Tuesday, March 31, 2009
I'm having one of those days. It was such a whirlwind that I feel like I've barely had time to connect with myself. Or Dave. Or the kids, because I got home late and they were sleeping already. Worse, I gave myself a killer headache because I skipped coffee this morning. Because I had one of those mornings, too. I am calling it a night and crashing.
Photo by David Ross
Ever since Max was a baby, he's loved things that go—trucks, cars and most of all, trains. It used to give me comfort. Developmentally, he may have been unlike other boys his age but in this way, he was totally typical.
A train track runs about a quarter-mile from our house, which has proven to be a Good Thing for Max. Dave and I are oblivious to the sound of the trains but if Max is near a window and one goes by, he perks up and says "Rain! Rain!" (t's are hard for him). Last summer, we took him to an outdoor railway museum filled with old train cars and Max was giddy with excitement. You can bet we're going back as soon as it's warm enough.
Music may soothe the savage beast but for Max, nothing is more relaxing than kicking back with a good train DVD (and a glass of fine wine, of course). Max's collection includes Hard Hat Harry's Trains and Helicopters and All About Fast Trains & Airplanes. They are kind of fun to watch, unlike Thomas the Tank, who I thought was a big bore. Thankfully, Max outgrew him.
Last night, Max wanted to read a book he's had since he was a tot, Trains, by Byron Barton. He's too old for it, really, but to him it's the book equivalent of comfort food so I let him. Suddenly, he pointed to the conductor and then he pointed to himself. Then he did it again. "You want to drive the train, Max?" I asked and he nodded "Yes!" vigorously. I've made a lot of stuff happen for Max; I'm not sure I can pull that off, though we're overdue for a train ride and maybe I can get the conductor to let Max watch him in action.
What kind of things are your kids into these days?
Monday, March 30, 2009
Saturday night, Dave and I went out with friends to celebrate his birthday. The babysitter came at 6:00 while I was playing Candyland with Sabrina. We finished the game and she wailed, in her most pitiful voice, "MOOOOOOOMMY, DON'T LEAVE ME!" Like I was abandoning her on train tracks or something. Max gestured to the floor and stomped his foot, which also translates to "YOU! STAY HERE!"
Guilt never strikes. I kiss them good night, then leave with Dave. I absolutely need to get out once a week.
I've always felt this way. Before I had Max, I used to worry about not having a life once I became a mom. I really, really, really wanted a baby, but I also loved my freedom and all the activities Dave and I did. After Max was born, we were so sick with worry that we needed to get out more than ever to decompress. So, we've had babysitters for years.
I know this one woman who literally never goes out with her husband; she doesn't trust anyone else to take care of her kids. I think it's healthy and rejuvenating to spend time alone with your husband. Dave and I typically go out Saturday night to a casual place to eat, then a movie and maybe coffee afterward. We're not big drinkers, although the other night I tried iced wine for the first time and I think I could get used to it. (May I not have to look back at this post years from now and think, ah, that's where the alcoholism started.)
How often do you get to go out with your husband, and what do you usually do?
Photo by Hysterical Bertha
Friday, March 27, 2009
I'm glad I shared Max's birth story this week. It was draining, but it was comforting to know that many of you relate to what I've been through, and that I've helped to raise awareness about pediatric stroke.
We now return to our regularly scheduled programming.
Sabrina is in this interesting phase where she wants pickles for her bedtime snack. She's always loved them. I have, too, since I was a kid. We often have to split the one that comes with my dinner at a restaurant, with her making sure that my half is not larger than hers.
Max, meanwhile, seems to have acquired one of Dave's quirky habits. The other week, before Max drifted off to sleep, I noticed him running one hand up and down a forearm, the exact thing Dave absentmindedly does sometimes when he's just lying around, relaxing.
Have your kids picked up any particular habits or mannerisms from you?
BTW, I just got a printable Borders coupon good for 40 percent off one item at the store this weekend, it's here if you'd like it.
Thursday, March 26, 2009
The day after we found out that Max had a stroke, I was released from the hospital. We decided we'd stay in accommodations there, and drove home to pick up clothes and stuff. When we walked onto the front porch, there were several bouquets of flowers, random packages and a pan of lasagna a neighbor had made. It all looked so sad sitting there.
The house was also sad, too silent and too empty. Dave and I couldn't bear to go into Max's freshly-done room, so we steered clear. I spent a couple of hours on the Web, researching infant stroke and therapies. I discovered an online group, The Pediatric Stroke Network, and joined. That felt good. I had prepared an email with filled-in addresses to send when Max was born. That stumped me: What to say? In the end, I wrote that we'd had a beautiful baby boy who'd experienced some trouble at birth, that the doctors weren't sure what lay ahead for him but we felt blessed to have him.
Friends, family and coworkers sent cards. Some had simple messages such as "Congratulations on your new baby boy!", as if his birth had been like any other. I knew those people were just trying to make me feel better, and I appreciated that. Some people wrote long cards rich with sympathy and encouraging words, and I appreciated those, too:
"I know that everything is really insane right now, but I just want you to know that I'm thinking about you every day and praying for you."
"We are all sending our good thoughts, prayers and fervent wishes for Max's quick recovery. You are very loved at this office, Ellen, and everyone here is beaming hugs and kisses at you, David, and your tiny wonder boy."
"You are incredibly strong, and you will find the extra strength to deal with whatever comes. If you want me to hop on a plane and come be there with you, just tell me."
Over the next week, Dave and I were in and out of the NICU, but mostly there. I passed the time by reading to Max. My favorite book was a Dr. Seuss one my good friend Wendy had brought me, Oh The Places You'll Go. Dave and I talked with a few of the parents there. The baby next to Max, a preemie, was just a little larger than Dave's hand. His skin was so transparent you could literally see his heart beating. His parents had been taught how to tap on his heart to make it restart when it stopped. They told us that he, too, was at risk for all sorts of delays and problems. Over the years, I've wondered what happened to him.
I don't remember on what day or when Max was finally conscious, but suddenly he was, his eyes foggy. No newborn can see that clearly, let alone one who'd been through brain trauma. In order for me to hold him, the nurse had to gingerly lift him out of the incubator so as not to get the wires tangled up, and rest him in my arms. Holding him gave me relief that nothing else had.
I watched Max constantly to make sure nothing seemed off. Occasionally, he'd thrust out his tongue. "Is that normal?" I asked an NICU nurse I'd come to know. "No," she said. "He's also been arching his back. Is that normal?" I continued. But I already knew the answer: No. By then, I'd read up on cerebral palsy; those were signs of it. Then came the day when the sweet young pediatric neurologist showed us the MRI scans of Max's brain, and where the stroke had struck. There it was, in black and white: our baby's brain damage.
Slowly but surely, we found out Max was at risk for more problems. A seizure disorder, for one, although within several days of his birth they'd been contained by the medication. Some babies who have strokes at birth are unable to swallow. Max wasn't one of them, and he was able to down all the bottled breast milk I'd stored. The nurses kept a close eye on his body temperature—damaged brains can have trouble monitoring body temperature. Again, Max held his own. When the nurses came to test for hearing and Dave and I learned Max was fine, we were euphoric.
I asked the social worker who'd been helping us to have the occupational and pediatric therapists visit Max, and they did. I bitched to her that the big-deal founding father of pediatric neurology never had one optimistic thing to say; the next time he saw us, he talked about brain plasticity. Meanwhile, I'd put in a call to Early Intervention (a state program for children under three with developmental disabilities) and told them about Max's situation. Within a month, Max was getting weekly occupational and physical therapy.
Finally, finally, finally, Max was released from the hospital. He'd been there for almost two weeks, but it had felt like two years. My entire life had changed. As I stood in a waiting room, a woman came over to me. "You look so much better now," she said, kindly. Her own baby had some lung troubles, and she'd noticed me on the NICU floor. I can't even imagine how awful I looked. It had barely registered that I'd had a C-section.
We bundled Max into his car seat, and I waited with him in the cavernous lobby of the hospital as Dave got the car. I'm sure many first-time parents can't quite believe it when they leave the hospital with their baby—you're letting me? Take this tiny little creature? Without any experience? For me, that feeling was magnified a million times. I was bringing home a baby who'd been very sick, who was at risk for seizures, and who had unknown delays and challenges lying ahead of him.
But that day when I walked out of the hospital with Max into the sunlight, I had hope. I had a beautiful boy, and I was his mom. And I was going to do everything within my powers to make the world right for him.
Wednesday, March 25, 2009
I will finish up Max's birth story tomorrow, my tear ducts need a break after the last two posts. Meanwhile, here's a video of him that shows how well the Botox injections worked on his right hand. It's always been the more messed-up one (to use the technical term), and he typically has to be reminded it even exists. But he sat down at the table and, without prompting, immediately started playing with two hands. Yes, I have a mildly annoying tendency to shout "YAY!" when Max does great stuff. It's a lot better than "DUDE!", I think.
That pink mystery substance is Flarp. I highly recommend it for kids with sensory issues, kids who need to be encouraged to manipulate their fingers and kids who generally like to make a mess. In other words, all kids! Disclaimer: I am not responsible if the stuff ends up in your child's hair. And trust me, it will. Disclaimer: I am also not responsible if it, say, ends up in your work tote bag and at the coffee shop you reach inside for your wallet, feel something slimy and let out a loud scream. Trust me, this could happen, too.
Monday, March 23, 2009
When the doctor at the elevator bank told us that Max was having seizures, I started sobbing. Then I saw Max in the NICU for the first time, and it took every ounce of control I had to not get hysterical. He was unconscious, with tubes and wires everywhere and a machine monitoring his vital signs. He was getting heavy doses of two different anti-seizure medications. It didn't make sense—he was just as pink and perfect-looking as he'd been in the delivery room, all 7.11 pounds of him. The other babies were teeny-tiny preemies, jaundiced newborns, babies recovering from heart surgery. What was Max doing there?
We learned that a resident had noticed one of Max's feet twitching. When they hooked him up to a monitor, they discovered his brain was constantly seizing.
We sat there in the NICU next to Max's incubator for the longest time. An NICU, if you've never been in one, is relatively calm-seeming for a place where so many babies are on the brink. Neat rows of incubators, nurses moving with efficiency, the silence broken only by the occasional beeping monitor or weepy parent.
I felt terrible leaving Max there, but eventually we headed back to our room, completely drained. We had to get through what felt like a gauntlet of new mothers strolling around with their infants.
We walked into the room. A couple of friends had sent a huge blue-and-white floral "IT'S A BOY! CONGRATULATIONS!" display. We took one look, collapsed into separate chairs and cried. Straight-from-the-gut, heaving sobs and wails. We got into bed, held each other and cried some more. There was nothing to be said.
There was a chance Max had a metabolic disorder, we were told. They put a rush on the tests. I kept asking, "If it's a metabolic disorder, can it be treated?" Some could, they said. That little bit of hope got us through the next few days. We fended off phone calls from friends who called to congratulate us, although I broke down and told one that Max was having seizures, and we cried together. We told our families that Max was having trouble breathing, that he was under observation, and left it at that.
Friday morning was the MRI. A few hours later, the doctors were ready to talk. As I walked out of the elevator, I saw a group of them standing there. Pediatric neurologists, one of them a founding father of the field and on the elderly side. I stared at him, searching for a sign. He sort of waved at me, which I considered reassuring. You don't just wave at someone unless you have decent news to report, I figured. In those last minutes before we learned the truth, I was clinging to any hope there was to cling to. "Please, please, please, let it just be a metabolic disorder," I mumbled to Dave. "Please please please please please."
A nurse brought us into a room next to the NICU. Dave and I sat down on folding chairs at the end of a long table, held hands and waited for the doctors. They came in and took their places across from us.
The older pediatric neurologist spoke.
"Your baby has had a stroke," he said.
I gasped. "Babies can have strokes?" I said.
He proceeded to tell us that yes, Max had a stroke. A bilateral stroke, meaning it had struck both sides of his brain. It was a large stroke. A "significant event."
"What does this mean?" I asked. I didn't even think to ask how it had happened; I just wanted to know what the future held for Max.
That is when the doctor drew the above sketch. He showed us the different parts of the brain that had been affected—the parietal, temporal and occipital lobes. We were lucky the brain stem had been spared, as that area handles many of the body's primary functions, including breathing and heart rate. I don't believe he ever used the words "brain damage," though that is exactly what had happened. He explained that, as a result of where the stroke had hit, Max might have severe cognitive impairment. That he might not walk. That he might not talk. That he could have vision and hearing problems.
It wasn't just one nightmare scenario. It was every single one.
I didn't even cry; I was too numb. Dave folded his arms on the table and buried his head in them. He's usually such a happy-go-lucky guy, one of the things I've always adored about him. Seeing him stricken with grief made mine that much worse.
The next words that came out of my mouth were so raw, it's hard to believe now that I actually said them. But I did.
"I don't want a handicapped child," I blurted.
"Well," the doctor said, "you could sign a Do Not Resuscitate."
We hadn't even known there was a possibility that Max could die.
After the older doctor left, the young pediatric neurologist and the other one, a woman from Italy doing a fellowship, sat with us. The young doctor told us that babies' brains are malleable. "Plastic" was the word he used. He said that Max's brain had the chance to regenerate, and that while the stroke was severe we should have hope. Because Max needed us to have hope. The other doctor pressed a card into my hand. I think it was an image of an Italian saint who protects babies, I can't recall. I do remember thinking that if she was giving this to me, things must be pretty bad.
At some point while we were in the NICU, hovering over Max, a resident passed by and greeted Dave. Turns out they'd gone to college together. He asked why we were there and we told him that Max had a stroke. "Oh, look at him, he looks great!" he said. Young and naive, he meant it—Max did look OK. We made some feeble joke about Max being the poster child of the NICU, and asked him to see if there was information, any information at all, he could get us. He promised he would, but I suspect he got scared off when he learned what we were really dealing with because we never saw him again.
We finally had to tell our families. It was hard; my parents had been so excited about the birth of their first grandchild. I did not want them feel as wrought as I did, so I tried to downplay the situation as best I could, expressing optimism I did not feel. I called my two best friends and asked them to let people know. Then I made Dave tell the supervisor that I needed to be transferred to a room that was anywhere else but in the maternity ward. Being there was torture.
Meanwhile, I started pumping milk, determined to stock up for Max when he could feed. It was good to do something for him, because looking at him in the incubator left me feeling overwhelmingly helpless. I sat in a worn, tan pleather rocker in a little room, otherwise bare except a table, a pump and a fridge. There were many other bags of milk chilling, milk of all different shades. I'd glance at the bags and wonder what was wrong with those mothers' babies, and whether they were going to be OK. I knew every parent in that NICU was going through their own kind of hell.
Eventually, I found the resident who'd first noticed Max's foot twitching and queried her mercilessly about what she'd seen, and what she thought his future held. She told me about her father, who'd had a stroke and had managed to recover his speech function. It wasn't very reassuring; what connection did my baby have with an old guy who had a stroke? I asked every medical professional I encountered whether they had ever seen a baby who'd had a stroke. All of them said no.
The truth was, nobody could give me the only answer Dave and I wanted to hear: what was going to happen to Max.
Part 3: We take Max home
This is me standing on our deck on Dec 4, 2002, my due date. I get both happy and sad looking at this photo. Happy because I look so excited. And that's Max, beautiful Max, inside my big belly. Sad because I obviously had no idea what hell the future held.
It had been the snowiest winter in years, and Dave and I kept worrying that we wouldn't be able to make it to the hospital. That snowy day, though, I wasn't ready to go.
I'd had a wonderful pregnancy. Some intense exhaustion during the first trimester, no nausea. After that, I was my usual high-energy self. I've never been the most thin person in the world, so having a bulging stomach didn't bug me. I loved feeling the baby moving inside me, loved hearing the galloping heartbeat at the sonograms and seeing the shadowy blob who would be my child, loved eating with abandon. In the evening, when I came home from work and Dave met me at the train, I'd raise my shirt as I walked over to the car and show him my belly, like a flasher, and we'd laugh every time. For entertainment, we'd lie in bed and watch my belly ripple.
We were so ready for Max.
I had a history only of baby love. I babysat from age 10 on, was a camp counselor in my teens, volunteered at a cancer hospital's pediatric playroom in my twenties, ogled babies on the street all the time. I assumed, with what I now see as hubris, that my baby would be born healthy. I was. We'd had no trouble conceiving. My pregnancy was uneventful.
We painted the baby's room a cheery apple green, spent way too much on fancy crib bedding, took a childbirth/newborn class in which Dave had such trouble getting the diaper on the doll I thought I would go into labor right then and there from laughing so hard. We were both hoping for a boy, even if we wouldn't admit it. We'd decided on Max, and Mia if it were a girl. We liked Max a lot more. It seemed like such a strong, feisty name. My mother, knowing that we were looking for an 'M' name in memory of my grandma Minnie, didn't like Mia and had inexplicably suggested "Mignon." My response: "And her middle name can be Filet!"
At around 5 a.m. Tuesday, December 9, I woke up feeling crampy. I dialed the doctor on call and she told us to drive to the hospital. I remember standing in the shower and thinking, Last shower I have before I become a mom.
At the hospital, I got pitocin to induce labor, then an epidural that didn't work, then a second one after I said some obnoxious lady-in-labor things to the anesthesiologist. But, nothing. Hours went by. I wasn't allowed to eat yet that didn't stop Dave from downing a big Subway sandwich in front of my face (some things, you never forget). Several times, I was given oxygen. Finally, I started pushing. The doctor was not my usual beloved one; I'd met him only once before. There were two nurses. We chatted and even laughed, about what, I don't recall.
Max didn't progress. Me being me, I wanted to keep pushing. Finally, around 11:00 p.m., they decided on a C-section. It wasn't an emergency or anything; it was all pretty calm.
They wheeled me into the operating room, covered my lower half with a sheet, drugged me up at some point. I felt a lot of pressure, then suddenly heard a baby's wail. "You have a boy," a doctor said (there were a few of them in there). Dave got to hold Max first. He was standing behind me, and I can vividly picture looking over my shoulder and seeing him staring so wondrously at the bundle in his arms. He was in awe, and he was in love.
Max was pink and perfect, not at all wrinkly or ET-like as newborns can be. He had amazing Apgar scores. "Even pediatricians' kids don't have Apgars like that!" a doctor joked.
The rest of the night is a blur: cuddling Max in a tiny room where they parked me while they waited for a real room to open up. Me not quite believing that, yes, an actual baby had been inside me all those months. This one. Begging for water and being told I wasn't allowed to drink, then making Dave smuggle in a cup of ice chips. Finally getting a room. Trying to breastfeed in the dark for the first time as Max cried and wouldn't latch on but kinda-sorta finally did. And then, morning.
My mother and sister came to visit at around 11. As I tried to feed Max, he stopped breathing and turned blue. Dave ran out and got a nurse. She came in and whacked Max on the back. "Mucus!" she said, by way of explanation. My mother and sister looked worried. Max seemed OK after that.
A couple hours later, as I held him, he stopped breathing again. This time they whisked him away to the NICU.
My body was healing from the C-section and I still wasn't able to walk, so Dave kept going to see Max, who was in an incubator. I forced myself to get up in the early evening. As we waited at the elevator bank to go to the NICU, there was a doctor standing there. Glasses, young, a little nerdy. He nodded at us. "Did they use forceps during your delivery?" he suddenly asked me. I'd never seen this doctor before, and thought it was a bizarre question (as it turned out, Dave had spoken with him in the NICU). I figured maybe he was looking for people for some research project or something. "No," I said. "Why?"
"Because your baby is having seizures," he answered.
And that's the moment when I went from the happiest day of my life to the most devastating one. I couldn't have imagined how much worse things were going to get.
Part 2: The day we found out babies can have strokes
Saturday, March 21, 2009
A couple of months ago, I discovered a wonderful blog—Class of 2008—by a girl named Sarah (here she is) and her mom. Sarah's response to Obama's remark about how his poor performance at a bowling match was "like the Special Olympics or something" is just fantastic; she even offered to share pointers with him. Read it for yourself!
Friday, March 20, 2009
Max's right hand is looser, so the Botox is definitely working. Tonight, as he was falling asleep, I lay down next to him in bed (our bed—yes, he and Sabrina are STILL there), held his hand in mine and felt the difference.
I have always loved Max's hands. Here they are when he was eight months old, pudge central. With wrists that looked liked someone had tied a rubber around them. And those adorable inverted knuckles babies and little kids have.
His hands would frequently tighten up and fist, something that concerned me a lot back then. I'd wiggle in a finger and try to get him to relax. Conversely, sometimes they'd get really slack and I'd have to help him close his fingers around a rattle or toy handle. I was always massaging them during car rides.
These are Sabrina's hands, snapped this fall. I adore them, too. She still has a little bit of the crease around her wrist, and the inverted knuckles. I am clinging to that last bit of baby-ness.
What do you find most delicious about your children?
Wednesday, March 18, 2009
I don't know much about Natasha Richardson; I've never seen any of the movies she's been in. But when I first heard that she'd gotten hurt during a ski accident on Monday, I was consumed by the story. What had she hit her head on? What were her symptoms? What type of injury was it? What part of her brain was hurt? Anytime I hear about someone sustaining a brain injury, I want to know more. I relate. Max had serious brain damage at birth from a stroke, a bilateral one that affected both sides of his brain.
It seems that after the actress's accident, according to a statement released by the Canadian resort where she'd been skiing, she did not show any visible sign of injury. An hour later, she wasn't feeling well. A day later, she was pronounced brain dead. Two days later, she was dead.
This is tragic. It's also a serious reminder to me of how unpredictable brain injuries are. Doctors know a lot about the brain, but they don't know much, much more. The brain largely remains a mystery, especially when it comes to treating trauma. That was particularly hard for me to accept during the first couple of weeks after Max was born. I wanted the doctors in the NICU to help heal my baby's brain. Out of my head with grief, I screamed things like, "WHY CAN'T YOU DO SOMETHING FOR HIM?" Not possible.
This is just one reason why stem-cell research is so important, and why it's an amazing thing that Obama has lifted the ban on federal funding for it.
Guess what Dave is doing this weekend? Uh-huh: He's going skiing. He'll be on a business trip in Canada and plans to hit Whistler (not where Richardson was). I'm not going to stop him, but I am making him buy a helmet. You hardly ever see any adult skiers wearing them; maybe now that will change.
Tonight, my heart goes out to Natasha Richardson's family.
Monday, March 16, 2009
Here's Max, resting peacefully after he got the pre-Botox anesthesia, probably dreaming about Cars and chocolate pudding. Everything went fine. Max cried at the hospital, they knocked him out, the injections took all of five minutes, he woke up groggy but perked up almost immediately when he saw that Mickey Mouse Clubhouse was on the TV, and then he was home again.
As usual, I worried and worried and where did it get me? Nowhere. I've gotten a lot less anxious about Max over the years, but still, I wish I was better able to keep the worry monster away.
Is there anything that helps relax you when you've got a major worry on your mind? I'd really love to know.
Thanks for all the well wishes over the weekend. As you read this, Max is either preparing to get Botox, getting the injections or recovering from them.
On Saturday, Max's school "Progress Report" arrived in the mail. It's a rather dense document that lists the goals set up for him, whether he achieved them or not, and how his progress compares to his last report (which was in November). I typically read these thoroughly but try not to take them to heart, as I know that even when something is listed as "Status Unchanged" or "Limited Progress" that could quickly change in the near future.
This time, Max had a bunch of "A's" (for Achieved). Allow me to boast:
Max will recognize printed words with moderate cues and 75% accuracy. ACHIEVED!!!
Max will recognize numbers 0-10 with 75% accuracy. ACHIEVED!!!
Max will sort up to three groups of objects with 75% accuracy. ACHIEVED!!!
Max will use his communication device to describe current weather conditions when given a choice of three with minimal cues and 75% accuracy. ACHIEVED!!!
Max will learn about the changes that occur during various seasons and will answer questions such as "In the winter, does it snow or is it hot?" with moderate cues and 75% accuracy. ACHIEVED!!!
Max will drink from his sippy cup with moderate physical cues during snack and lunch time. ACHIEVED!!!
Max will use total communication to request, respond to simple question, greet, turn take and participate in three of four opportunities, given moderate cues. ACHIEVED!!!
Max will pull down the zipper on his jacket, take it off and hang it up with moderate-minimal physical assistance and verbal cues 75% of the time. ACHIEVED!!!
Max will transtion from the middle of the floor to standing using a half-kneel strategy without upper extremity support or physical assistance. ACHIEVED!!!
Max will throw a lightweight ball with two hands to a partner three feet away. ACHIEVED!!!
Max will continue to demonstrate extreme cuteness, good cheer, a great sense of humor, determination and prove all of those pessimistic doctors in the NICU wrong. ACHIEVED!!!
OK, that one wasn't on there.
He got a "Good Progress" in every single other objective.
Funny, just this week I was telling a friend that progress comes much more slowly now, but I'm OK with that and nowhere near as anxious as I was about it when Max was little. (Someone calls these little achievements "inchstones"—is it you, Melanie?) Back then, it took a long time for Max to reach milestones, and the wait could be excruciating. Especially because we weren't sure he would achieve them. Remember, we'd been told the worst when he was born. When Max did reach milestones, they were miraculous-seeming—Max crawling, Max walking, Max walking up stairs, Max saying words, Max feeding himself, Max going potty, Max riding a bike.
Progress may come in smaller, more subtle increments now, but it is just as miraculous-seeming.
Saturday, March 14, 2009
Max is going to a local hospital Monday morning to get Botox injections in his hands. His thumbs are tight, and this will help loosen them up so they can be more functional. I've been joking with friends about my big idea: a mommy-child Botox clinic. You get a little Botox around the eyes to get rid of wrinkles, your child gets Botox to get rid of stiffness.
But really, I am scared.
Not because I think this doctor might mess up the injections; I trust him completely, he's experienced and he did this once before for Max. I'm scared because they have to put Max under for the procedure. I have irrational fears about Max being unconscious, every single one of them tied to those first weeks of his life when he was in the hospital.
Wish us luck.
Friday, March 13, 2009
Got something to get off your chest? Join the fun. Shouting encouraged!
HOW IS IT POSSIBLE OUR ALREADY-RIDICULOUS TAXES KEEP CREEPING UP EVERY YEAR BUT OUR CITY IS SO CASH STRAPPED IT IS LAYING OFF FIREMEN AND POLICE OFFICERS AND REDUCING LIBRARY FUNDING? IS THERE, BY CHANCE, SOMEONE NAMED "MADOFF" RUNNING THIS PLACE?
INSURANCE COMPANY, YOU CAN KEEP DENYING PAYMENT FOR MAX'S THERAPIES, BUT IF YOU THINK I AM GOING TO GIVE UP ON THIS, YOU ARE IN DENIAL.
SPRING: HURRY UP! I HAVE QUIT WEARING SOCKS IN ANTICIPATION, AND I AM FREEZING.
WHY OH WHY DOES SABRINA INSIST ON STORING HER PINE CONE COLLECTION ON THE KITCHEN COUNTER? YOU CAN JUST BET THAT SOMEHOW, ONE OF THEM IS GOING TO END UP IN THE FOOD AND WE WILL BE EATING PINE CONE MEATLOAF FOR DINNER.
IS IT JUST ME OR IS AMERICAN IDOL GETTING A LITTLE BORING?
That is all.
Thursday, March 12, 2009
Just read about this offer on my local mother's group e-loop, and had to share.
Restaurant.com offers discounted gift certificates for restaurants in your area. You just type in your zip code, and a list of restaurants pops up. Not only are the certificates a good deal right now, but if you type in the code MENU at checkout, you get 80 percent off your order. (The code seems to be effective till March 15th).
I scored four $10 gift certificates to a local coffee shop for $2.40, no kidding. They e-mail you a link for printing out the certificates. A lot aren't good for weekends, so read the fine print. (There's always fine print, isn't there?)
For today I was thinking of writing about spanking your children, giving them human growth hormone and other low-key topics, given that yesterday's rant about child harnesses didn't generate much flack. Instead, I decided to go with this controversial post, courtesy of Sabrina.
So, would you like to talk about Max?
Sabrina: "No, about me. Because I like myself!"
And what would you like to tell everybody today?
Sabrina: "I want to tell everybody that I have an Ariel doll. And, and, I was, was, watching Peter Pan. But I didn't eat. Mmmm.... I was cold. That's all the questions."
OK. Let's talk about Max!
What do you want to tell everybody about Max?
Sabrina: "He likes to watch Cars. And he eats so well. And he likes Wall-E. That's all the questions for Max, too."
Do you like to help Max?
Sabrina: "Because he's my sister."
Silly! Think about that. He's your sister?
Sabrina: "Oh. He's my brother. But who's the sister?"
You don't have a sister! What are your favorite things to do with Max?
Sabrina: "I like to share. And I like to play with him. And, and, um, and I like to play with my Belle doll and Snow White and Jasmin and the new doll and....what's her name...Ariel."
Does Max like to play outside?
Sabrina: "He likes to go on the swings."
Does Ariel like to go on the swings?
Sabrina: "No, she's a mermaid."
Why can't mermaids go on the swings?
Sabrina: "Cause if they sit on the swing their tails will fall off. That's all the questions."
Thanks for talking to everyone, sweetie. You look beautiful in your mermaid outfit.
Tuesday, March 10, 2009
Last night, there was a fun activity at Sabrina's school involving a play, costumes and dessert. Max typically does not like crowded activities like this. So I decided not to take him. I came home from work, grabbed Sabrina and jumped in the car. As I pulled out of the driveway, Max was standing at the back door, looking at me with an expression that was part sad, part why-are-you-leaving-me-here-with-the-babysitter (Dave had to work late).
I couldn't stop picturing Max's little face the entire evening.
In situations like this, I'm often torn. I don't think Max would have enjoyed the activity, and if he would have wailed and cried it would have disrupted the event for Sabrina (and other people, too). But, who knows, maybe Max would have surprised me. I don't want to go through life leaving him out of stuff.
Years ago, I knew this one family with a disabled kid who they'd never take anywhere. He'd stay home with his caretaker, and the parents and other kids would go do their own thing. To me, this child never actually seemed like he was part of their family. I have this kid in the back of my head at times like last night.
I don't feel guilty when Dave or I take Max out for his own activities and Sabrina stays home. Starting in April, on Sunday mornings Max will be going to a baseball league for kids with special needs (yes, I am psyched!) and Sabrina won't be coming. That seems fine and right to me. So why do I give myself such a hard time about situations like last night?
Monday, March 9, 2009
* My sister (Aunt Judy) is pregnant! I am beyond thrilled. Happily, my sister-in-law, Emily, is also knocked up, so Max and Sabrina are due to have two little cousins soon. All the baby news has been making me think, If we're going to have another kid, we need to do it soon. We just can't make up our minds. The lovely economy has not been making our decision any easier.
* Dave was snoring so loudly last night that I shoved him to wake him up. I did. I am going to add a button to Max's speech device that proclaims "Stop snoring!" and leave it on our nightstand and press it as necessary.
* Some little girl Sabrina knows told Sabrina that she has a big belly. (Sabrina does have an adorable pot belly, a perfectly acceptable thing to have at four years old.) When Sabrina mentioned it to me, I wanted to tell her to tell this child, "My belly rocks and you're a puny, whiny, boring kid. Now be nice or I'll sit on you." Instead, I simply told Sabrina that her belly is just perfect, and kissed it and kissed it till she laughed.
* I am thinking of doing irrevocable damage to Max's Wall-E DVD. If you've had to sit through Wall-E more than once, you will understand why.
* I went to the paint store this weekend to check out possibilities for a room I'm redoing and walked out with an insane amount of color sample strips. Why why why are there so many shades of blue? There is probably a "Wanted" poster of me at the paint store.
* Max's school is having a Gertrude Hawk Chocolate sale that ends this Friday, and I have not been a model salesperson. I've sold four boxes—to our babysitter and Dave's mom. It is looking like I am going to have to order a bazillion boxes of chocolate myself. Which is not going to help with Sabrina's belly situation. Or mine.
Got something to confess?
Saturday, March 7, 2009
The other night, NBC anchor Brian Williams made a plea to viewers: "We're looking for good news."
Since then, he's been flooded with e-mails. Here's the story.
Another exciting update: Max has a new feature on his communication device which he surprised us with today. It makes farting noises. I guess the speech teacher at school must have recently uploaded it. I was in the middle of making dinner when Max pressed the button and started cracking up at the sound. I wasn't looking and automatically said, "Dave!!!"
But, no. It was the Dynavox.
Since then, he's been flooded with e-mails. Here's the story.
Another exciting update: Max has a new feature on his communication device which he surprised us with today. It makes farting noises. I guess the speech teacher at school must have recently uploaded it. I was in the middle of making dinner when Max pressed the button and started cracking up at the sound. I wasn't looking and automatically said, "Dave!!!"
But, no. It was the Dynavox.
Thursday, March 5, 2009
Thanks so much for the feel-well wishes—they worked! I have no fodder for Primal Scream Friday this week as I am generally ebullient that I didn't come down with anything major, just a minor case of the sniffles.
When I really think about it (sitting around and thinking: such a rarity), life is pretty sweet for the most part. I just don't appreciate it because I get buried under an avalanche of concerns. I have ever-present anxiety about Max's future. I get sucked into the can-I-get-it-all-done daily hustle. I wonder whether the recession monster is going to show up at our door one of these days. So I forget that things are, overall, OK. Max is doing well for himself. So far, we're holding our own in these crazy economic times. Maybe some days are eh and maybe they're crappy but, on average, they're good.
Some stuff that always gives me that life-is-good feeling:
• Max's giggle
• Conversations with Sabrina about how her day went
• Dave hugs
• Road trips anywhere
• Settling down with a book or a stack of magazines
• Weekend visits from my mom and sister
• Flowery or citrusy shower gel. Seriously, it's like crack for me.
• Looking at photos of the kids
• Saturday night sushi-and-movie outings with Dave
• Hearing about progress, any progress, Max is making
• The Gypsy Kings
• Unexpected calls from old friends
• Fruity cocktails with cheesy-but-nonetheless-endearing little paper umbrellas (definitely need more of those in my life and, come to think of it, would it be wrong to stick them in the kids' juice boxes?)
• Having the house to myself
• When Sabrina and Max are in a new place and Sabrina puts an arm, protectively, around Max's shoulders
• Our bed comforter. I love that thing.
What's on your bliss list?
Photo by Juli Shannon
Wednesday, March 4, 2009
Props to Kate for yesterday's informative, overall terrific post. I am definitely putting some of those strategies into practice with Max.
So, I'm coming down with something—watery eyes, weak knees, feverish. Amazing thing is, this is the first time I have been sick the entire season. Seriously. Even the kids, aside from one ear infection (Sabrina), a bad cold (Max) and a cough (Sabrina), haven't had it so bad. Dave only got sick once with a cold, though in typical man form it was like he'd come down with malaria or something.
I've been pondering why it is that I've escaped all the plagues that have befallen friends and coworkers, and here is exactly what I think did the trick:
• I have not been eating right.
• I have hardly been exercising.
• I have most certainly not been obsessively cleaning my hands with Purell. Or doing much of anything to sanitize the house.
• I regularly kiss my germ-laden kids on the lips.
• I have let them sneeze on me. Once, Sabrina deposited a booger right on my hand. You know, just because.
• I have done the twelve-minute walk to my morning train with wet hair, an open coat and no hat.
• I have been staying up till all hours to blog/catch up on American Idol/generally loll away my life in front of some sort of media...
• ...and then I've been getting up at 6:45 a.m. for work.
So, there you have it. Try my plan! Maybe it'll work for you!
Mom, please calm down.
Photo of random adorable dog by Nashthebean
Tuesday, March 3, 2009
This is a guest post from Kate, mom to Gavin, the cutie pie you see here. Kate keeps a journal over at CaringBridge. I love her spirit and sense of humor! I was intrigued by the dietary changes she made with Gavin, who has cerebral palsy, so I asked her to share her experiences. The advice she got seems like it applies to any kid, special needs or not, though you should check with your pediatrician before you try anything. FYI, the doctor she mentions here is willing to answer questions, so ask away and I'll run the doctor's answers in the near future.
I’ve been a daily reader of To the Max for several months now and love following the adventures of the amazing Ellen and her inspiring family. I was so flattered when she asked me to guest blog about Gavin’s diet and the extraordinary progress he has made.
Our son, Gavin, is 17 months old. When we got the diagnosis of cerebral palsy a week before his first birthday, I didn’t quite believe it. To be honest, I’m still not convinced. Regardless, I knew that he’d suffered some type of insult to his brain. I think a lot of focus is put on the physical therapy aspect of treating CP, which I don’t always understand. The damage is in his brain, not his legs or his arms or his trunk. I wanted to find a way to somehow start the healing process in his brain. I searched and searched the Internet, or as I like to say, attended “Google University.”
I discovered that there were centers in my area that specialized in treating brain-injured children: The Institutes for the Achievement of Human Potential and The Family Hope Center. We couldn’t afford to attend their seminars at the time, but I found a common thread between the two: Both had a doctor working for them at the time named Coralee Thompson, M.D., who specializes in treating brain injured children through nutrition. One day, I sent her an e-mail; she wrote back and let us do a phone consultation with her, for a fee. Her philosophy is that eating good-quality food can improve the quality of brain function. It's really simple, but too often good food is the last priority when it comes to "therapy." Dr. Thompson has a book due out soon, Healthy Brains, Healthy Children.
Our goals with Gavin, besides to help improve his brain function, were to gain weight and wean him off his reflux and motility medications. Here are the changes we've made:
• We've eliminated all dairy products, except for butter, to help with reflux.
• We give him a half teaspoon of cod liver oil once a day. The fatty acid found in fish oil, DHA, is critical for brain and eye development.
• We feed him protein at every meal—chicken, lentils or salmon.
• We minimize starches and we don’t combine them with animal proteins, since that can result in stomach problems like constipation and reflux. Dr. Thompson gave us a list of the best starches, some of which are brown rice, lentils, quinoa and yams.
• We give Gavin six types of vegetables daily, which I accomplish by making a vegetable stew. Every stew is different! His most recent stew has celery, leeks, carrots, parsnips, spinach, scallions and peas. Believe it or not, they’re delicious and combine well with anything.
• We add a teaspoon of coconut oil to his bottles. This saturated fat is easy to digest and also improves immune function. We also put olive oil in foods; in general, healthy fats like olive oil (rich in unsaturated fats) are critical for energy and brain development.
• Another thing we do to boost his caloric intake is adding two teaspoons of agave nectar to foods. It’s mostly fructose and doesn't need digesting.
About a month after I made all these changes, Gavin had weaned off one medication completely. He is still on two, but the dosages are dramatically reduced. We rarely see him suffering from reflux symptoms at all these days. His bowel movements, which can be an issue with kids who have CP, are normal.
About a month after we changed his diet, I also started having a craniosacral therapist work on Gavin once a week. I started the diet four months ago and the craniosacral therapist three months ago. I believe these two things combined have given us amazing results (here's a video of Gavin). Gavin started turning pages in books, purposefully activating his toys, drinking from a straw, vocalizing more, trying to scoot, sitting up assisted and holding his head a lot better, holding onto objects, and opening his hands (which used to remain fisted) a lot more. To us, these accomplishments are nothing short of a miracle…and the progress continues every single day.
Monday, March 2, 2009
I missed the usual Monday Morning Confessional cause I wanted to share the news that I'd found about promising new research on preventing CP. The professor of chemistry I e-mailed to thank for the research wrote back to tell me that it only applies to oxygen deprivation, for those of you who were wondering.
So, being that I'm usually up to no good, I do have something to unload:
I killed our goldfish.
Yes, I did. It's amazing they even survived for several months because I kept forgetting to feed them. So did a certain husband. Named Dave. Only this time it was me who was supposed to do it, and I spaced. And one morning, they were gone. Both at once.
Another bad thing: THEY DIED NAMELESS. That's right, we never even decided what to call them. When I'd ask Sabrina for suggestions she'd say, ever so creatively, "Fish!" Max would just smile at them and say "ISH!" And so, Fish or ISH! they were.
Amazingly, the kids haven't noticed they are gone for good. Dave just said something about taking the fish to the pet store for a checkup, and that was that.
The worst fish death I ever witnessed (though it was manslaughter, not murder) was this. I used to work with a sweet but clueless woman I'll call M. She was going on vacation for a week, and she wanted the janitor at the office to feed her fish. On the day M asked him, she presented the janitor with a canister of fish food and a bag of Pepperidge Farm goldfish to help him remember to feed the real fish. He didn't speak English very well, and obviously something got lost in the translation cause guess which food he gave the fish?
Anyway, I am obviously trying to distract you from the issue at hand which is me, the fish killer. I don't think either Dave or I are quite ready to handle the responsibility of fish. Two kids, sure. Two jobs, no problem. One mortgage, fine. Two fish, not so much.
Photo by goldy fk
Sunday, March 1, 2009
I was surfing the web tonight and came across this: Scientists at Northwestern University may have discovered a way to protect against cerebral palsy. They've developed a kind of drug that inhibits the brain's production of something called nitric oxide; at high levels, this stuff has been shown to damage brain tissue. Too much nitric oxide is thought to play a role in cerebral palsy. Some 750,000 adults and kids in this country have CP, with the majority born with the condition. (Before last night, I never knew that stat—did you?)
The study's out in the March issue of Annals of Neurology (you know, the type of publication that you'd typically browse through on a Sunday evening when you're vegging on your couch). None of the articles I've read online have made it clear whether or not a "vaccine" or injection of sorts might be possible that would be given to mothers to prevent the rise of the nitric oxide—they're just saying that preventive strategies for CP might be feasible for humans in the future. There is a lot more research to be done (the tests were done on animals) but, still. This is a breakthrough discovery.
I e-mailed the professor of chemistry at Northwestern who lead the development of the drug and thanked him. I had to.
This discovery makes me incredibly, unbelievably excited. It also makes my heart ache a little. Obviously, I can't turn back the clock for Max. We can't turn the clock back for any of our kids. But if in my lifetime cerebral palsy could be prevented from striking babies, I would die very, very happy.
Photo by Bridgepix
The kids and I spent 15 minutes this morning looking through this slideshow of baby animals at zoos around the world, talking about animals in general and mulling over their poop habits (don't ask).
Photo from Tufts University