Stella was born at saturday 17 september 2005.
The pregnancy was easy. And giving birth went by the book. After birth Stella didn’t cry and had curved little fingers, so she had to go to the hospital.
Her father took her, and came back 3 hours later. Everything was fine. She was a healthy little girl.
3,5 Months later she did something weird, and unfortunately kept doing it. I knew something was really wrong. Our doctor wasn’t alarmed. And after going there 3 more times he refered us to a specialist. At this time Stella lost her head balance, was having seizures every hour and hardly slept.
After some research the docter told us that she was epileptic, and her brain was different. We had to go to a more specialiced hospital, so they could find out what the cause was.
We went to Utrecht. At this time Stella was taking depakine, and sabril, the seizures were less.
1,5 Weeks later after an eye examination they told us she had Aicardisyndrome. Our world fell apart.
But now at least we knew a name for what was bothering her.
A lot of disscussions and talking to the specialists later, we decided to stop the depakine. We did this because we believed the medicine started working when she got the sabril, and the depakine was’nt doing anything good for her. We weened her of in 2 weeks, in the hospital. She had a lot of seizures. But after two weeks she had less seizures. And Stella was looking and feeling a lot better.
Now Stella is 3 years old. She takes lamictal and has about 1 seizure a day. She developes super slow. She now walkes behind a little car, and sometimes holds something with both hands. She likes to eat bread and fruit, and all Italian food. She goes to daycare 3 days a week. Here she swims, rides horse back, plays and learns a lot. At home we have a special babysitter, once a week for half a day. She has a little sister, Kate, wich she likes to look at. And tries to hit every now and then. Stella doesn’t talk, but understands a lot. And can tell us wath she wants by screaming and pointing. She is super happy most of the time and laughs a lot. She’s a bad sleeper, but it’s getting better. And she gives kisses if she wants to.
If she has a seizure, or can’t explain herself to me and gets frustrated. My heart breaks
If I look at her I see a very tough little girl. She want’s a lot, and goes on and on to get it.
I don’t see any imperfection.
8dec 2009
Stella walked by herself wonderful
19 febr 2011
Stella is now running in her own way. And jumping, funny to watch. She can hold a cup, with two hands, drink from it and puts it back on the table instead of trowing it away.
She gives kisses in abundance, and listens every now and then.
She takes Keppra besides the Lamictal, and has hardly any side effects.
I try to improve her health by giving her special nutrition, it works. She gained some weight, hasn’t been sick a lot. And she sleeps so much better.
Her back is getting worse, she’ll have to have surgery, soon. So stressful times are coming, hopefully followed by good times.