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I’m Bringing (The) Neuro Back


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.


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…



67 Comments to

“I’m Bringing (The) Neuro Back”

  1. On May 19th, 2009 at 1:06 pm magpie Says:

    Does she scream at other motion? Like a swing or something? How about the stroller?
    Weird. But I’m not a neuro.
    Hope all’s well…

  2. On May 19th, 2009 at 1:44 pm Minnie Says:

    Sounds like a new neuro is in order first of all.
    Secondly, is it only in the car, or any movement? (Swing, stroller, etc.?)

  3. On May 19th, 2009 at 12:51 pm fidget Says:

    it may be that she needs some therapy, which should be free through your state using the birth to three program or whatever they call it around you

    If she is having problems with motion and establishing herself in space, therapy will help. To what degree, you can get a better picture of that through the neuro but alas, with the brain, even brain surgeons/doctor are often mystified. But you already know that.

    Even if she is having an issue, you both still rule. We all have issues.

  4. On May 19th, 2009 at 1:52 pm heather Says:

    I hope the visit with the neuro confirms that she’s just throwing some baby rage around. I really do. I’ll be thinking of you and your cinnamon girl in the meantime. Hugs, Becks.

  5. On May 19th, 2009 at 1:00 pm baseballmom Says:

    Dude, find another neuro…ours is an angel sent from heaven…she rocks. I look forward to T’s epilepsy checkups every six months!

  6. On May 19th, 2009 at 2:14 pm Ms. Moon Says:

    As I told you, one of my children had the same reaction to the car seat. And she was (supposedly) normal. I mean, it was like she was being tortured back there.
    So- maybe that’s all that’s going on. She just really doesn’t like riding in a car. Of course you have to get it checked out and I’m so sorry your neurologist is an asshole but…being the superb mama you are, you will do what needs to be done. And Amelia is a beautiful child who will one day beg you for her own car. Which she will not scream in as she drives away.
    Except with the joy of having a new car.

  7. On May 19th, 2009 at 1:15 pm Cathy Says:

    Ugh, suck.

    I have some stunning pictures also. Namely a head CT with more holes than bone. It’s LOVELY, in that “now I need to go vomit” sort of way.

    We also had that gown problem. The gown was their “xtra small” and I could have fit 4 of him in there. With a teddy bear. It was a children’s hospital! What the crap?

    I hope it turns out to be nothing other than a dislike for the car. We’ve certainly had that at various stages. I mean, with the normal one even.

  8. On May 19th, 2009 at 1:39 pm Jacquie Says:

    Hopefully it’s just one of her quirks for now, but if not I agree that occupational therapy can be quite magical in helping the brain learn to handle the stuff that it wants to hate. Sending good thoughts


  9. On May 19th, 2009 at 2:40 pm Badass Geek Says:

    I scream when I ride backwards in the car, too.

    Mostly because its hard to drive while looking out through those tiny reverse mirrors.

    Seriously, though. Scary shit.

  10. On May 19th, 2009 at 1:41 pm Kristine Says:

    Ours didn’t like the car either, but like your older two, he was also kind of an asshole to begin with.

    I hope, one way or another you guys can figure out a solution for her, because shut-ins are creepy, and I don’t want you to be creepy.

  11. On May 19th, 2009 at 2:42 pm Nicole Says:

    I agree with the poster (Lesley) who wrote, ‘And, yes, I am in the camp of people that believe in the incredible resilience of our little kiddos and neuroplasticity…I cheer the little neurons on!”

    Hells yes.

    (and I don’t think medical descriptions are boring, in fact, I already googled encephalocele…)

  12. On May 19th, 2009 at 1:50 pm Lesley Says:

    My son had a stroke right before he was born, which means that we have the pleasure of too many neuro visits, too. And, nothing gets me more fired up (and needing a drink) than talking about our first asshole neurologist. We switched to the other pediatric neurologist in the practice, who is the most lovely, open minded, and simply pleasant doctor. Only AFTER I told other peeps in the local pediatric community how we switched did everyone (and I mean everyone) say that, yes, Dr. X is a good clinician, but arrogant and doesn’t listen to people.

    And, yes, I am in the camp of people that believe in the incredible resilience of our little kiddos and neuroplasticity…I cheer the little neurons on!

    Good luck!

  13. On May 19th, 2009 at 1:53 pm Marie Says:

    Lets just pray she really hates the car mmmkay?

  14. On May 19th, 2009 at 2:55 pm Maria Says:

    She is SO beautiful, B.

  15. On May 19th, 2009 at 1:57 pm a Says:

    I hope it’s just that she hates riding backwards or, even better, does not enjoy the view of the back seat and rear windshield.

    And, I hope your neurologist is better on the next visit, or that you can find a good one that you like that is covered 100% by your insurance.

    She’s a beautiful girl…

  16. On May 19th, 2009 at 1:59 pm Mrs.Spit Says:


    If I promise you a lovely new knitted outfit, will you knock this off?

  17. On May 19th, 2009 at 2:28 pm foradifferentkindofgirl (fadkog) Says:

    I hope you have a better experience with the doctor the next time you must see him. I also hope there’s another option for another doctor that you can connect with if you can or choose to switch. My hope for that pretty girl of yours is that she’ll just require some therapy to help and nothing invasive.

  18. On May 19th, 2009 at 2:33 pm Katie Says:

    Ugh, specialists can be so….odd. Hope it goes well.

  19. On May 19th, 2009 at 2:36 pm Melanie Says:

    I am always a proponent of getting things checked out, but DUDE this could be just a quirk!! My middle sister screamed like bloody murder just having a seat belt on, I mean screaming like you have never heard (and this back before car seats were a must have), my mom tried the car seat and the screaming was sooo horrific that she resorted to just a seat belt as soon as she could transition (again we are talking 30 years ago) by this age she would cry some but not crazy hysterical…. to this day my sister doesnt like confined spaces she does wear her seatbelt as an adult but has a window or sunroof cracked ALL TIMES OF THE YEAR……. do not close her in! What makes a baby know this feeling from day one I have no idea, but my Mom swears she did!

    I am praying for you guys!!

    Now do you have any suggestions for how to get a young baby/toddler to wear a hat in the summer?? My daughter has a hemangioma on her forehead, I am supposed to keep it out of the sun, which was easy peasy LAST SUMMER (since she was a newborn)……. this year………. hmmm girlfriend will NOT wear a hat, seriously I want to get out there this summer!

  20. On May 19th, 2009 at 2:46 pm Nessykins Says:

    I hope things get better with your daughter. She looks mega adorable. I can’t imagine having your problem, it must be tough. My daughter (3 months) falls asleep 99% of the time when we’re in the car. She just knocks out. I will say a little prayer for your little one.

  21. On May 19th, 2009 at 3:00 pm Mrs Soup Says:

    I pray that Amelia just hates the car and that’s her crazy quirk for the moment. Although, if you are a shut in…does that mean you’ll make more posts?

  22. On May 19th, 2009 at 3:00 pm Michelle Says:

    Chiming in with my (almost worthless) opinion here. I think you mentioned that she does fine in the swing or other things that move, just not the car. It seems to me that if she was having a neuro-proprioception issue then it would be global. I am betting she is fine. (I am a pediatrician, but not a neuro!)

    Here is my (again, almost worhless) theory on the car screaming. 2 of my 4 kids were screamers in the car, so I feel your pain! I think some babies basically get car sick in the car, so they are screaming cuz they feel bad.

  23. On May 19th, 2009 at 3:09 pm S Says:

    Proprioception as far as I understand it is a mixture of inner ear sensory, visual sensory and proprioceptors in the body. If she is asleep/has her face covered by a blanket, etc. does it still happen?

    Man, she’s cute.

  24. On May 19th, 2009 at 4:17 pm Sarah Says:

    Proprioception was where my gf’s little girl Emma had a LOT of her issues. I now know that gravitational insecurity is a real issue, as a result. Which trips me out. Unless I’m in SW Kansas, and then I totally understand.

    If it’s any comfort at all, they didn’t figure out where many of her sensory issues were until she well over a year old, and then the therapies were something that Emma really enjoyed, all very play-based, and made an obviously positive impact on what she could cope with. Of course, Emma didn’t start out with an encephalocele, but babies are crazy resilient and whatnot, right?

  25. On May 19th, 2009 at 3:25 pm DG at Diaryofamadbathroom Says:

    It’s criminal that people that have the smarts to fix our problems don’t always have the heart to make you feel comfortable about the process. Good luck with the dick, uh I mean doc.

  26. On May 19th, 2009 at 3:29 pm zelzee Says:

    Remind her how much she hates riding in cars when at 15 she wants to jump into a souped up, loud sports car with a 17 year old wearing his baseball cap backwards and blasting “Satan” music at inhuman decibles.

    Good luck with your visit. I will be prayiing for our little Amelia.

  27. On May 19th, 2009 at 3:32 pm giggleblue Says:

    i’m hoping someone snuck a tack in her car seat or something equally uncomfortable. meanwhile, i hate that your doctor is an ass! just cause he’s a brain surgeon doesn’t mean he can treat everyone like shit… i hope you don’t get to know him, know him, you know???

  28. On May 19th, 2009 at 3:36 pm Suzy Says:

    I love the medical explanations! I had some issues with proprioception myself, so I can relate. Felt like I was drunk all the time without the happy feeling.

    Good luck at the neuro!

  29. On May 19th, 2009 at 3:57 pm tash Says:

    I’m with above: I bet this is a matter of therapy, which someone with far more experience in the matter (and coffee!) will know exactly what to do/prescribe to get her feeling more comfy in the car. I’m sure movement and possibly sight have something to do with it — probably throwing off her internal balance and giving her a headache and tummy ache if not outright CONFUSION. In short: skip the doc, head to the therapist. Or, does he need to refer you? Assiness.

    And if you have her in some boy-ish dumptruck hand-me-down seat that may explain a lot right there.

  30. On May 19th, 2009 at 4:18 pm heather Says:

    She’s just 4 months old, so she can’t communicate that something is bothering her in any other way. I have some mild vertigo, and I just live with it. (Sometimes I want to cry too.) Even if she is having some mild reaction to the backwards motion, hopefully it is only temporary and something she’ll grow out of.

  31. On May 19th, 2009 at 4:38 pm sky Says:

    Our first was an asshole too 🙂 and I remember pulling over on more than one occasion absolutely certain that something was pinching or biting her. I hope that this is just a quirk of hers as other commenters have said.

    Can I just say how liberating it is to say my first was an asshole? hee hee

  32. On May 19th, 2009 at 4:55 pm birdpress Says:

    Maybe she is just trying to tell you that you need to buy a new car because she doesn’t like that one. Well, good luck anyway. I hope she grows out of it.

  33. On May 19th, 2009 at 5:01 pm hummingbird Says:

    I am a new reader to your blog. I have alot of catching up to do. BUT… I totally believe you and GET you on the whole proprioception, or sensory integration sensitivities. I have a son who had TERRIBLE SI issues (now reduced to only terrible when he is overly tired , currently age almost 7). As a baby he could sit up, he could lay down… but moving between the two? TORTURE. The baby swing was an instrument of disaster a forbearing of the coming of the end of the world. If your peds neuro does not offer a referral for you to your state early intervention program, demand on. Every state has a program to serve infants and toddlers (Part C of the Individuals with Disabilities Education Act – IDEA). You can find your state/local agency here:

    A lovely occupational therapist designed a home program that helped us retrain the brain and nervous system of my little boy. Im certain they can help you as well.

  34. On May 19th, 2009 at 6:57 pm Hope Says:

    I have always gotten sick riding backwards in trains, subways – thank God there were no car seats back in the Dark Ages when I was a child. Maybe she associated being in the car with trips to the doctor, medical procedures, pain, etc.
    From her pictures, Amelia has always seemed like a very alert baby – look at the expression in her eye right before her surgery – it’s as if she’s thinking “WTF? What’s up with this outfit? Right now you’re rocking me and acting like everything’s going to be OK, but I sense tension here – and that something is going to happen and it’s not going to feel all that good.” Trips to Target – bright lights, strange people – could remind her of the hospital.
    My friend had premie twins and kept them isolated from just about everyone for the first 2 years, so they wouldn’t catch RVS (or is it RSV?). So they quickly learned that anytime they went in the car, there was a 90% chance they were going to the doctor and only a 10% of going to grandma’s house. So they cried 100% of the time, until they were about 3.
    Is she holding her head up, rolling over, meeting other milestones? If so, there’s probably nothing wrong. But, you should get her checked out anyway. Just so you can stop obsessing that there’s something wrong with her.

  35. On May 19th, 2009 at 7:50 pm Eva Says:

    Lots of babies hate cars. I hope–and assume–that’s all it is. She seems absolutely perfect and normal from everything you’ve said. Besides, you know, the brain thing. My gut feeling: no biggie.

  36. On May 19th, 2009 at 8:00 pm Mimi Says:

    Well, if she’s already predisposed to proprioception (that’s a tongue-twister, ain’t it?), the fact that she may hate the car as much as my girls do would make for a hellish experience, wouldn’t it? Nora screeeched like she was in pain every time I started driving until she was easily 10 months old. And yes, I am a bad driver, so that probably made things worse.

    What does the nurse fear it could mean? Look at that bright-eyed baby! She is gorgeous.

  37. On May 19th, 2009 at 8:09 pm Jenn Says:

    I am not in any way trying to take away from the seriousness of all of this BUT I will tell you that my daughter screamed bloody murder whenever we were in the car for the first oh… 9 months of her life. We even turned her car seat around before she was a year old (quick! call the authorities!) because we couldn’t take it anymore. It helped. So maybe Amelia just really freaking hates the car. Hopefully.
    I’m thinking of you. (Always. ‘Cause I’m mad in love with you, in a stalker kind of way, you know.) xoxo

  38. On May 19th, 2009 at 10:06 pm Mrs.LaLa Says:

    She is so damn cute!

    Why do our beautiful little girls have to have these effing head issues. ::sigh::

    Hang in there momma.

  39. On May 19th, 2009 at 9:07 pm Painted Maypole Says:

    my daughter hate hate hated the car, too. my inlaws visiting and INSISTED on taking us out to eat dinner. i wanted to cry. couldn’t my MIL just offer to cook? or hell… order in!


    hope all is well…

  40. On May 19th, 2009 at 9:52 pm Lisa Says:

    Maybe you can drive her around an empty parking lot for a few minutes with her facing forward just to see if it is the backward thing… I know she is way too young for this option yet, but testing it out as a theory is worth a shot. All of my babies were much happier facing forward…

    Your doctor works for you – if he is a jerk, fire him! If he is brilliant and you trust his knowledge, but his personality sucks, give him some ass pads and tell him he needs to use them after he removes the stick…

  41. On May 19th, 2009 at 10:01 pm kalakly Says:

    Aye, yi, yi….can’t a girl catch a break?? I hope it comes down to being a strong personality and a desperate hate of all things minivan for Amelia and nothing more. I’ll be holding you so tightly you’ll stop wondering if I’m creepy and start restraining order proceedings.

  42. On May 19th, 2009 at 11:15 pm stacie Says:

    We had the way too big hospital gown experience also. We, too, were at a children’s hospital, which said it was the smallest size they had. Of course it would have fit three or four of my sons in it at the same freaking time, but what ever. I stole it from the hospital for some reason. I couldn’t help myself. It now sits in his drawer, still unwearable because it is still too big.

    I hear you on the neuro assholes out there. I’ve wondered if being an asshole is a prerequisite for entering that specialty. No?

    I do hope that this is just a quirk and not indicative of something more severe. You all have been through enough already!


  43. On May 20th, 2009 at 12:03 am Heather P. Says:

    I still pray for her every night. Her eyes are so bright and involved, I feel like the Lord will take care of this for her.

  44. On May 20th, 2009 at 5:39 am SciFi Dad Says:

    Maybe I’m the asshole here, but as much as it sucks to have to keep taking her back to the doctors, I know that when we had to do it for my daughter (nothing as serious as your situation, but scary nonetheless) I found solace in the fact that a) she won’t remember being the girl who went to the doctor over and over and b) better that she gets the care she needs than not get it.

    I know it’s hard, but you have to look at the end, not the now, and believe it is for the best.

  45. On May 20th, 2009 at 5:58 am Anjali Says:

    4 months?


    If it were possible, she grows more beautiful every day.

  46. On May 20th, 2009 at 6:38 am niobe Says:

    sigh. you know what I’m trying to say.

  47. On May 20th, 2009 at 7:26 am Jen Says:

    This post didn’t bore me.
    Although, I am only capable of discussing my preshus baybee and her milk protein allergy and all the things I am trying to do to help it.
    So I might just be your target audience?

    She is soooo freaking adorable.

  48. On May 20th, 2009 at 7:59 am Kendra Says:

    She’s beautiful, by the way. The fact that the onesie appears to have a big drool spot on it only enhances her inerent adorable-ness.

    Yikes on the return to the neurologist. I don’t entirely understand this idea, but am I crazy? My first thought would be to pull out the stroller and wander around (inside the house if need be) pulling the stroller backward. If her problem is with traveling backward, this would probably set her off, right? And if not, you’d have a bit of an answer. You have way more educated readers than me, but that would be my first thought.

    It sounds like a scary diagnosis, but I think all diagnoses of kids sound scary. I hope things go well (and quickly) with the dr. Good luck!

  49. On May 20th, 2009 at 9:23 am Rachel Says:

    Farty hated the carseat and would scream like it was killing him. Luckily, the problem was solved by taking him out of the bucket seat at 2 months old and putting him in the convertible seat. I wish Amelia’s problem was so easily solved, but hopefully her synapses will just grow some more and she’ll start loving the carseat. Which is still the ONLY way to make Farty take a nap, btw.

  50. On May 20th, 2009 at 8:33 am Stacie Says:

    Poor little thing. Maybe she needs a mirror set up on the car seat so she can look at her adorable little face.

    So sorry you have to return to the neurologist. Hopefully the nurse was just be very conservative and the neurologist will see the need for further concern. I’ll keep your family in my thoughts.

  51. On May 20th, 2009 at 8:54 am Coco Says:

    Amelia is a rocking little spitfire and I feel sure things will work out fine, Becks. I think the Neuro visit is probably more as a precaution than anything.

    I’m far from an expert, but it sounds like Amelia could have some sensory issues that are triggered by the motion of the car. Maybe it’s the vibration, maybe the being backward, maybe a combo? If so, I’m sure there are resources to help her overcome it.

  52. On May 20th, 2009 at 8:55 am Coco Says:

    P.S. She is so cute I want to munch on her little cheeks.

    P.P.S. I’m thinking of you because I know this is scary. Hugs coming your way, babe.

  53. On May 20th, 2009 at 10:10 am Sarah Says:

    Sadie hated the car. HATED. With a passion. Was fine in the swing, stroller, other moving things, but the carseat just made her furious. She grew out of it around 4-5 months. My nephew hated it all the way until he was able to face forward – we took him on a 5 hour car ride and I thought he’d simmer down…not so. He just hated the backwards motion.

    So maybe it is something – but it could just as easily be nothing. Hang in there…

  54. On May 20th, 2009 at 10:25 am Miss Grace Says:

    Gabriel screamed every moment he was in the car. Like, for hours. He was (and I assume still is) incapable of crying himself to sleep.

    Those first months were…I’m glad they’re over.

  55. On May 20th, 2009 at 10:31 am g Says:

    She’s just pissed you won’t let her drive.
    She’s just pissed you won’t pull a Brittany and drive with her on your lap.


  56. On May 20th, 2009 at 12:04 pm Emily A Says:

    What a beautiful little girl you have. Good luck at the neuro. FWIW the pediactric neuro I took my 3 year old to was an ass too. Sometimes I think really smart people, docs in particular, just are missing something in the personality dept. Their brain is too busy being brialliant or whatever.

    Anyway, My son Max is 6 months old and has to have surgery in July to move his undescended testicle into the sac. Granted it isn’t his brain (or not the one in his head anyway), but I am already terrified of having to have him put under general anesthesia and have his precious little body cut upon. I am actually completely freaked out, but reading your story is helping me feel less alone, so thanks 🙂

  57. On May 20th, 2009 at 1:16 pm Karen Says:

    I don’t know what to say about the car thing. Most – if not all – of the babies I know do that automatic sleeping in the car thingy. I am sure they will figure it out.

    But she REALLY is a cutie.

  58. On May 20th, 2009 at 1:23 pm lettergirl Says:

    Did you say something? I was looking at the cute baby picture. Really, I have so been there. You want to say “don’t tell me one more thing is the matter, please. I am ready for normal.” You’ll get there eventually friend, promise.

  59. On May 20th, 2009 at 1:53 pm Betts Says:

    She looks pretty happy in her space to me, but what do I know. I don’t have a fancy brain doctor diploma hanging on my wall. My daughter used to scream bloody murder in the car, too. Let’s face it, who would enjoy riding backwards, staring at the back of a seat and too low to enjoy the view. There are mirrors you can put in so she can see herself and you can see her face. I hope it’s something simple like that.

  60. On May 20th, 2009 at 3:43 pm lady lemon Says:

    Sucks that your doctor is a dick and you have to go see him again. I wouldn’t worry too much about the car seat thing. I’m sure it’s a problem for tons of babies that haven’t had brain surgery.

    All the same, better safe than sorry, so go get it checked. Maybe she just has baby motion sickness? That riding backwards thing can be tricky for perfectly healthy adults!

  61. On May 20th, 2009 at 8:04 pm Lola Says:

    Well, hopefully, she just hates being seen in a minivan or being restrained (I mean, who doesn’t) or maybe she gets upset when she can’t see you.

  62. On May 20th, 2009 at 7:52 pm CLC Says:

    Ugh. I just don’t know what I can say that will make you feel better. But my stomach felt sick when I read this. I hope that nurse doesn’t know anything and is sending you to the neuro only to waste your time.

  63. On May 21st, 2009 at 7:09 am Betsy Wuebker Says:

    Oh.My.God. I am 21 years ahead of you, sorta. With my Geoff it was hydrocephalus, stages 2 and 4 brain bleed (depending on the side), shunt. The premie onesies were too big for him, too. He had to get to 5 pounds before they would do the surgery. In the meantime we looked at his brain through the fontanel via ultrasound. Stone Age technology compared with today. And yes, it grows back, because the little system thinks it’s still in utero or shortly out. Awesome.

    So, once the genius team realized his brain, though growing back around the massive damage, was swelling and crashing against his skull, the neuro would come and draw excess fluid from the base of his neck with NO anesthesia and a horse-sized needle. Off then this asshole would go to his tennis club and we would spend the next half day pinching and hurting my child more. So that he would cry. So that he would keep breathing instead of withdraw and shut down on us altogether. So that his color would turn from death mask grey to pinky again. Nice, eh? I went out of body every day we did this for two indescribably horrible months. Sigh.

    Back then, prevailing wisdom was premies could not feel pain. Seriously. Heretical neonatologists were beginning to say they might. It felt like we were in the 18th century and they wanted to bleed my child with leeches. I mean, why bother with the giant anesthetist who took my child from my arms prior to them opening his head with a knife?

    I blogged about it some here – not an overtly gratuitous link, I hope.

    1. Neurosurgeons are inflamed, self-aggrandized assholes. My ex pretty much came to blows with ours in the hallway outside the NICU when the neuro pooh-poohed the traumatic effect of his pre-surgical treatment. It didn’t matter that my kid almost died every time this dude showed up with his evil instruments. He didn’t see that, therefore it didn’t exist. The fact that he eventually worked a miracle on my son doesn’t mean he gets me to call him Yahweh.

    2. Does your adorable girl need the benefit of some more study or experimentation on your part? Does she need something to focus on besides the upholstery? Back in the day they were given what was called a sugar tit…can you introduce what will probably be an adult food issue with pacification here? Priorities! Can you turn the car seat around so she’s facing forward? I know, illegal, but seriously, does anyone believe legislators really have the best interest of an individual in mind with what’s going on these days?

    3. My Geoffrey screamed bloody murder with snot on top at haircuts, fingernail clipping, x-rays, under any kind of procedure-related restraint. We were approached warily by other parents, security guards, store managers, whoever, because of his Linda Blair antics. We were kicked out of more places than an ornery sailor on payday. I felt it was some kind of subconscious memory that triggered this from when he was poked, prodded and messed with when so tiny.

    Something, perhaps not physical at all, is triggering this with your stunningly beautiful Amelia. It might be as simple as a synapse gone awry due to the awesome repair she has had. Or it might be an unexplainable thing that might dissipate over time. (Geoff now has a regular buzz cut and fairly decent manicure. At 21.)

    In the meantime, it’s obvious you need some type of adaptation in consort with her ability to manage her reaction (which, yes, Capt. Obvious here realizes is about nil at this point). This, IMNSHO, is what you could shoot for with the neuro. Kind of a hall pass for traveling, maybe?

    I’ll shut up now. But man, is that baby of yours cute.

  64. On May 21st, 2009 at 8:49 am Dot Says:

    Hope it all goes smoothly and he has some good suggestions for coping. It makes sense to investigate this, even though it could have other causes. I wish you had a better neuro. Amelia’s had so much personality from the very first picture!

  65. On May 22nd, 2009 at 2:09 pm Meghan Says:

    I’m opting for she just wants to be a backseat driver and hates the way you guys drive;) Hang in there maybe the neuro developed a personality and he’s nice now??? If not I’ll snab some Xanax from up here and mail it to you in an unmarked plain paper box marker “personal massage items”. I know them being “Canadian” drugs they aren’t as good, but that just means you get to take more of them for a “good” buzz.

    Sending you hugs <3

  66. On May 25th, 2009 at 3:23 am Betty M Says:

    I am in the its just a not liking not seeing you thing until proven otherwise. The nurse probably has no better idea than you do at this point and is working on the better to see someone who does. Pity he is an arse – what are the options for a new one?

  67. On May 25th, 2009 at 10:45 am mumma boo Says:

    Oh, babe, I’m sorry Amelia is such a lousy backseat driver. I think the nurse is being overly-cautious, which in most cases, is a good thing. Sorry you have to deal with Dr. Asshat again, though. Big hugs coming your way, and of course, slobber-y wet kisses for those adorable baby cheeks. She’s beautiful, Becks, and she’s a fighter. Just like her mama. 🙂

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