Life With Eliza Grace

In Between

2012-01-16T21:47:00.001-05:00

My mother is 89 and Eliza is almost 6. They are both deeply loved and cherished. And they can both be a handful.

Luckily, I have 2 hands.

There seem to be certain genetic traits that have passed from grandmother to granddaughter. They are both, shall we say, stubborn, perhaps set in their ways, often very, very certain they are absolutely right and they share a deep seated dislike of the medical profession (although each oddly has one doctor they actually like, but just one each).

Trying to care for both of them can be, well, trying at times. I am pretty much midway in age between my mother and Eliza (OK, well a tad closer to my mother's age, but let's not quibble). I've never liked the phrase "sandwich generation" but I suppose it applies. The type of sandwich depends on the day. Some days things are going smoothly and it's a nice crunchy messy BLT that I can sit back and enjoy. Other days it is more of a sticky peanut butter (no jelly) sandwich and it is all one can do to hold those two pieces of bread together.

Some people question my choices for Eliza when it comes to how she spends her free time and suggest she would benefit from classes or sporting activities on the weekends. Rather than join a gym class or take swimming lessons on the weekends, we spend time with my mother. To me it is more important that Eliza get to know her grandmother and spend time with her now. While none of knows when the end is near, as mother points out, at 89 years old you can do some basic math :) I think it is also healthy for my mom to have Eliza near her. The change in my mom's spirit is almost visible as Eliza sits on her lap explaining the intricacies of the world of fire and water Pokemon or teaching my mother how to use an iPad. Watching the iPad lessons alone is worth foregoing some Saturday ballet lessons.

So the next time you want to get all cranky on me that Eliza isn't learning team spirit by playing soccer on the weekends, remember that she is learning compassion by helping her Nana get her cane and empathy by comforting her Nana when she doesn't feel well. Eliza is learning that the older generation is not to be cast aside and forgotten, but rather to be loved and cherished. And she is learning that you can teach an old dog new tricks. Just ask her Nana who knows all about Pokemon.

Santa Is Not in the North Pole

2011-12-18T09:21:00.000-05:00

Contrary to popular belief, Santa does not live in the North Pole.

He lives in New York City, because really, it is the most exciting place to be at Christmas. Why would Santa want to hang out with a bunch of polar bears, when you can have this place as your home base:

Eliza will tell you that to get the new North Pole, you only need to take two subways:

And make sure everyone on the subway knows what you want from Santa, just in case they would like to get you a Wii:

Instead of navigating snowy footpaths to Santa's house, you just have to make your way through the evening commuters at the 34th Street station:

And that's where you find Santa's house:

First, it is important to check out how Santa has decorated his house at Macy's:

Make sure everyone in your family has their reindeer antlers on:

Be nice to Santa's elves and give them a thumbs up:

It is important to give your list some serious thought, in case there are last minute revisions:

Double check that you family elves are looking cheery for Santa:

Try to act sincere and deserving while Santa is reading your list:

Explain in detail what a Wii is to Santa:

Approach Santa with reverence:

Explain the whole Wii thing again just in case he didn't get it the first time:

And then act pleased as punch when he tells you that you have been good and this might result in a Wii being delivered to your apartment, via the fire escape, which frankly is far safer for Santa than squeezing down a chimney:

Be sure to explain to Super Pete what a Wii is so that he can help you play with it:

And last, but not least, eat a dirty water hot dog from a street vendor to bring your Mama the best Christmas present since you were born:

And that my friends is how we find Santa in New York City!

Eliza's Relationship with Santa

2011-12-05T22:55:00.001-05:00

2006: Fits in the palm of Santa's hand:

2007: Deer in the headlights:

2008: Abject terror and she leaps from Santa's lap (scaring the bejesus out of Santa):

2009: Starting to think this isn't so bad, but certainly not talking to Santa:

2010: Quite thrilled with the old guy and even chatted it up with Santa:

And an added bonus for 2010, the Richter Cousins in their Ugly Sweaters:

2011: The dynamic changed.

Eliza realized that Santa was the key to getting a Wii, and World Peace.

She was very big on World Peace and repeatedly pointed out to Santa that this was an excellent gift, because she loves everyone and everyone should love each other, right?

Luckily for us there was NO ONE at Santaland (I am not revealing our secret since next year the whole world will be there). So Eliza had a bit of time to chat things up with Santa, explain what a Wii was, give him a hug, point out that she was wearing Rudolph the Rednosed Reindeer antlers (surely another reason for Santa to bring her a Wii), and even give him a few kisses. Eliza also decided to give him a thumbs up (over and over again). Anyone who is familiar with Sonic the Hedgehog, knows that this is a classic Sonic move. Clearly Eliza was reinforcing the idea that a Wii with a Sonic game would be the best Christmas present ever.

The Richter Family photo expanded this year to include Peter, Dana, Matthew and Adriana. A good Santa crew!

We splurged and paid the extra $10 for the family photo in front of the trees. The elves get very testy when you try to take your own photo in front of the special Santa trees.

We capped the evening off with a pedicab ride.... but that is a whole other saga for another post.

Eliza's Papa

2011-11-19T23:52:00.001-05:00

Today marks the third anniversary of my Dad's death. It seems hard to believe that three years have passed so quickly.

My Dad made almost daily trips to the NICU from New Jersey with my Mom to visit Eliza during her 100 days in the NICU.

When Eliza came home from the NICU, Daddy delighted in spending time with her.

Daddy enjoyed Eliza's first Christmas and she clearly loved him.

One of Daddy's favorite places was sitting under the bell tree in our yard on Saba. While some people may find it irreverent, one of Eliza's favorite places at our house is sitting on Daddy's bench under the same tree. I am sure that Daddy delights in her visits and is smiling down on her whenever she sits on his bench and enjoys sunshine.

I still miss him everyday.

It's That Time of Year Again

2011-11-06T21:44:00.000-05:00

Yes folks, it is Prematurity Awareness Month.

Annually I am compelled to post on this topic, to let folks know that prematurity sucks.

So tonight I started to write my blog post on this topic, rambling on about how babies need 40 weeks of baking (34, 35, 36, 37 weeks are not enough folks) and that wishing your baby comes "early" (even by only a few weeks) to fit your personal or social schedule is not only selfish, but just plain old stupid.

I started to write about the emotional, psychological and financial toll having a premature child takes on parents and their extended circle of friends and family.

I started to write about how annoying it is to hear people say it was "God's will" or I was "chosen" by some higher being for this special role in life.

And then I realized, that this all sounded oddly familiar. Really familiar.

So I looked back to last year and guess what? I already wrote almost the exact same post I had drafted for this year. You can read last November's "A Public Service Announcement" by going to the link or reading below:

November is Prematurity Awareness Month.

I think the main thing we need to be aware of about prematurity is that it sucks.

It really sucks.

Prematurity takes what should be a normal infancy and turns it into a journey into medical hell. It robs both parent and child of a normal infancy. Instead of filling baby books with milestones like "smiled for the first time" you make note of milestones like "weaned off ventilator." You and your baby are robbed of quiet, private moments. Instead, the two of you spend those moments in a room filled with strangers, doctors, nurses, monitors, alarms and machinery you didn't even know existed when you filling out your baby registry. People tell you well intentioned, yet terribly stupid things, like "things happen for a reason," "God doesn't give you more than you can bear," "at least you never got stretch marks since the baby was born so early" or "you're lucky you get to sleep at night since the baby is in the hospital."

You wake up day after day wondering if this is the last day you will see your child.

Prematurity financially devastates families. Contrary to popular belief, there is no insurance fairy who pays the tens of thousands of dollars of co-pays or the endless "uncovered" things like speech therapy or adaptive equipment. Even "good" insurance isn't "good enough" to cover prematurity. Instead of paying for a babysitter, you have to pay for a nurse to watch your child, instead of daycare, you have to hire a nanny, instead of working full time you have to take a leave or work part time because of the sheer number of medical appointments your child will have after leaving the NICU.

Prematurity is isolating, physically and emotionally. Because of the baby's fragile immune system, you have to limit to whom and what the baby is exposed. Of course friends and family assume you are simply nuts, because, as they will all tell you over and over, everyone needs to be exposed to germs. Actually not. It is emotionally isolating because no one, other than the other shipmates on the SS Prematurity have even a clue as to what it is like to take your infant to a minimum of one doctor visit every week, not have a single day for just you and your baby because three therapists show up everyday, on schedules that are convenient to them not you and your baby.

Prematurity devastates families emotionally (see all of the above).

So what can we all do to help make this suck less?

Well, you can donate money to various charities in the hope that some of the research they fund might end prematurity. Or you can do something a bit closer to home and more personal. Call your local NICU or its support group and ask what you can do to make this whole thing suck less. Small things can make prematurity suck less. For example, my mother, my aunt and I make blankets and hats for the babies. There are dozens and dozens of babies that have worn my aunt's tiny "wee caps" and many who have been warmed by one of my mom's blankets and even though my blankets are far from "perfect" they are made with love. Some people make isolette covers, some people donate disposable cameras for parents to leave at the baby's bedside (yes we do take photos of our babies in the NICU), other folks donate gifts cards for coffee or gasoline to be given to those in need in the NICU. Others donate story books to the NICU (yes we read to our babies the same as you would at home). If you are feeling really generous, ask if you can send over bagels and coffee for a Sunday brunch for the parents and nurses (they get hungry too). Not all parents in the NICU can afford NICU clothes for their baby, so think about donating some NICU shirts or preemie clothes to your local NICU.

Even if you can't prevent premature births, you can make prematurity suck less for the parents and the babies who are in the NICU right in your hometown.

So this November, let's see if we can all make prematurity suck less.

And if you are still confused about why prematurity sucks, you can compare these photos. While Eliza is beautiful to me in both photos, you tell me which way you would like your baby, and all babies, to begin their lives:

Eliza at 1 month after her due date (a/k/a a "newborn"):

Eliza as a 4 day old newborn:

Are you getting the idea? I sure hope so.

Pumpkin Sail

2011-10-24T23:59:00.000-04:00

While New York City may not conjure up images of your traditional Trick-or-Treating, the city does have the annual Pumpkin Sail... bet your 'burb doesn't have this:

Way better than a scare crow on the front lawn if you ask me!

So what is a Pumpkin Sail?

Well first you need a couple of teenagers willing to don hip-waders who load the pumpkins onto rafts and light the candles:

Why neither kid is wearing a sweater in 50 degree weather is beyond me and I have no explanation for the kid in the sleeveless T-shirt.

The pumpkins are brought to the Harlem Meer by the ~~children~~ mother's who have done their best to carve the pumpkins. Some were pretty elaborate, even complete with pumpkin headdresses:

~~Eliza's~~ My pumpkin was more of a purist pumpkin and can be seen at the far right:

Then you need a Witch rowing a kayak. This is a critical role. Without the Witch, there is no sailing. We were fortunate to have a happy Witch:

And when the sun sets, off goes the Witch, with her pumpkin parade in tow:

But really the best part of the whole affair are the smiles:

Of course, no event is complete without a little marital discord between Eliza and Otto, because you know this face says: "Dude if you keep messing up this photo I am so not marrying you."

And if you are still wondering what Eliza's is this Halloween, why she the happiest little goldfish in the pond!

Big Bones

2011-10-13T22:29:00.000-04:00

Not to worry, Eliza has not suddenly morphed into a "big boned" person. But, she did get to live out a dinosaur-loving-budding-paleontologist's dream and take a Behind the Scenes evening tour at the American Museum of Natural History and visit the Big Bone Room and the Preparation Room. The place was awesome and the tour was even more special since her dino-loving friend Archie and his mom joined us on the adventure.

The place is pretty impressive and the bones housed in the Big Bone Room are 70 million to 210 million years old. There are over 3 million dinosaur specimens at AMNH, and only about .02% are on display. These are some specimens that no one, except those lucky enough to take the tour, get to see:

We met one of the AMNH Preparators (what a great job title!). This guy has an awesome job since he gets the first peek at the fossils when they arrive at the museum, or in some cases, finally taken out of storage since there are thousands of specimens that have yet to be examined. The Preparator essentially "unwraps" the fossil from its casing of plaster and earth and prepares the fossil for further examination. Archie chimed in with some good questions for the Preparator about the tools he used for his job.

Our other tour guide was Carl, the Paleontology Collections Director. Eliza asked Carl some pointed questions and advised him that Triceratops was related to Chasmosaurus and Protoceratops (which they are). Not bad for a five year old!

In addition to the big bone collection, AMNH has a huge collection on loan from Mongolia, including Oviraptors with their eggs found in the Gobi Dessert. The Gobi Dessert fossils are bleached white and the consistency of chalk. Here is Carl with an Oviraptor fossil:

Did I mention Carl was there too?

We really liked Carl :)

If you are a lover of all things dino and paleontology, I highly recommend a night time Behind the Scenes tour at AMNH. You can see more about the tour here.

Since I left my camera at home, the photos above are courtesy of some other kind folks.

Children of the Apples

2011-09-20T08:54:00.000-04:00

Let's be honest, even though this is my daughter and she is pretty adorable, is this not a "Children of the Corn" look she is giving me? Then again, the glare may have been designed to scare off the other pickers from the tasty Gala apples in the orchard.

Eliza has perfected the art of animal feeding and we only suffered the loss of some grain when we were attacked by the psychotic Emu. The goats however, were pretty happy to see us:

The alpacas were in a good mood (thanks to the food) and thankfully did not spit at us as they tend to do when annoyed incessantly by small children and large adults:

We found the actual Three Little Pigs and are pleased to report that all three houses were standing tall and there were no wolves in sight (note to the crafty people out there, it is amazing what you can do with an old dog house!):

Eliza was accompanied on her apple picking trip by a few of her "men." They were all very compliant to her demands, orders and instructions but she did let Otto have some alone time "driving" the old tractor:

Eliza did take command of the life-size toy tractor and, like her grandfather, was quite the driver, although I didn't have the heart to tell her she was driving on the wrong side of the road:

The tractor ride dramatically improved when J joined Eliza and provided the appropriate tractor sound effects:

Otto and Eliza were pretty excited to carry the empty half bushel bags, but not so much when they were "heavy" ("heavy" meaning one apple in each bag):

And no trip to a farm in the fall is complete without a good maze to run through. Eliza and B had a delightful time running through the maze and taking turns "winning" even though they are both winners:

Welcome to Kindergarten!

2011-09-11T21:18:00.000-04:00

It's official. Eliza is a Kindergartner! Eliza was none too pleased having to wake up an hour earlier than she did for preschool, but once she realized she got to wear her new backpack and meet her new friends, she was pretty excited.

Each morning for preschool, our building super and good friend, Zeljko, waits with us for Eliza's bus. Since we were walking to school the first couple of days, she got a good luck hug and kiss from her buddy, who did not spill his Starbucks Vente coffee even as Eliza barreled into him!

Eliza's enthusiasm was pretty apparent as she ran down the street (diligently avoiding the cracks and lines since surely she does not want to break her mother's back or spine!).

Eliza is pretty good about playing freeze tag, so I didn't have to worry about her getting too far ahead!

Eliza had been to visit her school for orientation earlier, but the century old building looked grand in the morning sunlight. She was so excited to see her new "big girl" school as we reached the corner.

Thanks to the confidence that Eliza gained in her two years at Gramercy School she was happy to enter her new classroom, found her coat hook in the closet and her cubby to store her supplies, introduced herself to her two teachers and her aide and cheerily announced to her classmates "I'm Eliza Grace and I am happy to meet you!" She gave me a kiss good-bye and said she would see me after school.

Who would have thought that my tiny 1 pound 4 ounce baby, who was given a poor chance of survival, who overcame so much adversity in the NICU, who was delayed in achieving every milestone a baby and child should reach, would be going to school with her typical peers, with confidence and a smile on her face.

A whole new adventure begins.

Remember and Reflect

2011-09-11T00:01:00.000-04:00

We're Back!

2011-09-06T22:52:00.000-04:00

Thanks to Hurricane Irene our stay on Saba was extended by a week. Irene paid us a visit early last week, before it headed to New York and Jet Blue decided is was prudent to cancel our flight rather than flying into "weather" (isn't everything out there "weather"?), but I digress.

Eliza had a grand time with her Saba cousins, German cousins and Saba Best Friends. I had a pretty good time too with family and wonderful neighbors. At last count we barbecued about 40 pounds of ribs, 50 pounds of chicken, untold ears of corn and I even made fungi (polenta to you Americans) with the help of my neighbor Melisa.

We took a nice walk on the Dancing Trail before Hurricane Irene paid us a visit. There are spectacular views and Eliza was quite good about not falling off the cliff!

We also ventured into the world of traditional handline fishing off of the Fort Bay Pier with some cousins. Eliza caught her first fish and while it was definitely in the "catch and release" size category, it was a bit bigger than the fish her mentor Leonardo caught.

Hurricane Irene was nothing compared to Earl of last year. There was a bit of wind, but no so much as to stop the Hell's Gate Women's Club from our usual 6 pm cocktail hour.

Eliza's swimming has improved and she was finally willing to give up her tube (unless it was for relaxing!). We split our time between the Fort Bay and Cove Bay. The Cove Bay was nice until it was inundated with seaweed. So if you don't believe in Global Warming, just visit any Caribbean island and you can see that they are all awash in acres and acres of seaweed. The kids didn't seem to mind though!

She does look a bit like she is adrift off the Titanic though!

Beers on the beach:

Filling a dingy with the seaweed:

Sargassum Seaweed from the Sargasso Sea in the mid-Atlantic (the only "sea" not to surround a body of land) is all over the Caribbean, likely due to a change in currents and the warmer temperatures:

Despite the seaweed Eliza and her best buddy Maya enjoyed themselves everyday and particularly liked their sleepovers and were inseparable everyday.

While Eliza has not quite outgrown her hammock, I think it is fair to say she has outgrown taking a bath in the kitchen sink:

But despite the seaweed, the hurricane and the too tiny kitchen "tub" we enjoyed some beautiful rainbows and spectacular views everyday from our front porch.

Good-Byes

2011-08-08T20:35:00.001-04:00

Today Eliza said good-bye to her Occupational Therapist and the staff at the hospital where she has been receiving OT for over 3 years. Until last year Eliza also received Speech Therapy and Physical Therapy at this same center. I don't know if Eliza realizes we are only coming back to visit now and again, but I do know she will miss the lollipops and the snacks from the Child Life Staff.

When Eliza started therapy at this center, she could hardly walk, couldn't speak and was in a seemingly constant state of sensory disarray. Now she can talk your ears off, can climb a 15 foot rock wall and can write her letters in a pretty-close-to-legible fashion.

For over three years we went to this center four days a week. While I have looked forward to this day for a very long time, I know I will miss the comfort of what has been kind of a second home for 15 hours a week.

Preschool ends this week too. I suspect I will be the one to cry, not Eliza.

And in other less dramatic news:

Did you see how we placed in the Blog Contest: Top 25 Single Parenting Blogs

Not too bad, eh?

My Personal 20 Step Guide to Surviving the Kindergarten IEP

2011-08-01T00:22:00.000-04:00

I was asked recently to provide my thoughts on preparing for and surviving Eliza's IEP as she transitioned from preschool to Kindergarten. Much of relates to life in New York City, but may be helpful if you live outside of the city or state.

And as always, your mileage may vary:

1. Get a neuro-psych evaluation early in the fall. It gave me a good sense of Eliza's strengths and weaknesses and helped me to evaluate schools with that knowledge in hand. Of course Eliza improved and changed in the ensuing months, but the report was a good guidepost for me.

2. Contact your local Community Board about upcoming zoning changes and the opening of new public schools. They can give you a sense of what is available in your district, although I would note that there is no guarantee that a child falling within CSE (New York's Committee on Special Ed) is necessarily placed in your zoned school.

3. In public schools tours are often given by a PTA member so asking about their child's experience can be helpful. If you can tour with another parent you are friends with or acquainted with, it can be helpful since you can compare notes and discuss your observations because there may be something you missed and the other parent noted.

4. Look at the physical structure of the school (not just the quality of the paint job) to see if it meets your child's needs (is the school barrier free, is there a play yard, is there a sensory gym, what does the PT gym look like, what level of technology does it employ in the classroom, is there an art program, etc.).

5. Ask about the experience of the therapists on staff, where did they train, previously work, etc.

6. Ask about after school programs at the school and if they are available, would they benefit your child or add something to you child's day that would be enjoyable (for example, Eliza's school has after school programs until 5:45 ranging from ballet, music and art to Tai Kwan Do)

7. If you are looking at public schools, ask about the historic ratios of children in the integrated classes and the experience level of the teachers. While this is no guarantee of what the next year's class size and make up would be, it is a bench mark to use as a guide.

8. Since public school tours are primarily geared toward typical children, ask to observe an integrated class. The tour guides are generally accommodating with this.

9. If you are looking at non-public state funded schools, ask if they have any current plans to drop their NPS status, since that may impact issues relating to financing tuition in upcoming school years.

10. Although I was most keen to see the kindergarten classes on the tours, ask to see the upper level classes as well. Although it is hard to envision what your child may need in 3 or 4 years, it is a good idea to see what the school is providing down the road and the general class structure and make up.

11. If you are looking at non-public state funded or private schools and your child is selected for an interview, don't be reticent about asking what the school is looking for in the class profile, how your child will fit into that class profile and why the school thinks it is a good fit for your child (as opposed to why they think your child fits their class profile).

12. If you are looking at non-public state funded schools or private schools, ask if they provide PT. Many do not and if your child needs PT, it would be an after school therapy you will need to coordinate and arrange.

13. Ask how many OTs, PTs and SLPs there are on staff and how many children they are servicing. Sometimes doing the quick math in your head will lead to the conclusion that not all children can get their full services at school and you would therefore get an RSA (in NY a Related Service Agreement) for after school therapy. If that is the case, you would have to factor that into your schedule and your child's daily schedule.

14. When you have settled on your preferred school choices meet with your child's current teacher/therapists/social worker to get a game plan for your IEP. Decide ahead of time what your wish list is, but also know what you are willing to negotiate. Your child's current teacher/therapists/social worker are great resources to help guide you on this for your child.

15. When thinking about therapies that you want to be provided during the school day, ask whether these are push-in or pull-out therapies. If they are all pull-out therapies you are seeking and it is a total of 12 hours a week for example, that means your child is missing 12 hours a week of class time with his or her peers. In my case, I initially was firm that I wanted only 1:1 speech and OT, but after discussion and reflection on how Eliza does in a small peer group, I decided that having some sessions of speech therapy and OT in a small group of 3 would work well for her. Also keep in mind your child's busing needs during the school year since that will be addressed at the IEP meeting.

16. If you are looking at public schools and think you child needs a 1:1 aide (whether for behavior, feeding, motor function issue, etc.) be prepared to support that need at your IEP meeting.

17. Prior to the IEP, make a checklist or outline of your child's strengths, weaknesses and needs and have the documents handy to refer to them during the IEP meeting. Although you may have submitted 100 pages of information to the IEP Team, so have another 100 families, so the IEP Team is not likely to know your child's history with any detail, and may be basing its assessment on a 30 minute observation of your child. If you can refute the observations and back that up with references to progress reports, the neuro-psych report, medical reports, your arguments for the services are more persuasive.

18. If two parents attend the IEP meeting, it might be helpful to designate one as the "advocate" and one as the "note taker," so you can more easily formulate follow up questions or review areas that may have been overlooked. If you are a single parent, it might be helpful to bring a friend or family member to be the "note taker."

19. www.wrightslaw.com has some excellent resources about IEPs, the IDEA and a "yellow pages" of advocates and attorneys by state.

20. As to selecting a neuro-psych, I would note a few things. Many do not take insurance and the cost can run up to $5,000. There are some who do take insurance and you should contact your insurer first to see what, if anything, they will reimburse you for the costs, or find out if they have any neuro-psychs in their network. Some hospitals have programs which offer free or discounted neuro-psych evaluations if you agree to allow them to anonymously use the data they collect during the evaluation, but these programs vary year to year. I opted to have Eliza's neuro-pysch testing spread out into 2 to 3 hour time blocks (with a break) over the course of 4 weeks since I felt any more testing in one or two days would be too much for Eliza and would not give a true reflection of her abilities.

If anyone else has any suggestions to add the list, feel free to do so in the comments.

"Sustenance"

2011-07-29T22:00:00.000-04:00

A friend recently forwarded an article entitled Sustenance written by Kerry Cohen, in the July 29, 2011 edition of Literary Mama. It is a beautiful, and painfully true, article about raising a child with a feeding disorder and who simply refuses to eat. While the origins of feeding disorders vary, and can often be the result of basic mis-wiring of some unidentifiable neural connection, Ms. Cohen's description of life with a child who has little to no interest in food, the never ending and changing theories and treatments for the disorder presented to the parents and the deeply held hope that one day this will end and your child will eat macaroni and cheese, resonates with all parents who are facing this challenge.

Thank you Andrea for sharing this article.

Wave Runner

2011-07-24T21:04:00.000-04:00

Eliza is a bit spoiled when it comes to sun and surf, since most of it has been in the Caribbean, Even though Saba's beach is rocky (but we now have a nice white sand beach! WooHoo!), the water is 85 degrees, instead of the 65 degrees that we have in New York. But since the weather was almost 100 degrees, off to the beach we headed.

We got up early and were some of the first on the beach. The main benefit of this was getting a parking spot near the beach, thereby cutting down on the time one must act like a Sherpa. It is amazing what 4 kids and 4 adults need just to hang out at the beach for a few hours.

Eliza was not daunted by the surf (nor was her dino) and she enjoyed running into (and away from) the waves.

And she was quite stylish in her one-shouldered one-piece:

This was one of the first beaches at which my Dad taught me to swim and I am sure he would have been delighted to see Eliza do her "shark dives" into the waves :)

Only 18 more days to the 85 degree water!

"Single" and "Special"

2011-07-10T22:36:00.000-04:00

Of late there has been another crop of articles and discussions in parenting magazines, parenting websites and blogs discussing the difficulty of working and raising a child. It seems to be an annual tradition. Many of the magazine articles and the comments quickly degrade to a competition of which mom is better, the one who stays at home or the one who pursues a career.

The discussions and articles often are replete with comments to the effect that "I am a better mother than you because I quit my job and stayed home with my child" or "my husband doesn't help with the child so I am practically a single mother" or "I work part time and that's practically as hard as working full time."

What is lost in these arguments is that (a) most single mothers cannot quit their jobs since there would be no income for food, housing, health insurance and other basic needs of the child, (b) having a husband who doesn't participate in day to day childcare may stink, but that husband does provide (in most circumstances) financial assistance for the food, housing, health insurance and basic needs that require money and (c) well, no matter how you cut it, working 2 or 3 days a week and being a stay at home mom the other 4 or 5 days a week is not the same as working 40 to 50 hours a week and knowing there is no second income to make up the difference (whether that second income be in the form of a partner's/spouse's paycheck or a child support check).

Add in the fact that you are the single mother to a child with special needs and you have entered a whole new realm of why you have to work.

I belong to a number of parenting groups for parents of special needs children. Some families are fortunate to live in countries that have generous paid maternity leaves (a year or more), but most live in the US where employers and the government expect you to be back at work 6 weeks after giving birth. Assuming you have a typical child, this would suck anyway. Most mothers don't want to put their infants into day care at 6 or even 12 weeks old. Some families are lucky and have an endless parade of grandparents, aunts, uncles and neighbors to watch the baby at little or no cost. Other single moms, like myself, would be lucky to be able to rely on the building superintendent, or hell, even UPS guy with spare time to watch Eliza between deliveries.

Child care becomes more difficult when you have a special needs child since daycare is often not an option because either (a) daycare centers won't take children with medical or special needs and (b) your child cannot medically withstand the germs in daycare centers. Finding a nanny is not so easy either since not every nanny would actually be able to operate an oxygen concentrator, read a pulse oximeter, administer a half dozen medications day, work with three or four therapists each week or frankly, and simply not be afraid of your baby.

As a single mom in the US, having to work provides for the basic needs of the mom and the child: food, home, insurance, clothing and if you are lucky, cable TV. In addition, the single parent of a special needs child has to work since there are the additional costs of the endless co-pays for hundreds of doctor appointments (yes, hundreds in 5 years), medication co-pays (no generics for these kids), durable medical equipment, co-pays for thousands of hours of therapies, the endless list of things your insurer thinks are uncovered or unnecessary (like special formula, or compounded medications) and a nanny since daycare is not an option (see scary baby scenario above).

So perhaps before voicing your opinion and denigrating a working single mother, think about what you know (even in its most basic form) about the family unit before you spew off some invective about how the mother should be home with the child. I have been told over the years, and very recently, that "I asked for motherhood" (by spending years and an ungodly sum of of money on fertility treatments) so I had therefore abdicated my right to occasionally complain about the realities of life. It is an interesting position for people to take, since last time I checked, the married women I know who are mothers also actively sought out motherhood. The more disturbing thing is that most of these comments come from married women, or women who are at least receiving a child support check. Rarely have I ever heard any of my male friends or acquaintances make such comments, but then again I've never heard any of the men I know criticize another dad for working to support his family.

So come on ladies, can't we all just try to get along and not make this a competition? And before you criticize a woman's decision to work, realize that this decision may not have been a choice, but the only option to be able to provide for her child.

Getting off my soapbox now.

Karma

2011-06-29T00:47:00.000-04:00

On the twenty-third June 2011, Eliza finally slept through the night for the one hundredth night of her life.

This was 100 nights in the 1,927 she has been on this earth.

Eliza came home from the NICU on June 23, 2006. So exactly 1,827 days since leaving the NICU. she finally made it to the night I have been looking forward to for 5 years.

I think it is a good karmic sign that this happened on the anniversary of her homecoming, don't you?

Todd is Now Living With Us!

2011-06-25T00:18:00.000-04:00

Now let's not get all excited that I have either (a) given birth to a boy named Todd or (b) have had a date with someone named Todd (that last happened on December 13, 2004 and he wasn't named Todd).

Do you remember Biscuit and Cracker? Let me refresh your recollection:

Biscuit:

Cracker:

Now meet Todd:

I really thought this latest addition was going to be Scone or Muffin. But Todd? Never would have guessed that one.

So now my well meaning friends and family who frequent IKEA keep showing up with these lovely faux-Labradors just to see what the next name will be. At this rate I will have to establish one of those dog rescue groups.

June 23, 2006

2011-06-22T23:55:00.000-04:00

Five years ago today, I walked out of Lenox Hill Hospital with a five pound baby, a couple of monitors, a bag of medicine, a handful of prescriptions, a list of doctor appointments and a portable O2 tank. The day we left Lenox Hill Hospital was bittersweet since many of the nurses and doctors had become like family to me. Every single picture of the occasion is blurry since even the friend behind the camera was weeping.

On June 23, 2006, Eliza, my Mom, Dad and I strolled 500 yards to my apartment, an apartment from which I could see the NICU every day and night.

That walk on June 23, 2006 was the first time in her 100 days on this earth that Eliza had seen a blue sky, the sun, a tree, smelled a flower or even saw a good old NYC pigeon. We were brave and took an extra lap around the block so we could just feel, well, normal.

As a single parent, coming home alone with a medically complicated baby was daunting. I had never heard of an oxygen concentrator, didn't know anyone whose baby had a handful of specialists, a dozen prescriptions or needed weekly doctor appointments. I knew of no other single parents in this situation. I didn't sleep for the first week for more than an hour at a stretch since I was so afraid something would go wrong, or some machine would break and there was no one there to help.

But we figured it out on our own, with the help of some special people and frequent calls to and from the NICU.

Five years has flown by. I entered Lenox Hill Hospital in February 2006 with predictions that not only would Eliza not likely survive, but that I might not survive HELLP Syndome. It was so bad at one point that my doctor recommended I have a guardian in place for Eliza if she were to survive and I did not. Pretty surreal when you have not yet entered your third trimester.

But somehow, we have not only survived but thrived.

I can never thank the doctors and nurses enough for saving me and Eliza. After about two months in the NICU Eliza was declared to be a "very, very good baby" by the head neonatologist at the time. She didn't look "very, very good" to me, but he seemed to know something that I didn't, and thankfully he was right.

Eliza has not only been a very, very good baby, but she has grown to be a wonderful, delightful and remarkable little girl. Eliza has worked so very hard to get where she is today and I give her full credit for all that she has achieved.

Oh the places you will go Eliza Grace, the very, very good baby.

Graduation!

2011-06-18T18:37:00.000-04:00

SHE DID IT!

On June 17, 2011, Eliza Grace graduated from Gramercy Preschool!

At the start of the ceremony, Eliza and her soon-to-be-husband, Otto, performed a few song and dance numbers to "Lean on Me" and the classic "Time of My Life" by Bill Medley and Jennifer Warnes (you remember, from Dirty Dancing?) Patrick Swayze and Jennifer Grey had nothing on these two! OK, except for maybe the whole jump-from-the-stage-catch-her-in-the-air move.

Medals were awarded. Eliza was giddy with excitement:

Otto took his degree a bit more seriously:

The children sang along with pretty darn good sign language, far better than you average hula dancer:

Mama, Nana and Eliza were are pretty excited:

Eliza was particularly thrilled to show off her medal to Nana and Nana was just as happy to share the moment with Eliza:

So five years after I brought Eliza home from the NICU with great trepidation as a single mom with dire predictions about whether Eliza would walk, talk, run, laugh or even enjoy life, I think it is safe to say that she has done it all.

Oh the places she will go!

Mama loves you so very much and could not be happier or prouder!

Central Park Challenge

2011-06-06T19:12:00.004-04:00

Eliza is officially a road runner! This past weekend Eliza "ran" in the Central Park Challenge, a fund raiser for YAI, the organization that has provided Eliza with Early Intervention services, CPSE services and which runs her school, Gramercy.

Eliza ran on the team 2011 Best Friends Forever. Much like nailing Jello to a wall, it was not quite possible to get all of the team members in one photo.

Thanks to cousin Peter, we had some pretty spiffy shirts made up and a very nice banner. This of course maybe be the only moment in time when the banner was actually carried by the under 30 crowd. The team raised close to $2,000 for YAI. Not too shabby.

Eliza graduates from preschool in the coming weeks. Her graduation comes just a few weeks shy of her five year anniversary of leaving the NICU. Who knew that this little one pound baby would be able to run and play with the "big" kids, debate whether her favorite dinosaur is a Barosaurus, a Saltosaurus or an Apatosaurus and explain the difference between Reef, Tiger, Hammerhead and Lemon sharks.

Oh, and to the gentleman from the Department of Education who insisted Eliza was in the 3d percentile for gross motor function and intellectual function, kiss my backside.

Hot Tea and Vanilla

2011-05-26T23:22:00.002-04:00

Well, maybe more like Ice-T and Coco...

During a walk on High Line this week, Eliza and some friends ran into none other than Coco, wife of Ice-T! Literally!

Apparently there is a new reality show on the E channel called Ice Loves Coco. There was a film crew up on the High Line filming an episode. During the entire filming Eliza and her "peeps" were running gleefully behind Mrs. T (Mrs. Ice-T? Mrs. Ice? Not really sure here). The production folks asked if we would sign a release allowing the footage of the happy, smiling, barefoot children gleefully frolicking in the faux-river (faux, because it is an elevated rail track after all) to be included in the show. Well needless to say, we all shamelessly agreed! Then the film crew took additional footage of the kids for "atmosphere" footage.

Sooooo...

The first episode is June 12 at 10:30pm. Rumor has it we may be in an episode slated for July. So now you'll just have to watch 6 weeks of it to see if Miss E (Eliza's stage name) shows up with Mrs. T!

Oh, and on an unrelated note, Eliza ate 7 sweet peas at feeding therapy today :)

Biscuit and Cracker

2011-05-16T20:58:00.003-04:00

Despite the name of this post, no food will be mentioned!

Eliza has two favorite stuffed animals:

Meet Biscuit:

Meet Cracker:

Where the names came from is a mystery, but Eliza was quite adamant about the names.

Eliza can tell the difference between the two and for my sake Aunt Bonnie made cute little outfits so I could tell them apart. Biscuit is a boy and Cracker is a girl, in case you were wondering.

When we went to Saba Eliza decided to bring Cracker and not Biscuit. Biscuit was to stay in New York to watch over things. When we left Saba, Eliza decided that Cracker would stay on Saba to take care of the house and keep Eliza's friends company.

Well tonight she realized that Cracker is not in New York. I am sure they could hear the wailing across th Hudson.

It could be time for yet another trip to IKEA to get Cracker's cousin Croissant :)

It's Not Just a Word.

2011-05-11T07:51:00.007-04:00

I know some people get annoyed with me when I asked them to not use the word "retard" or "retarded." In the early years when Eliza barely spoke and would bang her head on the floor seemingly endlessly or exhibited some other non-typical behavior, I heard the word from adults and children alike (I assume the children learned it from their loving parents). When I heard the word I wanted to quite literally, beat the person senseless, but that's not really productive. now is it?

Robert Rummel-Hudson has blogged on why we should refrain from using this word as a derogatory term and the effect that using this word has on parents of special needs children and the children themselves. You can read his views on his blog.

Now do you get it?

When Are We Going Back?

2011-05-10T21:55:00.011-04:00

Ah yes, this is Eliza's version of "are we there yet?" Ever since returning from Saba, each and every morning Eliza asks "when are we going back to Saba?" I've tried to explain that winning the lottery would be a key ingredient in this and we are investing daily in Mega Millions as a potential retirement income. A trip to an upstate casino might be an option if I could hermetically seal Eliza from the cigarette smoke while at the slots.

We had a fun Easter egg hunt with the Hell's Gate crowd. It seemed like a great idea to hide the eggs at 11pm, but we didn't factor in the morning sunshine on the chocolate filled eggs :) No one seemed to mind though.

Eliza hung out with the "big girls"

And enjoyed some cousin time.

Our vacation was a very sad time because of the deaths of two dear, dear family members. Eliza wanted to know where they had gone to. I told her they were with her Papa in the stars. So we watched our beautiful moonlit night sky each night and looked for the winking stars which was how we could tell everyone was smiling down on us.

And with this happy face, how can we not go back?

Central Park Challenge

2011-05-09T12:33:00.009-04:00

This year Eliza Grace and I are participating in the Central Park Challenge to raise money to support YAI and Eliza's school, Gramercy School. As many of you know, Eliza was born at 26 weeks and 4 days gestation. She weighed 575 grams, or about 1 pound 4 ounces. Eliza spent 100 days in the Lenox Hill Hospital NICU before coming home.

Eliza received Early Intervention Services through the YAI LifeStart Program. Because Eliza never had the luxury of a third trimester, she was globally delayed and at the age of three had a significant speech delay, gross and fine motor function delays and sensory issues. Eliza entered Gramercy School at the age of three and a half barely speaking. She has progressed significantly, thanks to her teachers and therapists at Gramercy School and will be in an integrated Kindergarten this fall.

Eliza's Team, the 2011 Best Friends Forever Team consists of several of her friends and classmates from Gramercy who will walk together.

If you would like to support us in the Central Park Challenge, just go to HERE to make a donation.

Thanks as always for your generous support!

Oh How I Love a Good Competition

2011-05-03T23:55:00.003-04:00

Feel like voting for your favorite Single Mom Blog (that would be me).... just go to this link and vote for Life with Eliza Grace. We are way down on the "recently added" page with only one vote so far from some kind soul :(

Feeding Update

2011-05-02T20:35:00.002-04:00

I had drafted this post a few weeks ago in response to a request from a friend and blog follower for a feeding update. I don't have the strength right now to write about what else has happened in the past couple of weeks, so I'll focus on this one topic near and dear to my heart.

A few months ago, Eliza had started to eat small (post-it note size) peanut butter and jelly sandwiches and cheese sandwiches. She had started to eat 2 inch square pieces of waffles, a few bites of pancakes, a bit of pizza crust and a quarter of a mini bagel with some butter. In the past month or so she has once again refused these. She has lost well over a pound in a month, has taken three times as long as previously to finish a "meal" and has dropped down a size in pants back to a 3 and has those tell tale dark circles under her eyes. She and I will see her doctor in the next couple of weeks to see what has to be done. Eliza knows if she doesn't eat she will need a tube in her stomach, and she says she does not want one, but it is still not enough incentive to try to eat.

Everyone I know whose child is Eliza's age (and some who are younger) and who had feeding issues has moved on down the road. Far, far, far down the road. They eat pizza, hot dogs, pasta, burgers, freaking Happy Meals, chicken nuggets, macaroni and cheese, mashed potatoes, rice, fish, soup and ice cream (Eliza no longer eats ice cream), just to name a few. Eliza will no longer eat cake or muffins and there are two brands of cookies she will eat (one of which I cannot buy in the US). An average "meal" is two saltine crackers and one slice of American cheese. Try that three times a day and see how you feel. She won't drink formula anymore, just milk. I suppose I should be thankful it is whole milk and I can add protein powder to it. I am tired of people telling me how awful it is that their child will only eat one brand of burger or only flavor of yogurt or only a half a slice of pizza or only style chicken nugget or brand of hot dog or some magical freaking smoothie. If Eliza ate one of these things, and only one of these things, I would breathe a sigh of relief. But she doesn't, so I cannot breathe that sigh.

I am not looking for sympathy or empathy or advice. I suppose though I am asking people not to call me and email me to complain about their frustration that their child only eats one kind of pizza/hot dog/vegetable/fruit/meat/yogurt/chicken nugget. I just can't listen to it right now. Maybe someday I can reclaim my role as the Dear Abby of feeding problems, but not now.

Take Off ... To The Great White North!

2011-04-07T21:16:00.018-04:00

Eliza took her first official road trip last week. In true Richter family tradition, we packed up the car with way to many snacks, talked non-stop, stopped at few too many rest stops and took the scenic route through some small towns that have seen better days ...

And we ended up in Cooperstown, just in time for a new baseball season!

Along for the trip was cousin Matthew. He and Eliza paid homage to Big Ed's memories of the glory days of Ebbets Field:

Adriana was also with us for the adventure. Adriana and Eliza took in the sights of Main Street in Cooperstown (and enjoyed wedges of deep fried macaroni and cheese):

Adriana decided it was time to really understand the game of baseball:

Eliza tried to get an autograph from Babe Ruth:

We got to visit Cuba:

And Saba (you have to look really close):

And if that wasn't enough .... we headed to ...

Still not sure? Here is another hint:

Still can't figure it out?

WooHoo! Niagara Falls! Or as Eliza calls it, the Big Water.

We faced dangerous conditions:

And windy conditions:

And we accepted the sad news that the Maid of Mist was ice bound in Lake Erie:

Some of us looked great despite the gale force winds:

We saw true love when a man showed his girlfriend the Falls on Skype:

Everyone should see the Big Water. Eliza can cross it her bucket list (assuming five year olds have bucket lists).

Oh ... and don't ask us about the whole Canada thing :)

We Are Family... Or Are We?

2011-03-27T21:18:00.003-04:00

Perhaps it was the milestone birthdays that Eliza and I had this year (5 and 50), but I have been thinking a lot about what really makes up a family. Is it the people we share a blood relationship with only or is it comprised of friends who have become like family to us? Can a distant cousin be more of a sibling to me than my own sibling and does that cousin become a more important family member? Can a cousin who lives overseas be more involved in Eliza's life than family members who lives nearby?

When I was growing up our family (first cousins, second cousins and some third and fourth cousins) were relatively close by and we spent weekends, birthdays and holidays together. Our parents and older cousins had jobs, sometimes two jobs, but no one ever seemed too busy to find time for family. We quarreled and drew lines in the sand (a few fist fights even broke out) but at the end of the day sat down, we laughed at ourselves and shared a good meal. Are we really that much busier today and that much more focused on ourselves that we can't think beyond our own needs? Have we forgotten that family does matter?

When you ask Eliza who her family is she will tell you: "Mama, Nana, Peter, Matthew, Adriana, Aunt Bonnie, Aunt Cindy, Aunt Mal, Aunt Carolyn, Nana Wilda, Cerissa, Uncle Ken, "the cousins" (Nicole's and Tracey's children), John, Patti, Bosley and Pumpkin (don't ask)." If you know my immediate family, you will realize there are some notable absences from the list. I find this very sad because Eliza does not, and likely will not, ever get to know these people, people I grew up with and people who I watched grow up. How busy can people be that they can't make time to spend with a 5 year old? Very, very, very busy I am told. At what point am I permitted to stop trying to include actual family who can't be bothered to get to know Eliza?

Some people may argue that it isn't Eliza that they don't like, but rather it is me they would prefer not to share an afternoon with. Fair enough, but there is nothing stopping someone from taking Eliza out for an afternoon (trust me on this one) or even acknowledging her birthday with a simple card. But what is a parent to do? Do I keep telling Eliza who her family is and have her disappointed when they don't show up for events or show up in body but not spirit? Or do I let her craft her own "family" from the people who love her and want to be an active part of her life, but who are not even related to her?

Family does matter. Right?

As the Dime Turns

2011-03-25T21:43:00.006-04:00

Apparently in response to the outcry from parents, patients and fund raisers, the MOD has written to KV Pharma/Ther-Rx regarding its concerns about the price of Makena. Here is the MOD's letter:

March 23, 2011

Greg Divis, President
Ther-Rx Corporation
One Corporate Woods
Bridgeton, MO 63044

Dear Mr. Divis:
Thank you for your letter of March 17th. I am pleased to learn that you are ‘listening carefully to stakeholder concerns about list price, patient access, and cost to payers’. Thank you for considering additional steps to ensure that Makena is available to all eligible women, and for convening stakeholders from the March of Dimes, the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the Society for Maternal Fetal Medicine next week.

In advance of that meeting, I want to go on the record that March of Dimes expects Ther-Rx to come to the table with substantive commitments including:

1.A significant reduction in the list price of Makena.
2.Adjustments to the patient assistance program to ensure adequate coverage of all patients, insured, uninsured and underinsured.
3.A method for reporting on a regular basis to stakeholders on the patient assistance program to ensure that it is meeting needs in a timely and adequate way.
4.A justification or rationale for your pricing based on your investment in the product, savings to the health care system, or other appropriate methodology, which you are prepared to make public.
Without these elements, I do not believe that Makena can succeed in the current marketplace environment, and as a result, at -risk women will be denied access to a safe and effective treatment to reduce preterm delivery. Therefore if you are unable to make a clear commit-ment to significantly address the above issues at the meeting, the March of Dimes will need to pursue alternative strategies for ensuring that this proven intervention to prevent preterm birth is made available to all medically eligible pregnant women, and we will step away from our longstanding and productive corporate relationship with Ther-RX. Thank you for your consideration of this critical matter.

Sincerely,

Jennifer L. Howse, PhD
President

Sadly the letter is pretty toothless.

The MOD's "threat" is that if KV Pharma/Ther-Rx does not justify the ridiculous price or lower the price, the MOD will "pursue alternative strategies for ensuring that [17P] is made available to all medically eligible women."

Well, exactly how does the MOD plan to "ensure" this? The MOD does not manufacture or distribute the drug. Currently KV Pharma/Ther-Rx has an exclusive license, so how does the MOD plan to ensure every eligible woman gets the drug? It can't. Nor has the MOD identified one single "alternative strategy" which it intends to use.

According to Charity Navigator (which gives the MOD a pretty poor one star rating), the MOD had over $211,000,000 in revenue in 2009. You can read about it here. I think the MOD needs to spend some of the $211,000,000 on a PR firm. Or maybe Dr. Jennifer Howse can use some of her $633,000 salary to help fund a PR campaign? Just a thought.

Happy Birthday Eliza Grace

2011-03-14T22:01:00.018-04:00

We celebrated Eliza's 5th birthday surrounded by great family and wonderful friends.

We had balloons courtesy of Aunt Bonnie:

We had great cakes thanks to the wonderful efforts and talents of Adriana, Matthew, Peter and Dana:

We had beautiful views:

We had some really great food:

We had plenty of dinos:

New friendships were forged:

Young love blossomed:

Notice the death grip Eliza has on Otto :)

We had lots of arts and crafts:

There was a T-Rex Pinata and one brave soul (thank you James) who agreed to hold it on a stick so 30 kids could swing a bat at it:

We made sure everyone got lots of candy:

There was mayhem at the ceremonial blowing-out-of-the-candles:

(notice the "step away from my cake" face)

(Adriana does not need another upper body work out for a while)

We all ate the cakes:

Maybe too much cake:

And did I mention the very generous gifts:

But the most important part of the celebration was the people:

Thank you for helping to celebrate another year in the life of one amazing little girl.

The March of Dimes and KV Pharmacueticals

2011-03-11T08:59:00.008-05:00

Unless you spend time in preemie-land this article may not have caught your attention: Premature labor drug spikes from $10 to $1,500

Up until this week there was a drug known simply as 17P which was used to prevent premature labor in certain pregnant women. It was a compounded drug, widely available, at a cost of about $10 to $20 per injection. In the world of pharmaceuticals this was a bit of a bargain drug. This past week a drug company, KV Pharmaceuticals won FDA approval to be the exclusive manufacturer of this drug which KV Pharma has named Makena. KV Pharma, by all accounts, has a pretty shaky past, only recently having avoided bankruptcy and whose CEO was recently sentenced to prison. You can read about KV Pharma here and here, but I am sure you can find many more tidbits on your own.

KV Pharma seemingly performed no research and development into this drug but got lucky when it purchased the rights to Gestiva (now known as Makena) in 2008. You can read the press release here.

So what does all this have to do with the March of Dimes you ask?

The following is a post from Dr. Davis (a specialist who places Transabdominal Cerclages (TACs) which was posted on "Abbyloopers" (a yahoo support group for incompetent cervix).

As many of you have become aware, KV Pharmaceuticals has received FDA approval to be the exclusive distributor for P17. They are planning to charge $1500 per injection for a total cost, per pregnancy, of $30,000!!!!

The current cost is $10 per injection, or $200 per pregnancy.

There are several points that I would like to emphasize.

The rationale for a commercial manufacturer is to ensure a standard concentration. In theory, this can be a problem with compounding pharmacies although the vast majority of the compounding pharmacies producing this product tat present have extremely exacting standard. The March of Dimes has, unfortunately, bought into this rationale with absolutely no proof that a variation in strength is of any clinical significance. By law, once a drug is commercially available, compounding pharmacies must stop production of that drug.

We have been using P17 for the past ten years from these compounding pharmacies with obvious beneficial effect. So where is the rationale for this change?

March of Dimes receives several million dollars a year in support from KV Pharmaceuticals - I wonder why! This suggests to me that March of Dimes can be bought. I, personally, have informed the March of Dimes that I am ceasing all support of their organization, financial and otherwise, until they divorce themselves from KV Pharmaceuticals and support for Makena. They do not realize that they are going to cause an increase in the preterm birth rate, not a decrease. At best, there will be no change other that a massive over-expenditure of health-care dollars.

You have seen the propaganda stating that no-one will be denied the medication because of ability to pay. However, what they don't tell you is that they are going to use very strict criteria. In essence, the only women who will qualify is those who have had a prior preterm birth before 32 weeks secondary to preterm labor. To illustrate this more fully, Aetna/US Health care (one of the largest insurers in the country) covers this therapy when patients meet their strict criteria. Currently, they are paying for P17 for only 1,000 women nationwide per year! There are 4.2 million births in the US annually. 10 - 15%, or 420,000 to 610,000 are premature. And Aetna is only going to cover 1,000 of these women.

30% of all prenatal care is covered by Medicaid. An additional 10% is covered by charity care. KV is going to insist that since this care is not coming out of the patient's pocket, the cost should be borne by Medicaid and charity care. Currently, we can provide good prenatal care for about $2,000 per pregnancy. So for every patient placed on P17, we have to somehow find away to cover an additional 15 pregnant patient. And who pays the medicaid and charity care bill? We all do through higher taxes and higher healthcare premiums!

Studies show that approximately 30 women need to be treated with P17 to prevent one preterm birth. At $200 per patient, this is very cost effective. That is an expenditure of $6,000 to save the average of $51,000 per preterm delivery. With current pricing, we will have to spend $9 million dollars in P17 therapy to save $51,000. Does this make sense? And people want to know why health care costs so much.

Most of you (greater than 90%) who will be on P17 now will be faced with doing without or paying $1500 per injection out-of-pocket. If you are currently on this medication, make sure that your doctors order enough for you right away to cover the entire pregnancy. You could have as little as one week. If you are early in pregnancy or planning a pregnancy soon, talk to your doctors about getting this now to have on hand. Most suppliers warrant the drug to be effective for one year.

So, what can you do?

Firstly, contact KV Pharmaceutical and voice your displeasure:

KV Pharmaceuticals Contact Information: investorrelations@ kvpharmaceutical.com

Second, notify your local media outlets about this issue.

Third, write or email your congressman and senator:

http://www.senate.gov/general/contact_information/senatorscfm.cfm

https://writerep.house.gov/writerep/welcome.shtml

Fourth, contact the FDA and find out why they elected to give KV exclusivity for this product. Competition will bring down the price dramatically.

http://www.fda.gov/AboutFDA/ContactFDA/default.htm

Fifth, write to the president:

http://www.whitehouse.gov/contact

Sixth, contact your state Medicaid offices and your insurance carriers. Get them involved

Seventh, get as many of your friends, family members, co-workers, etc. as possible to do the above.

Eighth, feel free to cut/paste/email the above to as many contacts as you can. Let's make this issue go viral!

If we can get enough of a protest mounted, we stand a chance of averting this "rape" of the healthcare system that is motivated almost entirely by a profit motive. Even if KV decides to not manufacture the drug for fear of losing money, we will be better off than with what they are currently planning.

Thank you.

Dr. D

When the public, or at least the public in preemie-land got wind that the MOD endorsed the proposal to give KV Pharma the exclusive manufacturing rights, there was, well, outrage. All was not well in preemie-land. Many parents of preemies, like myself, had raised tens of thousands of dollars for the MOD and we were disappointed to see that the MOD had made such a bone-headed and irresponsible (and possibly deliberate) decision to endorse KV Pharma's exclusive rights to manufacture this drug.

There are only a few reasons that the MOD blindly endorsed KV Pharma's application to be the exclusive manufacturer of Makena. Either (a) the MOD was so tickled pink with the continued contributions from KV Pharma and its subsidiaries that it ignored the fact that having an exclusive manufacturer of the drug would lead to a price increase (particularly a manufacturer that seems to have had its recent share of financial troubles); (b) the MOD, despite being a huge corporate entity, felt no obligation to perform any due diligence into whether or not the granting of exclusive rights to KV Pharma would be beneficial to the very population the MOD purports to serve or (c) someone at the MOD was so naive as to think that switching to an exclusive manufacturer and thereby creating a monopoly would not have an ill effect on the price of the drug (under this scenario one must accept that no one in the employ of the MOD majored in history or has a law degree).

The MOD's response to the outcry today was posted on the MOD's Facebook page:

Thank you to everyone who has shared their concerns about the cost of Makena. The March of Dimes agrees that the price of Makena is too high. We have shared our concerns about the price with Ther-Rx in the past and will do so again today. Ther-Rx has promised that every eligible woman will get care regardless of their ability to pay and we will hold them to that promise.

The MOD also stated on its Facebook page that:

We will also work with insurance companies and Medicaid to be sure that there is coverage. The needs of moms and babies are our only priority and your voices will be heard.

The MOD's responses are nonresponsive to the question of why the MOD chose to endorse this decision. Now the MOD shares its concerns about pricing? The MOD is relying on the promise of a subsidiary of KV Pharma (Ther-Rx) to provide the drug to "eligible" women who can't pay for it? The MOD is going to "work with" insurance companies to be sure there is coverage? Exactly how does the MOD plan to do this? The MOD can't even get insurers to offer Synagis to babies who need it so why should anyone have faith in the MOD's newly found powers of persuasion?

My decision to no longer fund raise for the MOD was made last year, before this latest debacle. There are many charities that perform admirable work toward preventing birth defects and prematurity and which support families of premature babies in ways far more effective than the MOD. Those charities and non-profits are no doubt not immune from problems, but at least so far none of them to my knowledge have contributed, directly or indirectly, to the financial burdens already faced by families raising premature children or who are having an already difficult (and therefore more costly) pregnancy.

Does Time Ever Really March On?

2011-03-06T22:23:00.004-05:00

The down side to keeping a journal or a blog is that you prevent yourself from forgetting since you have carefully cataloged life's events and they are there for your easy reference. As March 15 approaches I thought this would be the year that I finally could stop reliving the anxiety and abject terror that consumed me for the 25 days preceding Eliza's birth. But no such luck. I thought this year, the fifth year, would be the first year that I could stop remembering the fear that struck every 6 hours like clock work for 25 days when the doctor would come in and tell me how I and my baby were doing (never good) and whether this was the day I would be forced to give birth so I could survive. Pre-eclampsia is not just an inconvenient illness for pregnant women. It kills them. So when someone you know is hospitalized with pre-e and its later incarnation HELLP Syndrome, it is not simply so they can get some rest and keep their feet up. They are at risk of dying. Not just losing their baby, but dying. And as we know, dying sucks.

For five years I have tried to ignore the comments from pregnant women who think 36 or 37 weeks is "good enough" since they are uncomfortable, or the equally ill-informed comments that bedrest is such a great thing since who wouldn't want a license to lounge around and presumably eat bonbons (note: I am not really sure what a bonbon is). The list goes on (and often has gone on at length on this blog).

Time may march on for many things, and maybe the pace of the march has quickened in the past five years, but not quick enough for me to be able to relinquish my grip on the bottle of xanax or the therapist's phone number this time of year.

Soles4Souls

2011-02-22T11:36:00.003-05:00

Eliza's Aunt Mal is participating in fund raising for Soles4Souls.org which is a great organization that distributes shoes to those in need, whether it be to the Gulf Coast in the aftermath of Katrina, or to Haiti, where Mal will be distributing a load of shoes to those in need, some of whom have never had a decent pair of shoes in their lives.

If you would like to contribute to Mal's fundraising for the trip, please visit her Soles4Souls page:

Make Me Up A Story Mama

2011-02-08T21:33:00.008-05:00

One of the things that I think is great about Eliza is how she asks every night to have me make up a story. She loves having a book read to her, but much prefers a made up story starring, well, Eliza.

But the stories are not just about Eliza alone.

There are recurring themes, like making up a story about "Eliza's House on the Hill on Saba" or "Eliza's Dog Cookie and His Best Friend Bingo" (Cookie is a one-eared stuffed dog and Bingo is a real dog owned by Nana Wilda on Saba.), "Eliza and Her Iguana" and "Eliza and the Scarlet Macaw."

But her latest favorite story line is "Otto the Tortoise and Eliza the Hare."

Otto is one of Eliza's best friends from school. He is a lovely little boy who, much to Eliza's delight, will take her hand to hold when she asks, share his iPod with her, share his Bunny Fruit and even sit through a not-too-thrilling hour at a craft shop with her. Plus Otto is really cute too :)

When I first started making up Otto the Tortoise and Eliza the Hare stories, I would alternate who would finish the journey first. And they do go on some seriously fun journeys. They have been to Coney Island, the rain forest on Saba, the beach on St. Maarten, the Carousel in Central Park and the Monkey House at the Bronx Zoo.

But after the first few stories, Eliza told me the ending was wrong.

She told me Otto the Tortoise and Eliza the Hare had to end the adventure "together."

I asked Eliza why and she said...

"so they could take each other's hand and both win the race."

Now if that isn't true love and friendship, I don't know what is.

MOMA Here She Comes

2011-01-26T23:46:00.002-05:00

Perhaps it is being housebound with the bad weather, but Eliza is branching out from her painting to wood block sculptures

I give you Super Kitty, cape and all:

Super Turtle:

The Tree house:

Super Turtle going through the Tree house (think Trojan Horse):

And here is the artist herself in action:

Sneaky? I Think So!

2011-01-26T19:01:00.009-05:00

I finally caved and bought the Sneaky Chef Cookbook.

Interesting read if you want to get some vegetables, beans and such into a picky eater. Not the greatest help for a kid like Eliza, but I did not despair since, yes, there is a dessert section.

I decided upon the brownie recipe since Eliza has been known to eat cake.

First you need to make the spinach and blueberry puree. Let me tell you that this stuff looks (and tastes) not-so-good:

You can go two ways after this (well three, if you count running for the hills).

You can channel your inner Martha Stewart and follow the Sneaky Chef recipe for brownies from scratch.

Or you can channel your inner Anne Richter and use the modified recipe which involves a box of this:

And a jar of this:

That's wheat germ to the uninitiated.

After some substitutions and 33 minutes in the oven, you get this:

And this:

Which gets you this:

Kind of liking the Sneaky Chef! Tomorrow, some chocolate chip cookies with chickpea puree!

The Rectangle

2011-01-25T21:48:00.003-05:00

Thanks to the kindness and generosity of a good friend, I am the proud owner of one of these:

To you, it may be an iPAD, but in our house it is called "The Rectangle." As in, "Mama, can I have The Rectangle." Or, "Mama, that's not how you use The Rectangle." Or "Mama, let's ask The Rectangle." Clearly The Rectangle has god-like powers, more so than even the old Magic 8 Ball that those of you born before 1980 might be familiar with.

The Rectangle lets Eliza:

look up what dinosaurs we are going to see in the museum and find out more about them while we are standing right in front of them

practice her spelling

improve her fine motor function (she has blown through all 25 levels of Angry Birds and is on the second box of Cut the Rope)

color by numbers

play a piano

practice her Spanish (thank you Adriana)

watch her favorite shows when we travel

have her Mama read her a favorite book

What does The Rectangle do for Mama? Well just once in a while, in between all of the above, I can check my email :)

Bunnies!

2011-01-12T22:22:00.004-05:00

Today's snow day was filled with bunnies:

The Fairy Bunny:

And Snow Bunny:

Snow Bunny learned that what goes down:

Must be dragged back up:

The Surreal World of Medical Billing

2011-01-11T22:16:00.002-05:00

I never thought I would be on the same side as United Health Care/Oxford on a medical billing issue. But that day has come!

The series of events that has led to this united interest is as follows:

1. In September Eliza saw Dr. A for a routine office exam of 20 minutes or so. No tests, no bloodwork, not even a pin prick!

2. The bill as usual was $450.00. I paid my $50.00 co-pay and UHC/Oxford reimbursed Dr. A $350.00. So a not-so-bad write down to him of $50.00.

3. In October I get a bill from NYU Medical Center, the hospital with which Dr. A is affiliated. His office is not in the Medical Center, but at a building owned by NYU Medical Center.

4. The bill is for $530.85. UHC/Oxford paid $530.35 and NYU Medical Center was seeking payment from me of $50.00 for my co-pay. Huh? Eliza never went to NYU Medical Center that day, just the routine exam at Dr. A's office.

5. During my first call to NYU Medical Center Billing I was told that they could not tell me what service was rendered by NYU, but that UHC/Oxford could tell me that. Huh? My insurance company would know this but not the entity rendering the bill. UHC/Oxford was quite at a loss. Not only could they not tell me what services were rendered by NYU Medical Center, but now they were curious and wondering why they had paid $530.35 of the $580.35 bill.

6. In my attempts to clarify this with NYU Medical Center Billing, I am repeatedly told that this bill is for either blood work (nope!), pre-op testing (nope!) or some type of scan or x-ray (nope!). One clerk even told me that perhaps I had forgotten what was done to Eliza during the visit. Uh. No.

7. I make 6 more calls to NYU Medical Center Billing, each more useless than the next. I am now told that only Dr. A can tell me why NYU Medical Center generated this bill.

8. So I leave 6 (lucky number) messages for Dr. A's billing clerk and finally speak with her today.

Here is the answer:

NYU Medical Center has changed Dr. A's designation from "outpatient office" to "outpatient facility." Because it is now a "facility" I will get two bills for each office visit: $450.00 from Dr. A and $580.35 from NYU Medical Center for the mere use of the facility (since any testing would generate yet a third bill). There is no extra service being rendered by NYU Medical Center, yet they will bill UHC/Oxford $580.35 and I will now have two co-pays, $50.00 for Dr. A and $50.00 for NYU Medical Center for their facility fee. So now a visit to Dr. A will cost me and UHC.Oxford a total of $1030.35.

Now if that doesn't sound like fraudulent double billing, I don't know what does (the billing clerk was clearly in disagreement with my assessment).

So now for our 6 visits a year I will gave to shell out $600.00 instead of the usual $300.00. Eliza has four other doctors at NYU and I am waiting to see if NYU Medical Center adds the same bogus charges for each of those visits. If so, the co-pays for this set of doctors will be about $3,000.00 per year.

Anyone else out there see anyone at NYU Medical Center?

Anyone with a similar experience?

Oh, and for $1030.85 I am making sure that Eliza gets at least an hour's face time with Dr. A. Maybe two hours.

Plain and Super

2011-01-07T22:43:00.006-05:00

Eliza loves a good Super Hero. Just not your typical Marvel Comic Super Heros.

I give you Plain Kitty:

Yes, we do call her "Plain Kitty."

Plain Kitty has the power to become Super Kitty:

Plain Kitty is often accompanied by Plain Pongo:

Plain Pongo seems to have more style sense than Super Kitty when he becomes Girl Pongo:

But erhaps we should be honest and just call him Transvestite Pongo?

But the real Super Hero is Super Kitty Girl:

(Note the fist pump in the air. A true sign of a Super Hero).

Yet More Christmas Fun! It just Never Ends!

2010-12-28T20:20:00.002-05:00

Not to worry, no one is expected to watch all 12 minutes of the Richter Cousins New York City Christmas Expedition!

Merry Christmas From the Richters to You!

2010-12-27T23:35:00.005-05:00

Cousins Are For Climbing

2010-12-27T20:39:00.003-05:00

Snow Day!

2010-12-26T21:04:00.002-05:00

The Evolution of Eliza's Visits with Santa

2010-12-20T22:40:00.004-05:00

2006, fits in the palm of Santa's hand:

2007, deer in the headlights:

2008, abject terror and she leaps from Santa's lap:

2009, starting to think this isn't so bad, but certainly not talking to Santa:

2010, quite thrilled with the old guy and even chatted it up with Santa:

And an added bonus for 2010, the Richter Cousins (plus one Auntie) in their Ugly Sweaters:

It's Expensive to Be Special

2010-12-16T22:47:00.008-05:00

I don't know who Juan Gonzales is, but Wikipedia, source of all of the world's knowledge, says he is "an American progressive broadcast journalist and investigative reporter. He has also been a columnist for the New York Daily News since 1987. He co-hosts the radio and television program Democracy Now! with Amy Goodman."

Juan Gonzales recently wrote this article about Special Education in New York City and the tax payer dollars that are used to pay for private special education schools. Juan (I feel we are on a first name basis since I now have read his entire Wikipedia profile) is very vexed at the distribution of the tax payer funds and takes issue with the fact that there are more funded special ed children in wealthier public school districts than there are in the poorer public school districts. Why is Juan surprised by this? I am going to make a leap here that Juan has never had to navigate the special education system. If Juan had ever had to navigate the world of special education funding and school selection, Juan would know that the hurdles in the process make it almost impossible for a parent in a lower economic group to survive the process, or even engage in the process.

We all know that every child is entitled to a Free and Appropriate Public Education. Any parent who has been thrust into the world of special ed quickly figures out that getting a Free and Appropriate Education for your child with special needs is virtually a full time job. And there is the first hurdle.

How do you decide that your child would best be served by a special education setting? Probably your child has already been receiving some services either through Early Intervention ("EI") or later through the Committee on Preschool Special Education ("CPSE") . This is often the first hint that your child may be heading to a special education school. In order to determine what kind of special education your child needs, you are counseled to have a Neuro-Psychological evaluation. Now stay with me here .... the Neuro-Psych exam usually takes place over the course of three or four days, two to three hours a day, during which a Neuro-Psychologist performs more tests than you imagined existed. This exam costs money. Often a lot of money. Usually in the range of $4,000 to $5,000. And your insurance company probably won't pay for one dime of it. So first you have the bag of money to pay for the testing.

Assuming you can find the $4,000 to $5,000 to pay for the testing, you now must figure out how to take off several days from work to take your child for the testing, since the testing takes place over three or four days. In order to do that, you have to have either (a) available vacation time or (b) an understanding employer so that you can miss three or four days of work. If you have neither, you may not be able to take your child for the testing without losing your job or at least lose the pay for those days. For many people losing their job or almost a week's pay is not an option. So what does that family do? Well, they usually don't get the testing.

If you were lucky enough to find the $4,000 to $5,000 to pay for the Neuro-Psych eval and could take the time of from work to have the testing done, you now need to embark on the tours of the various schools which might be "Appropriate" (the "Appropriate" part of the equation needs to be solidified before you even get close to the "Free" part). Usually someone at your child's preschool, or the Neuro-Psychologist will recommend a half dozen or more schools that would be "Appropriate." (Oddly, you will find that the same six to ten schools are deemed "Appropriate" for every child in the preschool, regardless of their obvious, needs or lack thereof. But that is a whole other blog post). You now have to schedule tours of these schools. Most of the tours are held from October to December. They are held in the mornings, usually commencing at 8:45. Now if you do not have a full time nanny to bring your child to his or her regular school on tour days or wait with your child for his or her bus, you need to either (a) hire someone for the morning or (b) beg someone to come to you apartment to watch your child and put the child on the bus so you can run off to the tour. The tours last about two hours, but by the time all is said and done, you can plan on spending a morning on the tour. Which means you again need (a) available vacation days or (b) an understanding employer since you will miss at least six mornings of work from October to December. As with the time off for the Neuro-Psych exam, if you have neither the vacation days or the understanding employer, you may not be able to tour the schools without risking your job or losing the pay for those six half-days.

If you have made it this far (not you the reader, but the parent of the special needs child, although if you have read this far I applaud you), you now have to start to complete the applications and assemble reports from current and former teachers, OTs, PTs, SLPs, Special Instructors, Doctors. This takes time. A lot of time. The applications are not in writable PDF format online, but rather have to be handwritten or typed (try to find a type writer today). Time is not something that every working parent has a lot of. If the working parent does have time after work it is often spent taking the special needs child to after school therapies, or heck just being a parent and spending time with their child. So if the parent cannot take off more time from work to complete and assemble the applications because of the reasons above, the parent ends up filling them out and assembling them in the wee hours of the night.

The next step is having your child interviewed at the schools. These interviews are obviously held in the daytime, bringing up the now age old problem of hoping you either have (a) available vacation days or (b) an understanding employer since you will miss at least six mornings of work from January to March.

By the time you and your child receive an offer from a school, you have had to miss about 15 to 20 days from work and have spent about $5,000 on testing. Not everyone has these luxuries. And the sad reality is that without these "luxuries" your child might not even get close to having the chance to get an "Appropriate" education.

If you get an offer from a school you must put a deposit down to hold the spot while you seek funding. The deposit can range from $5,000 to $15,000 (tuition can range from $45,000 to close to $100,000). Assuming you have the funds for the deposit, you now must hire an attorney. If you are seeking funding for a state funded school, the fees are about $5,000. If you are seeking funding for a school that is not state funded and have to sue the Department of Education, the fees can be higher.

So before you even find out if you are getting state funding for your child's "Appropriate" education, you have to have $15,000 to $30,000 available for evaluation fees, legal fees and deposits.

So why is Mr. Gonzales surprised that there is a disproportionate number of families being awarded funding for private "Appropriate" educations in wealthier areas of the city? Because those parents have the time and the money to go down this path. Instead of blaming those parents who have the wherewithal to pursue private "Appropriate" education, blame the people who set up this system and who thought it was OK to have medicore, or worse, special education services in the public schools. Mr. Gonzales should be appalled at a government that does not provide an "Appropriate" special education in the public school. Maybe his next article will focus on that.

The Artist in Residence

2010-12-09T23:08:00.005-05:00

Butterfly:

Happy Dolphin:

Chameleon Eating Black Fly:

Lion King:
Owl:
Nemo:
Happy Whale:

Hanukkah Christmas Trees

2010-12-07T19:20:00.002-05:00

Despite rumors to the contrary, there are a million great things about living in New York City.

One of the best things about New York City is that you are surrounded by people of varying cultures and religions. Eliza already celebrates the traditions of Hanukkah, Christmas, Kwanzaa and Diwali. She does a pretty respectable recitation of the Prayer for Lighting the Menorah and even knows the purpose of the shammash.

Most of the time Eliza understands the different traditions and realizes that we celebrate different things at different times.

Your average New Yorker thinks of these beautiful trees as the Park Avenue Christmas Trees:

Not so Eliza! In our house these trees are known as the "Hanukkah Christmas Trees." You may be wondering why. Of course you are wondering why.

Our tree looks like this:

Eliza has apparently decided that "Christmas Christmas Trees" have colored lights and "Hanukkah Christmas Trees" have white lights.

I'm not sure how Eliza is going to work Kwanzaa and Diwali into her Christmas tradition, but she has put some new dreidels on her list for Santa :)

Thankful

2010-11-24T23:04:00.005-05:00

I am thankful that I can watch my beautiful daughter sleep at night.

I am thankful for my 88 year old mother who just finished reading not one, but three, bedtime stories to my daughter.

I am thankful for my wonderful cousin Bonnie is making dinner for the three Richter girls tomorrow.

I am thankful that Eliza got to know her grandfather, even briefly, and remembers him still.

I am thankful for my family in Saba who welcomes us home each and every visit.

I am thankful for my partners at work, no matter how often it seems that I nag them (I don't really nag, it just seems like I do).

I am thankful that Eliza enjoys giving the Salvation Army lady money to help the needy and who understands, even at this young age, what it means to give to those less fortunate than us.

I am thankful for the hope and joy that Eliza brings to me every day.

I am thankful that Eliza last night for the first time took a bite of an orange and pronounced it "delectable."

I am thankful for the doctors who care for Eliza, but even more thankful that we only have had 24 visits so far this year.

I am thankful for Eliza's wonderful school that has helped her to grow and develop into an incredible child.

I am thankful to Eliza's music teacher who ignores the fact that Eliza can not carry a tune but encourages her any way.

I am thankful to Eliza's friends who are a truly delightful bunch of children.

I am thankful to Joyce for caring so very much for her Gracie.

I am thankful to Eliza's cousins who spend so much time with the littlest Richter, even though Eliza does not think of herself as anything but a "big girl."

And last, but not least, I am thankful for the people who helped to save my daughter's life, because without them I wouldn't have everything else for which I am thankful.

Happy Thanksgiving.

Ta Da!

2010-11-19T20:46:00.008-05:00

Guess what? Did you hear the news?

It really exciting! Shocking even!

Still no ideas?

Not to worry, it is still just us two ....

The big news is Eliza got to sing at the Pierre! Yes sir! Eliza continued the family tradition of coming from a completely tone deaf family who has no problem belting out a show tune off key!

This week, Eliza attended the fund raiser for YAI at the Pierre Hotel (very fancy schmancy). She and several of her classmates sang "Heal the World" by Michael Jackson. Blessedly someone decided to change the lyrics "there are people dying" to "there are people trying" because 4 years olds singing about dying people is just not a good thing.

Eliza did her best imitation of Eloise at the Plaza, but since I am biased, I think Eliza at the Pierre is far cuter than Eloise ever was.

Not bad for a little girl who had less than a half dozen three word sentences only 18 months ago.

A special thanks to cousins Adriana, Matthew and Peter for making it a very special night for their littlest cousin.

Spotty

2010-11-15T21:28:00.004-05:00

I have to reconsider the lack of a pet in our humble abode.

Previously Bosley the cat lived with us. But when he started chewing on Eliza's O2 tubing, he moved to Casa de Nana and Papa. He never made the return trip to NYC since my parents became very attached to him. After my father died, Bosley served to keep my Mom company, and he is now officially her third child and is not making the trip back across the Hudson.

It seems Eliza is, well, confused as to what constitutes a pet. Would you like to meet her new pet "Spotty?"

Here he is:

Yup. It's a pumpkin. A pumpkin that she lovingly decorated with a cute face, one heart shaped eye and spots. Because this is a Spot Leopard Pumpkin. Now given Eliza's almost encyclopedic knowledge of animals (the kid knows what a quetzel is whereas you'll have to google it) you would almost start to think that there is such an animal as a Spot Leopard Pumpkin. Sadly no.

And here it the dilemma. Eliza loves Spotty so much, she has him sit on the table when she eats, brings to the side of the tub during bath time and, yes, brings him to bed at night. Yup, this kid sleeps with her beloved pumpkin:

So far Spotty has been holding up OK, if you know what I mean. But one day Spotty is going to go the way of all gourds (unless of course some reader knows how to preserve a whole pumpkin).

When that sad day comes, we may have to search for a spotted fish. Or maybe Nemo's cousin.

Remembrance

2010-11-10T19:53:00.004-05:00

Today is Veteran's Day.

Today we honor all of the men and women who served our country, many of whom lost their lives or suffered grave injuries so we could live the life we choose in a free country.

My Dad was only 17 years old when he left Brooklyn and headed thousands of miles across the North Atlantic. He had never been more than a hundred miles from home before that day in 1942.

He served all over the world, from the Normandy Invasion, to Egypt and North Africa,
To Gibraltar, Ireland, England, France and Russia,
To Okinawa, Saipan and the Marianas, to name just a few.
Daddy survived torpedoes in the North Atlantic and typhoons in the South Pacific. He watched the English Channel turn red with the blood of those whose lives were lost on D-Day and saw the surrender of Japan at the war's end.

All before his 23rd birthday.

So today, let's take a moment and thank the men and women, young and old, who have taken on a job most of us would never think of doing.

Thanks Big Ed for all you did.

A Public Service Announcement

2010-11-07T20:55:00.002-05:00

November is Prematurity Awareness Month.

I think the main thing we need to be aware of about prematurity is that it sucks.

It really sucks.

Prematurity takes what should be a normal infancy and turns it into a journey into medical hell. It robs both parent and child of a normal infancy. Instead of filling baby books with milestones like "smiled for the first time" you make note of milestones like "weaned off ventilator." You and your baby are robbed of quiet, private moments. Instead, the two of you spend those moments in a room filled with strangers, doctors, nurses, monitors, alarms and machinery you didn't even know existed when you filling out your baby registry. People tell you well intentioned, yet terribly stupid things, like "things happen for a reason," "God doesn't give you more than you can bear," "at least you never got stretch marks since the baby was born so early" or "you're lucky you get to sleep at night since the baby is in the hospital."

You wake up day after day wondering if this is the last day you will see your child.

Prematurity financially devastates families. Contrary to popular belief, there is no insurance fairy who pays the tens of thousands of dollars of co-pays or the endless "uncovered" things like speech therapy or adaptive equipment. Even "good" insurance isn't "good enough" to cover prematurity. Instead of paying for a babysitter, you have to pay for a nurse to watch your child, instead of daycare, you have to hire a nanny, instead of working full time you have to take a leave or work part time because of the sheer number of medical appointments your child will have after leaving the NICU.

Prematurity is isolating, physically and emotionally. Because of the baby's fragile immune system, you have to limit to whom and what the baby is exposed. Of course friends and family assume you are simply nuts, because, as they will all tell you over and over, everyone needs to be exposed to germs. Actually not. It is emotionally isolating because no one, other than the other shipmates on the SS Prematurity have even a clue as to what it is like to take your infant to a minimum of one doctor visit every week, not have a single day for just you and your baby because three therapists show up everyday, on schedules that are convenient to them not you and your baby.

Prematurity devastates families emotionally (see all of the above).

So what can we all do to help make this suck less?

Well, you can donate money to various charities in the hope that some of the research they fund might end prematurity. Or you can do something a bit closer to home and more personal. Call your local NICU or its support group and ask what you can do to make this whole thing suck less. Small things can make prematurity suck less. For example, my mother, my aunt and I make blankets and hats for the babies. There are dozens and dozens of babies that have worn my aunt's tiny "wee caps" and many who have been warmed by one of my mom's blankets and even though my blankets are far from "perfect" they are made with love. Some people make isolette covers, some people donate disposable cameras for parents to leave at the baby's bedside (yes we do take photos of our babies in the NICU), other folks donate gifts cards for coffee or gasoline to be given to those in need in the NICU. Others donate story books to the NICU (yes we read to our babies the same as you would at home). If you are feeling really generous, ask if you can send over bagels and coffee for a Sunday brunch for the parents and nurses (they get hungry too). Not all parents in the NICU can afford NICU clothes for their baby, so think about donating some NICU shirts or preemie clothes to your local NICU.

Even if you can't prevent premature births, you can make prematurity suck less for the parents and the babies who are in the NICU right in your hometown.

So this November, let's see if we can all make prematurity suck less.

Flamingo Girl

2010-10-29T23:39:00.009-04:00

Eliza decided to be a "Flamingo Dancer" for Halloween.

I almost got her a "Flamenco Dancer" costume. Thankfully she was pretty insistent that she wanted to be a flamingo that danced.

And so she was.

Eliza and her best buddy, William, headed off to the American Museum of Natural of History for some Halloween fun.

Eliza is the "older woman" and so has no hesitancy to corner William and tell him what she wants to do.

And if he doesn't listen the first time, she can get pretty insistent:

Eliza got to see the Giant Blue Whale with her favorite cousins:

She got to meet Teddy Roosevelt:

And Teddy got to meet his very first Flamingo Dancer:

And Mama and Eliza got to spend a fun day together:

And of course, Eliza got to do some pretty fancy Flamingo dancing:

Candy Corn and Cows

2010-10-25T21:47:00.004-04:00

Any doubts I had about Eliza's imagination and story telling abilities can officially be laid to rest.

Halloween is upon us and with it, bags of candy corn:

Tonight Eliza was sharing her candy corn with me, but when I asked if she liked candy corn, she said "no Mama, I need my candy corns for my Mickey Mouse."

Here is Eliza's recipe for making Mickey Mouse from candy corn (verbatim):

"First you get a mama cow who can squirt milk:"

"Then the mama cow squirts the milk on the candy corn:"

(really I am not making this up and I did not pose the cow over the candy corn, that was Eliza).

"And then you find the chocolate pumpkins and put them with the candy corns that had the milk squirted on them so the candy corns can become Mickey Mouse:"

Now you tell me, doesn't that look like Mickey Mouse? Eliza made the body and legs from the orange wrappers from the pumpkin chocolates.

Seriously, this is better than seeing Jesus in a grilled cheese sandwich (or maybe that was Mary?).

Jazz Hands and Tutus

2010-10-24T22:29:00.006-04:00

Eliza is embarking on several rites of passage into life as a girlie-girl.

It may seem as if Eliza is doing her best "Jazz Hands" here:

But in fact she is showing off her very first manicure! One hand pink and one hand white, like her flower garden she will tell you (she decided her green nail polish could wait for manicure number two).

Her first manicure was courtesy of Aunt Bonnie who was more than happy to be part of this rite of passage, and who does a pretty good manicure too!

Eliza has also decided that each day requires a new tutu. Thankfully she has a few tutus since she now wears them everywhere, even climbing in the playground.

The tom boy still lurks inside of Eliza since she has perfected climbing the rock wall in her tutu and her favorite toys are her Lightening McQueen and the King (or "Dinoco" as she calls him).

Tears

2010-10-14T23:25:00.001-04:00

Eliza (crying): Mama I am crying.
Me: I know sweetie, but there is no reason to cry
Eliza: But Mama these are real tears
Me: Are there other kinds of tears?
Eliza: Yes Mama (still crying). There are toy tears.
Me: What are "toy tears."
Eliza: Those are the tears that come when I really really really need a new toy.

Great. Eliza has invented a whole new emotion.

The Perils of Online Shopping with Eliza

2010-10-11T21:07:00.003-04:00

Tonight's conversation:

Eliza: Mama can I be a lion for Halloween?
Me: Well we already bought your Flamingo costume.
Eliza: But you bought it on the computer, right?
Me: Yes we did.
Eliza: So put it back in the computer and then we can get a lion costume.

Personally I am holding out that the Flamingo costume wins out over the lion costume.

Some Saba Photos Courtesy of Peter

2010-10-09T21:59:00.005-04:00

Just when Eliza and I were getting all melancholy about not being on Saba, Peter sent us a few long lost photos to remind us of how much we enjoy Saba.

Searching for our wandering beach:

It's too windy:

Just us two:

Coloring in the lines:

Doing the Dinosaur March into Windwardside with her cousin Alma and Mama:

These past few weeks have been filled with school tours instead of days at the beach or listening to the tree frogs at night. I have seen a few schools that look like they would be a good fit for Eliza for next year when she leaves Gramercy, but most of them have very few spots available. One school had as little as 2 and one had as many as 36 spots. The school with the 36 openings has over 500 applications for those spots. I don't even think William and Mary had that high of a ratio of applicants to spots. This all just seems surreal for Kindergarten, and makes homeschooling Eliza to the sound of tree frogs and crashing waves look pretty attractive.

Winning Excuse of the Year for Not Eating

2010-09-19T17:49:00.004-04:00

Tonight I tried to get Eliza to try pasta (for the 100th time). When she was presented with one of these:

(not the three pieces featured in the photo, but just ONE piece) she offered up this excuse (while all teary eyed):

"Eliza can't try pasta, it is prickly and makes booboos on Eliza's knees."

If there was ever a sign that I should just accept Eliza's liquid diet and move on, this was it.

How in holy hell can pasta make booboos on your knees, prickly or not?

Oh and please refrain from commenting that (a) one needs to present a food multiple times before a child will accept it or (b) many children are picky eaters. I would gnaw my own arm off to have a picky eater, maybe both arms.

I give up.

Remembering...

2010-09-11T09:20:00.001-04:00

Summer Vacation 2010

2010-09-06T16:00:00.010-04:00

Every year, at this time of year, Eliza and I head off to Saba, usually with her cousin Peter along for the fun, and this year was no different, except we had another visitor named Earl, Hurricane Earl.

The vacation started out with awesome weather and great fun, with lots of Commotion in the Ocean. Our cousin Karen joined us for the first part of our vacation and Eliza had just the best time with her. Eliza, Peter, Karen and I had quite a lot of fun at the Cove Bay teaching Eliza how to "surf" on her mini surf board.

Eliza enjoyed time with her cousins and going for walks and hikes:

Peter helped us with some much needed pruning of our mini-banana plantation:

We spent a lot of time with our next door neighbors and Eliza was quite smitten with young Dylan. They had endless fun in the Cove Bay and only spent about 50% of the time yelling "no it's mine!"

(Not to worry, Dana and I had finished off the Heineken!)

See the nice calm water in the Cove? Well a week later it started to look like this:

That's when Hurricane Earl decided to pay us a visit. So we did what any self respecting Hell's Gatesmen would do and had a Hurricane Party, complete with Flamingo guns and good neighbors:

The wind in Hell's Gate was pretty strong as you can see in this video. This portion of my house is protected and normally doesn't even see a breath of wind:

Eliza was a trooper throughout it all and didn't mind being shuttered in the house with no electricity or running water. She seemed to think we were "camping" indoors and took great delight in carrying around her little lantern.

The day after, we ventured out for a drive with our neighbors to see what damage had been left by Hurricane Earl. Saba was very lucky in that there was no structural damage or injuries, just lots of trees and plants stripped bare by the winds and some downed lines, but it was still sad to see all of the beautiful plants destroyed and parts of the island looking so bare:

Each time that we leave Saba Eliza cries that she does not want to "ever, ever, never, ever" leave Hell's Gate. I can't say that I blame her :)

Commotion in the Ocean

2010-08-11T21:18:00.005-04:00

Eliza, her cousins and I ventured to the New York Aquarium this past weekend. The Aquarium is officially known as Commotion in the Ocean around here.

We were joined by Matthew and Adriana, who convinced us to put Sea World on our 2011 "bucket list" to see some real Commotion in the Ocean!

Matthew helped Eliza channel her inner German tourist by wearing their socks with sandals and black socks with sneakers.

And then there was Peter who had a run in with Nathan's hot dogs, but that is a whole other post!

Katie joined us too for part of the day, and I'll update with her photos when Matthew emails them to me :)

Eliza had quite an animal packed week, with a bit of Rumble in the Jungle at the zoo. The zoo trip inspire Eliza to draw with chalk "Camel with Mixed Colors on Sand" which is unusual since Eliza tends to prefer not to mix her colors:

Eliza does seem to prefer the two humped camel to the one humped camel, claiming that the one humped camel just looks like a funny donkey. Go figure the thinking of a 4+ year old.

This is Eliza's last week of school and we'll head off to the real Commotion in the Ocean and Rumble in the Jungle, Saba. Her penguin bag is packed with toys and she has her travel clothes all picked out. Since my good friend who tends my garden has been ill for the past few months, I suspect my garden does look like a jungle, but what better place for Eliza to go on an iguana hunt or a snake hunt, two favorite pastimes of hers while on Saba.

When we get back Eliza starts her evaluations at the Child Study Center which will hopefully give me some idea of the most appropriate kindergarten setting for her in 2011. I somehow suspect that this coming fall and spring you'll see more than a handful of blog posts about that little adventure :)

You Can Never Have Too Much Hula

2010-08-02T19:37:00.007-04:00

Thanks to my cousins Tracey and Charlie, Eliza got to attend he first luau. Thankfully she did not have to witness a whole pig get baked, but she did enjoy the other luau traditions:

Eliza fell into bed saying over and over "too much hula."

Sleep Calculation

2010-07-29T22:05:00.002-04:00

For those keeping track:

Eliza has been home from the NICU for 1,497 nights.

It has been 1,597 nights since she was born.

She has slept through the night 59 of those nights.

To anyone who has been wondering why I have looked exhausted for the past 1,597 days please see the statistics above.

Geography

2010-07-28T20:22:00.005-04:00

This past weekend Eliza and I attended a family reunion in Florida. It was quite the insight into how the mind of a preschooler works.

Virtually all of Eliza's many plane trips have ended with her arrival on St. Maarten on the "big plane" and then on to the "small plane" to Saba where she is greeted by Nana Wilda, Rissa and Smutty the cat. When we landed in Orlando, Eliza immediately asked where the small plane was to take us to Nana Wilda, Rissa, Smutty and a half dozen other family members. Try as I might to explain to her we were in Florida and not St. Maarten or Saba, she would not budge in her belief that Nana Wilda, Rissa and Smutty were just around the corner. My mother even broke out a map of Saba to try to explain the basics of geography to Eliza.

Eliza could identify some of the locales on the map, but was not dissuaded from her belief that she was on her way to Saba. On the way home two days later, she once again insisted that Nana Wilda, Rissa and Smutty would be waiting for us when our plane landed.

I had to disappoint her with the news were landing in Newark :)

"NICU" on Discovery Health

2010-07-19T22:33:00.006-04:00

Discovery Health Channel has embarked on yet another medical drama, this time with a view into the NICU

I have to admit I was pretty underwhelmed by it.

Let me say at the outset, that I have always had an issue with the term "miracle" baby, a term which was repeated throughout the show. My discomfort with the term "miracle baby" has nothing to do with any religious belief. To me terming one child a "miracle" because they struggled at birth seems to diminish the value of the life of the child who had a boring old 40 week gestation and uneventful birth. Personally, I think any baby who survives from an from embryo through 40 weeks of gestation and makes it through a vaginal birth is a miracle. It is amazing to me that most of us make it out that way in one healthy piece. But then there are the babies who make it to barely more than half of the requisite 40 weeks. I think of these babies, like Eliza, as "survivors." "Survivor" gives Eliza at least some of the well deserved credit for overcoming monumental hurdles and does not just credit some higher power for her health and progress.

Micro preemies, generally babies under 2 pounds, are a small percentage of the preemies born each year. Some estimates indicate that less that 1% of all preemies are micro preemies, which translates to a very small number of babies relative to even the preemie population. Given that small number, I recognize that the issues that we and our children face are not something that is going to be terribly relevant to a television producer who is trying to attract an audience, so I suspect our perspective will not matter much to the powers that be at Discovery Health. To a parent who spent months, not a few days, in the NICU, the Discovery Health show might have been better titled "NICU-lite."

To parents of micro preemies, I think the Discovery Health show perpetuated the idea that our babies just needed a few weeks at most until they fattened up and could go home. For sure, near term preemies often face far more problems than the public is aware. There is no doubt about this. But the show made it sound as if a 4+ pound baby was an incredibly tiny baby, when in fact that was the weight that Eliza (and probably most micro preemies) came home at after 100 days in the NICU.

This is a 4+ pound baby:

This is a 1 pound baby:

If the first show's agenda was to have an episode on near term preemies, then it should have simply stated that this was the focus of this particular episode. The problems that near term preemies face can be extremely difficult and it is incredibly important for the public to be educated to understand that each baby deserves a full 40 weeks in utero, that 36 weeks isn't "good enough." I am appalled when I hear women complain about how they can't wait to have their babies at 36 or 37 weeks. The baby needs 40 weeks for a reason.

The second episode was more of a public service announcement about the adverse effects of obesity on a pregnancy. An important topic no doubt, but not one that was particularly related to life in the NICU. The scenes in the NICU were minimal and more of a reminder of what havoc obesity and high blood sugar can cause.

I don't know what future episodes will hold and maybe Discovery Health will dare to have a show on a micro preemie and show some raw footage of the NICU life of a micro preemie. If not, you can always rent Little Man if you want to learn about the NICU life of a micro preemie. Unlike the first episode on Discovery Health, you will learn that not all mothers find the time, within a week of their baby's admission to the NICU, to have (or give a thought to) their hair, make up and nails (as did at least one featured mom).

Another good recent article on life after the NICU is this article in the Boston Herald.

I am hoping that future episodes will show a broader range of experience in the NICU and do a better job of explaining what is transpiring.

But it is television, so I am not holding my breath.

It's Very Tricky

2010-07-11T20:54:00.008-04:00

If you haven't gathered yet, Eliza is a pretty entertaining character.

Last week we went to the Bronx Zoo with some cousins. While I have no doubt Eliza knows their names, they are collectively known as "the cousins." The Bronx Zoo is one of my most favorite places and over the years it has improved and continued to delight me. Eliza loves it as much as I do.

Taken moments before Eliza face planted into the pavement:

Where else do you wear your zoo shirt:

The buzzy bee:

The cousins:

The Hungry Caterpillar series:

This is where things get "tricky." Eliza has a good friend at school nicknamed Mazi. A few days after our zoo trip, the following conversation ensued:

"Mama I want to go back to see the zoo animals with the cousins, and I want to bring Mazi, but she is a friend." The whole time she is saying this she is tapping her chin with her forefinger. I then ask her why not ask everyone to go. The response I got was: "It is very tricky because Mazi is a friend and not a cousin and I want them all to go, it is really very, very tricky."

Apparently Eliza has drawn a line in the sand as to whether friends and family can mix.

Our next adventure involves a visit to the "Statue of Delivery."

Eliza's Motto: "No Fear"

2010-06-27T23:01:00.000-04:00

I think it is safe to say Eliza likes the water.

I think it is also safe to say that Eliza did not inherit the "fear" gene:

Last Day of the First Year of Preschool

2010-06-24T23:17:00.003-04:00

100 Days

2010-06-21T21:03:00.013-04:00

After 100 days in the NICU, Eliza came home on June 23, 2006.

Those one hundred days were filled with hundreds of heel sticks, 67 days on a ventilator, a dozen transfusions, RDS, lumbar punctures, weeks and weeks of TPN, platelets, BPD, "mycins" of every variety, sepsis work ups, ROP, central lines, NEC, umbilical lines, PICC lines, echocardiograms, NG and OG tubes, AOP, infection after infection, x-rays, head ultrasounds, more "ologists" than your average person sees in a life time, eye exams and drugs you wouldn't want to try on a good day.

But they were also 100 days filled with kindness, affection, empathy and wonderful medical care from some of the best nurses, nurse practitioners, neonatologists, specialists, technicians and respiratory therapists you could ask for. I just wish I had pictures of them all.

Thank you for taking care of Eliza for her first 100 days, her third trimester, when my body wasn't up to the job. And thank you for taking care of me.

"I'm Going to Coney Island"

2010-06-20T18:16:00.005-04:00

Eliza is fascinated with the idea of Coney Island. This could be genetic since my father loved Coney Island, I could spend endless hours on the rides and neither of us could ever pass up a Nathan's Famous dog on the Boardwalk.

Today we were at the Children's Museum with one of Eliza's class mates who Eliza adores and who is just a lovely little girl. In the Dora house Eliza would call her other school friends to say that she and M were going to Coney Island to see the "ocean animals."

As they drove Benny's car, Eliza kept shouting "we're going to Coney Island!"

Friday we played some early afternoon hooky with M and her brother J and went to Victorian Gardens. It is a small Carnival that is set up on the site of Wollman Rink in Central Park. Eliza enthusiastically rode the roller coaster, the giant swing, the hot air balloon ride, the jumping frog and the airplane. Although these last three almost did me in, Eliza thought they were the best thing ever and screamed "woohoo" the entire time. The hot air balloon ride did result in some dizziness which elicited Eliza's new favorite phrase "Aye, yii, yii" (think Desi Arnaz).

As Eliza rode the "ski boat" she announced the boat was going to Coney Island (her boatmate clearly has no interest in Coney Island):

And of course the train was headed to Coney Island:

So as soon as Tio Matthew and Tia Adriana touch down in NY, we will grab Nana and Pete and head to Coney Island, where we will see Mermaids, ride a roller coaster and of course, see the Ocean Animals.

So Vamanos!

Five Minutes

2010-06-15T14:58:00.004-04:00

I've spent a lot of time with elderly people. Definitely more than average, and, no, I don't work in a geriatric care center.

We lived with my grandparents until I was five, and then moved not more than a quarter mile away, so I saw them weekly, if not daily until I went away to college. When they were in their 90's and in nursing homes I saw them regularly. On Saba, I have always really enjoyed spending time with the older folks and doing what I call the "Old Lady Tour of Hell's Gate" (Hell's Gate being the town where our house is). I traveled every year with my elderly parents until my Dad could no longer travel. When he was in a nursing home I would visit with him every week and tried to spend time with the other residents who never had any visitors. After my Dad passed, my mom started traveling with us again. I enjoy visiting the Old Age Home on Saba.

I do not say any of this because I would like a merit badge or a gold star.

I actually like spending time with the white haired crowd and I am pleased as punch that Eliza does too.

Eliza enjoys visiting the Saba Old Age Home, enjoyed going to the home to see her Grandpa before he passed away and absolutely adores seeing her Nana every week. I think our older generation should be cherished and I am glad Eliza seems to agree.

A recent conversation with some friends prompted this post. We were talking about how there is a bit of a bright line dividing the under 60 crowd. There seems to be only two kinds of people: (a) you either like seeing/calling your older relatives and neighbors or (b) you don't give them a second thought (until shamed into it, and even then shame may not be enough to motivate a phone call or visit).

The division does not seem to be gender based since we could think of as many men as women who spent time with their older family members. Age did not seem to be a big factor either, since we could all name a good number of 25 year olds who cared but also could name an equal number who likely didn't know their grandparents' birthdates. Genetics also didn't seem to factor into who did or did not take time to reach out to their older family members. Family circumstance didn't factor into the division either.

So what does make the difference between someone who can spend five minutes a month calling an elderly parent, grandparent, aunt, uncle, cousin or neighbor and someone who claims not to have those free five minutes, yet can spend 500 minutes a month texting their friends?

Watching my mother age has been a good life lesson. At almost 88 she is still pissed off that she can't do some of the things she did at 44, but still keeps on trying to do those things. She keeps her mind sharp and her heart open. She still remembers to send cards to everyone on their birthdays, even to those who forget her birthday, or can't find those five minutes to call. She still musters the strength to give Eliza piggy back rides and teaches Eliza the finer points of gardening. She may not have a computer but she sure as hell knows that people spend way too much time on "Spacebook."

How can a person not find five minutes a month for someone like that? Actually five minutes a day would not kill anyone, but I have set the bar pretty low here.

And if you can't find those five minutes for an elderly person in your life, who do you think is going to call you when you are old and gray?

Getting off my soap box now and returning to our regularly scheduled blogging.

Violation of Child Labor Laws? I Think Not

2010-06-09T19:52:00.007-04:00

Eliza is in a full day preschool program and, instead of going home after school, she comes to my office. After greeting John, Eliza gets into her real "work" at her easel:

This is of course exhausting, and being the compassionate employers we are, we allow her a brief nap on a fairly comfy couch:

I think some visitors to our offices are a little surprised to find a preschooler in our "employ" but most seem pretty well entertained by Eliza. And if they're not, well, they don't have to return :)

May 31, 2010: Memorial Day and a Birthday

2010-05-30T11:48:00.005-04:00

Happy Birthday Daddy and a very, very big thank you for serving your country ...

I miss you every single day.

Art ...May 2010

2010-05-29T22:10:00.000-04:00

While fully recognizing that every parent thinks his or her child is an artistic genius, here are some of Eliza's latest creations. Eliza tells you what she is going to paint before she starts. Eliza gives most of her paintings names that describe not only the main subject but the context.

Saba Snail (we have more than our share of snails):

Bridge Over Water (luckily not troubled waters):

Giant Squid ("like at the museum Mama"):

Green Ice Cream Cone (only green thing Eliza will eat is Pistachio ice cream):

And of course...

Bosley (our cat) Running on a Dirt Hill:

She really is quite the picky little artist, very cautious about mixing her colors, very specific about her media and brush choice. But really she is just stinking cute:

Oh and the "cat" she is strangling... a gift from cousin Karen. The "cat" bears a striking resemblance to Nana Wilda's cat Smutty, who Eliza adores. Hopefully Eliza will be moved to include Smutty in her next series of water colors :)

Not That You Were Counting, But...

2010-05-26T23:23:00.002-04:00

As of yesterday, Eliza has been home from the NICU for 1,432 days. Add in the 100 days in the NICU and Eliza has been with us for 1,532 days. Of these she has slept through the night 57 nights.

People, this is not good math.

Emu

2010-05-16T19:31:00.002-04:00

As an encore to "Humpback Whale" Eliza gives you "Emu" in chalk:

It is exhausting channeling your inner artiste.

Busted

2010-05-12T21:32:00.005-04:00

When we were on Saba in March and April, Eliza quietly stopped using her bottle and started to exclusively drink her formula from the box it comes in:

or from one of her valveless sippy cups:

In the evenings Eliza gets a couple of medications that I was able to mix in her formula in her bottle. They are luckily tasteless, or at least mix well with the yummy vanilla and chocolate flavors offered by the kind folks at Nestle Nutrition.

Since giving up the bottle I would mix the medications into a cup of formula and give Eliza her formula in a cup at night. This worked well for a couple of weeks.

Then Eliza started insisting on having her formula in the box at night. So I would poke the hole for the straw, pour out about an ounce of formula, make the hole slightly larger so I could place a medication syringe in the hole and use the syringe as a sort of funnel to get the medications in the box. This method worked well for about a week.

Until tonight.

Eliza took the box of formula I had "altered" (Eliza would perhaps use a slightly stronger word, like "poisoned" or "tainted") and handed it back to me, opened the fridge, got a new box of the identical formula and said: "I want this one."

Huh.

So I told her to go in the living room and that I would bring it to her (giving me time to "alter" this box). No dice at all. She smiled very politely and said "I'll wait here for it, thank you."

I am pretty sure I am totally busted.

At least she said "thank you."

Blah, blah, blah

2010-05-10T21:43:00.005-04:00

Eliza and I had a grand time today. Eliza got three of these:

Each one was like a nail in the proverbial coffin of her relationship with her pediatrician.

Then we got to put Eliza on one of these:

Of course Dr. G's scale is not made of shiny brass. But brass or no brass the damn thing did not move past 29 pounds. Eliza is now officially in the 50th percentile for a two year old. She is four. Actually she is now 50 months old, but who except for me is counting?

Note to gentle readers: If you have a 4 year old who is say, 35 pounds and eats "only" 3 chicken nuggets a day, or a 3 year old who is also only 29 pounds and only eat 8 jars of purees a day, I forewarn you I will NOT feel your pain, but likely suggest you do some higher math before trying to make me feel better with these comparisons. I know you will mean well, but my empathy gene is on vacation this week. It will be back next week.

Mother's Day

2010-05-09T18:50:00.004-04:00

My first Mother's Day in 2006 was just not your typical Mother's Day. As great as it is to be a new mom, spending the day in the NICU is just not something that you wrote down on your "to do" list 9 months earlier:

This year, Eliza is less wrinkled, I am more wrinkled; I now wear glasses, Eliza no longer wears her CPAP; we both are chunkier (me more so than Eliza); my mom is shorter, but she still fits in her cute white jacket and my mother's hair looks EXACTLY the same (in fairness it has looked exactly the same for the past 40 years).

Happy Mother's Day all ... especially those moms who have to spend it in the NICU.

Stolen Post

2010-05-06T21:28:00.005-04:00

Sometimes another Blogger's post is totally worth heisting. So long as you give credit where credit is due, it's not really plagiarizing.

I found this great list here

and then here

Only to discover it started here

For those of you who don't want to follow the growing list of links, here is the text of this great post:

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.

2. Because we’ve discovered patience we never knew we had.

3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.

4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.

5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.

8. Because we are strong. Man, are we strong. Who knew we could be this strong?

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

10. Because we work overtime every single day.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.

12. Because we are more selfless than other moms. Our kids need us more.

13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.

14. Because we inspire one another in this crazy blogosphere every single day.

15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.

16. Because we never stop pushing for our kids.

17. Because we never stop hoping for them, either.

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."

20. Because, well, you tell me.

Nurse's Week

2010-05-05T22:39:00.004-04:00

May 6th marks the beginning of Nurse's Week. The week culminates on May 12, the birthday of Florence Nightingale.

If you are lucky, you and your loved ones have never really needed to rely on skilled nursing care.

Then again, maybe those of us who have had to put our lives, and the lives of our family members, in the hands of nurses are the lucky ones since we have been given the opportunity to meet some extraordinary people.

It is impossible for me to ever adequately thank the nurses who cared for me and Eliza. They helped Eliza when my body failed her. How do you thank someone for that?

Thank you all.

Artist in Training

2010-05-05T16:48:00.002-04:00

One of Eliza's favorite animals:

The humpback whale.

Not a bad rendition for a 4 year old who supposedly has the fine motor function of a 20 month old!

"Off the Bottle"

2010-04-30T18:53:00.005-04:00

So the big news here at Casa Eliza is that while we were on Saba, Eliza's beloved Dr. Brown's bottles slowly faded away. There was no hoopla, no ceremony, no reward. Eliza just stopped asking for them.

This leaves me with two problems.

1. Between our NY apartment, our house on Saba, my office, my mother's house in NJ and my car I have 33 of these:

Trust me, when your kid's only source of nutrition is formula from a bottle you accumulate quite the collection.

2. The second problem is my beloved mother telling any and everyone who will listen that "Eliza is off the bottle." Now this doesn't sound all that bad, except for the fact that everyone and their mother is under the very, very, very, very, very mistaken belief that Eliza now eats steak au poivre with grilled asparagus.

So to be clear:

Eliza is "off the bottle" but drinks her formula from a cup or the box. Eliza is not "off the formula."

All of you well intentioned and kind folks can stop filling up my voicemail with congratulatory messages that Eliza now eats food. Hope does spring eternal, particularly for my mother, but please stop asking me how Eliza likes her steak cooked :)

This is the closest Eliza will get to steak (the bull not Peter!):