There's something about Zelda...

...so Christmas has come and gone, not without a visit to the ER. Just 3 days before the holiday, Zelda had a seizure - there were good things and bad things to come out of it. I can't help but think what a life without toxoplasmosis would be like for her. Creed is far less affected by the parasite in his system. He has had only one seizure in his lifetime: when he was a baby - and they attributed it to a fever. Sure, he has his 2 VP shunts in his brain and wears glasses due to the toxo scar on his right macula but he sees everything and "he will learn to read 'normally' and drive" - as they repeated over and over again to us in the NICU upon diagnosis of the infection. Zelda somehow got such a higher dose of the parasite - possibly due to her placement in my uterus.

Zelda was very quiet that morning, keeping to herself and a bit cranky. When I asked her if she was OK, she would say No. She felt warm. Her hands felt limp. She was pale with deep purple lips - all signs of a seizure approaching. It's as if now, as she grows older, she's able to know that something is not right. So, we gave her an extra dose of Keppra and she and I got into bed to take a nap while Creed watched cartoons.

Suddenly at 11am, I had dozed off and was awoken by a gurgle and wheezing sound. Next to me, Zelda was jerking her hands and had started seizing. I called (in this order): Evan, Jason (our EMS commander BFF), and 911. While I was making the calls, I ran to the fridge, took out her Diastat and gave her a suppository of medicine (sorry if that's TMI)...and it worked! She immediately calmed down.

It's often tough to find our little bungalow - as we live on a private alley so I sent my little boy - out in his underwear - to the front porch. Imagine Creed, jumping up and down in his Underoos, waving to the ambulance and oh, so proud of himself.

Off the the ER we went. Her vitals were good. No shunt malfunctions and no sign of pneumonia...we were discharged by 5pm...

Zelda tends to open her teeny little eyes when she wakes up from the seizure...


And she immediately gets busy...


Reading her Braille...


And then crashes again with Uncle Seth...

The great debate...and Chemo #1

So, I've waffled back and forth and thought about starting another blog to discuss my cancer treatment but then I've reconsidered. I'm still the mom of the toxotwins, I am still parenting, I still have cancer - or at least am going through the weeks of chemo to make sure it's held at bay - not unlike the toxoplasmosis parasite that floats in my body as well as in the bodies of Creed & Zelda. So to separate the cancer from "Our life with the toxotwins" would seem as though I was trying to keep the two bubbles apart...they are intrinsically intertwined. I will pledge however, to try and not dwell too much on either one but to talk about them together as much as possible.

It's tough right now to have the energy to run with 3 1/2 yr old toddlers. They continue to astound me. Creed is soooo curious. He IS Curious George, the little monkey. He has officially entered the 50th percentile on the height and weight charts leaving behind his micro-preemie status of his 2 lb birth. He has opinions, asks questions and says "I need a hug". He responds regularly in French and seems to love going to Ecole.

As for Zelda, she is still ma petite puce...weighing in at just over 25lbs. She'll surely be a member of the "Stringbean Club" like her mom & dad. Z speaks more and more each day. Yesterday she counted to 20 in French while bouncing on the "big bed"! I attended another ARD meeting for her educational plan. She'll begin receiving speech therapy services in a few weeks to help with her articulation. I think it's harder, as seeing people, to imagine how a blind toddler learns to speak. She can imitate flawlessly but when she hurries and wants to pour out her words, they become garbled. She doesn't see the way our mouths move and can only do auditory imitation. I can almost see the wheels turning in her active little brain. Andrea, her TVI, will also up her visitation at Ecole to 3x/week. Two hours a week they work on concepts and pre-braille exercises. The 3rd session will focus on socialization and play. Zelda needs help learning to interact with the other kids. They all seem willing but need some guidance.

And I survived my first round of chemo. A saline drip, followed by anti-nausea meds, cytoxin and then the Red Devil - Adriamycin...I'm doing okay. No puking, just occasional dizziness, a mild headache and fatigue. This first round has so far been flawless as I wait for the other shoe to drop. I had my shot of Neulasta yesterday, to keep the white blood cell count from dropping too low - which is also of concern with that pesky toxo parasite - side effects from the shot 24/48 hrs later can include intense bone pain and flu like symptoms.

So that's it! Flowers arrived on my chemo day, friends have brought by dinners and each evening, someone arrives to help us deal with the twins at bedtime. Merci, merci mille fois...

Spring medical sweeps...kicking off the summer season...

So we just did a week of doctor's appointments. Most kids have a pediatrician and maybe a dentist. Zelda and Creed have a neurosurgeon, an Infectious Disease doctor, a pediatric opthamologist, a neurologist, a retinologist, as well as a retinal surgeon in LA and a Toxo Team in Chicago. Oh, and their pediatrician. We'll save the list of Zelda's therapists for a later entry.

Anyway, last week was our trip to Houston to see our favorite Tiki Gods - the neurosurgeons. As it turned out, the residents & interns have moved on and the other head Tiki has gone off to San Antonio so only one lone god remains. The twins have to check in every so often and have head CT's to make sure that their shunts are draining the fluid from their little brains in an appropriate fashion. They have had more CT's than I can possibly count so this time we were well prepared despite the fear of having to sedate them so they would hold still long enough. Anesthesia is definitely not their favorite experience nor is it mine when a 2 year old is involved. Luckily, they managed to avoid the sedation...could we possibly make it through 2008 without anesthesia? Their brains look great and the shunts are working. Creed's ventricles have actually shrunk and Zelda is perfectly stable. They will have these shunts throughout their entire lives and we just always will have to be aware of possible malfunction. But so far, so good!

This week, we saw their ID doctor. We check in with her to follow any reactivation of the evil Toxo Parasite. They'll live with this for their whole lives as well. C & Z are doing great! Having had the twins on their drug "cocktail" for the first 17 months of their lives has hopefully drowned those damn bugs - as least for now.

And then we saw their opthamologist...Creed's strabismus seems to be evening out. Months ago, his right eye - which has a scar on its retina from the Toxo - would turn in on occasion. Now it hardly turns in at all. Creed was a perfect patient. He performed like the perfect little show monkey - taking the tests, sitting still, curious and quiet. La petite Z-bomb earned her name accordingly. She exploded. No one can get near her eyes. She seals them closed and will have to be sedated this summer for a retinal exam. Damn! 2008 will not escape the anesthesia curse...If the Toxo was to rear its ugly head, it would most likely appear in the eyes so we have to be vigilant.

Anyway, we're readying the twins for their Montessori summer camp program. That means a visit to the pediatrician for their immunization records...

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.