I can't believe it happened! The biggest, craziest, most insane statistical fluke that could ever happened has occurred! I am besides myself!
I received a phone call from my mother last night. We're from a small town, and usually identify ourselves by our County because at least maybe somebody has heard of THAT. People in our own state don't recognize the name of our teeny, tiny little towns! Well, while Mom was at work, she started talking to somebody who lives just ten miles away from where I grew up, and this person has a child a year younger than Niko with Williams! My mother, bless her heart, flew over to her desk and came back with a picture of Niko. "My grandson has Williams!" she said. The girl was shocked. Mom was shocked. I was shocked! Just think! This obscure little syndrome that nobody has ever heard of...has struck twice in the same area! I'm thrilled. I hope we have a chance to hook up at some point and talk about some of the things that our fabulous kids are going through. Does her child have heart problems? Hypercalcemia? She and my mother already established her child's pointy teeth and tendency to bite. I called Mom up this morning and asked her to suggest what we call the Anti-Bite necklace. It's a thick cord that Niko wears around his neck with a teething toy on it like a pendant. That way he always has something to chew...besides the tender flesh of others. This is cloud nine, people. This gives me much hope.
Monday, October 23, 2006
Friday, October 13, 2006
Murphy's Law
Well, we moved in a flurry of frenzied activity in July. And after living in FOUR hotels and THREE apartments, we have finally committed, at least for ten months, to the tiny, ancient little apartment that we're living in now. Our dishes don't fit in the narrow cupboards. The first time I did laundry the dryer scorched holes in our clothes. The toilet automatically flushes itself about once an hour...very disconcerting. But we're here, and I think we'll be happy, and Luke loves his new, mysterious job. He comes home just beaming. Niko and I...not so much. We're still traversing through towers of half-packed boxes, trying in vain to find things like my address book, Niko's toys...our telephone. But we're making headway every day, and this Sunday we'll go to our new church for the first time and hopefully hook in with some buddies. It's killing Niko not to have our friends fawn all over him. He runs up to every effeminate guy he sees, thinking it's Jason, but alas! He's a lone boy with nobody but Mommy and Daddy for company, and even three year olds know that's not cool! I'm trying desperately to get him into a hospital (losing weight, gagging on familiar foods, scratching himself bloody) but it's not working yet. I'm also girding up my loins to start the Preschool Crusade again, but I don't think I'm mentally strong enough yet! The good news is that I signed up for a creative writing course, which I'm thrilled about. I've been doing quite a bit of writing lately, and it feels great. I also signed up for NaNoWriMo...that's National Novel Writing Month, for those of you sane enough not to know what it is. You know me and a challenge. 50,000 words in a month? Heck ya!
Saturday, August 12, 2006
We're outta here!
Hey! We moved! Once Luke got the offer, we took off incredibly fast. Now we're in a new place, getting settled in. We're having a fabulous time thus far! Though I can tell Niko misses his old friends. Especially Marilyn and Jason. He runs to everybody that looks even remotely like them, and holds out his arms to be picked up. He has absolutely no fear of strangers. He takes the hands of anybody close enough to grab. Which is okay, I think. Almost everybody seems happy to have a smiley little boy trying to hug them. But of course I keep an extremely close eye on him. You can't work at some of the places that I have and not suspect the worst in people.
Ode to the Hospital
June 1
How time flies. When I was a kid, June meant EVERYTHING. The beginning of summer, the end of school, long days playing out in the yard. Now I'm like, "Oh, is it June?" Waiting for Niko's bus again. This is the way to do it, with my trusty journal by my side! Catch up and enjoy being outside at the same time. Luke applied for a job in a different city, and chances look pretty good that he'll get it. Today I went to the hospital to pick up Niko's meds, and I kind of took a look around. I thought, "Hmmm, one of these days, one of these trips might be my last." The murals on the walls and the animal statues...they're so familiar! This hospital is just as much a part of Niko's life as church, or his developmental school, or the playground. When you anticipate your child's life experiences, you don't usually think of hospital walls, but sometimes that's the way it is. These people have made a big difference in our lives. You just can't forget that.
How time flies. When I was a kid, June meant EVERYTHING. The beginning of summer, the end of school, long days playing out in the yard. Now I'm like, "Oh, is it June?" Waiting for Niko's bus again. This is the way to do it, with my trusty journal by my side! Catch up and enjoy being outside at the same time. Luke applied for a job in a different city, and chances look pretty good that he'll get it. Today I went to the hospital to pick up Niko's meds, and I kind of took a look around. I thought, "Hmmm, one of these days, one of these trips might be my last." The murals on the walls and the animal statues...they're so familiar! This hospital is just as much a part of Niko's life as church, or his developmental school, or the playground. When you anticipate your child's life experiences, you don't usually think of hospital walls, but sometimes that's the way it is. These people have made a big difference in our lives. You just can't forget that.
Nikolai on the Bus
May 30
I'm sitting on our steep stone steps in the sun. The best part, though, is that I'm our here waiting for Niko to come home ON THE BUS. I drove him in and out for about a week. Then one day I left my car at his school and rode home on the bus with him. He held onto me with both hands and screamed for about ten minutes. That night a neighbor drove me back to pick up my car. The next day we did it again. He held on with one hand and screamed for about two minutes. Next time, my Dad was here. I hid and watched, and Dad rode with Niko. We did that a few more times, and then we both hid and watched the teachers put Niko on the bus alone. (Well, except for Cookie Monster, of course!) As soon as the bus took off, Dad and I zipped home in the car and greeted Niko at his triumphant return! Now Niko does it all by himself without any problems, and I'm happy and proud of him. It gives me 40 more minutes that I'm not driving him in and out to his school, which agreed to keep him until the end of the summer. What a relief.
I'm sitting on our steep stone steps in the sun. The best part, though, is that I'm our here waiting for Niko to come home ON THE BUS. I drove him in and out for about a week. Then one day I left my car at his school and rode home on the bus with him. He held onto me with both hands and screamed for about ten minutes. That night a neighbor drove me back to pick up my car. The next day we did it again. He held on with one hand and screamed for about two minutes. Next time, my Dad was here. I hid and watched, and Dad rode with Niko. We did that a few more times, and then we both hid and watched the teachers put Niko on the bus alone. (Well, except for Cookie Monster, of course!) As soon as the bus took off, Dad and I zipped home in the car and greeted Niko at his triumphant return! Now Niko does it all by himself without any problems, and I'm happy and proud of him. It gives me 40 more minutes that I'm not driving him in and out to his school, which agreed to keep him until the end of the summer. What a relief.
Foppish Cocktail Parties
May 10
Niko's third birthday party went well. The cake was, of course, a marvelously designed masterpiece. Luke's a natural. Preppy clothes were given to us by family, fun things from our friends. Niko pinwheeled around the room like a giddy, slightly drunken host at a foppish cocktail party. He is a very loved little boy. Pinwheel all you like, son.
Preschool is another matter. After multiple scheduled and rescheduled appointments, we finally found a school. (Most schools felt they weren't a good fit for Niko.) His first day at his new school, he had a complete meltdown and screamed for two hours. The teacher called and asked me to come pick up my son, and that she didn't think this school was right for him. I'm at wit's end.
Niko's third birthday party went well. The cake was, of course, a marvelously designed masterpiece. Luke's a natural. Preppy clothes were given to us by family, fun things from our friends. Niko pinwheeled around the room like a giddy, slightly drunken host at a foppish cocktail party. He is a very loved little boy. Pinwheel all you like, son.
Preschool is another matter. After multiple scheduled and rescheduled appointments, we finally found a school. (Most schools felt they weren't a good fit for Niko.) His first day at his new school, he had a complete meltdown and screamed for two hours. The teacher called and asked me to come pick up my son, and that she didn't think this school was right for him. I'm at wit's end.
Monday, April 17, 2006
The Note Pinned to my Son's Back
Remember in kindergarten when the teacher would pin notes to your back so your parents would be sure to get them? This poem was inspired by a walk around the lake with Marilyn.
The Note Pinned To My Son’s Back
In case of emergency, please take me with you. I am almost two years old. I can’t have calcium. The vein on my right arm looks like a great one, but really it’s a roller. Please inform the phlebotomist.
I love my Cookie Monster. I like to lay on him and make him laugh. I like to bite his fur off. I like to shake him and knock his eyes against my forehead. I like to have my arms around him when I sleep.
I still put things in my mouth. I like to lick noses. When I’m angry, sing David Bowie songs to me and dance a little bit. Maybe I will laugh.
I need five doses of medicine a day. I will brush my own teeth. I love things that spin. I always keep my eyes open during prayer. I can clap my hands. I can snort. I think that’s how people communicate.
I can crawl. I wear corrective booties to keep my bones aligned. I can’t talk. I can’t walk. I can’t run.
So in case of emergency, please take me with you.
The Note Pinned To My Son’s Back
In case of emergency, please take me with you. I am almost two years old. I can’t have calcium. The vein on my right arm looks like a great one, but really it’s a roller. Please inform the phlebotomist.
I love my Cookie Monster. I like to lay on him and make him laugh. I like to bite his fur off. I like to shake him and knock his eyes against my forehead. I like to have my arms around him when I sleep.
I still put things in my mouth. I like to lick noses. When I’m angry, sing David Bowie songs to me and dance a little bit. Maybe I will laugh.
I need five doses of medicine a day. I will brush my own teeth. I love things that spin. I always keep my eyes open during prayer. I can clap my hands. I can snort. I think that’s how people communicate.
I can crawl. I wear corrective booties to keep my bones aligned. I can’t talk. I can’t walk. I can’t run.
So in case of emergency, please take me with you.
Ghosts of the Past and Present
Niko and I went home to see the family for a few weeks. I saw people that I haven't seen in years, some who read this blog (hi, Em and Sue!) and others that didn't know anything was up with my son, or that I had a son, or even that I was married. It's always so strange to go home, and see the places that I grew up. I have changed so much since then! I see the old back trails where I used to ride my bike, or the Coal Haul Road where my inseparable friend, '80, and I used to walk and talk. She died a few years ago, quite suddenly, and it always especially hurts to see the things that remind me of her, which is pretty much everything. I thought of all the jokes that nobody else would ever get, because they were between '80 and I. Has it ever occurred to you that when you keep a joke between just two people, when one of them leaves, that hilarious and witty thing that you used to giggle about just decays into a rotted powder. It's never funny again. Much better to have a third person in on it, so that there will be somebody who can keep it alive with you. Thank goodness Feathers was in on so many...they still glitter whenever I talk to him.
Anyway, time for a little Niko progress report! He is doing really, really well, maybe better than I ever thought I'd see. He'll be three soon, and transfer out of his birth to three program into preschool. It's a challenge finding one that works, really. I find that I have to fight for every little thing. I see the risk of a school taking a child with such a extensive medical history, but he is a little boy and deserves to be accepted and taught just like everybody else. We put the new pattibobs (shoe inserts) into his shoes, and his left leg stopped turning out almost immediately. I think it will really help him. He's very vocal! No words, yet, but definite growls, buzzes, sounds for "yes", etc. Even without words, he manages to make most of his wishes known. His meds are down to two 2ml doses of propranol a day, and 1.8 ml of Ferrus Sulfate. No Zantac! He's been off of that for two or three months now. He drinks three bottles of cow's milk a day, and we're working on Sippy Cups. He'll take a quick sip or two now, instead of rejecting them immediately. He still prefers purees for dinner, but will eat off of our plates. He loves to play on the piano, carefully with only one finger instead of banging with his hands like most kids. He can work an accordian. He knows that if he hands us a flute, recorder, or a harmonica, something magical will happen, but he won't blow on them himself. (I finally tossed the kazoos. Who honestly wants to be handed a kazoo a million times a day?!) Niko's getting really tall, much taller than the average William's kid. Ha ha! Those are MY genes coming into play, I think. He's still very affectionate. He still sleeps with his arm around Cookie. He's (mostly) stopped biting people. He is pulling his "I'm in charge here!" Tsar Nikolai persona more and more often. That always makes me smile.
Anyway, time for a little Niko progress report! He is doing really, really well, maybe better than I ever thought I'd see. He'll be three soon, and transfer out of his birth to three program into preschool. It's a challenge finding one that works, really. I find that I have to fight for every little thing. I see the risk of a school taking a child with such a extensive medical history, but he is a little boy and deserves to be accepted and taught just like everybody else. We put the new pattibobs (shoe inserts) into his shoes, and his left leg stopped turning out almost immediately. I think it will really help him. He's very vocal! No words, yet, but definite growls, buzzes, sounds for "yes", etc. Even without words, he manages to make most of his wishes known. His meds are down to two 2ml doses of propranol a day, and 1.8 ml of Ferrus Sulfate. No Zantac! He's been off of that for two or three months now. He drinks three bottles of cow's milk a day, and we're working on Sippy Cups. He'll take a quick sip or two now, instead of rejecting them immediately. He still prefers purees for dinner, but will eat off of our plates. He loves to play on the piano, carefully with only one finger instead of banging with his hands like most kids. He can work an accordian. He knows that if he hands us a flute, recorder, or a harmonica, something magical will happen, but he won't blow on them himself. (I finally tossed the kazoos. Who honestly wants to be handed a kazoo a million times a day?!) Niko's getting really tall, much taller than the average William's kid. Ha ha! Those are MY genes coming into play, I think. He's still very affectionate. He still sleeps with his arm around Cookie. He's (mostly) stopped biting people. He is pulling his "I'm in charge here!" Tsar Nikolai persona more and more often. That always makes me smile.
Thursday, March 23, 2006
All's Well With the World
You know those days when all is well with the world? Well, today is one of those days. Niko turns three soon, so we're doing that exhausting search for the right preschool. I'm not one of those die-hards that think if he doesn't get in the right preschool, that will screw up his chance for elementary, middle school, high school, and college. But I don't want the teachers to hang from the chandelier and set themselves on fire, as teachers are wont to do, so I am told. So we're looking. Appointments and phone calls and emails...blah. But today. Ah, today, I blew all of that off. I gave myself five phone calls to make, and when that was done, I bundled up my giggling little boy and we had a grand morning of it. I dressed up, and Niko looked debonair. We ran errands, rode in carts, touched all the soft and slightly crispy fabrics in the craft store. I bought jewelry making supplies and a yard and a half of beautiful black and white fabric for a skirt. Everything was funny. Every move I made was fascinating, every expression he made was adorable, every song was the best one ever sung. I lifted him into the car, snuggled him, and told him that his company was a pleasure. I called my parents to tell them what a great day it was. Niko sat in his high chair, giggling as I hemmed my new skirt, and looked properly appreciative (so I thought) when I showed it off. Marilyn and Jason came over to watch America's Next Top Model and we laughed and booed at the TV and begged Nikolai not to turn it off. Then we all sang to him, prayed, and put him to bed. Tomorrow, of course, it's back to the grind. Wake up, go to Niko's school. Purchase his new shoe inserts...he's out of the corrective boots but still needs a little extra help for alignment.` Snacks are always a pain...I hold up a chart with pictures, and he takes the one of the snack he wants, hands it to me, and then I hand him the goldfish cracker, or the piece of toast, or the bottle. Both physical therapy and speech therapy. But tomorrow night, I'll go for a good, three mile run. I'll listen to Russian pop (great beat) and heavy guitar driven alternative, and I will run run run until everything is great again, and I'll have this wonderful feeling, that all's well with the world, just like how I feel today.
Monday, March 13, 2006
Choking
January 27, 2006
Niko's screaming bloody murder in his crib. He has reason to, because we had a really scary experience today. While at his school, during snack time, I was fixing Niko's milk (real milk!)when his therapist called my name. I looked, and Niko's face was really red, and his throat was moving, but there was absolutely no sound. It was like watching somebody throw a fit in mute, bizarre and terrifying. I ran over to him, pulled him out of his chair and held him around his stomach, legs dangling. He threw up, and started to cry, so Heather and I stripped him down and I cuddled him while he put his head on my shoulder and just sobbed. Poor little scared Niko...we dressed him in some clothes donated to the school and cuddled until he perked up and was interested in his surroundings again. He was choking on a goldfish cracker, same cracker that he loves and eats every day. Part of me wants to throw my hands up in the air because everything seems like you take two steps forward and then one or two or three steps back. But we have worked too long, too hard, and with such love that I refuse to lose him, especially to something as lame as choking. No, this boy will have a long, happy, and fulfilling life, filled with friendly faces, music, and so much love that he can just bask in it, even if I have to provide it by sheer force of will. And that's simply the way it's going to be.
Niko's screaming bloody murder in his crib. He has reason to, because we had a really scary experience today. While at his school, during snack time, I was fixing Niko's milk (real milk!)when his therapist called my name. I looked, and Niko's face was really red, and his throat was moving, but there was absolutely no sound. It was like watching somebody throw a fit in mute, bizarre and terrifying. I ran over to him, pulled him out of his chair and held him around his stomach, legs dangling. He threw up, and started to cry, so Heather and I stripped him down and I cuddled him while he put his head on my shoulder and just sobbed. Poor little scared Niko...we dressed him in some clothes donated to the school and cuddled until he perked up and was interested in his surroundings again. He was choking on a goldfish cracker, same cracker that he loves and eats every day. Part of me wants to throw my hands up in the air because everything seems like you take two steps forward and then one or two or three steps back. But we have worked too long, too hard, and with such love that I refuse to lose him, especially to something as lame as choking. No, this boy will have a long, happy, and fulfilling life, filled with friendly faces, music, and so much love that he can just bask in it, even if I have to provide it by sheer force of will. And that's simply the way it's going to be.
Diet Coke and Wine
So the Mom's group is going well. Because we started it, it's completely tailored to us and our needs. Which was obvious when a member brought a bottle of wine to the last meeting. I laughed along with everybody else when she flamboyantly uncorked it, but at the same time I completely understand. Sometimes things get very dark. Sometimes the conversations are very grim. So you can either toast with your wine and laugh, or gulp it down and hold out your glass for more. I do the same thing with my Diet Coke. I think being the parent of a special needs child is a lot like being bipolar...the ups are very, very up, and the lows are lower than you could ever imagine possible. Prepare for either.
Yes! Good news on Nikolai-my-little-guy! His labs looked good, and his heart looked even better. The aorta, although still small, is growing. The two pulmonary obstructions have lessened, and there is absolutely no more thickening of the left ventricle. She decreased the propranolol dosage by three cc's a day, and we're all happy!
Yes! Good news on Nikolai-my-little-guy! His labs looked good, and his heart looked even better. The aorta, although still small, is growing. The two pulmonary obstructions have lessened, and there is absolutely no more thickening of the left ventricle. She decreased the propranolol dosage by three cc's a day, and we're all happy!
Cement Steps
January 8, 2006
Lying in bed in that oh-so-familiar stage...I'm tired and know that I should go to sleep,but at the same time I want to stay up. I want to read or write or play Radiata Stories or look at a magazine. Something quiet while this house is still mine. What if I miss something? When I go to sleep, it just brings me screamingly close to that horrible moment of waking up to Niko's cries or the alarm. Worst part of the day.
A week ago I turned my ankle while walking down our steep, cement steps. I was carrying Niko, who still can't climb stairs, and my ankle rolled. I grabbed the handrail with my free hand, totally slamming into it with that arm. The area from my wrist to my elbow just throbbed. Niko was completely okay, and in fact, giggled pretty wildly. He keeps everything in perspective. My ankle was sore for a few days, felt better, and is aching again. Running, maybe? It keeps popping.
So tomorrow, after running and Niko's school, we got to the hospital to pick up meds, get labs, and do an unsedated heart echo. I'm dreading the long, painful day, with a very sleepy Niko being restrained and echoed and pricked, but I'm hoping there's more good news. Last time it was all wonderful, and a girl could get used to hearing happy things about her son.
Lying in bed in that oh-so-familiar stage...I'm tired and know that I should go to sleep,but at the same time I want to stay up. I want to read or write or play Radiata Stories or look at a magazine. Something quiet while this house is still mine. What if I miss something? When I go to sleep, it just brings me screamingly close to that horrible moment of waking up to Niko's cries or the alarm. Worst part of the day.
A week ago I turned my ankle while walking down our steep, cement steps. I was carrying Niko, who still can't climb stairs, and my ankle rolled. I grabbed the handrail with my free hand, totally slamming into it with that arm. The area from my wrist to my elbow just throbbed. Niko was completely okay, and in fact, giggled pretty wildly. He keeps everything in perspective. My ankle was sore for a few days, felt better, and is aching again. Running, maybe? It keeps popping.
So tomorrow, after running and Niko's school, we got to the hospital to pick up meds, get labs, and do an unsedated heart echo. I'm dreading the long, painful day, with a very sleepy Niko being restrained and echoed and pricked, but I'm hoping there's more good news. Last time it was all wonderful, and a girl could get used to hearing happy things about her son.
Mini-Triathlon
January 6, 2006
So last night I signed up for a mini-triathlon. Now I'm committed! It's a 5K run, quarter mile swim and 12 mile bike ride. I've been running three times a week, and Luke fixing the MP3 player has made a WORLD of difference. Last night I bounded along to Modest Mouse singing, "We'll all float on okay." Finally, I feel like I'm out there running toward something instead of running away from...whatever it is. It's a good feeling.
So last night I signed up for a mini-triathlon. Now I'm committed! It's a 5K run, quarter mile swim and 12 mile bike ride. I've been running three times a week, and Luke fixing the MP3 player has made a WORLD of difference. Last night I bounded along to Modest Mouse singing, "We'll all float on okay." Finally, I feel like I'm out there running toward something instead of running away from...whatever it is. It's a good feeling.
Drink cow's milk, boy!
January 4, 2006
Niko looks like he's been stretched on a taffy machine. Grown two inches since September, and he's currently in his long, lean phase. He's been giving things for help (handing us jars to open, toys that he wants to work) and the doctors said the thing that I almost thought I'd never hear: "Put that boy on cow's milk!" We'll check his labs in a week or two, and see how his body handles it.
Niko looks like he's been stretched on a taffy machine. Grown two inches since September, and he's currently in his long, lean phase. He's been giving things for help (handing us jars to open, toys that he wants to work) and the doctors said the thing that I almost thought I'd never hear: "Put that boy on cow's milk!" We'll check his labs in a week or two, and see how his body handles it.
Sick Moms = Happy Nikos
October 23, 2005
Do you know what happens when you run yourself insanely ragged and you don't get enough sleep? You get sick. At inopportune times. So Luke left on Thursday to fly home for the deer hunt. I got a sore throat and stuffy head that night, really felt it on Friday, absolutely considered myself dead on Saturday, started to reanimate on Sunday and by Monday I was almost all better, just in time to pick Luke up at the airport. Which wouldn't be too bad, this being sick, except that I HAD NIKO. Let me just say that I'm very proud of my ability to clack all of my dead bones together and force myself to dress Niko, feed Niko...play with Niko and brush his teeth and read him stories and calm his crying in the night. He's been waking up three or four times a night every night lately. My eyes feel like shattered glass all of the time.
So apparently I'm starting (or co-starting) a support group for Mom's with disabled kids. Our first meeting is Tuesday, at my house. We'll see how it goes. Do I really have the time for this? But then, what else takes priority over my son?
Do you know what happens when you run yourself insanely ragged and you don't get enough sleep? You get sick. At inopportune times. So Luke left on Thursday to fly home for the deer hunt. I got a sore throat and stuffy head that night, really felt it on Friday, absolutely considered myself dead on Saturday, started to reanimate on Sunday and by Monday I was almost all better, just in time to pick Luke up at the airport. Which wouldn't be too bad, this being sick, except that I HAD NIKO. Let me just say that I'm very proud of my ability to clack all of my dead bones together and force myself to dress Niko, feed Niko...play with Niko and brush his teeth and read him stories and calm his crying in the night. He's been waking up three or four times a night every night lately. My eyes feel like shattered glass all of the time.
So apparently I'm starting (or co-starting) a support group for Mom's with disabled kids. Our first meeting is Tuesday, at my house. We'll see how it goes. Do I really have the time for this? But then, what else takes priority over my son?
Saturday, September 03, 2005
Surgery
I have had two migraines this week. One on Sunday, all day, which totally sucked, of course. It hovered around, never really going away, until Thursday, when WHACK! WHAM! POW! I was flattened. Luke came home and I was a wreck. And worried, because I needed to hold up for Niko's SURGERY on Friday! We needed to go downtown to the hospital (not Childrens) so the doctor could pop open Niko's blocked tear ducts. Luke worked, so I took Niko by myself. Nothing to eat or drink before, so I was afraid Niko would be starving and emotional. So Marilyn and Jason came over and the men gave Niko a blessing, and me one, as well. It helped.
So anyway, we went, and Niko did amazingly. He played with the other kids in pre-op, and I put on a gown and a hairnet and went in with him while he was anesthetized. (He was in love with the anesthesiologist...he asked our general health questions with Niko sitting on his knee gazing with unabashed love into his eyes.) Niko screamed, which I told them to expect, so I sang to him and knew that every scream meant a big mouthful of gas. He was asleep pretty quickly. His tear ducts passageways were too small, so instead of using a blunt metal wire to pop open any membranes obstructing the passages, they ended up using little balloons to open the passageway. Pretty smooth...20 minutes in and out. The surgeon said to expect some bleeding from the eyes, nose, and mouth (because the tears run into the back of the nose and into the mouth), but it should be minor and pretty much one or two days only. So Niko woke up, was cranky, ate some, cuddled some, played some, and we were out of there. Five hours start to finish.
He did bleed out of his eyes, nose, and mouth, and even though I expected it, it was extremely disconcerting. But the bleeding has stopped and he's completely back to his old self again.
The surgeon himself called last night just to see how Niko was doing and to ask if I had any questions. I thought that was above and beyond the call of duty, and I'm sending him a thank you card for that!
So anyway, we went, and Niko did amazingly. He played with the other kids in pre-op, and I put on a gown and a hairnet and went in with him while he was anesthetized. (He was in love with the anesthesiologist...he asked our general health questions with Niko sitting on his knee gazing with unabashed love into his eyes.) Niko screamed, which I told them to expect, so I sang to him and knew that every scream meant a big mouthful of gas. He was asleep pretty quickly. His tear ducts passageways were too small, so instead of using a blunt metal wire to pop open any membranes obstructing the passages, they ended up using little balloons to open the passageway. Pretty smooth...20 minutes in and out. The surgeon said to expect some bleeding from the eyes, nose, and mouth (because the tears run into the back of the nose and into the mouth), but it should be minor and pretty much one or two days only. So Niko woke up, was cranky, ate some, cuddled some, played some, and we were out of there. Five hours start to finish.
He did bleed out of his eyes, nose, and mouth, and even though I expected it, it was extremely disconcerting. But the bleeding has stopped and he's completely back to his old self again.
The surgeon himself called last night just to see how Niko was doing and to ask if I had any questions. I thought that was above and beyond the call of duty, and I'm sending him a thank you card for that!
Calcium and Early Katrina
Journal Entry August 18, 2005
Niko's walking a little more day by day, which is great. His muscle tone is really improving. Everybody misjudges his age by a year, guessing that he's one year old. Time for another blood test, which we only have to get quarterly now. I thought his calcium level would be sky high, since he hasn't had his infusion in a year, and he's eating more foods with calcium. Still not dairy, of course, but the occasional pancake. But the labs came back completely normal, and I was shocked. And very, very happy. It seems like his hypercalcemia is slowly going away, that he truly is growing out of it like we had hoped. I still monitor calcium like crazy. Watching the solids he eats (more and more every week, but he definitely has his favorites and sticks to them religiously) and checking out his baby food jars with a vengeance. He snacks on cereal now (10% calcium a serving) when that never would have happened before. It's
wonderful.
Niko has also turned into a walking fool, staggering hither and yon. Last night Luke held Niko's hand and together they toddled down the hall to bed. (Well, maybe the little one did slightly more toddling.) I know that almost every parent is entranced by what their child can do. But I also feel that Luke and I seem to appreciate Niko's accomplishments more than usual, because we had to wait so very long for them. We're still waiting for Niko's first word. A "mama" would bowl me over.
Hurricane Katrina took out New Orleans. It's absolutely devastated. How many entries like this am I going to end up writing?
Niko's walking a little more day by day, which is great. His muscle tone is really improving. Everybody misjudges his age by a year, guessing that he's one year old. Time for another blood test, which we only have to get quarterly now. I thought his calcium level would be sky high, since he hasn't had his infusion in a year, and he's eating more foods with calcium. Still not dairy, of course, but the occasional pancake. But the labs came back completely normal, and I was shocked. And very, very happy. It seems like his hypercalcemia is slowly going away, that he truly is growing out of it like we had hoped. I still monitor calcium like crazy. Watching the solids he eats (more and more every week, but he definitely has his favorites and sticks to them religiously) and checking out his baby food jars with a vengeance. He snacks on cereal now (10% calcium a serving) when that never would have happened before. It's
wonderful.
Niko has also turned into a walking fool, staggering hither and yon. Last night Luke held Niko's hand and together they toddled down the hall to bed. (Well, maybe the little one did slightly more toddling.) I know that almost every parent is entranced by what their child can do. But I also feel that Luke and I seem to appreciate Niko's accomplishments more than usual, because we had to wait so very long for them. We're still waiting for Niko's first word. A "mama" would bowl me over.
Hurricane Katrina took out New Orleans. It's absolutely devastated. How many entries like this am I going to end up writing?
First Steps
Journal Entry, July 24, 2005
We're down in Luke's hometown for family reunions. While visiting everybody, Niko took his first steps! He kind of hunkered down and took three quick steps before falling. The cabin erupted into applause. We were so proud! Tonight Luke's cousins were over, and Niko was in fine form. He spun, did downward dog, laughed, bounced, crawled, chased, stood, flirted, rolled balls, balanced, crawled in laps, tried to bite, walked on his knees, waved, did "You're A Winner", clapped his hands, ate pillows...you name it. He was the life of the party, all eyes on him, and he totally worked the audience. It was one of the funniest things I had ever seen. He was so conscious of everybody paying attention to him. That night he collapsed in bed, weary from the show. What an entertainer.
We're down in Luke's hometown for family reunions. While visiting everybody, Niko took his first steps! He kind of hunkered down and took three quick steps before falling. The cabin erupted into applause. We were so proud! Tonight Luke's cousins were over, and Niko was in fine form. He spun, did downward dog, laughed, bounced, crawled, chased, stood, flirted, rolled balls, balanced, crawled in laps, tried to bite, walked on his knees, waved, did "You're A Winner", clapped his hands, ate pillows...you name it. He was the life of the party, all eyes on him, and he totally worked the audience. It was one of the funniest things I had ever seen. He was so conscious of everybody paying attention to him. That night he collapsed in bed, weary from the show. What an entertainer.
Wednesday, August 31, 2005
Time Out For Me
Journal Entry May 23, 2005
I wrote a poem two days ago. I worked on the blog. I found my old "Scent of Gravity" notes and want to turn it into a short story, maybe possibly expand it later. I am on freakin' fire!
The adrenaline, the twitchiness, the crabbiness until I'm writing...like a caffeine rush at 3:00 AM. I'd flippin' forgot this feeling!
Luke and Nikolai are probably both snoozing away at Ensign Ranch. I, myself, had a fabulous night, despite being perturbed at being stranded without a car on my ONE NIGHT A YEAR!!! Grrrrr....sigh. Anyway, Marilyn picked me up and we watched "Hedwig and the Angry Inch". The she fell asleep on the couch and Jason dropped me off at home. I've been roaming around for hours now, and it is so very nice to be alone.
I wrote a poem two days ago. I worked on the blog. I found my old "Scent of Gravity" notes and want to turn it into a short story, maybe possibly expand it later. I am on freakin' fire!
The adrenaline, the twitchiness, the crabbiness until I'm writing...like a caffeine rush at 3:00 AM. I'd flippin' forgot this feeling!
Luke and Nikolai are probably both snoozing away at Ensign Ranch. I, myself, had a fabulous night, despite being perturbed at being stranded without a car on my ONE NIGHT A YEAR!!! Grrrrr....sigh. Anyway, Marilyn picked me up and we watched "Hedwig and the Angry Inch". The she fell asleep on the couch and Jason dropped me off at home. I've been roaming around for hours now, and it is so very nice to be alone.
Second Birthday
Journal Entry, May 2, 2005
Niko's birthday was not too long ago...two years old! The best part was that Mom and Dad came up. They could only stay two days but they were so fun and so helpful. Mom swept the floor and Dad mopped, and they both changed and spoiled Niko, and thereby spoiled me.
The party was fun. All of our friends came. They brought Cookies (for the Cookie Monster party) and Niko, of course, reveled in the attention. A room full of people who genuinely love my son. Luke took a video and Jason held Niko and helped him blow out the candles on the cake...who's the parent here, anyway?! I thought it was pretty funny. Luke made the Cookie Monster cake, and the first thing Niko did was pull off and suck on one of the googly eyes. He sat in his high chair and ate fistfuls of cake. I just kind of stood back and watched him, remembering his birthday last year and how he choked immediately on the cake, throwing it up. Mom put her arm around me and looked at me, and I could tell that she remembered the same thing. After all, she helped bathe him and change him into clean clothes after the last cake "fiasco". We looked back at Niko and both started to laugh. Really, things can't get too much better than this.
Niko's birthday was not too long ago...two years old! The best part was that Mom and Dad came up. They could only stay two days but they were so fun and so helpful. Mom swept the floor and Dad mopped, and they both changed and spoiled Niko, and thereby spoiled me.
The party was fun. All of our friends came. They brought Cookies (for the Cookie Monster party) and Niko, of course, reveled in the attention. A room full of people who genuinely love my son. Luke took a video and Jason held Niko and helped him blow out the candles on the cake...who's the parent here, anyway?! I thought it was pretty funny. Luke made the Cookie Monster cake, and the first thing Niko did was pull off and suck on one of the googly eyes. He sat in his high chair and ate fistfuls of cake. I just kind of stood back and watched him, remembering his birthday last year and how he choked immediately on the cake, throwing it up. Mom put her arm around me and looked at me, and I could tell that she remembered the same thing. After all, she helped bathe him and change him into clean clothes after the last cake "fiasco". We looked back at Niko and both started to laugh. Really, things can't get too much better than this.
Subscribe to:
Comments (Atom)
