Aaron's cat, Peter, is still acting as though he just got back from 'Nam around everyone in the house - leaping from a litter box amidst a fine spray and diving under furniture as soon as anyone enters the room, and so on. Except with Aaron, of course, who he nuzzles and loves on and purrs loudly with. The other night I peeked in his room and Peter was in some kind of state, I could hear him purring from the hallway and he was acting like he wanted to fuse himself to Aaron's shoulder and face. He was laughing and scratching him and said, "Look Mom! Peter's in love with me! He wants to marry me, and make millions and millions of little cumans!" Oh, Aaron.

So. This has been Surreal Week for the Walker family. I have been having extreme dizziness from antihistamine withdrawal (OF ALL THINGS), Grant is in Tooth Pain Hell, and so both of us are largely useless as my mother calls with updates every few hours because my Nana is in the hospital. She had aneurysm (sp?) surgery a few weeks ago, and it seemed to go very well. We sent flowers and called her and it seemed all good. But it turns out that some thing they did wrong in there was blocking an artery from supplying blood to her kidneys. Two weeks of undiagnosed kidney failure later...and we're dealing with all kinds of horrible effects. She's in the ICU, with my poor mother who is still horribly grieving for her Dad that JUST DIED two weeks ago (her parents are/were only 61 years old here...) Nana has significant neurological damage from swelling around her brain from excess fluid buildup while her kidneys weren't working. She can't move one leg, can't see well, and doesn't know what year it is...this is my Nana who I lived with throughout high school, who we go to be with every year for Christmas Eve, who has a full time job and takes vacations...who's husband that is still fit and active is 18 years older than her.

As I've sat in my office with the room spinning, trying to avoid standing, trying not to dwell, trying to help Grant feel better with heating pads and liquid tylenol and chewable Motrin because he can't take pills and hot tea and distractions of every womanly sort that can be mustered when one feels that they're falling down while just sitting there...I've been doing a lot of browsing around online.

And I've found some awesome stuff! For instance. Alexander McQueen, who I think rocks, has designed some clothes for Beth Ditto. Who is fat. And unashamed of it. And beautiful anyway, in a way that SHOULDN'T BE SO SHOCKING. Like...ok. I am not someone who thinks all fat is good fat or that it's awesome to be huge, I understand there are real health risks and it's important not to forget that. But, I also know that you can take two people and feed them both the same thing every day, and one will get fat while the other stays thin. And I know that a large proportion of Americans are overweight, and yet we continue to idolize EXTREME thinness as the only thing fit to be displayed in any arena, and eating disorders and our young girls and blah blah blah. So anyway this singer who has so many cool things to say has nude magazine covers, she has spandex costumes for onstage, she says that growing up her mom and grandmother would tell her not to wear a bikini but SHE never thought she shouldn't wear a bikini. She thought she wanted to wear a bikini. She thought it was just her body and not so different from a lot of other bodies and what the heck was the big deal that the mere sight of her could offend?
( Cut cuz there are four fairly large pics here, including some non-graphic nudity )

Even though I am not really into nudity on magazine covers in general...I can't help but think how AMAZING it would be if there were more like THAT in the grocery store checkout lines. How different all the ladies might feel as they checked out. I mean, wtf, there are guys that like this. This is what was being painted as the pinnacle of beauty for, oh, THOUSANDS OF YEARS. Why do we try to program everyone to think only one thing is beautiful now?

I am also really hoping my kids join forces and buy me this for Mother's Day:


Browsing through it on Amazon is an ethereal experience.


It is really horrible to imagine my Nana permanently mentally impaired. I know so much about neuroplasticity because of all the lay reading I did when Elise was born, and I have some hope, but she has a lot of strikes against her...age, sedentary lifestyle, lack of enthusiasm for new/challenging activities. Still and all the word is that she is in a fighting mood and they'll be starting physical therapy. *sigh*

Aside from being freaked out that my grandparents suddenly appear to be dropping like flies just because I love THEM in their own rights (my Dad's dad has also recently been hospitalized, and I've been talking with him as well...) it's also terrifying to me to feel as though there is some buffer being removed that protects MY parents. Like...once my parents' parents are gone...they're next.

*sigh again*

I set up a flickr account to chronicle my stolen images, btw. I doubt I'll be posting them all here. I'm just altarflame there, too, like most everywhere.

I'm also doing incredibly well with super healthy eating, and feeling good about that...I'm sure I'll expound soon, probably with pictures of weird and wonderful things like cheeseless pizza.

Lastly, Elise's 2nd birthday is May 1. And I am very excited about it. How many THOUSANDS OF TIMES have the Boston peds' words rung through my head? We'll know more in a year - we'll know A LOT MORE in two years, that is huge... And the first, oh, five thousand of them, two years seemed impossible to wait for. "One day at a time", like being boiled in oil to wait and to see what would happen. I am ready to celebrate this miracle child.

Who knew the doctor's office could be so much fun! I mean...really.

Her neuro has a partner/fellow/whatever who is British, and spent quite a long time with us. Significant points of this visit include:

-We went over the EEG results that were never explained to me in depth before. And they appear to be written in some other language that I think I'd need 10 years of medical school to read. I learned that it showed symmetrical activity, which is reassuring, though not rock solid for saying all of her brain activity is symmetrical as EEGs aren't really good diagnostic tools for generalized diagnosis like that. There were no epileptiforms; apparently even if a baby does not have non-clinical seizures during an EEG, they can have this other brain activity that indicates an underlying seizure disorder? Anyway, there wasn't any. Most interesting to me, there is a certain type of sleep activity in the brain called "sleep spindles" that typically develops in babies between 6-8+ weeks, and at just under 6 weeks, she already had them, which indicates a really surprising level of neuro maturity.

-I've been worried that her progress so far, though awesome, is all involved with rear and lower brain use...the higher thinking and functioning stuff like speech and skipping down the sidewalk and pondering existentialism is all up front and in the middle, where her injuries are focused. So I've been thinking maybe her development could just...stop...at some point. But I learned today that it is not that simple. She's already using a LOT of higher brain function. For instance, you can learn to push yourself forward across the floor with the lower to mid brain. But you have to use higher brain function to see a toy and know to flip over and how to direct yourself to it (which she does). Likewise flailing and hooting in my arms might be accomplished without a lot of higher brain function, but doing it whenever I look away and then smiling and stopping as soon as I pay attention again is a whole other deal that's very reassuring (he saw her do this several times). The same with just holding onto something, vs working to get it back when dropped or crying when you take it away.

-She seems to have limited peripheral vision on the right side. If you wiggle one finger a few inches directly in front of her face, she looks - and if you then ALSO wiggle the fingers of your other hand way out as far as your arm extends, to the left, she immediately turns to look left at it. But if you do the same test with the extra wiggling hand on her right, she doesn't spot it until it's about 5-6 inches from the middle/stationary hand. This was demonstrated over and over. Two things - 1., it's a *huge* improvement over how she couldn't look to or turn towards the right AT ALL just 3 months ago - she looks to the right anytime she hears anything that way, now, and stays oriented that way as long as there's something interesting. You can no longer spot a preference. So, this could be where she's at "now", as her brain continues to compensate and re-wire, and it could be that at our next visit in a few months it will be a thing of the past. And 2. PLEASE! If she gets out of this with nothing but some limited peripheral vision on one side, I WILL NOT COMPLAIN. She can turn her head, you know? Aside from that, she has what seems to be excellent vision up close and surprisingly good for her age from further away.

-I was told to be careful with solids, because although it will probably not be an issue since she does so well nursing, she could have increased chances of choking and gagging when we start her on "real" food. She did after all have no coordinated suck and an exaggerated gag in the first couple of weeks.
I am a delayer of solids anyway. Though she is already noticing food as something different from regular things I hold and going NUTS trying to get at it O_o

-I got the surprise and excitement I was hoping for :D The fellow guy was flat out shocked as he watched her sitting independantly and following him around the room with her eyes, at her original state and prognosis. He kept blinking too much at her, and taking off his glasses to clean them with his shirt. Dr Duchowney, who has magazine and newspaper articles about or featuring himself framed all over that place and is very conservative about what he says to parents, actually used the word "miracle". He was grinning ear to ear. At one point, while they watched her step reflexes with her standing supported on the table, they had moved the exam paper because it was distracting her too much crinkling underfoot. A few minutes later when they layed her down there on the table, she immediately flipped over, rapid-army-crawled to the crumpled paper, and grabbed it with both fists to shove into her mouth. "Well, would you look at that!" went the response, and much writing on a clipboard. It didn't even occur to them to take it from her for a minute, when I was about to be like, "Uh...she's actually EATING THAT."

-They kept with this "one day at a time" bs and told me you really know more at a year, but that she's doing "just great" and "amazingly well" and "if I were you I wouldn't be too worried". Then the fellow went with me to examine her second MRI images (I had this whole big folder I keep for her, that has, well, a LOT OF CRAP in it). And that was really interesting. He said he does seem "reverse signals" at various points in the front, which is apparently code for "tissue loss". And that is usually the higher learning area. But then he talked about how the major damage is mostly centered in this one big bright spot in the middle, on both sides, on the image. And then - you aren't going to believe this! He says - wait for it - "Sometimes that's just a problem with the machine, though."

__________!

*blink blink*

"What?" I ask, in a far too calm sounding voice.
"Well, it depends on the equipment used, how the radiologist sets it up, even the state of the lens. It could very well be damage like it looks like, but those bright spots can be ambiguous too and just be a faulty result. I'm just telling you this because generally that middle area damage coincides with major trouble swallowing and she seems to do well with that, so maybe there's some margin of error."

Well. Not that that was in any way the final word on that, but. Sheesh. I asked, "Is there any way that maybe, not on purpose but just because doctors are people, the ones in Boston may have seen a little baby who had yet to ever ingest anything, who had been unconscious for over a week after seizing for two days, who they knew had many shut down organs at birth and who seemed to not even respond to light sometimes, they might have looked at the MRI results expecting intense problems and seeing what they thought they would see? Whereas you are looking at a laughing girl who is trying to get the attention of every person who walks by in the hallway, that can sit up and crawl and nurses well enough to get fat, and so you see something else? I mean...how subjective is this?"
He said it is an art and a science, but that he doesn't think he's being that subjective or influenced by what he's clinically witnessing, though of course doctors are people too and your perspective could alter things a little.

I drove home so happy. So happy. And I felt such a cool camraderie with Elise - it's the third time we've been there together. In the middle of the night, once, for a fever, and then admitted just she and I for a couple of days in THE MOST BORING AND UNCOMFORTABLE HOSPITAL CHAIR EVER. I talked to her about walking with her, 3 weeks old and in my arms with everyone oohing and aahing as we passed, at Newton-Wellesley Hospital for phenobarb level checks. Lost with her heavier every second, twice. And wearing her in the sling to Brigham and Women's after we were discharged, for my checks. And playing in Dr Geraldi's office until he comes in the room. I guess it's silly, and who wants to bond over medical crap anyway, but we're coming through this together in a lot of ways. I think it's been the hardest thing I've ever done, to love her. To really love her, and not put any walls up or keep any distance between us. I didn't, I really sucked at it, for the first 2-3 days. In my hospital room unable to go downstairs and scared to and numb. But after that...it was like a dam broke and sometimes I thought I was drowning. I am not a person that likes vulnerability AT ALL. I broke up with Grant once just because he was mortal...really. I couldn't stand it, that he could die and I was just leaving myself open loving him so much. So this has been. Uh...challenging, to say the least. And I am glad to have went through the gut-twisting, not eating, violent sobbing hoohaw everytime she flips out excited because I've walked into the room, or lays her head down on my shoulder to fall asleep in my arms. :)

---

The Miami Children's Hospital Brain Institute's waiting area is a crazily awkward place to wait. There are teenagers in special needs strollers, drooling and yelling and twitching, which in and of itself really doesn't bother me that much. Of course I sit and think how I would love Elise no matter what happened to her, and I wonder how much each of them understands and is able to express to those that know them better than I do, and am grateful that maybe we won't have to go that route...but the awkward part is their self-conscious parents darting their eyes around the room and shooting dirty looks at anyone that so much as glances their kid's way. And I understand that of course you must feel so protective and so confused and possibly even ashamed of yourself for being embarrassed, but it's so hard to NOT glance at someone when they suddenly bellow, and I don't see anything wrong with smiling and waving at someone who happens to be quietly drooling as they examine you. There are a few rare exceptions of people who seem comfortable and accepting and friendly, but most of them seem to have social worker name tags on. It's hard to deal with. There was this one mother in expensive clothes with a designer handbag, who kept angrily shushing her son and frantically looking around, everytime he so much as peeped. He was far from being the most disruptive and was obviously trying to control himself, but she was even swatting him with a magazine and threatening him through gritted teeth :/ As well as staring a burning hole of hatred through anyone who looked that way, which I tried not to do...

And you want to ask everyone there who's kid looks totally normal why they're there, but it seems so intrusive and awful to do that, and nobody talks to each other and everyone is worrying. Then some young couple walks in with a brand new baby, and they look around at everyone else there and the mother just breaks down because she doesn't want her kid to belong in that crowd :/ *sigh*

I did talk for awhile with one mom who had a 4 year old that, a year ago, climbed the bannister at her grandparents' house and fell over it, to the first floor living room. 12 feet, headfirst. She cracked her skull and got a blood clot on her brain. She appears normal and acts basically normal, but now she's near-sighted, she gets headaches often and sometimes she has seizures :/ She was in the PICU for a month and a half when it first happened, and the mother had to undergo this whole freaking police investigation with CPS pulling out all the stops, with her daughter in the hospital. It's just all awful. She seemed to think she couldn't handle it if something like this happened to a new baby who was so small and vulnerable, whereas I felt I couldn't handle it if it happened to one of my kids who was already older and "normal" and healthy. Both of us were just heartbroken for the other. I guess it's just what you know vs. what is unknown. The truth is I think we can all handle far more than we think we can, and we just hope not to be tested in any more ways than we've already been.