Monday, May 21, 2007

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.

Saturday, May 19, 2007

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???

Thursday, May 17, 2007

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.

Friday, May 11, 2007

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...

Tuesday, May 8, 2007

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.

Saturday, May 5, 2007

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...

Thursday, May 3, 2007

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: