Wednesday, January 31, 2007

why PANDAS is evil, part three

we are evil i tell you...EVIL!

gus' strep test was positive, which surprised everyone because he is otherwise totally asymptomatic. hence the new diagnosis: PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections). so, if i understand this right, cute, furry, cuddly, bamboo-eating, endangered bears have made my son's life a veritable hell for the past few weeks. apparently his body thinks that cells in his basal ganglia are strep bacteria and therefore attack his brain. it can cause OCD, tourette's, tics or sydenham's chorea symptoms, and considering that list he may have gotten off easy. it is not the bacteria that is the problem (or at least not the only problem), but rather his body's immune response to it that is causing him to be miserable. and every strep A infection will bring a recurrance. gus also had scarlet fever while we were in iowa, which may have actually been the starting point for all of this.

some interesting info on PANDAS is here

and here

but not here.

incredible and unbelievable, to be sure, but we are not out of the woods (or the bamboo forest) yet. gus has started taking antibiotics to kill the strep and we are trying to help him with the OCD symptoms. his teacher is wonderful--we are all so lucky to have her this year--and she is helping him at school. he is slowly getting better and he is asking us less frequently if he is going to die--instead of needing to be reassured 10 or 15 times that something is okay it is now more like twice. today he is still afraid of poisons, germs and bacteria (the latter rightfully so after all this) but he will get some help on how to cope with it if it stays with him. and he will be alright and happy and wonderful and everything that he was before all this happened. he will be all that and a bag of chips, and even more so--challenges like this shape the person you become and while i would not have chosen for him to be sick at all, i have to believe that he will be a better person somehow because of it. as much as it sucks for him we will definitely know when he has contracted a strep infection and can treat it quickly. one minor victory in all this is that gus doesn't think that anything is wrong with him, save having to take antibiotics for some infection that he doesn't feel. it will be interesting for all of us--me, rich, gus, his doctors, etc.--to see how this all plays out and how we need to adapt.

rare and amazing creatures, these 6-year olds are.

Tuesday, January 30, 2007

why PANDAS is evil, part two

don't be deceived by my cuteness...i am evil...

so now we are at about three weeks ago, and gus is asking me for the hundredth time if he is going to be okay. he is convinced he has poisoned himself because he touched the bottom of his shoe then touched his face. or touched a roll of toilet paper and touched his shirt. or because he touched a plant and ate something an hour later. or didn't wash his hands as long as it takes to say the alphabet (not always a great thing to teach a child to do). or because he smelled a funny smell or tasted a funny taste in his mouth. whatever. it is bad, and he is not coping well at all. and this has essentially come out of the blue (in a cruel coincidence, it started around the time that stress ball blew up in his mouth). it got so bad that one day, gus' worst day ever, he woke up at 3:30 in the morning and spent 12 straight hours asking me if he was going to be okay, going from thing to thing to thing to obsess over. then his teachers started calling home about gus' behavior at school...

finally, about a week ago, he decided his breakfast was poisoned and wouldn't eat. i called his pediatrician and she got me in touch with a behavioral psychologist who specializes in obsessive compulsive pediatric cases. she thought this might be severe OCD, but two things bothered her: his age (about 3 years younger than the typical OCD patient) and the suddeness of the onset. she mentioned that sometimes, rarely, but sometimes a strep infection can mimic OCD symptoms and that he should probably be tested with the understanding that it will probably be negative.

but it wasn't negative. read more tomorrow...

Monday, January 29, 2007

why PANDAS is evil, part one

the enemies.

this is the first of several posts about PANDAS and why it is evil. this is a long story, and unlike the paint chips one it actually has a beginning, a middle and (hopefully soon) an end. to set the scene, let us go back a few october gus' second worst day ever.

the day started off badly--gus wouldn't get dressed for school, wouldn't eat breakfast, and was just all around being difficult. he got to school late, which drives him crazy, so he ran from where i dropped him off to his classroom. as he got to the door he stumbled a little and hit his head on the adobe door frame. he went in the classroom, totally dazed, and his teacher sent him right off to the nurse, who in turn called me to come and get him because he was so nauseated and confused. i picked him up, took him to the doctor; she diagnosed him with a mild concussion and suggested that since he was there he should go ahead and get a flu shot.

he got the shot and we left as soon as he was done and got in the car to go to taco cabana next door for some lunch. while we were in line at the drive thru, gus started complaining that his arm was red. my best-mom-ever reaction was to tell him that everyone's arm is red at the site of an injection after they get a shot and to just get over it (i was a little frustrated at how the day was progressing). twenty minutes later we got home, sat down to eat lunch, and i looked at him: he was broken out in hives, head to toe. his arm was indeed red. and splotchy. and itchy. and then he said his tongue felt big and his sinuses were feeling swollen... i loaded gus up with benadryl, grabbed sophie and off we headed to the emergency room. 2 1/2 hours later we still had not seen a doctor (we saw a triage nurse for about 30 seconds when we got there) and we were sitting in a 6 x 15 foot room with more than a dozen other people. it was hell for everyone, especially because i was adding a screaming sophie to the environment. i was also adding an exposed me because sophie had to eat. gus learned a lot about human interactions that day...

rich eventually showed up after his clinic across town was over and saved us. he got him an epi-pen to keep on hand; gus stayed on a high dose of benadryl for about a week and amazingly was able to go to school and function (i would have been comatose on that much benadryl). now this is the important part: gus asked me once, maybe twice, throughout this whole ordeal if he was going to be okay. of course, thank god, he was.

fast forward to a few weeks ago, and join me tomorrow for part two...

Saturday, January 27, 2007

paint chips and easter eggs

thinking of iowa again--this time it is of our old neighbors, joaquin and marta (not their real names) and their oldest kid. even though gus' school was like two blocks away, i usually drove him because a) i was sick and pregnant and b) it was cold. REALLY cold. anyway, when we would pull out of the driveway i would look over at my neighbor's house and far too frequently see their 1-year old standing on the windowsill, pressed up against the glass and gnawing on the wooden frame. it was an odd sight and disconcerting--it was an older house and there is no question they had lead paint on that window. this child and his newborn brother both stayed at home all day with a nanny and, later, a manny, as both of the parents worked, and i told the nanny/manny that i was really concerned about his health...etc. the nanny, who quit not long after i talked to her (because the parents adopted another child and didn't give her a raise), did nothing; the manny was french and saw no reason for alarm. the parents couldn't be bothered--they were both perpetually one failed grant application away from unemployment. i can still see that child hanging there, swinging back and forth from his teeth in the window thinking, like sophie with the candy cane, mmm, sweet...

when we lived in houston this last time, i got so paranoid about whether or not gus had eaten any lead paint when we lived on dunstan that i took him to a harris county health clinic and had him tested--the tester called lead paint chips "ghetto m&ms." isn't that awful? i have no idea where i am going with this story, but now i can stop thinking about it. and, the story is the context for the easter 2006 pictures below:

i love that when we tell gus to get dressed to hunt for easter eggs he chooses this outfit



...pretty, pretty eggs...

maybe it's the skull on his shirt, but this has such an "alas poor yorick, i knew him [well]" quality.

Friday, January 26, 2007

sophie in orange

this was one of my favorite dresses for sophie, who looks quite fetching in orange. old pictures from august and october 2006:

rich: "i don't know what you are talking about--she's easy to go out to lunch with."


"i am the babymaster."

somehow this expression sums up sophie's reaction to her existence for the first few months

sophie: "who are you again?"

further proof that sophie looks good in orange; she was an organic carrot for halloween

Wednesday, January 24, 2007

the pop-up toadsters

i got yer pop-up toadsters for ya heh heh heh

i so wish i came up with that title on my own--it comes from a wonderful, inventive, intelligent children's book (that is currently gus' most requested) called "behold the bold umbrellaphant." the pop-up toadsters are gus' favorite. i found that book as i was leaving the library and checked it out for him without even looking through it because i loved the cover so much. you really can judge a book by its cover!!! god i am embarassed for myself for saying that. here is the amazon link if anyone is interested:

amazon site

gus also asked, politely, that i remind everyone that his birthday is coming up in a mere 7 weeks...

here are random pictures from last summer in iowa--gus has been talking about iowa a lot recently, and with all the snow and cold weather it kinda seems like we're still there. that and he and sophie never seem to want to wear a coat outside (iowa blood). enjoy!

this is possibly my favorite picture ever from a digital camera

does anyone know what this is? it used to live in our backyard. is it a groundhog? by the way, you can click on any of the pictures to blow them click away!

gus changing lizzie's diaper (note sophie's box in background)

the gusman

rich and gus after a bike ride/run to coldstone ice cream. they used to ride/run this fairly often, which is impressive considering it was about five miles away and gus was doing it on a two-wheeler at 5...brag brag brag (note the little kid looking enviously at gus' camelbak AND how close sophie's car seat is to the edge of the table--bad rich)

gus and a very tired and somewhat defeated-looking rich exhausted by a hard day of wearing sophie (good rich) in gus' old room

Tuesday, January 23, 2007

where sophie sleeps

sophie is not a great sleeper. part of that is just how she is--i truly believe some kids are just hardwired to sleep better than others--and part of that is her sleeping locales. when she was born, sophie slept in a box. or rather a glorified box that was lined with vinyl. one of my mom's good friends, who sadly died recently, slept in a dresser drawer in her parent's room for quite some time after she was born and became a tremendously successful woman in every sense of the word. so maybe sophie's box built some character. in any event, this is the dispiriting place where sophie used to sleep:

or, more commonly, like this (rich got smart and slept on the couch):

so as a consequence of the box sophie learned to sleep in the car (like most babies), which eliminated the need to put her in the box. however she couldn't avoid it altogether--she spent several weeks in her box on a hotel bed, as we moved when she was 6 weeks old. no pictures of this, because it was just too depressing. anyway, we tried to make up for it with her new room:

"welcome! this is my room!"

"this is my quilt. it has circles."

"this is my mobile. it has circles and a horse."

"my horse is a bit shy today--usually he has more to say."

"teething is harsh but thankfully i have this giant wooden teether."

"out now! tour is over!"

Monday, January 22, 2007

it's blue monday in england, but it's lovely here

happy birthday tracy!

sophie and her pretty godmother

Sunday, January 21, 2007

the golden locks

gus has decided he wants long hair. really long hair. i think the last time i cut it was when i was pregnant with sophie:

so the other day when i was randomly taking pictures of him, i caught something interesting in the background: rich looking longingly at gus' golden locks...

and gus seems somewhat pleased by this.

Friday, January 19, 2007

sophie's week

this has been a rough week for/with sophie--she cut her first two teeth within 72 hours of each other and she is not happy.

we have spent most of the week seeing her like this:

when she usually looks like this:

gus did his best to try and distract her:

but gave up and thought it might be best to teach her to watch pbs kids instead:

even sartorial matters didn't seem to distract her:

and rich's attempt to mesmerize her out of the pain just made her concerned (note gus running away):

so now we all must ride this out, and hopefully not overdose her on hyland's homeopathic teething tablets (is it wrong to give a baby percoset?).

Monday, January 15, 2007

two questions for which i have no answer

happy mlk day!

i was going to call this post "¿dónde es la madre de ellos?" as that would fit as well.

two questions: one question alarming--because it has been asked several times--and one not so much, but both are questions that i have no good answer for, and they always seem to pop up (regarding sophie) from younger female native new mexicans. the first one is, why aren't her ears pierced yet? my answer for this, which sounds completely lame, is that it isn't part of my culture (whatever the hell that may be) to pierce an infant's ears. i was nine when i got my first set of piercings and i think if she asks for it anytime after the age of five she can have it.

that isn't the alarming one--the alarming one, which i heard again today, is how old is your granddaughter? once, at kohl's, i even got the two together: "why aren't your granddaughter's ears pierced yet?" in many places, having a child at 38 isn't terribly uncommon--even my mother was a happy surprise to my grandmother at 40. but i live in a place where i am almost twice the age of the average first-time mother. the most incredible story i have ever heard about having children came from one of the movers who moved us in here--he saw sophie (who was then about 9 weeks old) and told me that he just had a son who was about her age. he was a young guy so i asked if it was his first and he and the other movers (his cousin and his uncle) started laughing and said was his seventh. he was 24 years old; he had his first child when he was 13 and his wife was 11. wow. and, as a really weird coincidence, his brother is one of rich's patients at UNM because he lost his eye in a car accident and his orbit can't hold a prosthetic eye properly.

anyway, while that is an extreme example, i really am closer to grandmother age here than not. so, today i thought i'd concentrate my pictures on just how cute my kiddos are and how little they look like their aged mother...(boo-hoo). it's those damned swedish genes--no wonder the vikings were so tenacious.

me smothering gus at school: some, but not too much resemblance.

me and gus in houston whilst enormously pregnant: not much resemblance.

little sophie and me: no resemblance.

side view: nope.

other side view: still nope.

two side profiles: nothing.

maybe when blurry there are some similarities...

Sunday, January 14, 2007

open space in the home

i was talking to a friend last night who is building his own home off the grid in the sandia mountains, and he asked what i thought the most important feature of a home should be. that was easy--open space. his response was that everyone wants open space in their homes but once they actually get it they call in a contractor to start closing it up. i told him we have lived in so many claustrophobia-inducing houses that were closed, low-ceilinged, and anything but open that i was fairly sure i wanted open space (he still doubts it, and he's a contractor so maybe he knows something i don't). the worst space we ever lived in was one that we owned (try to guess which one from the pics below), and all this led me to reflect on all the places we have lived since we met, in chronological order, and the fates of those structures:

*no picture*
garage apartment, del monte drive, houston, texas (no longer extant)

*no picture*
apartment, bissonet road, houston, texas (no longer extant)

*no picture*
apartment, carlisle street, dallas, texas (extant, but trust me it was bad)

*no picture*
apartment in quadroplex, bolsover road, houston, texas (no longer extant)

house, carlisle road, albuquerque, new mexico (extant, but note the shotgun spray pattern on the front wall next to the no war sign--that happened while i was at home. and, this picture makes the place look much better than it actually is)

*no picture*
tandem bicycle, 4000+ miles and 4 1/2 months, throughout europe, then many hotel rooms throughout iowa for 3 more months (i think this could be called glorified homelessness)

house, normandy drive, iowa city, iowa (extant yet thoroughly stripped, sanitized and somewhat dehumanized by its current owner)

house, dunstan road, houston, texas (no longer extant)

house, monte vista boulevard, albuquerque, new mexico (extant and totally different now)

house, woolf avenue, iowa city, iowa (extant and quite the same, i'm sure)

house in los ranchos de albuquerque, new mexico (obviously extant...)