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.



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).


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.


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.


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.


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).


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

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.


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