burning questions, I present to you an abbreviated post! Hooray for small bits!

So, why the hell didn’t the doctor tell you about the encephalocele?

Honestly, I don’t know. I’m not sure if the whole litigation-happy climate made him wary of telling us anything before he knew for sure or not. I’m feeling much better about it today after being nearly bowled over by the news yesterday. Dave, predictably, handled it much better.

We went into surgery thinking that this was fluid-filled, which in retrospect, makes no sense so the news that there were actual glial cells inside that pocket was completely shocking to me. And it made me feel oogly inside.

Kinda creepy when you think about it.

Well, what does this mean for her development?

No clue. She appears to have all of her mental facilities intact, but she’s only 5 weeks old. The age when they sleep, poo and eat exclusively. So measuring milestones is an impossibility at this moment. She does eat, poo, sleep and wiggle which is a good sign. And when she looks at you, the lights appear to be on and someone appears to be home.

We have been flagged by the county (her diagnosis, not my shabby parenting) and will be followed by a public health nurse. That in addition to my own nursing experience ought to be able to ascertain any issues as they arise (or don’t. Let’s hope) and get her into proper treatment as needed. We’ve had much experience with Early Intervention, so I’m not scared of that.

We’ll handle it either way.

How are Alex and Ben adjusting to their sister?

Shockingly well, truth be told. Alex is a consummate Momma’s Boy and I was most afraid of how he’d take to having to share my attentions, but so far so good. Providence smiled upon us and we were able to enroll him in some in-home care 3 hours a day after my neighbor recommended her sitter. Who is awesome.

This seems to help.

A couple of months before Amelia was born, we’d bought another doll for Ben, who is nurturing it and loving it just the way he did with his first doll (bought when I was pregnant with Alex). Yes, my son plays with dolls and no, I don’t think that’s stupid. He may be a father some day and I want him to know that men can nurture as well. He’s loving having another sibling.

—————–

Anything else I failed to answer? My brain is mushy and stupid right now (okay. My brain is always mushy and stupid. I admit it.) so ask away.