Samantha has done a great job of showing the doctors what they needed to see. Such a good job in fact, that we are able to go home tomorrow (Wednesday) morning! Whoo Hoo!!!

So, what did we find out? Samantha’s seizures are primarily in the left frontal lobe. She does however have some other ‘discharges’ throughout the brain therefore Samantha is not a candidate for surgery right now. They will take a look as she gets older or if the seizure type changes.

Here’s the good news, her infantile spasms are still gone and her jerky movements are just ‘Samantha movements’. Our neurologist felt really positive about the EEG and said it has really improved from the last couple months. The diet has been a positive change and she wants us to remain on one seizure med. Whew! Not too bad for a days work!

We are signing off for the night. Thanks so much for all the positive thoughts!

XO-
Us

Samantha and I spent the night battling evil catheter nurses, seizures and begging for drugs like a junkie on Hollywood Blvd. Sound like fun? Well at least the coffee is free.

Kids who have muscle issues sometimes have a hard time emptying their bladder..you know the song…the hip bone’s connected to the leg bone? Well it is…it’s all connected. So we’re doing a pee-pee study while we’re in here. Enter the evil catheter nurses. After 3 nurses and FIVE tries, I kicked them all out and told them to get the Urologist. They really weren’t tyring to be evil but when it comes to five unsucessful caths anyone can look mean. I guess when the nurse looks up at you and asks if your daughter is ‘anatomically correct’, it’s a bad sign. How do you respond to that?

So, it was midnight and Samantha was awake and mad. At home when it’s midnight and Samanth is awake and mad we sedate her but since we’re looking for seizures….no sedation. Since Samantha hasn’t slept since 6:00 this morning, she started seizing. Well, I guess that’s what we’re here for, right?

Five seizures later, it’s 2:00 in the morning and I am begging for drugs. “Give my daughter the goods!!!”

The nurses called our doctors and ten minutes later Samantha is snoozing in her crib…there is a god. I hunker down in our nifty little hide-a-bed and try to get some sleep.

6:30 the people from the lab came in to collect blood and urine. I told them no one in their right mind should be drawing blood from anyone at 6:30 in the morning and asked them to come back later. They failed to see my reasoning but did leave.

Four hours of sleep is do-able. My dad came in at 7:30 with a big coffee….mmmm…coffee.

First day in the hospital! Samantha is hooked up and I’m watching squiggly waves on the monitor now. She had one seizure….as soon as the last electrode was placed on her head she gave a little show and then fell asleep for 4 hours. I think it was the airplane glue. Since the eletrodes have to stay on a squirmy baby for 5 days, they glue them onto her head with airplane glue and a small hairdryer thing…kid you not. An hour of breathing glue fumes….whooo! Stoney, zoney, pony.

We had a visit from our pharmacist as we tried to sort out Samantha’s meds. After explaining our drug protocol, he decided to keep me in charge of Samantha’s medication distribution. “I wouldn’t want to mess with your mojo.” He told me as he was on the way out of our room. Yeah! Don’t be messin’ with my mojo man.

That is about the extend of our day! Lots of visits from nurses and doctors…nothing definate yet. The new hospital is great and on-demand movies include Cinderella and Harry Potter. Could you ask for anything more? Really.

My mojo is tired; I’m hoping our baby girl is too. Here’s to tomorrow and more answers.

XO-
Schichtel Clan

So it’s been a year. A year ago on this Sunday we were sitting in the E.R at Children’s watching grim-faced doctors run in and out of our room, order tests, return with results and order more tests.

365 days.

I am celebrating by having a piece of fabulous, home-made, made from scratch, double-layer, chocolate birthday cake; made by my good friend, Christy. Christy and I weren’t friends last year. We knew each other but I don’t think she would have made me a fabulous birthday cake.

365 days.

I was watching Hope Floats this afternoon while Samantha took a nap. It’s a cheesy, chick-flick but mindless entertainment when you’re laying on the couch in a comatose state. It’s good for Sunday afternoons. The only redeeming quality about Hope Floats is that Harry Connick Jr. is the male lead. Harry……almost as delicious as this chocolate cake…..but not quite.

A chick-flick cannot end without a meaningful quote about life. It’s a chick-flick requirement. The quote was (something like this, I was napping) “Life has beginning and ends. The beginnings are scary and the endings are usually sad but the good stuff always happens in the middle. When the beginnings seem scary, just wait for the water to settle because hope floats and it always rises up to the surface.” Awww, I thought…I like that hope floats.

I am now giggling to myself as I write this. I just changed Samantha’s very full, healthy diaper…. as I was walking down the stairs I thought, hmmmmm, you could say the same thing about poopy. Poopy floats.

365 days…..Harry Connick Jr……chocolate cake…..can I recover from the poopy comment? I’m trying.

I start school tomorrow to get my Nursing Assistant certification. Talk about scary beginnings! I am now required to retain and process information….oof. Funny thing, this beginning wouldn’t have happened if it had not been for the other beginning 365 days ago; nor would I have chocolate cake or a reason to celebrate this evening.

365 days….hope floats (and yes, I guess other things do too 🙂

It takes a village to raise a child. In the case of my child it takes a very, very large village with a good pharmacy. We are very lucky that the most active villagers are Samantha’s grandparents. I know this isn’t always the case and I am continually counting my lucky stars.

My birthday weekend was celebrated in Breckenridge with Bart, Samantha and her grandparents, Pops and Nonnie. What a fabulous weekend! Good food, good snow, good company and a chance to connect with my inner Beastie. My Beastie is amazing. She is strong, fearless and a kick-ass skier (ha!). Unfortunately, two back-to-back pregnancies and a sick child had sent my Beastie into hibernation.

It takes a village to release her. The capable hands of Nonnie watching Samantha so that I can ski without obsessively checking my cell phone. Dad and Bart who promptly led me up to the Peak 8 bowl without a warm-up….ahh the confidence they have in me! I am pleased to announce that my Beastie can be summoned with a little help. She shakes off the cobwebs, pulls down her goggles and howls at the moon! She jumps off the top of Peak 8 without a second thought. She needed to be released. I am grateful to the villagers who let her come out and play.

As I write this I am sipping tea at a coffee shop while Grandma Judi watches Sam. Ahhh, my good village with strong warriors and smart medicine women.

The moderator of my writing group said to me “You have been given wings.” Hmmmmm, wings make me a flying Beastie…..ROAR!

As I’m writing this evening, my husband is watching a man get ‘tazed’ on the SciFi channel. 19 muscle pulses per second when you get tazed…who knew. Who knew that this would be considered entertainment.

Here’s the big news for this evening. We are weaning Samantha off her Topamax which is always tough and sleep is unpredictable. We all had a party until 2:00 am on Saturday. After drugging the baby, she decided to sleep until noon the next day! So guess who also slept until noon! Ten whole hours, yes Virginia, there is a Santa Claus. I was up at nine to give her breakfast and seizure meds and then snuggled back under the sheets. Ten hours….oooof…fabulous.

Refreshed and celebrating the New Year, I decided it was time to clean out my underwear drawer. This is relevant, really. I threw out all my old maternity underwear along with my thong underwear. It was kind of the two ends of the spectrum. The yin and yang of life, the middle of the road. I am now sitting comfortably in my granny panties.

This year I have resolved to take better care of myself. I went to spin class for the first time in THREE years. I dusted off my cycling shoes, searched for those hairy spiders that can dwell in the toe and squeezed into my cycling shorts (they might have the same fate as my underwear). Here’s the great thing…..it was FABULOUS! I felt so strong. I will be limping down the stairs tomorrow morning but this afternoon, the endorphins were pumping.

I constantly thought about Samantha during the class. I thought about how strong my legs felt and hoped that Samantha will someday experience this. I also thought that it would be a travesty not to use my legs. I have this strong, healthy body and a kiddo who fights for head control. I gotta get out there. Sounds good huh? Ask me how I feel tomorrow as I groan out of bed 🙂

The tazer show is over. Thank God for cable! Here’s to a good week and seizure free days.

What a kick! I joined an hour ago and met up with six friends. If you haven’t done it, I highly recommend it….great way to dabble a little time. My friend Ginger sent me a slinky through Facebook…who knew. With the baby asleep in her room (cross your fingers) the hubbie asleep on the couch and a repeat of the debates, I had a little time.

I LOST MY WALLET TODAY! Scary! The worst part is that I didn’t even know. I had it in the back pocket of our stroller and it must have fallen out. The mall security called me at home….”Hi, we have your wallet. Would you like to come get it?” I would like to thank the mystery person who picked it up…cash, checkbook and everything and turned it into the Gap. Thank you mystery person.

Samantha is well and finally pushing about 10 teeth. We took her off her 2:00 of Topamax….wish us luck!

Hey, find me on Facebook; along with Hilary and Obama. Maybe I’ll put you on my wall 🙂

Happy Sunday.

-Heather

Happy Holidays! Happy New Year!

As I’m writing, I have one eye on the Iowa caucus; a year of much needed change. A friend of mine calls me the ‘the most liberal friend she knows’ so I’m sure you can all guess my views. I feel energized by the changes afoot and I’m trying to incorporate this into my life.

My husband and I got a much needed reprieve during the holidays. We got to go skiing together! (thanks Grandma Judi and Aunt Jen!) It was a cold, blustery day but so great to be outside and up in the mountains. I had my ‘A’ game going until about 1:30 and then my legs gave up…game over. We started home around 3:00 only to be stuck on I-70 with about 1,000 of our soon-to-be closest friends. 2 1/2 hours later we had gone about 5 miles up to Eisenhower tunnel only to hear that the interstate was closed east and west due to high winds, snow and icy roads. We found ourselves wedged between two semi-trucks and a Volvo, all spinning their wheels trying to gain traction and sliding towards us. Bart found a hole between the trucks and maneuvered us through, being one of the last cars to get through for the next 24 hours. Whew!

Maybe that’s what our 2008 is about; finding different ways through a tough situation, being somewhat tenacious and not being afraid of the big trucks.

We spent New Year’s Eve with friends. At midnight they opened all the doors to let 2007 out and welcome 2008. When we got home, Bart open our doors and kept them open for about 20 minutes…..brrrrr. He wanted to make sure 2007 was gone for good. Adios. Hello 2008….now shut the door.

New Year’s left me with a nasty cold and Samantha with cluster seizures. Bart decided he should have left the doors open a little longer. Nah, we’re just getting rid of residual 2007.

Opening new doors and finding new paths. Welcome 2008.

So, I took the seizure counter down. Samantha had two today but that’s not really why I took it down….it’s kind of like counting the runny-nose-free days a kiddo has. Sooner or later that nose will run, so hey, why put that pressure on the sinuses? Samantha continues to do well, get stronger and we’re on our way to sitting up!

The Today Show did a feature on epilepsy this morning and did a great job. The link is below…
http://allday.msnbc.msn.com/archive/2007/12/13/513627.aspx. The video is really touching and speaks the truth. Epilepsy effects more people then Cystic Fibrosis, Multiple Sclerosis, Parkinson’s, and Muscular Dystrophy combined, three million people….yet so little is known about it. Twenty years ago the common control was crazy levels of phenobarbital. And we think Ritalin is bad! Anyway, they have come a long way and spots on the Today show can only help. Maybe Matt Lauer can help with a fund raiser…..mmmmm….Matt Lauer.

So, I’m off my soap box to talk about another issue….

It’s twelve days to Christmas and I have to laugh at my pre-season thinking. I thought…”I’m now a stay at home mom, I’ll have plenty of time to get everything together” HA!. T’was days before Christmas and not a present in sight….Mom’s hoping to go shopping before Christmas night! The stockings are up, but not with care. Right now I’m scanning the living room to see what I can re-gift. The Schichtel side has been passing around the same box of smoked salmon for about 4 seasons now….what’s the shelf life of a fruit cake?

I’m a sucker for a cause; always have been. In high school a group of us piled into my rusty station wagon with the Greenpeace bumper sticker. We headed down to the local Burger King to protest their use of Icelandic cod. Iceland commercially hunted Minke whales….we had our cause.

“Hold the pickles! Hold the lettuce! Icelandic whaling really upsets us!”

Now, I always thought the people down at Greenpeace could have come up with a better lyric but no matter. I felt empowered. I was saving the poor little whales from the big, hairy Icelandic fishermen.

I read later that Iceland is a very environmentally conscious country and whaling was legal and monitored very closely. Hmmm…well then I felt a little silly. So I had a Whopper.

This was my issue with protesting, there was always another side, I was easily swayed and my causes changed with the wind.

Twenty years later, I have found my cause; Samantha. She’s as cute and cuddly as a baby seal and heck…if I can’t advocate for my family, who can I get out there for?

Samantha qualifies for state aid which is a double-edge sword. We find ourselves saying “Great! We qualify!” followed by “Well crap, she’s sick enough that we qualify.”

With state aid comes paperwork, battles and bureaucracy, more than I ever thought possible and we’re not even in the school system yet! With every election comes budget cuts and reductions in funding and social programs. All of this directly impacts our family and thousands out there. Bring on the signs and picket lines!

Then there is the human aspect. I advocate to meet other people and hear their stories. Great stories….a man with cerebral palsy who struggles to get every word out proudly telling about his job at Target, a young lady who just got her own apartment and is living on her own, a teenager with Downs Syndrome who recently went to her 3rd prom with the ‘popular kids’ in a limo. Wow! If I ever feel down, sign me up for one of these meetings. I realize that Samantha is so much more than milestones and tests’; she is a person who will grow into her own self.

The main reason why I advocate so strongly for my daughter is very self-serving. It’s empowering. It makes me feel that I have some sort of control. I cannot control the crazy, rare, genetic condition she has. I can only do so much to control her seizures and sometimes I watch helplessly as the milestones pass. I can however, try to change the type of world that receives Samantha. Whether it be attending a typical kindergarten class, finding gainful, competitive employment later in life, or getting apartment of her own. The things I do now, the ruckus I raise, will help her have a better life. Better cause? Nah, I really can’t think of any.