Wednesday, April 25, 2007

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.

3 comments:

Karla said...

good luck on the trip, even sans Sherpa.....

Carrie said...

Hi, we met at Dr. McLeods. I was Lillie and Emery's mom (both adopted from Guatemala). I wanted to check out your blog and tell you it was really nice to meet you. Z and Creed are such cuties, I was so glad to get to meet them.

toxomaman said...

Hi Carrie - so nice to hear from you! what a wild trip & busy trip that was...hope that the visit was informative for your family. Your kids are beautiful. Let's keep in touch.