Monday, December 19, 2005
In our attempt to qualify for aid from a state fund, we're required to present a letter from Ethan's doctor. A physican needs to explain his medical history, diagnosis, and any equipment needed. We asked Dr. AJ, Ethan's neurologist, to write it. Unlike some of his other specialists, he's local and has seen Ethan since birth.
I got the letter today. Ethan has - count 'em - four diagnoses. Among them were the usual: "Hearing Impairment", "Legally Blind", and "Seizure Disorder, probably secondary to Lennox Gastaut syndrome".
But this one had to be my favorite:
Cerebral palsy of the severe spastic quadriparetic type with microcephaly, severe mental retardation, cystic encephalomalacia, with probable periventricular leukomalacia with dystrophic intracerebral calcifications.
Um. Uh huh. Yup.
The scary thing? I know what most of those words mean. I can translate it into plain English if you'd like:
Spastic CP, small head, and severe mental retardation due to brain damage.
Plain and simple.
Unless you're a neurologist. 'Cause let's face it. If you've got the intelligence, time, and money to go to Brain Doctor School, you're going to use your BIG words.
I noticed a new bumper sticker on Jete's aunt's car this weekend. It read:
I thought it was odd, since her dog is a Brittany Spaniel. They're huge dog lovers, so I figured she might have gotten a second dog.
Then I got a little closer to the car, and noticed the drawing on the right hand side. It was the Pope.
I'll be honest. It took me a minute, but I finally figured it out. Pretty clever. Apparantly, there are all kinds of merchandising out there.
Those Catholics are a kooky bunch.
Posted by Mete at 2:54 PM
Wednesday, December 14, 2005
The Queens of Surprise and I got a new teammate a couple of months ago. But not just any old teammate. This one? Is a MAN.
As I may have mentioned before, I'm a feminist. I don't believe in any of that generalization crap that people - men and women - perpetuate, like "men make naturally better leaders than women" or "women are always catty to each other". I've worked with all kinds of men and women in the past, and I really think everyone is different. The quality of an employee has nothing to do with the reproductive organs they possess.
That being said, I've noticed a few nuances to having this particular male teammate compared to these particular female teammates:
- He doesn't have pregnancy on his mind 24/7. If I leave early because I have an upset stomach, he doesn't get all giggly and say "OOH! You aren't PREGNANT are you? Huh? Are you sure?! Are you sure?!" I don't know what the obsession is. Sometimes, it's just food poisoning. Honest.
- He doesn't get crazy jealous. If I happen to take a walk to the cafeteria with someone else, he doesn't get hurt and ask "Why didn't you ask me to go?" and then give me the silent treatment for the rest of the afternoon.
- He doesn't try to marry everyone else off. So far, he seems to realize that people are capable of running their own lives. Many of my coworkers are married, but bless those poor souls who are only dating, or - GASP - single. For some reason, their marital status always seems to work itself into the conversation with certain co-workers. "So are you seeing anyone?" "When are we going to meet your boy/girlfriend?" "When you going to tie the knot?!"
- He doesn't mind odors. Okay, this one is a bit gross. But honestly, do I need to hear about how "stinky" the bathroom is every. time. you use it? Men just seem to take for granted that bathrooms are a place for Bad Smells. For some reason, my female teammates think you are only supposed to use the bathroom to wash your hands and spray perfume about you. I know. It smells. And I know. IT WASN'T YOU. We get it. Can we stop talking about it now?
- He isn't obsessed with weight. He isn't constantly moaning about losing those "last five pounds" when he's a perfectly normal weight. He doesn't say "I'm so BLOATED that my pants hardly fit!" and then insist on proving it to me. And more importantly, when I'm eating a salad for lunch (as I do at least twice a week), he doesn't say, "OH! You're trying to be GOOD TODAY, aren't you! Good for you! I'll just move this candy out of your sight!" ARGHHH.
All in all, I've been very lucky with all of my teammates. We get along really well compared to some other teams I've worked with. And we'll get used to having a boy around. Eventually.
If nothing else, he's proved very helpful in one area: sheer height. He's over 6 feet tall. With the three of us under 5'5", he's been very helpful in reaching things on the top of the filing cabinets.
Posted by Mete at 10:59 PM
Okay, I admit it. I'm a math-geek, and all-around, I'm a pretty techie girl. But ... I don't own a scanner. I know! I know! The thing is, I'm great with software, but horrible when it comes to hardware.
Many thanks to T for stepping in and scanning Ethan's six-week picture so I could add it to the previous entry.
Hell, I'll add again it here too. I may be biased, but I think it's worth another look:
Posted by Mete at 12:15 PM
Wednesday, December 07, 2005
Ethan was finally home from the NICU. Even though he was a month old, we hadn't felt like "real" parents until he was under our roof day and night.
After returning dozens of phone calls, we settled in for our first night. We changed Ethan into one of the few preemie outfits we owned. At the hospital, they had supplied most of his clothing for the first few weeks. We hadn't known what sizes to get before he was born, and most of the Newborn sizes we owned were way too big.
We set the bassinet up right beside our bed and put him down to sleep. He whimpered and started to fuss a bit. We couldn't bear to hear him cry, and it didn't feel right to make him sleep in a box again after a month alone in the hospital. We brought him into the middle of the bed. Once he settled down, he slept soundly there between the two of us. We watched him for hours. It felt strange having him home, as if we were going to have to give him back any minute.
One thing we hadn't experienced while Ethan was in the NICU was the middle-of-the-night feedings. Every night we would leave the hospital and sleep in a baby-less house. Despite all the NICU stress, we were very well rested. But with him finally home, we were learning to endure the sleep withdrawal that first time parents experience. In a way, we adjusted better than other new parents might have. We would've rather been woken up a dozen times a night than to have him away from us again.
We rented a hospital grade pump so I could continue expressing milk for Ethan. Nightly feedings were particularly stressful, but Jete was a great partner. Even though he was working full time and I was still on maternity leave, he would get up for every feeding. He'd gather all the pump equipment together for me while I changed Ethan. Then he'd feed him a bottle of expressed milk while I pumped for the next meal. Afterwards, he'd wash all of the tubes and bottles while I had some quality time with Ethan. Finally, we'd all drift off to sleep for a couple of hours, only to repeat the process again.
It was an exhausting time for all of us. As the weeks went by, I started skipping one, then two of the middle-of-the-night pumpings. I could tell my milk was dwindling, but I was just so damn tired. It was starting to affect my emotional state as well. I felt like I was never allowed to spend any time with Ethan because I was so busy preparing for the next meal.
As a total photo freak, my visions of having a baby included having dozens of framed pictures all over the house. So when Ethan was 6 weeks old, I took him for his first "professional" photos. He was getting rounder and plumper and was so damn cute, I couldn't wait to show him off. I dressed him in a Peter Rabbit premie outfit, and was pleased to see it was starting to become snug on him. Sete and I pushed him around the mall, enjoying all the Oohs and Aahs of strangers. Ethan was unimpressed and slept the entire time, only waking up after the photo shoot had ended.
Moments like this, pretending we were a "normal" family, helped fill the time between unpleasant reminders of reality. Within a few days of his homecoming, Ethan already had dozens of appointments lined up. His Early Intervention coordinator came to the home when he was only a few days old and mapped out a plan for the next few months. In the beginning, he slept most of the day, so they would only see him every other week. We would adjust the frequency as he got bigger and more aware.
As a NICU baby, Ethan had to go to extra pediatrician appointments to make sure his weight was increasing. Thankfully, it was. Unfortunately, his head circumference was not increasing as it should have been, but his pediatrician was not surprised given all he'd been through.
Ethan had several appointments scheduled with specialists to follow up on his NICU care. One of his first appointments was with a Geneticist. Even though they had essentially ruled out a genetic cause to his problems, they needed to see him again just to make sure nothing had come to light as he got bigger. The Geneticist asked us dozens of questions about our family histories. He measured both Jete's and my head to see if they were of normal size. (I was surprised to learn that, despite the illusion that Jete's head is gigantic, we both have "normal" size heads.)
The doctor reviewed Ethan's bloodwork, the medical records from my pregnancy, and our family histories. After analyzing everything, he officially discharged Ethan from his care. We had it in writing: there was no genetic reason for what happened to Ethan.
We absorbed this news with mixed emotions. It would have been nice to have genetics to blame for all he had been through. But we also felt a glimmer of hope. Genetically, Ethan was "normal". Didn't that mean he had the potential to recover from the brain injury?
Unfortunately, our hopes would be dashed soon enough. In a few weeks, we had our first visit with Ethan's Neurologist, Dr. AJ. We would no longer be able to deny the truth about our son's brain.
NEXT: PART 14 - VERY GRIM INDEED
Hi. Yeah. I know what time it is. But it's lunchtime. I'm on a BREAK. Okay?
(Which makes me want to quote Patrick Swayze in Dirty Dancing: "She's taking a break. She needs a break." And then the annoying hotel guy Neil says, "Just as long as it's not an all night break."
What? You haven't memorized all of Dirty Dancing? Come on. "Nobody puts Baby in the corner." "I carried a watermelon." That's CLASSIC stuff.)
I guess I should warn you. I'm a little bit cranky today. Probably because, like my 20 month old STUBBORN MULE OF A SON (let's say SMOAS for short), I'm a bit tired.
Apparantly the SMOAS has decided that sleep isn't so important anymore. Eh. Who needs it when you can just play all night. Right? And then, you can fake people out like you're exhausted and cuddly and ready for bed. And for the added illusion, you wave to everyone as you go off to bed, like the Irish colleen on the St. Patrick's day float. Hello my people! Thank you all! Good night!
But oh, no. Then? You stand up in your crib. And you cry. And cry. And cry.
I'm guessing this is a phase. I don't know if it's separation anxiety, or if he's testing us, or if he's getting his wisdom teeth early. All I know is this: a month ago, he went to sleep like a champ. Bring him in his room, lay him down, give him his teddy bear, and boom. Off to sleep. Now? Not so much.
I shouldn't really complain. Jete's the one who's getting the brunt of it. He's taken it upon himself to lay with CG while he settles down. (To clarify - to anyone who, like my mother, thinks he climbs inside the crib - he lays on the FLOOR beside the crib.) Last night, it took over an hour. Then when CG woke crying again this morning at 5:30ish, Jete went in again.
It's like having a newborn all over again. Except for the temper tantrums. A 20-month-old can fling himself with a hell of a lot more force than a newborn. So don't piss him off.
Last week, CG had his Early Intervention evaluation to see if he qualifies for any services. You may recall I was concerned about his speech (or lack of speech, I suppose).
We had the whole crew there - PT, OT, ST, developmental specialists, and a coordinator. I found myself a little nervous. What would they think of him? Would he pass the tests? Maybe he is delayed in areas other than speech. I could be missing things. Compared to Ethan, he seems super-advanced. But how would he compare to where he should be?
I guess things would be different if we didn't have Ethan, but we do. I don't take anything for granted. I don't just assume my son is going to develop normally. I don't assume he's going to be of average intelligence, never mind go to college or any of that. Why would I? He can walk and see and hear. Those other things are bonuses, as far as I'm concerned. Anyone who expects their child to grow up and be a beauty queen while attending law school is setting themselves up for disappointment, if you ask me.
A lot of my friends and family thought I was being overly worried when I even wanted to consult a speech therapist. I can see what they mean. I tend to be a bit, um, ANXIOUS a lot of the time. A catastrophist, as my psychologist called me. Someone who employs "the prediction or expectation of cataclysmic upheaval, as in political or social developments". I always seem to assume the worst. So I admit, I've got a bit of a history with unnecessary freaking out.
But it still bothered me that everyone seemed to dismiss my concerns. They would listen to me and then say "He's FINE. Don't worry." But I wasn't "worrying" as much as I was recognizing that something was amiss. It's pretty cut and dry: he says no words, the charts say he should be. I thought I was being proactive. Taking control of my worries, instead of laying up nights, wondering if he'd ever learn to talk.
The tests went fine. He scored right on target with all areas except two. He was a little ahead of his age, about 25 months, on some of the social levels. He plays very independently, is open with strangers, and engages in a lot of pretend play. And while his receptive language level is normal, he did score behind on his expressive speech, at about a 12 month level. So he qualifies for speech therapy, probably to start sometime next year.
Was I happy he's speech delayed? No. But I was glad to hear that I'm not overracting. For once.
Posted by Mete at 12:47 PM
Friday, December 02, 2005
I don't understand how it can be December already.
The last thing I remember, it was early spring and we were preparing for Ethan's surgery. Then there were four blurry months where he was casted and upset most of the time. Month after month of just trying to keep him happy, a few minutes at a time. How could four miserable months go by so quickly?
I find it hard to believe the summer really happened. Where was I? There were no vacations. No day trips to the beach. Just more of the same - day after day of maintenance and appointments. Taking care of things at home, taking care of things at work, then back again.
I do remember autumn arriving - for about five minutes. Then it was cold and rainy for a month, followed by three inches of snow on Thanksgiving day.
And now, it's December. The year is over. Christmas cards have been arriving for days now. Only three weekends left to shop. And every one of them is booked with other obligations.
I guess this is a natural part of aging. When you're young, you never think about time passing. Summer vacation lasts forever. Christmas is always a million years away. But adults realize there's never enough time. It's the constant topic of conversation. People throw out meaningless sentiments like, "Is it Friday already?" "This year FLEW by!" "Where does the time go?"
I suppose I have to accept that I'm not a kid anymore, even if I am ridiculously immature at times. I'm 30. Ethan will be four next month. CG will be two soon. Judging by how quickly the first four years went, they'll be teenagers before I know it.
Might as well stop fighting it:
Where does the time go?
Posted by Mete at 7:58 AM