So, where are they?...

The other blind kids that is. Where are the other Zelda's? The other smart, saucy 2 year olds that are each day learning to live in a seeing world, starting to learn Braille, learning to look towards a camera and smile when they don't even know what a photo is...

On Saturday, we went to a "Blind Santa" party - at least that's what I called it. It's an annual fête thrown by the Division of Blind Services for kids with visual impairments and their families. Santa was there along with an elf with big ears. The entire family went and the twins seemed to have fun BUT I didn't really see any other blind kids - at least not ones like Zelda. There were several CP children with multiple disabilities, lots of babies held tightly in their mothers' arms - but where were the white canes? Where were the pre-schoolers and their parents that I could meet and ask for advice and share stories and milestones? I know you're out there, I just know you are. There are other Zelda's...now, how do I find them?

On an ironic note: our neighborhood is being overtaken by solicitations for charities - many of whom don't exist. My favorite was this rather ill-kept guy who came into my shop the other day and handed us a piece of paper (real documentation!) with a website and all, asking for money to send the 5000 blind children of Austin to a holiday party at a shopping mall. Hmmm...5000 blind kids right here in Austin. You see, I knew they were out there somewhere!

The elves are coming to town...

and they're named Creed and Zelda.
This so cracks me up!
http://www.elfyourself.com/?id=1221006677

Word of the day...

twintuition.

I think that they have it.

So sometimes one has to write about the not-so-fun stuff...

so Zelda had a seizure last week. It's the first one she's had since January - but even then the neurologist was only calling them "spells." You see, it all started last summer (2006) when she was just a babe. They say that kids born with toxoplasmosis can have seizures and Zelda started to have some unusual 'episodes'. Basically it goes like this: she gets quiet, she gets pale, her lips start to turn dark purple, she is unresponsive and her hands are limp. I would pick her up, rub her back and in a minute or so she would stir and then fall into a deep sleep for an hour or so. Last fall we called EMS several times and she was hospitalized for days on end, hooked up to an EEG to chart her brain waves. And still, no evidence of seizure activity. They would just send her home. Finally right after the New Year 2007 and yet another 'episode' and trip to the hospital, we pretty much demanded she be put on some kind of medication. So, since then, she has been on Keppra. She has done so well...until the other day.

It's no fun to get that call from your nanny while you're getting ready to go home from work. Luckily, my shop is 100 yds away from home so I ran when Candi called. We called EMS and Zelda's neurologist and all concur that it was a breakthrough 'episode' related to a high fever. She had been snotty and sick all week. But now we watch and worry and wait. Will it happen it again? Probably. It sucks.

But Creed was a champ. He watched, he was quiet and when Zelda finally fell asleep on Evan's chest, Creed climbed onto the day bed and laid his head on her back and stroked her hair.

Maman is leaving town...

yes, I am actually going on a 'girls' weeekend'. Having never done this before (my closest friends besides my sisters happen to be male and/or gay), I imagine it will be the ultimate estrogen fest. Anyway, 10 of us will be in staying in Santa Fe at Ten Thousand Waves for a few days. I like the idea of a zen-like setting, a massage, hot baths, lots of sleep and...cocktails!?
Happy Birthday KitKat!
Good luck Evan!

"Differently" abled...

not disabled. That's what the NFB (National Federation for the Blind) calls my daughter. I love that they say that...

Zelda is involved in their pre-Braille reading program and she devours books everyday. That's not my bunny, Counting Kisses, Roly Poly Man, Jennifer's Messes...are on the top of her reading list. I'll find her in her play corner with a book in her lap, running her fingers across the pages. She rocks.

My cup runneth over...

Well, actually it broke.

One of my favorite tea rooms in Paris is called Angélina. It's a lovely space on the rue de Rivoli where you apt to find well coiffed silver haired women with poodles in their laps as well as Japanese tourists waiting in line for a lovely table surrounded by Louis XVI chairs. We go there not for the tea (for that I prefer Mariage Frères in the Marais) but for the chocolat à l'africain. The lovely serveuse, in her black skirt and crisp white blouse, will bring a pot of THE thickest, richest hot chocolate that you have ever tasted. It pours like motor oil and comes accompanied with a bowl of crème de chantilly and the requisite pitcher of water for the mere taste of the chocolate elicits thirst. No need to order any pastries or cakes, the chocolate is enough.

A few years ago, my dear friends gifted me a set of chocolate cups from Angélina. They're made of white porcelain and are low and broad with Angélina inscribed around the lip in green script. Each morning, I take my tea (preferably Marco Polo or Pleine Lune by the aforementioned Mariage Frères)in one of these cups. It has to do with my commitment to the "quality of life". It's a slice of luxury, refinement and grace. It's my 3 minutes of escape, it's my ritual. Well, until the other day, when Evan came to tell me that Candi, our nanny, had broken the cup and saucer. They were both afraid to 'break' the news.

But you know what? I wasn't upset...it's a broken cup. I can get another one. It's fragile like life, but my kids are alive!!! I'd trade an Angélina cup for them anyday of the week...

And anyway, I said I had two didn't I? Cups and kids...

Happy Halloween 2007...

Haven't been posting much but just had to share these amazing photos of what are lives were like 2 years ago today. Just tiny little pumpkins:
This is Creed at 6 weeks old, probably weighing in at 3 lbs or so...
Zelda was definately stylin' for Halloween 2005 - this was her very first outfit ever - a little bit of grunge a little bit of Wilma Flintstone.
Evan arrived at the hospital just before midnight to celebrate Halloween.

Comprehension precedes expression...

So the twins are just starting to talk. Every day they have a bit more to say. That's not to say that they haven't been trying to express themselves for months now. Creed is not a big talker but has several words that he likes to pronounce on command:
-banana
-elbow
-bubble
-baby
And he willingly responds to "What does a sheep say?" He likes his B's. At times, he is willing to throw in Ma,ma,ma and Dada. He'll also have a little chat especially on the changing table while pointing at something. I have astutely interpreted some of his words to mean "I want that." Good thing I have a trained ear to interpret foreign languages.

Speaking of foreign languages, Zelda loves to repeat the French alphabet - esp while in her car seat on a road trip or when she's swinging. The English alphabet holds little interest for her. She has also taken a shining to Gwyneth Paltrow and that Cold Play guy's daughter and seems to call her baby doll "Apple".
Zelda likes her gibberish but in the past few weeks is breaking out of her 'echolalia' mode (look that one up!) and will instigate communication more than just repeating our words, sounds or anything else she hears. Apparently it's pretty common for a blind child and we love her imitations of burps, sneezes and other bodily functions.

But the best thing of all is that Zelda now understands the concept of "give". Imagine being blind and never seeing anyone "give" something to someone. It's hard enough for a seeing toddler. Teaching Zelda is so much about conceptual understanding. Each time we guide her hand we need to reinforce that she can do it without us helping/touching her. I have been playing patty-cake with her since she was an infant and even now, she still thinks the game is played by directing her hands (or vice versa). So when the other night at bedtime I said to the twins, "Give your toothbrushes to Daddy" and she walked over to Evan and handed him her brush, I got tears in my eyes.

Just had to pick up a little something...

.

Left Austin on friday morning and a mere 7 hours later we were in Marfa for El Cosmico - a lovely weekend in the dry desert sun and dirt filled with friends, barbeque, and live music. The weather was glorious and the kids were in rare form - happy and enjoying the wide open spaces.

The kids were dying to go shopping at Prada so we just had to stop by and hit the summer sale. No really, for those that don't know - the Prada Marfa installation is "art". The sealed shop sits on the side of the desert highway and collects bugs and dust and amuses/confuses passers-by. Over the years it will continue to decay and sift back into the desert floor. Just 35 miles from the art community of Marfa (made famous by Donald Judd settling there in the 1970's), the Prada cube has been there for 2 years or so now. The story I love is that vandals actually broke in
and stole a shoe or two - they only display 1 shoe of each pair for just that reason, to deter thieves. I guess someone out in west Texas is walking around in an extremely well-shod left foot.

Meanwhile back at El Cosmico, others were camping in vintage trailers and tents but we were lucky enough to have the use of a lovely house in town. I couldn't really imagine camping with 2 year old, over-stimulated twins who were pumped up on crazy meal schedules, music until the wee hours and dogs everywhere! We settled in quite nicely to our minimalist abode and drank in the atmosphere of the West Texas light.

Don't tell me how sorry you are...

that my daughter was born blind. Tell me that you're amazed at how well she is doing and how silly she is when she giggles. Tell me what a good mimic she is when she 'burps' on command. Tell me how smart she is when I say "Zelda, let's count in French" and she says "Un, deux, trois". Tell me how proud you are of her fearlessness and determination and independence. Tell me that she is a good dancer. Tell me that you can see she is a wonderfully, loving child when she gives you a hug and a 'bisou'. Tell me that you are thrilled that she is doing so well. But don't tell me you're sorry. You had nothing to do with it. And I don't need your sympathy 'cuz Zelda is a 2 year old superstar.

Please honor our toxo babies...

Zelda and Creed will be turning 2 years old this week. They are thriving! But for the rest of their lives, they will have to deal with being born with congenital toxoplasmosis...and so does Fin. He's their friend that they met in Chicago through the Toxoplasmosis study. He was born with the evil parasite, too. His mother also unknowingly contracted the infection while pregnant. It really, really sucks! As parents, we want only the best for our kids, and if that means learning to live in Holland (see a few posts back) - by god, we'll do it!

Please honor our babies and go to Fin's website. His dad will be running the Chicago Marathon with 2 others to raise money for the Toxoplasmosis Study Group to help all of the babies born with this ridiculously strident infection.

Happy Birthday Toxotwins! And love to Fin and his parents! Please donate - pay it forward...www.thefinster.com

They're tryin' to make me go to rehab...

but I said 'No, no, no'...
This is currently Creed's new favorite song. He smiles, spins, moves his arms up and down and says "Noooo, noooo, noooo." Last week it was "Jump, Shake your booty" by Bob Schneider. This week it's Amy Winehouse. Itsy, bitsy spider - we are movin' on!

Of course, in a more serious mood, here's Creed challenging Nana to a game of dominoes:

Reasons why I am glad that August is over...

After the birth of the twins and living through their time in the NICU, their illness and surgeries, I swore that I would never wish for the passing of time. Each day needs to be cherished and treasured. But some days/weeks just plain suck - it's just that simple. Not to say that September will be any easier, here are reasons why I am glad that August is over:

- Business sucks and no one is spending any money this summer in my shops or anywhere else on the street.

- I am tired of seeing co-eds in flipflops with ironed hair and cell phones glued to their ears not understanding the concept of style or elegance. Please bring on fall and the holiday season!

- Zelda has had a snotty nose for the past 3 weeks. I'm tired of boogers.

- I have had absolutely no luck in finding a 2 day a week morning daycare in which to enroll the twins into a 'socializing' situation.

- The city as well as the attorney we have hired have still not resolved the stalled building permits issue concerning our house remodel.

- My dad had a massive heart attack but today he was discharged from the hospital.

So with that last reason, September is already better than August. So long summer...

Welcome to Holland

This was sent to me by a couple whose son was born with congenital toxoplasmosis. Read it!! It's appropriate for so many of us in so many different ways.

"Welcome to Holland"

I am often asked to describe the experience of raising a child with
a disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this:

When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of going
to Italy."

But there's been a change in the flight plan. They've landed in
Holland and there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books. And you must learn
a whole new language. And you will meet a whole new group of people you never would have met.


It's just a different place. It's slower-paced than Italy, less flashy
than Italy. But after you've been there for a while and you catch
your breath, you look around.... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.

- Emily Pearl Kingsley

New flash: Zelda likes hills.

Apparently, according to our nanny, Zelda loves the hills at the park. She sits, she smiles and she rolls. Then, she does it again. I can't wait to see this. She is all about discovering her own unassisted movement but also, how she affects the movement of others. Another new favorite trick is to push us over and then pull us back up. Usually Evan will be sitting and she'll grab his shirt, smile and push. Then, when he's down, she'll pull him back up and repeat this several times. We'll say "Up" and "Down". She'll also stand between my knees and push them open and pull them closed. They say that toddlers like to perform repetitive actions in discovering their own forces upon the world. Creed will open and close drawers or doors. It's interesting that Zelda uses people.

It's difficult to photograph la petite Z because she often has her head down. But here's a photo from right after eye surgery - not too happy...but then, a few days later: woo-hoo! the towel dance!!!

The glasses have arrived!

Of course they are Italian and very stylish...I think Creed looks like a hip, American version of Harry Potter. Don't you?
He does so well with them and only tries to pull them off when they get dirty or he is tired. I'm so proud of him! And he gets great comments wherever we go. I guess it's uncommon to see a less-than-2yr old in spectacles. But just to recap, Creed has a scar on his right macula from the nasty toxo parasite. They think he can see around it - or possibly through it - no one knows for certain. What we do know is that his right eye is weaker and we need to even out his vision and keep those eyes working together. Without his glasses, if you cover his right (scarred) eye, he sees fine with the left. If you cover his left (good) eye and is left to see with his scarred eye, he gets cranky and pulls away. Thus the need for regulation so he will not develop what is called 'amblyopia' - we don't want that right eye to shut down completely and for him to become dependant on his unscarred eye.

Obviously his glasses aren't slowing him down:

I wanna be blind, too.

Sometimes I just wanna be blind, too.
I wanna be blind...

- to not see the way people stare at Zelda with their eyes full of pity instead of joy and admiration.

- to ignore the doubts and fears that I have for her future.

- to wake up in the morning and experience the start of a new day in the way that she does.

- to be able to have no preconceived notions or judgements of people based on their appearance.

I am sure that there are more reasons.

Once upon a shame...

If you have 10 minutes, here's what we did with our Christmas vacation. Actually, it's what we've been doing with our once a year get-togethers since 1986, except now it's starring Creed & Zelda.

http://youtube.com/watch?v=k7yNB3vMfKI

What's a projector?

A blind child with some light perception was working with her teacher in school. The teacher had projected light on to a board. She asked "Do you see the circle?". The child responded "What's a circle? Do you mean the light?" The teacher responded, "Yes, its' coming from the projector." The child responded "What's a projector?"

Once again, this thrusts me into the reality of Zelda's world. We are currently working with the twins on eating with utensils. Creed sees me eat with a fork. I stab a piece of food. He eats it off of the fork. Then I stab another piece and he takes the fork and feeds himself. It's just that simple. Can he say fork? No, not yet. He is beginning to realize that the fork is a tool for feeding? I think so. Now Zelda, on the other hand, is given the fork to explore. She touches it, plays with it, puts it in her mouth - just as she does with almost any new object. She's in her booster seat so hopefully there is a relationship to eating going on there. But the idea of the fork being a helpful "tool" to get food into her mouth must not even enter her sharp little mind. It's a Lego, it's a doll, it's a rattle...I can only explain so much to a toddler. "Forks are used for eating." But her hands work perfectly fine...who needs a fork?

Hmmm...

Take this quiz...

Stolen from Bookhart - thanks!

My Liberal Identity:

You are a New Left Hipster, also known as a MoveOn.org liberal, a Netroots activist, or a Daily Show fanatic. You believe that if we really want to defend American values, conservatives must be exposed, mocked, and assailed for every fanatical, puritanical, warmongering, Constitution-shredding ideal for which they stand.

Take the quiz at www.FightConservatives.com

Look at what Evan has been up to...

CSI: New Jersey or Six Degrees of Separation

I'll just cut to the chase. I like to say that although our twins were born in Texas, they were built in a factory in NJ, at least that's where our fertility clinic was located. In June of 2005, 3 months into my pregnancy, I received an email from my college roommate asking me about the clinic where I was impregnated as she sent me links from several articles that had just appeared in the New Jersey newspapers. The story goes something like this:

Apparently sometime in 2004, spread out over the course of a week, 3 suitcases washed up on the shores of the Chesapeake Bay. Found inside the suitcases, wrapped in green plastic trash bags were the parts of the dismembered body of a man later identified as William McGuire. Forensics later showed that he had been drugged, shot, and cut up meticulously with a reciprocating saw. They speculated that the 3 suitcases had been tossed off of the Bay bridge and had floated around, never washing out to sea (much to the dismay of the murderer or murderers) only to be washed up separately; thus the body parts having to be fitted together like a puzzle. Upon questioning the wife, Melanie, she revealed that her husband had 1. over the past year become increasingly 'menacing' in their marriage, 2. liked to gamble and had accumulated horrid debts, 3. threatened her on the night of the closing on their new $500,000 house, and then 4. disappeared and she hadn't heard from him since. Within 2 weeks of his "disappearance", she had filed a restraining order against him and then filed for divorce. His car was later found abandoned in the parking lot of an Atlantic City motel.

It was revealed that Melanie was a nurse at RMANJ, a prominent Morristown, New Jersey fertility clinic. The clinic was founded by an old friend of mine from high school, hence our connection, and we were coincidentally sent there by our specialist here because it is considered one of the best in the country. We traveled back and forth across the country to the clinic several times to see Dr. Richard Scott who has great success rates with fertility-challenged women. It also so happened that Melanie was secretly carrying on a 2 year affair with one of the other doctors at the clinic, a Bradley Miller.

Well, last night the story was on Prime time "Family Secrets". It had also been on "48 Hours Mysteries". Melanie, after a year long investigation, was arrested and charged in 2005 with her husband's murder. She was recently tried and found guilty of chopping up her husband and is awaiting sentencing. Bradley Miller apparently wore a wire and turned state's evidence against Melanie but in the meantime continued to have an 'intimate' relationship with her. This is one of the juiciest tales of murder, adultery and betrayal that I have heard of in a long time. Of course there are no witnesses to the crime but the 'coincidences' are undeniable. She sure seems guilty to me. Major points include: 1. She had purchased a handgun in PA days just days before Bill's disappearance, 2. the suitcases were hers, 3. a blanket from RMANJ was found wrapped in one the suitcases, 3. the trash bags match those found under her kitchen sink, 5. they have Melanie on motel video-tape parking her husband's car in Atlantic City late at night...the list goes on. Wow, this is so worthy of a prime time Law & Order or CSI episode. Just do a Google search for Melanie McGuire and see what you come up with.

Back to the less than 6 degrees: In March 2005, Evan & I flew to NYC to spend a week going back and forth to RMANJ to get pregnant. When the day came, the embryos were cooked and ready, I arrived on a Tuesday afternoon for the transfer. (I promise to write a play-by-play report on this fertility struggle at a later date.) I was led down the hall, belly full of water to prep for implantation. As we passed Dr Scott's office, he was seated at his desk - not in scrubs - but beaming into a TV camera lens, obviously doing an interview and too busy to deal with me and my already anxious uterus. They led me to the waiting gurney and a masked doctor entered. He showed us a photocopy of 4 blastocysts and said: "Hi, I'm Dr Bradley Miller and I'll be transferring these 4 embryos and we'll hope for the best."

Well the best happened: I became pregnant with twins and Evan and I are the happy parents of Credence and Zelda. A few months later, Melanie McGuire was arrested, Dr Bradley Miller stopped working there and the rest is a prime time true crime episode. We never saw Dr Scott again but I hear he still works there and has a very high success rate.

We like Dan Flavin.

LOVE-HATE

Have you ever seen the movie Night of the Hunter starring Robert Mitchum? It is a creepy film-noirish classic about a wacked-out preacher. He has love-hate tattooed on his fists. Eventually this look was replicated by rappers, rockers and punks everywhere. Anyway, when I was little our Nana made the best apple cake. It was this awesome apple pie-like concoction that was kept in her pantry in a large deep cookie pan. The apples were not too sweet with just enough cinnamon. The crust was perfect: chewy not too flaky. It was perhaps my favorite thing in the world as a child. I used to say "I love Nana's apple cake." My dad, always the pragmatist, soon put a stop to that. He would answer "You obviously like Nana's apple cake a lot but you can't love an inanimate object. Love and hate are very strong words that are reserved for people." I quickly replaced love with 'strongly like', 'adore', 'admire', etc when speaking of food, clothing and carnival rides at Fairy Land. We grew up in a household where we freely said that we loved each other. We still say it today. My nieces say it before they hang up the phone and I'll teach it to my kids. But then there's the hate issue.

Today I looked at the front page of the newspaper as I bought my croissant and bananas at Jo's. I saw that Bush had vetoed the embryonic stem cell research bill. I felt the H-word rising in my throat. I will freely say that I think he's an idiot. He is perhaps the worst president in the recent history of this country. He has no vision of the big picture and runs amok with his sniveling, snide, snorting remarks to his "folks" out there who still will listen to him. Aside: Is there anyone out there that still supports him? Because if there is, I would be interested in hearing - in a sane logical conversation - why! I bite my tongue when I hear his name - oh, how I want to use the H-word. I don't want my kids to grow up using it where people are concerned. They are free to hate homework, brussel sprouts and prune juice but we'll have to employ 'loathe', 'strongly dislike' and 'abhor' when it comes to people. It takes way too much energy to hate and so I'll end this by saying that I detest George Bush with a passion. AND, I'd like to see what he would do if Barbara SR and her big ole' pearls came down with Alzheimer's or dear daddy George developed Parkinson's. Or how about HIS precious twins? Would he start singing Nancy Reagan's tune if one of the girl's went blind or perhaps lost a limb or became paralyzed? Hmmmm.

Just had to add this...

You Are Pinot Noir

Sophisticated and worldly, you probably know more about wine than most drinkers. You have great taste, and you approach all aspects of life with a gourmet attitude. You believe that the little things in life should be cherished and enjoyed... and of the best quality possible. And while you may take more time to eat a meal or tour a city, it's always time well spent. Deep down you are: A seductive charmer Your partying style: Refined. And you would never call it "partying" Your company is enjoyed best with: Stinky expensive cheese

What Kind of Wine Are You?

Why we do it...

For those of you with kids - or not - we all must at one time or another think about why we do it. Sometimes I think that it's just so we don't have to think about the shitty things in our lives...paying bills, medical issues, buying, selling, food, clothes, lodging...how WE feel, what we look like, getting enough sleep. The days when I just want to crawl in bed under the covers and not leave my house, when I can't decide what to wear or how to grow my business, when my personal life feels flat, when my intellectual challenges hold no interest or I can't muster the strength, time or space to be creative - I just look at them. My kids.

There are all kinds of reasons why people have/raise children: to carry on the family tradition/name, the biological clock-yearning thing, because it's what humans do - bla, bla, bla...

I really think it boils down to making us think about something other than ourselves. I no longer matter except on an existential level.(yes, sure a happy, healthier me will add inspire and nourish the development and growth of my twins) But I can tell everyone out there to just "Leave me alone" so that I can concentrate on the wellbeing of my little creatures. Isn't it great?

Just a thought. Sorry for the ramblings.

The inmates were running the prison.

So, upon our return to the RMH after our weekend in Vegas, we were moved to a slighty bigger room - at least we could fit in 2 porta-cribs! Our daily routine consisted of waking up - whenever! - our Texas schedule went out the window suffering from time difference + lack of our beloved nanny's time clock + living together in one room. We took our breakfast downstairs in the kitchen, thanks to these chairs: Phil & Ted's Me Too! (highly recommended for jet-setting toddlers). They can accomodate up to 35 lbs of toddler but fold up flat, weigh less then 2 lbs and can easily be packed into a suitcase. I really appreciate good design.
Dining out even for a quick lunch is difficult with twins at this age...i.e. there is no "You eat while I walk the kid around the patio". It basically consists of shoving the food in your mouth while you each monitor one twin who is ready to explode at any moment. I really do think that it's just the age - but I will add that Zelda definately has a harder time of sitting still for no reason. Nothing to look at for entertainment. Once she's done, she's done. Up and out. Things to do... So our meals, when not taking day trips, were all eaten at the RMH.

Segway into the inmates: have you ever smelled chicken legs boiled beyond belief then sauteed in cheap corn oil in an old frying pan at say, midnight?! Our first room was up the stairs from the kitchen and I had to sleep with a pillow over my nose. Why are these people cooking at midnight? Why is a child bouncing a basketball in the bathroom at 9pm when my baby is recovering from surgery? Why is a mom vacuuming at 10pm? - actually 9:58pm, I think she knew the rules. Our second room was a bit more private and we gracefully settled into putting the twins to sleep at night and then feigning sleep on the bed near them since they knew we were there. When they finally were asleep we would pop in our latest Blockbuster DVD and try to keep our eyes open long enough to make it to the credits.

Despite my bitching and the disorganization of our accomodations during this particular trip, I must say that we love the Ronald McDonald House organization. This was our 3rd trip staying out in their Pasadena location. Evan spent a month there when Zelda was 3 months old and living in the NICU at Huntington Hospital while I lived at RMH in Houston for 3 1/2 months. Their generosity, hospitality and support for families with children dealing with medical issues is without compare. By the time we had left Pasadena, we had met families with a child suffering from bone cancer, a little girl with facial dysplasia, a 12 year old boy with paralysis from a gunshot wound to the head and his dad who were the only survivng members of their family killed by bandits in Honduras and a couple whose baby, with an immune disorder, lived inside the hospital in a sealed environment. All of us are families from different economic and cultural backgrounds that are linked by out-of-control medical bills and travel away from home, and yet wanting the very best for our children.

Evan and I are so very, very lucky that Creed and Zelda continue to grow and thrive.

Our big fat, Medical Vacation....

Whew! What a trip: take 2 highly opinionated, creative, active adults and put them with 2 crazy, learning-to-do-everything toddlers and shake 'em all up. Put them in one room at the Ronald McDonald House in Pasadena, California for over 2 weeks and intersperse their stay with medical appointments, a surgery and a procedure and what do you get? Almost but not quite murder...

It was wild but we did have some fun.
Upon arriving, we were checked into our 10' x 10' square room at RMH. It had 1 double bed - that's it for 4 of us. "There must be something wrong!", I assumed, "I called ahead"! But there was literally no room at the Inn for several days so we hunkered down and snuggled up. Zelda slept in a Pak n'Play and well, Creed: he slept in the closet! We made him a little pallet of blankets and after he would fall asleep on our chests at night, we would move him into his little hidey-hole and just leave the door ajar until morning. Of course under the circumstances, he was only 2 feet from our bed so we could see him as he slept. After the first night, the New Jersey in me came out and I immediately put in for a room change. This was not acceptable!

We checked in with Dr Tawansy who delighted in seeing the progress of the twins. Zelda smiled, did her little 'River Dance' steps while Creed charged around his office. Zelda's surgery was scheduled for the next day. It went off without a hitch. He performed a vitrectomy to clean a hemorrhage out of her left eye. Theoretically, her left eye is her 'bad eye' with little chance of vision. The retina was never properly formed and there is little or no vascularization. We have the surgeries to keep her eyes healthy. They seem to be growing despite her micro-opthalmia and Dr Tawansy was able to measure her eyes, photograph them and estimate an appropriate prescription for some new spectacles. Luckily her retinas have remained re-attached (she had retinal re attachments performed last summer). The most difficult part of this most recent surgery was her waking up from the anesthesia - it was harder than ever. She was miserably writhing, crying, trying to rip out her IV and refusing to eat. Of course, you are not allowed to leave the hospital after a day surgery until the child can drink something and Zelda simply refused. I think it's a toddler thing. Creed had a similar reaction this time as well - and never before, in all of their surgeries, have they ever reacted like this. The poor little pumpkins!

We decided to drive to Las Vegas for Memorial Day weekend and stay with Michael & Sean. Michael is Evan's cousin and he lives in an amazing house in an old Vegas neighborhood called the Scotch 80's. They have done a gorgeous job remodeling this over 5000sq ft house and they are excellent hosts. Evan had a few contacts to make - he sold 2 vintage neon signs as home decor - so it was both business and pleasure. We spent a lovely day at the Turnberry Country Club and the twins enjoyed swimming in a very chic and extremely warm swimming pool. Evan & I enjoyed margaritas! The road trip/traffic was hell on the highway from LA to Vegas and back as it was the holiday weekend. Notable sights along the way included: the Converse sneaker outlet in Primm, NV where they twins aquired their first pair of All Stars, the aging "lot lizards" (that would be prostitutes) in Barstow, and the Alien Jerky shop (I loved the combination of selling beef jerky with a Roswell twist) in another little town whose name I have forgotten.

Back to RMH, safe and sound after a long weekend, we readied for another week of day trips around the LA area and visits with Dr Tawansy. (to be continued...)

Promises, promises...

We have been back from California for almost a week now and I promise that I'll update tomorrow. For now I'll leave you with a few highlights of our "medical vacation" - that's what I'm calling it since the twins officially only had 2 procedures as outpatients and the rest of the time was spent entertaining the toddlers and trying not to kill each other. So, think: dr's appointments, eye surgery, Memorial Day weekend in Vegas, more dr's appts, Rockin' Baby Shop, downtown Pasadena, thai food, antique shops, Venice Beach, Santa Monica, the Watts Towers, the LA County Museum, Fred Segal, Kidspace, Applegate Gallery, Santa Barbara, eye procedures, lots of movies rented from Blockbuster, lots of Pirate Booty, avocados and meals in the kitchen at the Ronald McDonald House.

California here we come...

Do you remember that episode of "I Love Lucy" where Ricky & Lucy, Fred & Ethel drive cross-country in a convertible? Ricky gets a job in Hollywood and of course, they all go with him. They've have all kinds of adventures along the way. I loved that series. Am I showing my age?

Anyway, we're off to California - Pasadena to be exact - on Wednesday. Another schlep through the airport with the twins but at least we'll have a direct flight to LAX. We're getting pretty good at this travel-with-toddlers thing. Once there, we'll rent a car and settle into the Ronald McDonald House in Pasadena. We've stayed there twice before. Evan spent a month there with Zelda while she was still in the NICU and having her first eye surgeries. Then last summer, the 4 of us spent 2 weeks out there so that both twins could have exams and surgeries. Our eye doctor of choice is Dr Khaled Tawansy (of course recommended by the Oracle) who has experience dealing with toxo kids as well as ROP - that's retinopathy of prematurity, for all of you non-preemie parents out there. Zelda will hopefully have outpatient surgery as well as exams to be fitted for some new little spectacles. Creed will be examined as well - possibly under sedation - and will be fitted for some stylin' new glasses. I'll go into the surgeries later and spare you the details for now. Just please, wish us luck - or more specifically the eyes of our tiny toddlers.

Pasadena promises to be sunny and temperate. It's a lovely town filled with mid-century sprawling homes with lush gardens of the most gorgeous flowers and greenery. Each time we go, I try and imagine us living there. If only...
When not in hospitals and appointments we'll spend our days visiting museums, galleries, the beach and eating Thai food at our favorite Pasadena restaurant. We'll have mojitos at the Hotel Figueroa and eat steak at the Original Pantry. There's a Dan Flavin expo at the LA County Museum and a gallery in Santa Monica is interested in Evan's work. The RMcHouse has a lovely lawn and Zelda has a new bathing suit. My plan is by the time we return home, the twins will be proficient in drinking from cups on their own. Not sippy cups, mind you! Creed is well on his way, hence the bathing suit attire for la petite Z.

So off we go, I'll try and update from there.

Walk America 2007...

Carbo loading before the walk.


Practice - and yes, Evan did the entire walk in jeans and cowboy boots.


We're ready to walk.


Team Toxotwins at the finish line!

Next year we'll have team t-shirts - will you walk with us???

What a week...Mother's Day, etc...a puking diary

Saturday: Walk America 2007 - Team Toxotwins raised over $8000! Thanks to all who donated and to our family and friends who participated. Next year we'll have team t-shirts!

Saturday midnight: Zelda wakes up vomiting.

Sunday a.m.: Zelda is still vomiting. We call the Ped. helpline, they say to take her to the ER due to her fragile history.

Sunday: Happy Mother's Day. We spend from 8am - 1pm in the ER. Zelda's head CT and shunt series x-rays come back normal. She gets a Zofran pill to control the vomiting and we go home. She pukes again at 9pm. Nice. Curdled milk all over me.

Sunday p.m.: She has a fitfull sleep with us. Creed sleeps peacefully - no symptoms on his end.

Monday a.m.: Zelda will only take milk, no Pedialite or anything else. Of course, she pukes again. We are fairly certain it is not a shunt malfunction thanks to the ER visit but we are concerned about our skinny little 'puce'(flea). We go to see Dr Ruiz the pediatrician. Her blood work is fine, her abdominal xray is normal. Could it just be a virus? La petite Z really can't afford to be losing any weight.

Tuesday a.m.: Z hasn't puked in 24 hours - whew! I was getting tired of doing laundry. But now her left eye is inflamed and swollen. Back to see Dr Ruiz. He gives us drops and says it's almost certainly a result of the virus and sends us home.

Wednesday a.m.: No puking in 48 hours and Z's eye is starting to look better. Dr McLeod has called from Chicago. The word is out there that our toxotwin is ailing. We need to be certain to monitor all symptoms as illness in a toxo baby can be different than in a 'healthy' child. We go to see Dr Timothy George, a neurosurgeon stand-in for our Tiki Gods, as Houston is a bit far to travel for a check-up. He checks out both twins and gives them the thumbs up.

Today: Zelda seems to be getting back to normal - eating, dancing, chatting. Tonight we'll go to an art opening with the kids at Women & their Work Gallery featuring the photos of our friend Denise Prince-Martin. Tomorrow, Scott - her vision therapist - comes for the last time before we head off next week to California.

The Fortunate 500

Once a year, the Austin American Statesman puts out a list of 500 "movers & shakers" in town that influence different areas in our community such as food, politics, media, heritage, philanthropy, etc. Since its inception, Evan & I have made the list for "Style/Fashion". We appreciate the recognition but also question their choice. For at times, usually at our lowest moments, it feels like the emperors new clothes. It's all smoke & mirrors and the public is buying it. Not that we don't have a wonderful life together with our twins; it's the other stuff, the day to day paying of the bills, running our businesses, trying to build up on our house, worrying about medical issues.

As far as the name "Fortunate 500" goes...when I see the other names on the lists, so many of them are major players. The couples with buildings named after them. The women who married "well". The old Austin families who donate lots of money. Sure, they may be fortune-ate. But we are so lucky in other ways:

-we have each other. My partner in life is wildly intelligent, creative, silly and "stylish", too.

-our kids are alive and flourishing beyond all expectations from the medical community.

-my entire family now lives nearby and my parents, who are in their 80's, are alive & kicking (and swimming, playing golf and the latest - playing pool!)

-we have such good friends that have supported us through all of our trials and tribulations and continue to take an interest in our lives and those of our children.

-we are healthy as we move past our 40's into our 50's.

-we continue to challenge ourselves both intellectually and creatively to produce things in our community.

That's only 6 things I am lucky enough to have. I am sure that I could think of 494 more...

What once was lost has now been found.

Somehow yesterday during one of their many outings in the stroller, Zelda lost her glasses. She wears little pink plastic eyeglasses with thick coke bottle lenses. When we look through them all one sees is a blur. We are hoping that they at least help her to see something/anything. Last summer while in California, Dr Shihady at the Center for the Partially Sighted guessed at a prescription and since then, we have tried to convince Zelda that she should wear her little glasses. She has just recently started to pay attention. Who knows if they actually do anything but she sure looks cute.

But then yesterday, she lost them. I am sure that she was getting pissy during an afternoon stroll and whipped them off of her head and dropped them on the ground. Candi was frantic and rewalked the route twice. Then Evan and I took out the kids before bedtime and searched the neighborhood. The glasses are not cheap and anyone finding them would realize they're not your ordinary little spectacles. We went to bed defeated and frustrated.

Today Candi rewalked the route in our brand spankin' new jogging stroller and she found the glasses. Someone had picked them up off the ground and set them on a post on the corner of Eva and Monroe. Thank you, thank you, thank you.

Was Helen Keller a virgin?

Forgive me for focusing too much on the future but as any parent knows, there are concerns for the development of one's child. Not only do these concerns encompass growing emotionally, physically and cognitively but they also include the intake of information. This brings me to Zelda and her reception of tasks/events in day to day living that the sighted world takes for granted. I continue to search for literature describing the raising of a blind child that explains the real "dirt". Helen Keller's autobiography was ground-breaking for her time but frankly it bored the beejesus out of me. Yes, she was an amazing woman that was extremely intelligent and overcame many obstacles. She read tons of books in many languages. She traveled far and wide. But I want to know: How were her drawers arranged so that she could dress herself in the morning? How did she learn to run without fear? Or wasn't she afraid? How did she comprehend puberty when she couldn't see that movie in 5th grade? What was it like for her when she first got her period? Did she feel the blood? Did she smell it? How did she know when her period had ended? Did she ever feel a penis? How was that introduced to her? (no puns intended) How could she tell if there was food stuck between her teeth after eating? If someone was giving her correct change and not shorting her a ten? Or that she was being charged the correct amount on her credit card receipt?

I guess I'll keep a running list of questions. I'll ask every blind person that I meet. I'll ask other parents that have blind kids. I'm sure that we'll come up with a plan. I just wish that someone would write a tell-all guide and let me in on the techniques. But have no fear, Zelda is a bright little pistol and she'll probably figure it all out before we do...

A view of Chicago...

Marchin' for Dimes

Having a premature baby sucks - never mind having 2 of them. That is, it sucks for the little ones that were still supposed to be safely growing in your womb and it sucks for the mom who goes through a terrifying delivery. Some women know that they are at risk for premature labor and know how to read the signs but it doesn't make it any easier. One still suffers the pain and guilt of the experience. When Dr Polon told me at 26 weeks 5 days that he was going to take out my babies, I screamed "They are not ready! They are too little!" The rest was a blur. Thank God for the epidural for there was no joy in the delivery room, no happily slapping of the baby on the fanny, no bonding with the twins on my chest. There were 14 people of assorted responsibilities in the room ready to attach the twins to machines to help them breathe, ready to give them blood transfusions, ready to make sure they lived.

I had a healthy pregnancy. I was never sick. I swam every day. I gained enough weight and drank tons of water. Sure I was uncomfortable but I was a skinny lady with a rapidly growing uterus and sometimes/often, I ached. I felt them move but also felt contractions. With every twinge, my OB/GYN would say "You're having twins." I had countless ultrasounds and each one was normal. I counted the days like hash marks on a prison wall to get through the next week, seeing each as a milestone in the fetal development of my little ones.

But I gave birth early. No one knows why. I was not dialated but the babies needed to come out. The official diagnosis was "non-reassuring fetal status". My micro-preemies at 2 lbs each went directly to the NICU where specially trained neo-natologists and neo-natal nurses cared for them. Every day was touch and go. We didn't know if they would survive. Each ounce that they gained was cause for celebration. They have a saying in the NICU "One step forward, two steps back." Progress was slow. They were at risk for so many things, so many infections, so many issues due to their still undeveloped systems in their hearts, eyes, brains, lungs - you name it. But they survived and after 4 1/2 months in the hospital and 15+ surgeries between them, Credence and Zelda came home. Still now, I sometimes go into their room at night while they sleep and check to see that they are still breathing.

So, on May 12th we are participating in the Walk America event to raise money for the March of Dimes. We are walking to raise money for prematurity awareness, for education, for research, for prenatal testing and newborn screening programs. Evan, Creed, Zelda, my sister Shakti and others will join me as we walk to save our babies. I won't be sending out emails to all of you to ask for money but if you are interested in donating, even pennies, please contact me. We have a jar on the counter in my shop and already so many customers have been generous with their spare change and more. For that we are thankful. We also continue to be thankful everyday for continued research and advances in the field of neo-natology. Give to the March of Dimes. I guarantee that everyone out there at least knows someone who has had a premature baby, has had a baby with difficulties at birth or was maybe even a preemie themselves. Thanks.

to donate: www.walkamerica.org/toxotwins

Back from chi-town

Well, what a wild ride! No need to dwell too much on the actual travel as there is so much other stuff to report. BUT, our departing flight was delayed by 1 1/2 hours. The twins were very busy (!) in the airport but much more calm on the plane. O'Hare was a nightmare of construction but we did eventually find the car rental shuttle while lugging around babies and all. They upgraded us to a minivan (gulp!) and then we arrived late to the hotel and our appt with the developmental specialist. As it turned out, she was late or misinformed and didn't show up until we were supposed to leave for a reception. Whew! The room's large glass window had a leak, the carpeting was wet and the room was small with no space for two port-a-cribs that apparently the hotel no longer had available. To make a long story short, the accommodations were much improved by the next day.

A wonderful woman named Libby arrived at 6pm to administer some developmental tests to the twins. As Evan ran around the halls of the hotel with one of them, I held the other on my lap while she demonstrated and coaxed them gently to imitate and respond. Creed was an excellent 'show monkey'. He pulled out all of the stops with behaviors I had never seen before. He sat quietly and listened intently to Libby, performing all of the appropriate tricks. Results: he is developmentally in sync with his corrected age of 16 months + some...Good job boy,boy!

As for la petite Z, she was at an obvious disadvantage as she cannot see the toys and imitate. The tests are standardized and not geared to the visually impaired. But from Libby could observe, Z's little brain is processing all shapes and objects through touch and she possesses good 'problem solving' skills. Hurray!

So at 7pm, off we ran to the champagne reception for the Intuit Show at the Artopolis (the ART Chicago Fair at the Merchandise Mart.) We totally pulled a Brittney Spears and jumped into a cab, holding the twins on our laps and arrived just in time to see some wonderful outsider and folk art exhibited by galleries from all over the country.

FRIDAY: We had to be at the University of Chicago by 7am for the toxoplasmosis study. It was an easy 20 minute trip by mini-van and I must mention that Zelda loves that car! As Evan said, we could buy 3 mini-vans for the price of our Land Rover! The minute she is in her car seat she starts giggling, babbling and swinging her little legs.

We arrived and were met by Mari, the study coordinator, who up until now has been a voice on the phone. We sat at breakfast with other families who have kids with toxo of varying degrees and speculated severity. We were seen by the Drs Noble (opthamology), Heydeman (neurology)and Boyer (infectious disease). They examined each of the twins and asked us tons of questions. Blood was drawn, babies were weighed and eyes were photographed. And of course, we were reunited with the Oracle. Dr McLeod, with all of her kindness and wisdom, marveled at the growth and progress of our babies. We anxiously await the arrival of their written reports summarizing our visit and their exam results. It was a long day and after the other families had left, we sat on the floor of the hallway and chatted with the doctors as the twins roamed and explored. They asked "Are these the same babies as last year?". They wowed everyone...

So, the consensus seems to be that Zelda has some sight! As Dr Noble put it: even with a pinhole opening in her eye, she may be able to perceive some light and/or shape. With the appropriate prescription, she may be able to refine whatever information that she is receiving. All the more reason to get her quickly to California to see Dr Tawansy for surgery and an examination under anesthesia...
As for Creed, due to the scar on his right macula, he will need to start wearing glasses. Although he seems to be using both eyes, it is felt that he is perhaps using his right eye for peripheral vision and his left eye for direct focus. Again, get thee to California!

It was a good day, contacts were made, information was obtained and then - we had babysitters...Yes, Margo and her husband Luke brought their 3 girls to the hotel and we went out to dinner! The girls were wonderful, so sweet and kind with the twins. Creed was in heaven:) Zelda was exhausted! The adults went to Follia, a hip Italian restaurant in the meatpacking district. Wonderful food, fine wine and robust conversation. Back at our hotel suite, we returned to find the twins asleep as were we as soon as our heads hit the pillows.

SATURDAY: Up at 7am in a much improved room change - a beautiful suite with a view of the river at the intersection of Michigan Avenue. We visited Millennium Park and took in the work of Gearhy and Kapoor. We drove out to Glencoe to visit Bill & Kathryn - Evan's friends from college. We like driving along Lakeshore Drive out to the 'burbs passing by those beautiful houses. Creed & Zelda got to jump on their first trampoline - woo-hoo! Then, once back in the city, we hit the Contemporary Art Fair. The kids enjoyed it about as much as we did. It's strange, the art world that is. I want to see amazing paintings by people that can handle paint - gimmicks don't do it for me. I am not impressed by 6' x 6' photos of whatever these artists deem interesting yet banal enough to seem desirable at $25,000! Yawn. Everyone was trying sooooo hard to be "different". I want soul, I want technique, I want beauty - traditional or otherwise...
Dinner was fairly close to a disaster. We tried a restaurant in the hotel and ended up taking food back to the room. Again, all involved were exhausted.

SUNDAY: Up early, back to Millennium Park to take in the Crown Fountain - such a great place for kids. We stripped the babies down to their diapers and let them go! They raced into the water and up to the raining stream falling from the giant walls of glass bricks. The changing photos on the walls displayed faces of the people of Chicago. The weather was perfect and we were ready to go home.

Off to the airport with time to spare, we broke our loyal double stroller and had to leave it at the gate. It couldn't be folded down to load onto the plane, but much to our surprise, it somehow made the trip from Chicago to Austin and was waiting for us at disembarkment. All in all a great weekend. Stay tuned.

Creeeeeeed

Lately he has been practicing saying "Zelda".

We're off to see the Oracle...

So, tomorrow we head to Chicago.

The twins are enrolled in a study at the University of Chicago that follows babies born with congenital toxoplasmosis. It is conducted by Dr Rima McLeod and her team of doctors. We love Dr McLeod. We call her "The Oracle" and "The Toxo Guru" among other names. She is amazing. If we can thank the Tiki Gods for saving the brains of the twins, we can thank Dr McLeod for saving their lives.

In the fall of 2005 when the twins were born at St David's Hospital here in Austin and then transferred to Texas Children's Hospital in Houston, Dr Ralph Feigin at TCH put us in touch with Dr McLeod and her study. Upon our initial attempt to contact her, she responded immediately. The doctors at TCH were overwhelmed by the extreme prematurity of the twins as well the obvious surprise of the toxo infection. Dr Mcleod quickly came to our rescue by first answering our questions and then weighing in on their care. She was the one that suggested the VP shunt for Zelda and managed to convince the Tiki Gods to perform the surgery. She was the one who insisted on charting their drug regimens according to their weight gain. She was the one who followed their blood counts when white blood cells or clotting issues were apparent. Dr McLeod found us the connection with Dr Tawansy in California when all of the eye doctors at TCH wouldn't touch Zelda for surgery.

Last year we flew to Chicago to enroll the babies in the study. They were infants, newly released from the NICU. They had shaved heads from surgeries, squirmed and shrieked when blood was drawn and their eyes were examined. This year they will see the same team of experts: infectious disease specialists, eye doctors, neurologists, developmental therapists; they will have blood drawn, have retinal exams, have their hearing tested. I am so excited for the doctors to see their progress. They have hair! they have grown! they walk and dance! they babble and laugh! they eat cheerios, fish and bananas!

I remember one of the first things that Dr Mcleod told me in her quiet voice over the phone at the NICU bedside upon positive confirmation that our twins had this devastating infection. She said "We have seen kids with proper treatment grow up and lead normal lives and go to college." And we're not going to let go of that dream - that is unless THEY decide that they don't want to go:) Then they can just travel through Europe instead.

I need a Sherpa!

Okay, so last summer we flew at least 4 times with the twins - they were sleepy little ones that we held on our laps. We checked all of our luggage and simply rolled the double stroller right up to the gate. When we landed, it was waiting for us as soon as we disembarked. We would rent a car at our destination as well as the car seats so as not to have to haul stuff onto the plane and through the airport. On the plane, we weren't allowed to sit next to each other holding twins because of the oxygen mask rule so we sat across the aisle from each other and handed the babies back and forth. Many a kind traveler offered assistance because with twins, someone always has their hands full. With one baby you can take turns, with twins it's "Wanna switch?".

BUT, this Thursday we are off to Chicago. We are taking 2 toddlers (who walk and climb and don't like to be stationary for too long), 2 car seats (so the twins can be safely strapped into their own seats on the plane and in the rental car), a double stroller (to whisk them through the airport and to use on the streets of Chicago) and assorted luggage including 2 fold up booster seats (so we can safely feed our little angels in the hotel suite). Going out for meals is an option but it is a difficult one. We have enough trouble with it at their age and here in Austin, we happen to know all of the restaurant owners so apologies are readily accepted. They are getting better at it however, because we insist on eating out at least once a week.

Anyway, I know we are not the first family to travel with twin toddlers plus other kids and I appreciate the road that has been paved for us by other brave families. But I really want a Sherpa! I want someone to help Evan negotiate those cumbersome car seats through security and help him strap them into the seats on the plane while I sing and dance and entertain the kiddos as we wait for boarding and delays. I want a Sherpa to take our luggage to the check-in desk and fetch it from the baggage claim and ride with it on the shuttle bus to the car rental place. I want a Sherpa to help us navigate the double stroller through the airport to the gate as well as when they have to carry it around the security checkpoints because it's too wide to roll through the metal detector.

Okay, so I know that I am whining but I am also trying to mentally and physically prepare myself for the schlep - I mean trip...is that so wrong?

La Baguette Quartette

Finally! I am so excited...our family can be the "Baguette Quartette". Having lived in France for years, I still tend to buy a baguette when I go the market. On a weekly basis here in Texas, I have seen many a baguette get too hard and crispy to eat after the first day or so. Years ago I even cracked a tooth when eating a tartine with butter and cheese for a snack. Unless there was a concerted effort made with Evan to eat the entire thing, it would often harden before we could finish. It became a point of contention. Evan, who hates to waste food, would berate me for not buying a soft italian loaf that could be easily toasted in the following days.

But now, we have two more members in our family. I can buy a baguette at the store and even before we arrive home, break off a morsel and the twins can gnaw on a chewy piece. They love to eat their baguette plain or with a bit of brie or butter. When preparing dinner, they can wander around clutching a little crispy piece in their hands. We have become a baguette family! The loaf that was purchased and enjoyed yesterday was finished off for breakfast this morning.

Oh the life of the Baguette Quartette...such a happy family!
Next step: foie gras.

Toxoplasmosis: It's not just about cats...

Here's a link to the University of Chicago's Toxoplasmosis Center. It gives a good description of the what we're dealing with...

http://www.uchospitals.edu/specialties/infectious-diseases/toxoplasmosis/about.html

More later.

The Tiki Gods & Hydrocephalus

This is not a story about the Easter Islands and a mythical creature. It's not a bedtime story that I read to the twins. I guess that everyday I could go on, waxing poetic about the joys and trials of raising Creed & Zelda BUT, that's not what this is about. Yes, our twins are great, funny, sassy, suuuuper smart and enormously talented. They do amazing things that no other toddlers have EVER done before! Uh-huh.

But I need to talk about the Tiki Gods. Our kids are where they are today thanks to the Tiki Gods. These guys are the neurosurgeons that treated our babies during their stay in the NICU at Texas Children's Hospital. They are Dr Robert Dauser, Dr Hatem Megahed, Dr Justin Brown, Dr Thomas and their faithful nurse Sharon. They would emerge silently in NICU at 6am, measure the kids' heads and jot down their incomprehensible scribble of notes. Evan would often lay in wait, we called it "trapping a neurosurgeon." They would then appear again on rounds, stoic, taciturn, unrevealing unless pressured to give answers. What began as a combative relationship of "Sure, we'll just throw a shunt in there and see what happens" turned into a relationship a mutual respect and often humour. Dr Dauser regaled us on a daily basis with a joke or two and still does when we have our 6 month check-ups. We had code-names for all of them and Evan created the Tiki Gods cartoon.

Upon discovering the congenital toxoplasmosis raging through the bodies of our twins, we also had to look carefully at their brains and their eyes. These are the 2 areas that are greatly affected by this infection. Having already told you about the eyes, let's talk brains. Both kids had hydrocephalus that is, swollen ventricles. Fluid was building up in their little noggins and this fluid was placing pressure on their developing brains -and at some point would hinder their growth and therefore their development. So, what does one do? One gets the Tiki Gods to first, tap the brain - that is, insert a long needle into the area and pull off some of the fluid. The baby screams bloody murder and the parent hides off to the side. I cannot tell you how many times both of the twins have had to endure this procedure. The CSF (cerebral spinal fluid) can then be tested to see if it grows any infection or if it's clear - then they can proceed with surgery.

Now, 18 months later, both of the twins have double VP (ventricular peritoneal) shunts - there is a small drain piece in their brain that is attached to a tube that runs down the side of their neck into their abdomen.* The fluid naturally drains off of the brain, therefore avoiding build-up or pressure, and then travels down the tube. It empties into their abdomen and is reabsorbed into their system. Each of the babies has a VP shunt on each side of their brain - we call it "dual exhaust" or "stereo". At first, one could see the lumps under their skin directly behind their ears. Now, their hair as grown over - thank the Lord! - and we don't even notice the shunts.

Will they have them in forever? Probably.
Do will still have to watch for infection? Yes, it's always a possibility.
Will they have to wear helmets when learning to walk? No, no and no.
Will they be able to head a soccer ball? Wouldn't recommend it.

So, thanks to the Tiki Gods our kids have regained the normal use/growth of their brains. It could have been a scary situation. They continue to develop normally and look like any other kids out there - they just have tubes in their heads.

*Zelda had her 1st shunt put in at about 6 weeks old - she technically wasn't even born yet! That shunt became infected and had to be removed. It was then replaced 3 months later before she was discharged from the hospital. She had a shunt revision (it had become clogged)in August of last summer. A few days later, a 2nd shunt was placed. Total brain surgeries: 5.

Creed had his first shunt placed at 3 months of age while still in the hospital. Upon discharge, he went back in at the age of 9 months and had a 2nd shunt placed. Total brain surgeries: 2 - plus numerous tappings.

www.preemies.org/buckwal/shunt.htm

About me, me, me...

Stolen from Karla, the Texpatriate:

10 FAVORITES
Favorite Color: black
Favorite Food: foie gras
Favorite Month: september
Favorite Song: currently the Itsy-Bitsy Spider
Favorite Movie: Blue Velvet
Favorite Sport: swimming
Favorite Season: fall
Favorite Day of the week: sunday
Favorite Ice Cream Flavor: Mint Chocolate chip
Favorite Time of Day: 8am

9 CURRENTS
Current Mood: depressed
Current Taste: uniformity
Current Clothes: black trousers, 2 'boy-beater' tanks, Ann Demeulemeester stilettos
Current Desktop: a photo of all 4 of us leaving the hospital
Current Toenail Color: natural - no time for pedicures
Current Time: 11h21am
Current Surroundings: loft office at my shop
Current Thoughts: I have no money.

8 FIRSTS
First Best Friend: Debbie D. my next door neighbor
First Kiss: spin-the-bottle at summer camp - 5th grade?
First Screen Name: "godet" on a designer's board
First Pet: Misty, an old grey poodle
First Piercing: Ears, maybe 9th grade?
First Crush: 3rd garde, Mark P. - he gave me a book from his Arrow Book Club order
First CD: that would be album...the Allman Brothers "Brothers & Sisters"

7 LASTS
Last Cigarette: never, never, never
Last Car Ride: this morning to go to the bank
Last Kiss: Credence as I left the house this a.m.
Last Movie Seen: Ahhh! I can't remember!!!!
Last Phone Call: my sis, Shakti
Last CD Played: Camille - she's french

6 HAVE YOU EVERS
Have You Ever Dated One Of Your Best Guy/Girl Friends: yes. I married one of them!
Have You Ever Broken the Law: Yep.
Have You Ever Been Arrested: No, but it was close.
Have You Ever Skinny Dipped: Yes, lots of times.
Have You Ever Been on TV: Yes, still am on occasion.
Have You Ever Kissed Someone You Didn’t Know: I guess so.

5 THINGS
Thing You’re Wearing: a huge Victorian locket made of volcanite.
Thing You’ve Done Today: met with a sales rep
Thing You Can Hear Right Now: some lounge music down in the shop
Thing You Can’t Live Without: sleep
Thing You Do When You’re Bored: I don't get bored - I make lists.

4 PLACES YOU'VE BEEN TODAY
1. my house
2. the bank
3. my shops
4. Jo's coffe shop

3 PEOPLE YOU CAN TELL ANYTHING TO
1.Evan
2.Leslie
3.my babies


2 CHOICES
1. Black or White: Black
2. Hot or Cold: Cold

1 THING YOU WANT TO DO BEFORE YOU DIE
Buy an apartment in Paris

The things people say - part I

Creed is bigger than Zelda. Zelda keeps her eyes closed a lot. Creed is a boy, Zelda is a girl. This is what people have been known to ask :

-How far apart are they in age?
* 1 minute.

-Are they identical?
*No, one has a penis.

-Is she asleep? OR Is she sleep walking?
*No, she's blind.

-Where they conceived naturally?
*No, they were built in a factory in New Jersey.

Geez...

Julia Roberts is in town...

She's making a film out in Bastrop.
Do I have anything in common with her? Well yes, we both have twins
Do I envy her? Well sure, I'd like to have her money.
Am I filled with the middle-american desire to be Julia? Well no, I like being me.

BUT, the other day I saw her photo in a rag-mag that was thrown in the trash by our nanny - it was the back of her head and peering over her shoulder was her adorable wide-eyed daughter Hazel. It struck a chord. My daughter is a twin and she is absolutely adorable. But she is not wide-eyed. Actually more often than not, Zelda has her head down and her eyes almost closed. They are like slits. She has micro-opthalmia. Her right eye is smaller than her left. Interestingly enough, most doctors have said that her right eye is her "good" eye - the one with hope. At this point who knows...I operate under the premise that I'll know if/what she can see when she can tell us.

Besides being premature and born with congential toxoplasmosis, Zelda was born with dysplastic and detached retinas. Was it a result of ROP due to her prematurity? Was it a result of the toxo? No one can tell us. All I know is that one day in the NICU, the haneous eye doctor from hell said "your daughter's eyes still look hazy" "we can't see in and therefore she can't see out" "oh, and by the way, your daughter is blind and she'll never be able to see." WHAT???
He was so hideously cavalier about the whole thing, I just wanted to scream. And later I did. I screamed, I cried, I even prayed...well, sort of.
We had so many questions. Why hadn't they seen this sooner? Why was the doctor such an arrogant ass? Could she have surgery? Would she ever be able to see? Can one take lessons on how to tell a parent that their baby is blind? Can we enroll AA (arrogant ass) doctor in the class?

We immediately phoned the Oracle - our guide through the world of toxoplasmosis - Dr Rima McLeod at the University of Chicago. More on her later. She recommended that we contact Dr Khaled Tawansy, a pediatric eye surgeon in California. The wheels were set in motion and thanks to the amazingly dedicated neonatologist Dr Peter Haney at Texas Children's Hospital, a transport jet was arranged to take Zelda and Evan to Pasadena, CA. They spent a month out there at Huntington Memorial Hospital and Zelda underwent various procedures and surgeries to remove her lenses (lensectomy) and the clear the vitreous (vitrectomy) in her little eyes. We later returned last summer and both she and Creed had another procedure to keep their eyes healthy. We will return again in the upcoming months to see Dr Tawansy for yet more work and consultation on the state of Zelda's eyes.

So back to Julia...I look at the photo of the movie star and her wide-eyed twin and I want my little girl to have her eyes wide-open and seeing. Sometimes it makes me sad but most of the time I am in awe - not only of feisty, resilient Zelda who walks forward without fear but also of her brother, the smiley, silly Creed. They are toddlers, completely different individuals learning to go through life in their own way. Who says that one "view" or lack of is better than the other?

Creed is starting to jump and run, Zelda is too.
They are just doing it differently.

Happy Birthday to me.

who would have ever thought? 18 month old twins at 49. It's great! I couldn't have imagined it any other way. Well, I guess I could probably try to imagine it but then everything would be different , now wouldn't it? In my 20's, I was teaching, going to grad school and moving to Paris. In my 30's, I was living in Paris, going to design school, and starting my own clothing line. In my 40's, I was starting my own businesses AND marrying the person that I actually wanted to have children with. There is still so much to look forward to. Each day our kids do something amazing. I have traveled so much and lived in different places, now we can do it through the eyes of our children. I can't wait: to learn how to ski (again) with them, take them to the beach, go to the city (New York, that is), visit the coast of Maine, spend time in Paris with them, eat all kinds of different foods, take family vacations, teach them "peace, love and understanding" and not to be be judgmental and cynical (like we are!) - I will continue to add to this list.

Right now, they walk but will learn to run. Creed is very close. Zelda will take some doing. How does a blind kid learn to run? Is she afraid? Do we move her legs for her?
They are saying words: Ma, Da, Ba and an occasional "Zelda" and an imitation of "careful", "thank-you" or "bye-bye". Soon there will be 2 words together and word association with objects and actions. Again, different yet the same for each of them.

Right now, we're learning teeth brushing.
Oh, the teeth.
The drs constantly warned us about the effects of the toxo meds on the teeth. Starting at 1 month out of the womb, the twins were put on their "toxo cocktail" - 3 different meds (sulfadiazine, leucovorin, and pyramethamine) to combat the parasite in their system. We shot the meds on a daily basis into their milk , sometime 2x/day. The meds were compounded at a special pharmacy and were refilled weekly due to their limited shelf life. The crazy price of approx $100/week was not covered by their insurance. The delicate balance of their meds was calibrated by weekly weight checks and adjusted for their growth. The amounts worked together in conjunction to keep their systems - blood cell counts, etc - in range. We gave them the meds for 17 months. As their teeth came in, we knew that the meds (suspended in a sugar solution) would work to ruin their sweet baby teeth. We would rub them with a wash rag in the tub, try to get them to chew on the right end of their toothbrush, and give them baby Orajel to encourage a "sweet" experience. FINALLY , they are getting. Creed will imitate my tooth brushing actions and walk around the house with his mini-brush. Zelda - with her strict aversion to anything near her mouth that she doesn't put there! - is now willing to explore brushing with a vibrating, battery-activated toothbrush. Hurray!

Ah, the simple pleasures of parenting...just the other day it seems like I was conquering a 250 title reading list for my M.A., now it's teeth-brushing. Priorities change, pleasures remain - one just needs to keep the mind open!

Zelda Nicolette, 1 day old

Credence Paul, 1 day old

backtrack to 15 september 2005 10:30pm

So, the babies came out - Evan saw them over the sheet. I asked what they looked like and he said long, grey squirrels. They were rushed away but I did have a chance to look up and see Baby Girl B open her eyes and lift her arm up in a wave. My sweet pea! During my pregnancy, the girl had always been referred to as Baby A and the boy as Baby B. (Although we referred to them as Moose & Squirrel or Boris & Natasha). That's just the way they do things in a twin pregnancy - it depends on their positioning. BUT when they emerge, their A or B status depends on who comes out first. So little Z was demoted to B status when Dr Polon, who was standing on my left during the surgery, removed Creed first . Everything I had read about bonding with your newborn, cutting the umbilical cord, banking the cord blood, burying the placenta under a tree in your yard (not!) went by the wayside. These were now critical times. The joys of childbirth were awash in blood transfusions, intubations, hyperbilirubin (that's jaundice), etc. I was a mess...feeling guilty, exhausted, confused and not fully aware of the severity of their condition. I was not ready for any of it!

Thank goodness for the morphine...as I awoke the next morning I was in a state of semi-shock. We had two 2 lb babies with no names who were in the NICU under pieces of plastic wrap held up by Styrofoam cups in a warming bed. They were furry and skinny and wore little goggles to protect their undeveloped eyes from the bright lights. They couldn't breathe on their own - never mind eat. They eventually inserted NG tubes into their nostrils. AND that's when the "lactation consultant" appeared at my bedside. Yes, I had to start pumping breast milk and I had to start immediately. Lord, I was miserable. To top it all off, our "Toast the Twins" cocktail party alternative to a traditional baby shower was scheduled for that night. You know - plan it 3 months in advance of the due date to be sure that I'd be there in case I delivered early. The irony of it all!

Evan went to the party that evening with photos of our micro-preemies Babies A & B. Boy, were there a shocked group of people!