altarflame | Guess who went to the neurologist today? (Reply)

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.