Wednesday, September 30, 2009
Friday, September 25, 2009
No News Is Great News
After not hearing all morning from the our friends at the Reuten outpatient clinic, Michael called Annette to see if they had the radiologist's report from yesterday's CT scans. Annette was surprised that Dr. Harris had not called us himself. She then told Michael the wonderful news that Sylvie's CT scans were perfectly normal! After 7 months of one shit sandwich after another, finally some positive news! I guess the good thing is that Sylvie is healthy enough to be at the end of the To-Do List.
After school and physical therapy, we headed into the city for the Dan Zanes screening and performance at Housing Works Bookstore. Caroline got a whirlwind tour of New York City as I navigated Friday traffic. Sylvie had on her favorite dress, actually Samantha's, with fruit all over it, for the occasion. I happened to post our whereabouts on Facebook and was ecstatic to be joined at the toddler music fest by my friends Stephanie, in town from Los Angeles, and Janice who is one of my most cherished and longtime friends. Sylvie had never met either of them. When Dan entered the room, Sylvie's face lit up. We said hello and Sylvie tried to follow him around. During the screening, Sylvie chose to sit on my lap for most of the show until Stephanie offered to whisk her off her feet and dance the funky chicken. It is a side of Stephanie I have never seen! They were like Fred & Ginger's kooky relatives. Steph works on House MD and I was equally thrilled and surprised to see my friend Ana cast in the season opener. She's also the cellist in a band I work with (Into the Presence) and my friend Luis' girlfriend. This week was definitely six degrees of Stephanie.
Dan and Sonia played a few songs which was more like Sylvie and I calling out our favorite tunes... "The Fine Friends Are Here," "Wonder Wheel," "Pay Me My Money Down" and more. During "Catch That Train," Sylvie made Caroline, Janice, Stephanie and I form a train with her. I hope Dan appreciated my maurauding crusaders enthusiasm.
Afterwords, we walked over to the Scholastic Store where Sylvie went beserk over the larger than life Clifford which Janice animated. Janice and I have embarked on many adventures in our lifetime, from camping (on a gravel bed in a KOA campsite) to hiking in the Shawagunks without food and practically shaking down a park ranger for a granola bar to learning how to kayak in the Hudson River together as well as rock climbing. We were known to wear vinyl pants back when I preferred Southern Comfort to soy milk but really, watching Janice make Clifford the Big Red Dog come to life ranks up there with sharing a rock ledge together on a multi-pitch climb. I forgot to tell her that our first climbing teacher is in jail for killing his roommate's ex-girlfriend's pet rabbit and making fricassee.
Sylvie was pretty much insane on the drive home. There was so much traffic that I hopped out of the car on Broome Street to MariBelle Chocolate shop, got a bag full of goodies for us and back into the car which had inched forward maybe 10 feet. Sylvie stuffed her face with a buttery cookie filled with fresh caramel. Her fingers were so gooey that Caroline had to rub the caramel off them while Sylvie tried licking off the rest.
When we finally got home, we finally opened that bottle of champagne which we've had waiting and waiting and waiting for such an occasion as today. I made Mark Bittman's soba noodles for dinner (http://www.nytimes.com/2009/09/23/dining/23mini.html) and took Sylvie upstairs for bedtime. She asked me to give Dan Zanes a message and then proceeded to tell her Sleeping Beauty "the good things" of the day which went something like this, "Sleeping Beauty, let's talk about the good things... I won't drop you off and leave you at school. Today we spent the whole day together and I didn't go to work. It was a good day. One day when you were a baby, you were in my tummy and were (gesturing) this small." I couldn't stop telling Sylvie how much we love her and then kissing her fuzzy head over and over and over.
After school and physical therapy, we headed into the city for the Dan Zanes screening and performance at Housing Works Bookstore. Caroline got a whirlwind tour of New York City as I navigated Friday traffic. Sylvie had on her favorite dress, actually Samantha's, with fruit all over it, for the occasion. I happened to post our whereabouts on Facebook and was ecstatic to be joined at the toddler music fest by my friends Stephanie, in town from Los Angeles, and Janice who is one of my most cherished and longtime friends. Sylvie had never met either of them. When Dan entered the room, Sylvie's face lit up. We said hello and Sylvie tried to follow him around. During the screening, Sylvie chose to sit on my lap for most of the show until Stephanie offered to whisk her off her feet and dance the funky chicken. It is a side of Stephanie I have never seen! They were like Fred & Ginger's kooky relatives. Steph works on House MD and I was equally thrilled and surprised to see my friend Ana cast in the season opener. She's also the cellist in a band I work with (Into the Presence) and my friend Luis' girlfriend. This week was definitely six degrees of Stephanie.
Dan and Sonia played a few songs which was more like Sylvie and I calling out our favorite tunes... "The Fine Friends Are Here," "Wonder Wheel," "Pay Me My Money Down" and more. During "Catch That Train," Sylvie made Caroline, Janice, Stephanie and I form a train with her. I hope Dan appreciated my maurauding crusaders enthusiasm.
Afterwords, we walked over to the Scholastic Store where Sylvie went beserk over the larger than life Clifford which Janice animated. Janice and I have embarked on many adventures in our lifetime, from camping (on a gravel bed in a KOA campsite) to hiking in the Shawagunks without food and practically shaking down a park ranger for a granola bar to learning how to kayak in the Hudson River together as well as rock climbing. We were known to wear vinyl pants back when I preferred Southern Comfort to soy milk but really, watching Janice make Clifford the Big Red Dog come to life ranks up there with sharing a rock ledge together on a multi-pitch climb. I forgot to tell her that our first climbing teacher is in jail for killing his roommate's ex-girlfriend's pet rabbit and making fricassee.
Sylvie was pretty much insane on the drive home. There was so much traffic that I hopped out of the car on Broome Street to MariBelle Chocolate shop, got a bag full of goodies for us and back into the car which had inched forward maybe 10 feet. Sylvie stuffed her face with a buttery cookie filled with fresh caramel. Her fingers were so gooey that Caroline had to rub the caramel off them while Sylvie tried licking off the rest.
When we finally got home, we finally opened that bottle of champagne which we've had waiting and waiting and waiting for such an occasion as today. I made Mark Bittman's soba noodles for dinner (http://www.nytimes.com/2009/09/23/dining/23mini.html) and took Sylvie upstairs for bedtime. She asked me to give Dan Zanes a message and then proceeded to tell her Sleeping Beauty "the good things" of the day which went something like this, "Sleeping Beauty, let's talk about the good things... I won't drop you off and leave you at school. Today we spent the whole day together and I didn't go to work. It was a good day. One day when you were a baby, you were in my tummy and were (gesturing) this small." I couldn't stop telling Sylvie how much we love her and then kissing her fuzzy head over and over and over.
AFP 10.2!!!!!
Finally, good news! I mean, we still don't have Sylvie's CT scan results but with an AFP of 10.2 we are all pretty hopeful that everything is a okay. Michael is a bit on edge waiting for today's call. When Annette told us yesterday that Sylvie's AFP was 10.2, Michael said, "Well, I was hoping it would be no higher than 11." I was just hoping for anything good, quite frankly. We needed some good news.
I wish Sylvie could share in our enthusiasm over the 10.2 AFP and 1 kilogram weight gain but really, her excitement was directed at getting mozzarella sticks at the Children's Hospital cafe. We ran into one of Sylvie's favorite nurses from Pediatric Oncology, Danielle, in the cafe while Sylvie was cruising back and forth looking at the enormous fish tank yelling "Hi Nemo!!!!!" It was a very sweet reunion.
We haven't gone upstairs to say hi to the nurses since July; we talk about it; it just hasn't happened yet.
We are one step closer to actually planning a vacation in November, though!
In celebration of yesterday's good news, after preschool and Sylvie's physical therapy today we are headed into the city to also celebrate the Dan Zanes and Friends DVD release with a free screening party at the Housing Works Bookstore Cafe in SoHo. I hope our city friends join us!!! Dan Zanes is going to play a few songs too. For more info, click on The New York Times link or read below.
http://www.nytimes.com/2009/09/25/arts/25kids.html
New York Times
Spare Times: For Children
By LAUREL GRAEBER
Published: September 24, 2009
DAN ZANES (Friday and Wednesday) Both the Housing Works Bookstore Café and
92YTriBeCa are welcoming some fine friends: they¹re celebrating the new live
concert DVD ³The Fine Friends Are Here,² the latest effort from that trusted
friend to children, Dan Zanes. The DVD will be screened, and in the ultimate
gesture of friendship Mr. Zanes himself will appear to play a few songs and
join the fun. On Friday at 4 p.m., the event is accompanied by snacks and a
party at Housing Works Bookstore Cafe, 126 Crosby Street, between Houston
and Prince Streets, SoHo, 212-334-3324, housingworksbookstore.org; free.
I wish Sylvie could share in our enthusiasm over the 10.2 AFP and 1 kilogram weight gain but really, her excitement was directed at getting mozzarella sticks at the Children's Hospital cafe. We ran into one of Sylvie's favorite nurses from Pediatric Oncology, Danielle, in the cafe while Sylvie was cruising back and forth looking at the enormous fish tank yelling "Hi Nemo!!!!!" It was a very sweet reunion.
We haven't gone upstairs to say hi to the nurses since July; we talk about it; it just hasn't happened yet.
We are one step closer to actually planning a vacation in November, though!
In celebration of yesterday's good news, after preschool and Sylvie's physical therapy today we are headed into the city to also celebrate the Dan Zanes and Friends DVD release with a free screening party at the Housing Works Bookstore Cafe in SoHo. I hope our city friends join us!!! Dan Zanes is going to play a few songs too. For more info, click on The New York Times link or read below.
http://www.nytimes.com/2009/09/25/arts/25kids.html
New York Times
Spare Times: For Children
By LAUREL GRAEBER
Published: September 24, 2009
DAN ZANES (Friday and Wednesday) Both the Housing Works Bookstore Café and
92YTriBeCa are welcoming some fine friends: they¹re celebrating the new live
concert DVD ³The Fine Friends Are Here,² the latest effort from that trusted
friend to children, Dan Zanes. The DVD will be screened, and in the ultimate
gesture of friendship Mr. Zanes himself will appear to play a few songs and
join the fun. On Friday at 4 p.m., the event is accompanied by snacks and a
party at Housing Works Bookstore Cafe, 126 Crosby Street, between Houston
and Prince Streets, SoHo, 212-334-3324, housingworksbookstore.org; free.
Wednesday, September 23, 2009
Happy New Year
Every minute of every day, we're reminded about Sylvie's illness whether it's her crewcut or abdominal scar or wobbly movements. Or the bills, envelopes from Oxford United Healthcare and doctor appointments. it's knowing the pharmacist's voice or being called by him to inquire if we might need a refill for Sylvie's raspberry-flavored magnesium glycinate. Or Dr. Rosen stopping by the house en route home from the Whole Child Center and lining up Sylvie's three new mini My Little Pony's (a present from Tracey, Sylvie's physical therapist) on our arts & crafts style front door because she left them in his office. The continued kindness of friends, neighbors and even strangers like Denise who makes us amazing chicken noodle soup. Or little Suzanne down the street who gave Sylvie the most fancy Barbie ever. Perhaps it's my parent's rabbi waving to Sylvie during Rosh Hashana services and mouthing the words to me "I'm so happy that you are here" or something like that. We were very happy to be there too.
I'm actually not sure if Sylvie is technically in remission; I'm sure she is not considered to be cured --not yet, I'm pretty sure.
On one hand, we appreciate and treasure every single moment with Sylvie but naturally, when she is hiding in her Tinkerbell Tent in the playroom every morning in an effort to not go to preschool, going "boneless" on me as I try to dress her in something other than a tulle princess costume or one of her many pink dresses, trying to escape the potty, or going insane for the first 25 out of 30 minutes of her first private gymnastics class, I'm just like any other mom being tortured by their strong-willed and sassy toddler. It took Michael an hour to try and get Sylvie dressed this morning while Catherine and I sweated it out at a 6 am spin class. I reminded him abut each of our friends' kids who do the same thing. In a way, it's comforting knowing that Sylvie is just like her friends.
Tomorrow morning, Sylvie has her CT scans, an AFP test and appointment with Dr. Harris. I'm very concerned about her continued abdominal pain. If she were healthy and "normal" I'd be worried so naturally it's unsettling to Michael and me. I am eager to see how much she weighs. Sylvie eats an egg and cheese on challah sandwich at least once a day and for the next few days, Blue Smoke mac n cheese which I swear is made with bacon fat and cayenne pepper. I thought I'd hurl when I tried it but Sylvie can't get enough of it. I'd weigh about 25 pounds more if I ate like that. That being said, she eats her fare share of very healthy foods, too, from cashews to cottage cheese, organic fig cookies and cantaloupe.
Michael and I went to yoga tonight. Michael is on pins and needles about tomorrow. Sylvie is in that awful stage where she's nearly ready to lose her afternoon nap. She fell asleep tonight at 7 pm in a Cinderella dress that looks like a 7-layer-cake of blue and silver fabric. We need to get her to drink some apple-flavored barium. Last time, it made her puke. Oh joy.
Speaking of joy, I told her we were going to see the Dan Zanes movie on Friday afternoon (at Housing Works Book Cafe) and that Dan would be there too. She was pretty ecstatic and reminded me of the time he dedicated "Jump Up " to her.
L'Shana Tovah friends and family.
I'm actually not sure if Sylvie is technically in remission; I'm sure she is not considered to be cured --not yet, I'm pretty sure.
On one hand, we appreciate and treasure every single moment with Sylvie but naturally, when she is hiding in her Tinkerbell Tent in the playroom every morning in an effort to not go to preschool, going "boneless" on me as I try to dress her in something other than a tulle princess costume or one of her many pink dresses, trying to escape the potty, or going insane for the first 25 out of 30 minutes of her first private gymnastics class, I'm just like any other mom being tortured by their strong-willed and sassy toddler. It took Michael an hour to try and get Sylvie dressed this morning while Catherine and I sweated it out at a 6 am spin class. I reminded him abut each of our friends' kids who do the same thing. In a way, it's comforting knowing that Sylvie is just like her friends.
Tomorrow morning, Sylvie has her CT scans, an AFP test and appointment with Dr. Harris. I'm very concerned about her continued abdominal pain. If she were healthy and "normal" I'd be worried so naturally it's unsettling to Michael and me. I am eager to see how much she weighs. Sylvie eats an egg and cheese on challah sandwich at least once a day and for the next few days, Blue Smoke mac n cheese which I swear is made with bacon fat and cayenne pepper. I thought I'd hurl when I tried it but Sylvie can't get enough of it. I'd weigh about 25 pounds more if I ate like that. That being said, she eats her fare share of very healthy foods, too, from cashews to cottage cheese, organic fig cookies and cantaloupe.
Michael and I went to yoga tonight. Michael is on pins and needles about tomorrow. Sylvie is in that awful stage where she's nearly ready to lose her afternoon nap. She fell asleep tonight at 7 pm in a Cinderella dress that looks like a 7-layer-cake of blue and silver fabric. We need to get her to drink some apple-flavored barium. Last time, it made her puke. Oh joy.
Speaking of joy, I told her we were going to see the Dan Zanes movie on Friday afternoon (at Housing Works Book Cafe) and that Dan would be there too. She was pretty ecstatic and reminded me of the time he dedicated "Jump Up " to her.
L'Shana Tovah friends and family.
Wednesday, September 16, 2009
Music To My Ears
Sylvie has been to more kinder-rock concerts in the past year than the majority of our adult friends. I enjoy my job and getting to work on interesting projects with interesting artists but my heart explodes with joy watching Sylvie go beserk at home, in the car or at a live show.
Worlds collided last November when I began working on the forthcoming Dan Zanes and Friends DVD "The Fine Friends Are Here" which is finally going to be in stores next Tuesday. My friend Gerard gave us a Dan Zanes CD when Sylvie was born which I've always loved although I have to admit, Michael was a little suspicious about songs whose chorus cry out "Pay Me My Money Back!" In the past 10 months, we've seen them perform at the New Victory Theater in Times Square, the Museum of Natural History beneath the big blue whale, with Ziggy Marley at the Blender Theater and I'm pretty sure at least one other time. Sylvie is obsessed with Dan or as she likes to say in an exotic run-on, "danzanes" whether she's watching his videos on DanZanes.com, his previous DVD "All Around the Kitchen," or in concert. She picks out the subtle nuances like the big orange cat, verses like "tofu lasagna" and the very pretty women who play in his band.
The new DVD is pretty awesome. It's like a live greatest hits concert with 3 brand new animated music videos and a bonus audio CD. So yeah, this is shameless plug because I've worked my butt off on it but because I'm so honored to work on something I like so much that I see makes so many kids, especially my own, so darn happy.
Click here to purchase at Amazon or MusicToday and a free song "The Fine Friends Are Here" (which I'm approved to share with you).
Enjoy. Check out DanZanes.com for tour dates including a stop on 10/3 in Asbury which should be very cool and a great excuse to check out the new and improved town including my childhood friend Mike's super-fabulous shabby chic store Bodega Shoppe.
On a separate kid-approved music topic, Laurie Berkner is performing at a NYC Literacy in the Public Schools event hosted by Alex & Sam on 10/4 in SoHo. Tickets are $20. In order to purchase tickets, please visit: www.alexandsam.net under SPECIALS, you will see a category entitled EVENTS. See you there.
On Target
The first few weeks of school is exhausting for any parent, working or non-working and so forth. It was our 6 year anniversary over the weekend so Michael and I went away to essentially SLEEP while my parents took Sylvie everywhere... children's museum, restaurants, Brooklyn Aquarium & Coney island. This week includes:
Preschool 5 days a week.
Physical therapy 3 times this week
Swim class for the first time in 9 months
Emergency trip to Dr. Rosen for sore tummy and tushy (Sylvie's, not mine!)
School mom meeting
New au pair arrival
Trip to HUMC to get hearing aid molds created
Jewish Holidays
Puppy obedience school
Carpet cleaning (see above re: puppy obedience)
Cooking for Rosh Hashana
And oh yes, I'm still working!
I picked up Caroline, our new au pair, at Newark Airport on Monday afternoon. She pretty much rocks and Sylvie is quite obsessed with her already. I have high hopes that Caroline will have Sylvie eating healthful Brazilian food in no time. Sylvie did try hot chocolate for the first time this morning, rice and beans next!
School is going very well although Sylvie's teachers are scared of Sylvie wiping out or being knocked over by a classmate. These things can definitely happen, especially in a pretty large class, so we need to prevent them while Sylvie continues to get stronger and stronger. I swear Sylvie is twice as determined as her classmates. She has to be. For the next two weeks, Caroline will accompany Sylvie to school. I am hoping that it will not affect Sylvie's sociability. Today went very well though. And Caroline really gets to see what makes toddlers tick.
Tracey, Sylvie's physical therapist, said that Sylvie has surpassed their PT goals with the exception of balance. She's very excited which means that we are too. We talked today about going back down to 2 days a week PT and perhaps by mid-October, being finished altogether. Tracey has become such a regular part of our week and is one of Sylvie's most favorite people that I don't know what we'll do in her absence. I might have to beg her for the occasional playdate. Her level of expertise is really exceptional.
I was so excited to be able to return to the Whole Child Center instead of the Reuten Clinic yesteday. On top of that, Sylvie had a truly wonderful visit to see Dr. Rosen yesterday despite the reason for the visit being Sylvie's constipation and hemorrhoid. Sylvie was transfixed by a mosaic that Dr. Rosen's daughter had made him which he presented to her. Sylvie was ecstatic-- so thrilled that she left the 3 teeny My Little Pony's that Tracey had just given her. We decided to stop the Colace and Senna and try flax oil. Since every day is one more day farther away from chemotherapy her body should be getting back to normal. When we left Dr. Rosen's office, Sylvie said, "That was fun, mommy, can we see Dr. Rosen again soon?"
Both my mom and Michael's mom were VERY excited reading about Dr. Rosen in the New York Times last week and seeing him on the Channel 4 news yesterday. Learn how to make hand sanitizer using natural oils here.
Tomorrow afternoon, Sylvie's getting the molds made for her hearing aids. Since Sylvie told me today that she wanted to show Caroline the Target store and that Barbie also wanted to go, her reward for having gooey stuff put in her ears will be a trip to the big Bullseye.
Preschool 5 days a week.
Physical therapy 3 times this week
Swim class for the first time in 9 months
Emergency trip to Dr. Rosen for sore tummy and tushy (Sylvie's, not mine!)
School mom meeting
New au pair arrival
Trip to HUMC to get hearing aid molds created
Jewish Holidays
Puppy obedience school
Carpet cleaning (see above re: puppy obedience)
Cooking for Rosh Hashana
And oh yes, I'm still working!
I picked up Caroline, our new au pair, at Newark Airport on Monday afternoon. She pretty much rocks and Sylvie is quite obsessed with her already. I have high hopes that Caroline will have Sylvie eating healthful Brazilian food in no time. Sylvie did try hot chocolate for the first time this morning, rice and beans next!
School is going very well although Sylvie's teachers are scared of Sylvie wiping out or being knocked over by a classmate. These things can definitely happen, especially in a pretty large class, so we need to prevent them while Sylvie continues to get stronger and stronger. I swear Sylvie is twice as determined as her classmates. She has to be. For the next two weeks, Caroline will accompany Sylvie to school. I am hoping that it will not affect Sylvie's sociability. Today went very well though. And Caroline really gets to see what makes toddlers tick.
Tracey, Sylvie's physical therapist, said that Sylvie has surpassed their PT goals with the exception of balance. She's very excited which means that we are too. We talked today about going back down to 2 days a week PT and perhaps by mid-October, being finished altogether. Tracey has become such a regular part of our week and is one of Sylvie's most favorite people that I don't know what we'll do in her absence. I might have to beg her for the occasional playdate. Her level of expertise is really exceptional.
I was so excited to be able to return to the Whole Child Center instead of the Reuten Clinic yesteday. On top of that, Sylvie had a truly wonderful visit to see Dr. Rosen yesterday despite the reason for the visit being Sylvie's constipation and hemorrhoid. Sylvie was transfixed by a mosaic that Dr. Rosen's daughter had made him which he presented to her. Sylvie was ecstatic-- so thrilled that she left the 3 teeny My Little Pony's that Tracey had just given her. We decided to stop the Colace and Senna and try flax oil. Since every day is one more day farther away from chemotherapy her body should be getting back to normal. When we left Dr. Rosen's office, Sylvie said, "That was fun, mommy, can we see Dr. Rosen again soon?"
Both my mom and Michael's mom were VERY excited reading about Dr. Rosen in the New York Times last week and seeing him on the Channel 4 news yesterday. Learn how to make hand sanitizer using natural oils here.
Tomorrow afternoon, Sylvie's getting the molds made for her hearing aids. Since Sylvie told me today that she wanted to show Caroline the Target store and that Barbie also wanted to go, her reward for having gooey stuff put in her ears will be a trip to the big Bullseye.
Wednesday, September 9, 2009
Skool Rulez
After a night filled with crying out in pain from the tummy blues, Sylvie was dressed in her fineries for day two of school. Sibel and I walked her to the door of the classroom and without turning back, Sylvie grabbed her teacher's hand, wobbled into the classroom and sat down for circle time. I was so proud and thrilled to see Sylvie so confident and enjoying herself.
I took the train into the city, picked up some office supplies at A.I. Friedman and headed over to the East Village. I stopped into Taralucci y Vino to make some work phone calls and to practically inhale what continues to be the best pain au chocolat I've ever had. From there, I ran into Commodities and picked up some commodities (olive oil, bread, cereal). Ran into an old friend from the Tompkins Square Park dog run and opted to not tell her about Sylvie. I didn't have 45 minutes to explain. Instead, Michael and I headed over to Flushing, again, but this time our fancy US Open tickets actually got us past the front gate. I kept a tally as to how much money we spent on bottled water, sharing fish and chips and so forth but it's sickening. We saw some incredible men's matches and then landed amazing seats in the first ten rows to see Venus and Serena Williams kick some ass. Foremost, they are HUGE. I mean Lawrence Taylor, William "The Refrigerator" Perry huge. I think Serena might be over 200 lbs of muscle.
We had a great day although I did have to park myself on the floor outside the stadium to get some work done. I still plan on writing a letter to the USTA publicity office because they failed to help out Tomorrows Children's Fund when Kathy called them last week. And they failed to help us when we had the Great Ticket Fiasco of 2009 on Saturday. And then we had to pay $18 in order to park so far away that it required a shuttle bus to bring us back to the stadium even though the closer lots were completely empty. Who knew that Lexus owners got free parking; we would have switched cars with my mom.
In the meantime, Sylvie was having a BALL with my mom and dad. They went to Abma's Farm to say hi to the animals. Home for a quick bite to eat and then over to Van Saun Park where not only did Sylvie ride a pony but she also got to tour the little barn and meet all the pony's and miniature horses. Sylvie was on Cloud Nine. While she was thanking my mom for making the "perfect dinner" friends Andy , Catherine and their two daughters came over. Boy we missed them a lot last week.
Clearly we've been affected by huge medical bills since February and grateful that we have medical coverage. But I empathetic for the medical professionals who are also being shafted by insurance companies and seldom brought up in discussions in regards to overhauling the system. Just to be clear, imagine if we had a sick child and had to wait a month for a basic diagnostic test like an MRI... And fortunately, my 'bigger' small company provides a very good insurance plan because that same plan would cost Michael's small business a LOT more. Now you know how we feel about health care.
Until today, the doctor side or how it's affecting the next generation of doctors has been pretty underreported. I was thrilled to see an article in The New York TImes today about medical students who spent time in the field with patients whose treatment was structured around ability to pay, ordering unnecessary tests as protection against lawsuits, hectoring specialists into seeing Medicaid patients, matching patients with prescriptions on Wal-Mart’s $4 list and lastly treating a crazy volume of diabetes, hypertension, obesity, depression. Oh yeah, I forgot-- and in general pediatrics, the practice the student joined saw 45 kids daily per pediatrician. Read it here.
I also wanted to provide the links to The New York Times article on cinnamon oil and antibacterial properties of oils/herbs/etc.
Dr. Rosen is quoted in it. Read it here but if you really want to know more about The Secret of Thieves, check out The Whole Child Center blog.
I had to call there today to ask about Sylvie's um, hemorrhoid. I was so excited to call there instead of the Reuten Clinic! Karen suggested we stay our course with the Colace & senna but add 1 tsp of flax oil 2x daily. Will try tomorrow. I might need to wear safety goggles.
I don't know who is more excited about preschool tomorrow, me or Sylvie!
I took the train into the city, picked up some office supplies at A.I. Friedman and headed over to the East Village. I stopped into Taralucci y Vino to make some work phone calls and to practically inhale what continues to be the best pain au chocolat I've ever had. From there, I ran into Commodities and picked up some commodities (olive oil, bread, cereal). Ran into an old friend from the Tompkins Square Park dog run and opted to not tell her about Sylvie. I didn't have 45 minutes to explain. Instead, Michael and I headed over to Flushing, again, but this time our fancy US Open tickets actually got us past the front gate. I kept a tally as to how much money we spent on bottled water, sharing fish and chips and so forth but it's sickening. We saw some incredible men's matches and then landed amazing seats in the first ten rows to see Venus and Serena Williams kick some ass. Foremost, they are HUGE. I mean Lawrence Taylor, William "The Refrigerator" Perry huge. I think Serena might be over 200 lbs of muscle.
We had a great day although I did have to park myself on the floor outside the stadium to get some work done. I still plan on writing a letter to the USTA publicity office because they failed to help out Tomorrows Children's Fund when Kathy called them last week. And they failed to help us when we had the Great Ticket Fiasco of 2009 on Saturday. And then we had to pay $18 in order to park so far away that it required a shuttle bus to bring us back to the stadium even though the closer lots were completely empty. Who knew that Lexus owners got free parking; we would have switched cars with my mom.
In the meantime, Sylvie was having a BALL with my mom and dad. They went to Abma's Farm to say hi to the animals. Home for a quick bite to eat and then over to Van Saun Park where not only did Sylvie ride a pony but she also got to tour the little barn and meet all the pony's and miniature horses. Sylvie was on Cloud Nine. While she was thanking my mom for making the "perfect dinner" friends Andy , Catherine and their two daughters came over. Boy we missed them a lot last week.
Clearly we've been affected by huge medical bills since February and grateful that we have medical coverage. But I empathetic for the medical professionals who are also being shafted by insurance companies and seldom brought up in discussions in regards to overhauling the system. Just to be clear, imagine if we had a sick child and had to wait a month for a basic diagnostic test like an MRI... And fortunately, my 'bigger' small company provides a very good insurance plan because that same plan would cost Michael's small business a LOT more. Now you know how we feel about health care.
Until today, the doctor side or how it's affecting the next generation of doctors has been pretty underreported. I was thrilled to see an article in The New York TImes today about medical students who spent time in the field with patients whose treatment was structured around ability to pay, ordering unnecessary tests as protection against lawsuits, hectoring specialists into seeing Medicaid patients, matching patients with prescriptions on Wal-Mart’s $4 list and lastly treating a crazy volume of diabetes, hypertension, obesity, depression. Oh yeah, I forgot-- and in general pediatrics, the practice the student joined saw 45 kids daily per pediatrician. Read it here.
I also wanted to provide the links to The New York Times article on cinnamon oil and antibacterial properties of oils/herbs/etc.
Dr. Rosen is quoted in it. Read it here but if you really want to know more about The Secret of Thieves, check out The Whole Child Center blog.
I had to call there today to ask about Sylvie's um, hemorrhoid. I was so excited to call there instead of the Reuten Clinic! Karen suggested we stay our course with the Colace & senna but add 1 tsp of flax oil 2x daily. Will try tomorrow. I might need to wear safety goggles.
I don't know who is more excited about preschool tomorrow, me or Sylvie!
Tuesday, September 8, 2009
First Day of School
The first day of school is always a rite of passage. For us, today was a little milestone. Sylvie was so excited to go to school again with Sibel & me that we were mere distractions to her doing all sorts of different jobs (that's what they're called in the Montessori curriculum). I was a little terrified of the classroom packed with kids and parents. Sylvie did not share my concern. She's very wobbly but managed to carry her trays filled with shells, pom poms and marbles to the table. And despite knowing there is a hearing issue, it would really be hard to detect unless you were talking directly to Sylvie. Then again, she might just come across as an inattentive toddler.
After school, I ran home to do some work while Sibel & Sylvie went to the playground where they ran into our new neighbors and friends. Shortly thereafter, I cruised back to the school to meet Sylvie's teachers, the school director, one of the APNs and the educational coordinator from the Tomorrows Children's Institute. I asked them to come in and talk about Sylvie's condition and any special needs in the classroom, guidance as to how to talk to other children and so forth. It was a great meeting. The issues are: Mobility & Hearing, kids bumping into Sylvie, kids asking why Sylvie has very little hair, flu & chicken pox. I mentioned that Sylvie is sure to talk about hospital things, too. Sylvie knows that she was sick and that there was a bump in her tummy.
I picked up another copy of Todd Parr's "It's Okay to be Different" for the classroom. Sylvie loves it and there's a page dedicated "It's ok to not have hair."
Because Sylvie was so good on her first day of school, we went over to the Hello Kitty store. The owner was so thrilled to hear that she's back in school that she gave Sylvie a Hello Kitty backpack. I got teary eyed. She got teary eyed. We all hugged. The other customers just looked at us and smiled. It was obvious why we were all embracing.
Sylvie is sleeping with it right now.
Prepping for Labor Day
Instead of going to Vermont this weekend, we hung around to be close to friends and family. And catch a little tennis. Sylvie's stomach was a little funky anyway which we soon realized was something utterly icky-- a hemorrhoid! There I am, on the Thursday night of a holiday weekend describing this 'thing' in an email to Dr. Rosen. I have seen many disgusting things in 8 months but this is definitely close to the top of the list.
On Friday night, we went to a restaurant called Harvest in Closter that was pretty good. The service was a little too fast but otherwise, a winner meal. Would definitely go back. Thank goodness for GPS.
We dropped off Sylvie and the dogs with Grannie Anie & Pop Pop on Saturday morning and headed over to Flushing Meadows. I'll spare you the details but our seemingly awesome tickets ended up being 'already used' and a total scam, Michael nearly got in a fight with another scalper trying to buy new tickets, I saw 4 cops getting ready to bum rush them, we got another pair of tickets that also didn't work and made the best lemonade ever by, as a last resort, buying 2 Mets tickets for $50. Ended up being a great day. Sylvie went swimming with them and was proud to show off the Cinderella bathing suit that Samantha gave her. Sylvie had a ball but frequently had full on kniptions because, essentially, her ass was on fire.
We were supposed to go to a party in Connecticut on Sunday but our fear of Sylvie being a monster after sitting in the car for 2 hours and the unspeakable ass situation, forced us to cancel. I was so looking forward to going but didn't want to be a spectacle. I mean, we already are with the bald child but also wanted to show off Sylvie's happy self. So instead, we stayed local and dropped by the home and pool of "Nurse Tenderheart" who has invited us over a few times. I felt badly for the short notice but Rita was happy to have her little friend splashing in her pool. She was so excited to see Nurse Tenderheart and kept saying her name over and over. Sylvie was totally obsessed with the floatie and called it a Magic Carpet like in "Aladdin." She fell asleep in the car about :30s after we left which gave me a minute to run into Walgreens and buy for her Preparation-H. We had an impromptu BBQ Sunday night where Sylvie and her friend Izzy were dressed like princesses and alternated being new best friends and frenemies.
Yesterday, we joined a few friends at Indian Trail for swimming and BBQ-ing. When I say that Sylvie was on Cloud Nine, I mean she was on Cloud 10. There is no greater joy for me than to see Sylvie thrive and be happy. Watching her kick her legs in the pool, sit beside me in a paddleboat wearing a PFD, hanging from the top of the big slide and obsessing over my friend Shelley's sparkly sunglasses and nail polish was really uplifting. The teenage girls stared a little at her and I had to stop myself from saying anything because Sylvie just thought they were looking at her fancy dress :-). Sylvie didn't take a nap all day so it was no surprise that after three days of swimming and barely any napping, she fell asleep before we even drove out of the parking lot.
Wednesday, September 2, 2009
Forever Starts Today
My mom came by this morning and took Sylvie to Abma's Farm and then the playground at Willard School. My mom took a chance and did not pack a stroller since Sylvie's been trying to walk everywhere. Sylvie did not let her down and showed off her newly regained maneuvers. I call it the "old man shuffle." Every single day though, she re-learns how to use her feet, bend her knees and move forward one step at a time. Like us.
We took Sylvie to Amano for lunch although Sylvie was being pretty nuts. As soon as we walked in, I heard someone calling my name in the back and there were my friends Gabrielle, Steve, Andrea and their collective 4 kids (baby Elisabeth was at home). Sylvie's initial greeting was her crazy self but she is VERY respectful of our friends and more important, her friends' parents and calmed down. I went to leave because I'm sick of rewarding crappy behavior but once outside the restaurant, Sylvie asked to go back. So we sat down at a table and quickly ordered lunch. I showed Sylvie the 'sparkly brick oven where the pizzas are made' and she was mesmerized. And ate 1/2 a pizza. From there we went over to Morning Glory, picked out Hello Kitty stickers and then two Scooby Doo pens for her audiologists at HUMC. Without a nap, we proceeded to the Children's Hospital where Sarah and Meghan were waiting to repeat the hearing exam.
Once again, Sylvie ran, as if in Chariots-of-Fire slow motion to Sarah and we all squeezed into the audiology booth for more fun and games. Seeing Sarah with Sylvie is a wondrous sight-- they are a little team and truly adore one another's company. Sarah would go to the moon and back for Sylvie. It's been like that since early February when Sarah first tried to do hearing tests on a very sick and angry Sylvie. She spent months getting into Sylvie's good graces and clearly succeeded. Sylvie gave both Sarah and Meghan the special Scooby Doo pens with a revolver of interchangeable ink colors and built in highlighter. When we were done, we went into another room in the audiology lab so that Sylvie could watch Barbie Swan Lake and dazzle Sarah with her newly-acquired ballet moves while we discussed the results. Sarah got choked up and teary-eyed and left for a second.
Upon returning, she sat down and explained to me that Sylvie's test results today were the same as Monday's. The Cisplatin chemotherapy destroys some of the fine hairs in the inner ear and causes a loss in hearing. We had been told there was a risk of some hearing loss but really, I wish they would have just come out and said, "She will lose her hearing and most likely need hearing aid devices." Maybe they did and we ignored it. In actuality, everyone we talked to who knew a child treated with Cisplatin had major hearing loss and we told ourselves, "Not our kid." In Sylvie's case, the damage is in both ears and enough loss in both ears where, because she's a toddler, there is concern about how her speech will develop in addition to her ability to hear high frequencies and differentiate sounds from a crowd... or a classroom... or a public swimming pool with screaming kids. You get the picture. This is where Sylvie being such a verbal toddler is a very good thing. It would be harder to 'correct' if she was younger and non-verbal. Technically, it's considered "borderline" but based on her age, we need to employ any corrective measures that we can. The good news is that it will not get worse. Hooray?
I asked Sarah why we don't notice any hearing loss in Sylvie and trust me, we try whispering and all of our own sorts of at home tests. The answer is background noise.
Over these last 8 months, I have tried to not cry in front of Sylvie but I just couldn't help but get weepy. The notion of Sylvie 'not remembering' any of her early childhood illness is clearly inaccurate because she will be reminded of it pretty much constantly. The good news, although it is not fixable with surgery, it's treatable with hearing aids in both ears. Forever. That being said, forever is a long time and I'm glad right this very second that we're talking about Sylvie and forever.
Sarah showed me a sample and the new hearing aids for kids which come in all ranges of colors and patterns. My mind was racing to school pictures, ballet class, hanging upside down from monkey bars. I felt badly for Sarah who at this point was trying not to match my tears. We talked about the next step which includes seeing a pediatric ENT (darn I wish Dr. Scott was here instead of at CHOP right now; calling Dr. Rosen first thing in the morning), making molds, letting Sylvie pick out a pattern (hopefully they come in pink metal flake) and figuring out if insurance will pay even a dollar of the $6,000 tab which is very VERY unlikely and HOLY SHIT a lot of money.
We have 2 meetings in the next 7 days with Sylvie's new teachers. Forever starts today.
We took Sylvie to Amano for lunch although Sylvie was being pretty nuts. As soon as we walked in, I heard someone calling my name in the back and there were my friends Gabrielle, Steve, Andrea and their collective 4 kids (baby Elisabeth was at home). Sylvie's initial greeting was her crazy self but she is VERY respectful of our friends and more important, her friends' parents and calmed down. I went to leave because I'm sick of rewarding crappy behavior but once outside the restaurant, Sylvie asked to go back. So we sat down at a table and quickly ordered lunch. I showed Sylvie the 'sparkly brick oven where the pizzas are made' and she was mesmerized. And ate 1/2 a pizza. From there we went over to Morning Glory, picked out Hello Kitty stickers and then two Scooby Doo pens for her audiologists at HUMC. Without a nap, we proceeded to the Children's Hospital where Sarah and Meghan were waiting to repeat the hearing exam.
Once again, Sylvie ran, as if in Chariots-of-Fire slow motion to Sarah and we all squeezed into the audiology booth for more fun and games. Seeing Sarah with Sylvie is a wondrous sight-- they are a little team and truly adore one another's company. Sarah would go to the moon and back for Sylvie. It's been like that since early February when Sarah first tried to do hearing tests on a very sick and angry Sylvie. She spent months getting into Sylvie's good graces and clearly succeeded. Sylvie gave both Sarah and Meghan the special Scooby Doo pens with a revolver of interchangeable ink colors and built in highlighter. When we were done, we went into another room in the audiology lab so that Sylvie could watch Barbie Swan Lake and dazzle Sarah with her newly-acquired ballet moves while we discussed the results. Sarah got choked up and teary-eyed and left for a second.
Upon returning, she sat down and explained to me that Sylvie's test results today were the same as Monday's. The Cisplatin chemotherapy destroys some of the fine hairs in the inner ear and causes a loss in hearing. We had been told there was a risk of some hearing loss but really, I wish they would have just come out and said, "She will lose her hearing and most likely need hearing aid devices." Maybe they did and we ignored it. In actuality, everyone we talked to who knew a child treated with Cisplatin had major hearing loss and we told ourselves, "Not our kid." In Sylvie's case, the damage is in both ears and enough loss in both ears where, because she's a toddler, there is concern about how her speech will develop in addition to her ability to hear high frequencies and differentiate sounds from a crowd... or a classroom... or a public swimming pool with screaming kids. You get the picture. This is where Sylvie being such a verbal toddler is a very good thing. It would be harder to 'correct' if she was younger and non-verbal. Technically, it's considered "borderline" but based on her age, we need to employ any corrective measures that we can. The good news is that it will not get worse. Hooray?
I asked Sarah why we don't notice any hearing loss in Sylvie and trust me, we try whispering and all of our own sorts of at home tests. The answer is background noise.
Over these last 8 months, I have tried to not cry in front of Sylvie but I just couldn't help but get weepy. The notion of Sylvie 'not remembering' any of her early childhood illness is clearly inaccurate because she will be reminded of it pretty much constantly. The good news, although it is not fixable with surgery, it's treatable with hearing aids in both ears. Forever. That being said, forever is a long time and I'm glad right this very second that we're talking about Sylvie and forever.
Sarah showed me a sample and the new hearing aids for kids which come in all ranges of colors and patterns. My mind was racing to school pictures, ballet class, hanging upside down from monkey bars. I felt badly for Sarah who at this point was trying not to match my tears. We talked about the next step which includes seeing a pediatric ENT (darn I wish Dr. Scott was here instead of at CHOP right now; calling Dr. Rosen first thing in the morning), making molds, letting Sylvie pick out a pattern (hopefully they come in pink metal flake) and figuring out if insurance will pay even a dollar of the $6,000 tab which is very VERY unlikely and HOLY SHIT a lot of money.
We have 2 meetings in the next 7 days with Sylvie's new teachers. Forever starts today.
Tuesday, September 1, 2009
Time Flies
We're on Cloud Nine finally having received some good news. Sylvie is walking all over the place. When she zoomed through Whole Foods last night, I couldn't recall the last time she didn't make me carry or push her in a cart. I'm not sure where the lazy toddler part left off and the sick kid began. In any case, she was so happy to pick out a piece of salmon and find her favorite Cheesecake Ally no sugar added mini.
Mind you, once most kids are in a big kid bed, they hop out and creep into their parent's rooms. Not our Sylvie because she hasn't been walking! That being said, it took us 90 minutes just to get her to sleep because she refused to stay in bed. Tonight posed no problems.
My left bicep is stronger than my right because of carrying her all these months and both Michael & I have totally ailing backs from all this schlepping. Poor Michael had to carry Sylvie in a backpack all weekend in Vermont. After ascending the stairs in Bear Pond Books on Saturday he told me that he does not need to see every book store in the state. He has a knack for being with Sylvie when she poops in public too. Poor guy. Today it was at the Paramus Park Mall after dinner where Sylvie was dressed in her Alice in Wonderland costume. I'm not sure if it was before a trip to Claire's Accessories or the merry-go-round. Let's just say when they finally arrived home, Michael was nearly in tears. I took over from there so he could go for a run.
Tracey (PT) came over this afternoon and Sylvie was so proud to show off her mad walking skillz.
Tomorrow we have to repeat the hearing tests because Sylvie has some hearing loss and we need to identify it a little better and see what, if any, adjustments we'll need to make. It's not apparent to Michael nor me but the diagnostics definitely indicate a significant change since February.
One of the last things Sylvie said before going to bed this evening was that her friends Jette and Nevada make her feel better. You know what, they make me feel better too.
Mind you, once most kids are in a big kid bed, they hop out and creep into their parent's rooms. Not our Sylvie because she hasn't been walking! That being said, it took us 90 minutes just to get her to sleep because she refused to stay in bed. Tonight posed no problems.
My left bicep is stronger than my right because of carrying her all these months and both Michael & I have totally ailing backs from all this schlepping. Poor Michael had to carry Sylvie in a backpack all weekend in Vermont. After ascending the stairs in Bear Pond Books on Saturday he told me that he does not need to see every book store in the state. He has a knack for being with Sylvie when she poops in public too. Poor guy. Today it was at the Paramus Park Mall after dinner where Sylvie was dressed in her Alice in Wonderland costume. I'm not sure if it was before a trip to Claire's Accessories or the merry-go-round. Let's just say when they finally arrived home, Michael was nearly in tears. I took over from there so he could go for a run.
Tracey (PT) came over this afternoon and Sylvie was so proud to show off her mad walking skillz.
Tomorrow we have to repeat the hearing tests because Sylvie has some hearing loss and we need to identify it a little better and see what, if any, adjustments we'll need to make. It's not apparent to Michael nor me but the diagnostics definitely indicate a significant change since February.
One of the last things Sylvie said before going to bed this evening was that her friends Jette and Nevada make her feel better. You know what, they make me feel better too.
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