Tuesday, July 8, 2008

Vivian.

I've had a couple of inquiries about Vivian so I thought I'd write a post telling a little more about her.

Vivian doesn't have any specific diagnosis or syndrome. I had an uneventful pregnancy and delivery with her, and she was a sweet, beautiful baby.

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At six months Vivian had not met any of her developmental milestones (sitting up, rolling over, reaching for toys, bearing weight on her legs, babbling, etc.). At eight months our pediatrician referred us to a developmental pediatrician who started Vivian in physical therapy. We've since added speech, occupational therapy and pretty much any other intervention that anyone has recommended. Vivian has made progress, but she's remained at least 50% behind her peers in development.

Vivian began to walk at 20 months. She had no words and very few sounds until she was four-and-a-half years old, though she had learned a few signs ("more," "all done," "dog," "clown," etc.). When she began to talk, her language progressed in a normal, if slow, manner (sounds, then words, then two- and three-word phrases, then sentences; i.e., she did not just begin to talk all of a sudden).

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Age three

At about age six Vivian began to have seizures. We were able to get them under control with medication for a while, but periodically they return, and as she's approached puberty, we've had a harder time eliminating them. Right now she's experiencing around ten a week, which is pretty stressful on her little body. She's going to undergo a 48-hour EEG next week to see if a change in her medicines is indicated (which can be good and bad because the medications have their own issues). Her seizures for the past five years or so only have occurred when she's asleep so she likely has some of which we're not aware. Her seizures last from one to two minutes and she stiffens and thrashes around and makes strange sounds which I can hear if I'm near her room. There's nothing that can be done for her during a seizure other than ensuring that she can't hit her head on anything. Vivian has no memory of them. Her recovery after a seizure varies: sometimes she wakes up and begins to talk immediately, other times she is difficult to arouse and may experience weakness in parts of her body for several hours afterward.

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At her 8th birthday party

Vivian's seizures are in her frontal lobe, where all impulses, sense of right and wrong, aggression, etc. are controlled, so the abnormal activity there results in some undesirable behavior. She has a terrible time with transitions and doesn't like crowds or lots of noise (though her teachers have been able to get her used to eating in the cafeteria at school and can occasionally get her to go to PE in the gym and even to sit in during a band class). She sometimes tries to hit or kick but is immediately apologetic and repentant afterward.

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On Margaret's balcony in Paris at age ten

Vivian has attended our public schools since she turned three. We have been very pleased with her experience there. Her teachers have been loving, but firm, and have taught her a lot (including potty training her when she was seven - I had about given up). Vivian knows her letters and sounds and can recognize some sight words. The good thing about her functioning level is that she has NO idea that anything is different about her. I think that is a great blessing.

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Christmas 2006 - age 12

Vivian is very affectionate and loving - loves to snuggle and have someone hold her hand. She has a funny little sense of humor and keeps us pretty amused. She has very little common sense, though, and is prone to wandering off if the house is not secured (and she's pretty tricky at getting out if she gets really determined).

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At her *Rudolph Party* on her 13th birthday (her request! A bit tricky to pull off in June)

Vivian loves Dumbo, Rudolph, Clifford, Dora, Wonder Pets and babies. She also adores our cat, Percy, who is unusually attached to her as well. He sleeps at the foot of her bed and stays right next to her if she has a seizure. Percy kindly shoulders the blame for every scrape and bump on Vivian's body. "Percy scratched me" is her explanation for all ailments, despite the fact that Percy has no front claws. He also patiently tolerates being carried around and retrieved from his hiding spots.

Percy
Percy

We're fortunate to live in a time and place with a lot of resources and support for Vivian. She's had many great teachers and caregivers at school, and she has a compassionate and dedicated team of doctors who care for her as well. Robert is wonderful with her, and she asks about him whenever he's not here ("Where is my daddyman?" "My daddyman will be home soon?"). Will is exceptionally patient and kind with Vivian, Dots much less so, but it makes for a pretty good balance.

We've had a lot of testing done on Vivian (MRI's, EEG's, genetic work-ups, etc.), but other than the abnormal brain activity associated with her seizures, nothing out of the ordinary has ever shown up.

So Vivian's a little mystery, but she is our very loved and precious (and often sweet) girl. I'm quite open about talking about her and would be happy to answer any questions anyone might have.

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At school this spring - Vivian's peer tutors flat-ironed her hair and put some blush on her!

12 comments:

Mind Body Shop said...

Our own physical body possesses a wisdom which we who inhabit the body lack. We give it orders which make no sense. May Vivian finds it cure.

Erin said...

I just love seeing these pictures of Vivian. And that is so sweet about Percy. Animals are more intuitive than we give them credit for.

As I said before, Vivian is so blessed to have you and Robert. And she is just gorgeous.

Much love!

Alice Band said...

Hey Eloise,
My friends have a beautiful daughter with similar things going on (!). She is very direct and kissed the baby in my tummy very loudly in the supermarket the other day - only I most certainly am not pregnant!!!!!! Just fat! Her father nearly died. I found it funny! I am on a diet now though!

JoAnn said...

You, my dear, are the best. Vivian is so lucky to have such a wonderful family and support system.

Hugs,
JOANN

Laura said...

Eloise - This entry brought tears to my eyes. Vivian sure does sound like a special girl, and she is also so lucky to have such a wonderful mom. :) My mom has told me a little about her over the years, but it was wonderful to read your perspective.

Laura (JoAnn's daughter)

Sally said...

I have just read this - bit late I know, but only recently found your blog..... Brilliant post. You sound lovely and so good for her...

CZ said...

I have a friend with a daughter with VERY similar symptoms - you might want to check out her blog and contact her - www.angelicagracedesignsblog.com

Mary Kay Coleman said...

My daughter Barbara Lovingfoss Mayfield thought I would like your blog and she is right. Have you ever looked into The Blue Bird Circle Clinic for Pediatric Neurology at Texas Children's Hospital in Houston. I am a Blue Bird volunteer at the clinic which is recognized world wide for research and treatment for seizures.

Catherine said...

Eloise:
My son is almost 15 and has been battling seizures since he was one. He has tackled every anti-seizure med and has had four surgeries (one in Houston, two in Memphis and the last one in NYC). He just had his first seizure in 8 months on July 4th and hasn't had another one since. He has come a long way! I would be happy to visit with you: cwenske@gmail.com. There has been many time that we thought we were at a dead end. Through prayer and trusting our faith, we had kept plunging forward. The NYC chapter is truly amazing. I would love to share anything I can to help you all.

Kathi said...

Vivian is such a beautiful child. Thank you for sharing her story. You have a loving family and I am in awe over your mothering. You are such a good mother. I am enjoying your blog. God bless your family. Kathi

Lizzy said...

I have a 22 y/o with cerebral palsy...besides not having seizures, she has much in common with your Vivian. Katie is doing well now...and Vivian will, too, with your love and support. Thanks for sharing your story~

Beatriz said...

What kind of stroller do you have for Vivian?

Looking for a stroller for my 9 years old which had a femur lengthening.

We live in Fort Worth.