Month: March 2008

So, I wanted to write this post about my FIRST night away with my husband since Samantha got sick and what a fun time we had BUT then I got diverted. I learned about the birth of Baby C and he and his parents have been on my mind all day. Without divulging too much, Baby C had a bit of a rough start but he has great, smart parents who are committed to his health and happiness. But it got me thinking about the weekend, a year ago, when I was confronted about Samantha and her future. My friend Christy gave me a poem ‘Welcome to Holland’ (it’s posted on the blog). I thought, well that’s a great poem but we’re not going to Holland, thank you very much.” A year later, I think we’re part of the Amsterdam tourist bureau. Is it ok? Yes. I like Rembrant and tulips but I’ll always yearn for a pizza or two.

What is in our Holland?

Have you ever been to Disney Land (World?) Did you ever ride the Small World ride? I think of our ‘Holland’ as the Small World Ride. Yeah, Space Mountain is much more exciting but there are a lot of little people in the Small World ride who are there to welcome you and remind you that you are all in this boat together.

I think I know of families who were sent to Holland as a layover and eventually got sent to Italy. These are the best tourists because they will never take the gelatto for granted, they know what a work of art the David is and that the Duomo is a miracle. Is it because they spent the last year in wooden shoes? Maybe. But for those, the sun is a little brighter, miracles mean more and happiness is cherished.

So, to Baby C and his parents, I know no one knows the future. If you land in Holland for a little while that’s ok. Smell the tulips, ride the boats, see a Rembrant and don’t forget there is a group there to welcome you. We are sitting in the tulips, clicking our shoes and offering advice.

It’s a world of laughter
A world of tears
It’s a world of hopes
And a world of fears
There’s so much that we share
That it’s time we’re aware
It’s a small world after all

Have a sweet night Baby C.

XO-
Us

So, as a friend of mine put it, “You told us you were going home and that was it.” Yes, she’s right….it’s been a while since we sent an update. I gotta tell you though, the hospital sucked the life out of me; suck, suck suck. I don’t know how we got through 45 days in six weeks at Children’s last year. For those of you who saw us last year and thought we were on the verge of a breakdown, I appreciate you not saying anything. Those of you who saw us and just handed us a glass of wine….well I appreciate you too 🙂

So, was it worth it? Well yes, but if you ask Samantha, she might have a different opinion. We came home with peace of mind. We have weaned Samantha off of so many siezure meds that anytime she made a jerky movement, stared off into space, I questioned if she was having a seizure or even worse, that her spasms were back. Well, our neuro said no, what is a seizure is a seizure and that’s it. AND our neuro said it with a smile. I love our neuro but business is business she’s not one to sugar my coffee, butter my toast or tell me that things look good when they don’t. You know what she told me? She told me things look good 🙂

We still struggle with seizure control. When Samantha has a good day, everyone has a good day and I think it will be that way for a while.

On a side note….thanks to everyone who have joined the SAMMER HAMMER!!! Again, mark your calendars for April 20th at Washington Park in Denver. The Hammer has $360.00 to her name. We are very touched you are spending your Sunday with us.

I’ll try not to wait two weeks again. Happy hump day everyone!

XO-
Us

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