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...

Overdrive...

...yesterday I was thinking about myself. Depressed, angry and cranky over my upcoming surgery. Tuesday: my bilateral mastectomy...losing my perfect Marie Antoinette "coupe de champagne" breasts. I am 52 and I have never had to wear a bra. When the other girls were sore and developing in middle school, I could run faster than anyone AND without pain. They have served me well. Made me money. Given breast milk to my twins for 13 months. I am angry.

Then, I got a phone call from Zelda's teacher. She had a fever of over 100 degrees. Everything drops. Zelda hasn't had a seizure in 8 months and she is now on 2 different meds that seem to be working. If she gets a fever, a seizure could appear at any moment. I run home, get a syringe of Children's tylenol, a syringe of Kepra, and her Diastat giant rectal injection in case she seizes.

Zelda's teacher, Mrs K, is an absolute wonder. She has already taken Z to the nurse and has her waiting there for me in case she starts to seize. They have no signed permission to give her anything to lower her temperature, so they wait for me. And when I arrive, there she is...my beautiful little girl: smiling and happy albeit a little warm. I give her the meds. She chats on the way to the car and we go home.

Seizure averted.

I am still having my breasts cut off on Tuesday. But my kids are IT. I will fight for them and advocate for their health as long as I am alive...my own shit...not so much...


Zelda, last weekend, at her first "girlfriends birthday party"...

Re-booting...and Hair-today...

La petite Zelda and Evan were home last night by dinner. No brain tap - thank the gods! She seems okay, a little off, a wee bit whiny, and asking often to be held and for her Daddy. It's almost as if she had to be reintroduced to the household, her favorite toys, music and books. Usually I can read her braille book of nursery rhymes with her and she'll finish each sentence. She was reticent at best. I know that the seizure was a trauma to the brain and 3 days in the hospital sucks for any toddler - never mind a blind child getting used to new smells, voices and sounds. Evan calls it "Re-booting her brain" - getting her back into the flow of our lives. He's worried that Creed is exploding on all fronts: personality, language, willfulness, opinions, etc. Zelda is usually always a month or 2 behind Creed but always holds her own. Now, Evan feels that Creed is racing forward while Zelda becomes more tentative. She's at Ecole today with Creed and her friends. We have Parent-Teacher conferences next week...
* * *
Today is my last full day with a full head of hair. I woke up last night at 3am and felt my hair on my pillow. I couldn't sleep. I felt anxious about it for the first time and seem to be looking at the clock every hour today and imagining what it will be like tomorrow. I don't want to lose my hair. Like everything else, I know that I can do it...yes, I can. It's just that this time, I really don't want it to be...gone tomorrow.

Been distracted...

So, Zelda had a seizure on Sunday. Sometimes I think we're cursed. Just as we begin to brag and dance and sing about her not having had a seizure in so many months. It hits. And it hits badly...Just the other day, the pediatrician commented on how maybe the neurologist should adjust her seizure meds to coincide with her weight gain. Ya think?

The twins had an awesome day on Sunday with their friends. They ran like banshees, ate french fries at Chuy's (which Zelda promptly threw up), and then they crashed for a nap. Delivered home to us, she was a zonked-out little ball who only wanted to lay on the 'big bed' with Mommy. I didn't think she had a fever but apparently she did. She just seemed tired. She woke up choking, spitting up and started to seize. Evan & I were in the kitchen with Tim, going over legal documents. We called 911. EMS came quickly. Her color was good, her breathing stayed strong but she seized.

Evan has been at the hospital with her since Sunday night. I can't be there because of these days after chemo when my blood counts may be low. Now, the new neurologist is calling her epileptic. Huh??? The other doctors are saying it was a febrile seizure. They finally brought in her Infectious Disease doctor that we had requested after I called Dr McLeod in Chicago and called Dr Hauger herself. Now, we're a bit more confident since she's on the scene. Zelda is up and about. She hasn't had another seizure or fever and she's eating and wants to come home. We are waiting to see if the neurosurgeons will tap her shunts to check for an infection there. I know we'll have it done if necessary but I really don't want them to have to stick a needle in my little girl's brain today...

My half-way through Chemo #1 visit to the oncologist today pales in comparison to Zelda's needs. Haircut is scheduled for Friday.

Possessed by aliens...or Zelda has blue eyes...

So, on Sunday, upon waking up from her nap, Zelda had a seizure. It went something like this: She woke up fussy and burning up - as if she had a fever spike (both twins have been exchanging a snotty nose for weeks). Then she got very quiet and stood very still. Then she curled up on the floor. Now up until then, those things can all be normal. Music was playing and she often quietly listens. She likes to fake napping and often she'll say "I sleep" and lie down. But this was different. I spoke to her and she didn't respond, not to the offer of milk, or to play with my keys, or to the "B's" - aka the Beatles. I knew something was up. I then saw the symptoms (her typical seizure-like signs): she smacks her lips softly, she gets pale, her lips turn a dark brownish/red, and her hands feel like jelly. I rolled her onto her side, rubbed her back and spoke to her and called for Evan. We gave her an extra dose of Keppra. (She takes 1.5ml, 2x/day) She continued by gagging a bit and had shallow breathing but all of this lasted just a few minutes. Then she fell asleep on my chest for an hour. AND we didn't call 911 - for the very first time, we handled it ourselves. It still sucks, it's still scary, and I still hate that this continues to happen. We gave her Tylenol and her fever seemed to drop. They say these are 'breakthrough' seizures, as she doesn't seem to have them when she's feeling well. I'm just frustrated with the pattern.

BUT, here's the weird part: when she woke up, her eyes were open - she rarely opens them. And they were blue! Her irises were actually a beautiful shade of blue and there was a dark pupil-like spot in colored pool! My little girl is a blonde-haired, blue-eyed beauty! On the rare occasion when Zelda opens her eyes, we'll see white with a dark dot. We have photos of her as a baby with her eyes open and I always assumed her eyes were black. BUT NO!!! They're blue...Evan confirmed it, he saw it, too. I thought I was dreaming. I thought she was hosting a blue-eyed alien. It was magical and I haven't seen the color since...

So sometimes one has to write about the not-so-fun stuff...

so Zelda had a seizure last week. It's the first one she's had since January - but even then the neurologist was only calling them "spells." You see, it all started last summer (2006) when she was just a babe. They say that kids born with toxoplasmosis can have seizures and Zelda started to have some unusual 'episodes'. Basically it goes like this: she gets quiet, she gets pale, her lips start to turn dark purple, she is unresponsive and her hands are limp. I would pick her up, rub her back and in a minute or so she would stir and then fall into a deep sleep for an hour or so. Last fall we called EMS several times and she was hospitalized for days on end, hooked up to an EEG to chart her brain waves. And still, no evidence of seizure activity. They would just send her home. Finally right after the New Year 2007 and yet another 'episode' and trip to the hospital, we pretty much demanded she be put on some kind of medication. So, since then, she has been on Keppra. She has done so well...until the other day.

It's no fun to get that call from your nanny while you're getting ready to go home from work. Luckily, my shop is 100 yds away from home so I ran when Candi called. We called EMS and Zelda's neurologist and all concur that it was a breakthrough 'episode' related to a high fever. She had been snotty and sick all week. But now we watch and worry and wait. Will it happen it again? Probably. It sucks.

But Creed was a champ. He watched, he was quiet and when Zelda finally fell asleep on Evan's chest, Creed climbed onto the day bed and laid his head on her back and stroked her hair.