Thursday, July 30, 2009

Fingers Crossed for Today's Appointment

Today is our appointment with the neurologist. Today we will find out the results of Finley's most recent EEG. Today is a BIG day because it could possibly have some answers.

And finally, TODAY the Wiggles are in town...

and we aren't going.


I really wanted to be able to take both of the boys because J.T. and I had soooo much fun 2 years ago when they came. See?

** Yes, thank you, I am very aware that my hair was, um, awful.


Monday, July 20, 2009

We Survived!

Today was Finley's EEG.... my plans for keeping him awake worked! My plans for keeping him calm during the electrode placement? Not so much.... he did, however, fall asleep from sheer exhaustion. Mwuahahahaha (evil and genius laugh implied here)
And of course, I took pictures to prove the entire process.


So sweet to take a picture with mommy upon waking....

Completely over it....

Gooey, goopy hair, but glad it's over!

What did you do today?


Sunday, July 19, 2009

Do you.... tattoo?

Hello... remember me? I'm the girl who has totally freaked out the past week over my son having sudden onset seizures. However, I think I am starting to adjust to our new normal. Well, that, and my mother flew into town today to help me this week while John is away. I know, I know... John has been out of town a lot and I manage fine on my own, but let's just say I have been a tad overwhelmed. But the show must go on... and on it has: See?

Finley playing in the sprinklers...

J.T.'s silly dance...

Taking a break... it's hard work being 2!

We had a blast at Southlands Mall today, letting the kiddos play in the water, letting them dry off as we ate dinner outside at Tokyo Joe's, changing them into their pajamas in the car and going grocery shopping for the week before bedtime.

I ordered and actually received (in only 2 days mind you) a medical ID band for Finn this week. I ordered it here, and also these cute temporary tattoos for when we are swimming so much in the summer. If those aren't cute then I don't know what is. If you are going to have a tattoo, you might as well say something!

On a more serious note, tomorrow is Finley's EEG at Children's Hospital. Please pray that our day is uneventful and that Finn will not be scared, but comforted throughout this entire process. Oh, and that we all survive him going WITHOUT a nap until then!


Wednesday, July 15, 2009

Will you pray for Finley?

After Finley's stroke, I was introduced to the blog world. At first it was a way to update family and friends, but then it became so much more. Soon, it became a place for me to get it all out and "say" what I was feeling or thinking at that moment. It is funny to look back really because I can't tell you how many "posts" I started and even finished, only to delete them shortly after. It was therapy enough to put it into words; I didn't need anyone to read them. Now, however, I am asking all of the blogosphere (is that a word?) to chime in and help me out.
This past weekend, Saturday to be exact, Finley had his first seizure since birth. We were at the ballpark for J.T.'s baseball game and Finley was sitting in his stroller. He just zoned out. His eyes glazed over, he began thrusting his tongue and drool was pouring out of his mouth as if someone turned the faucet on. The nurse in me began to time the "episode" and called the pediatrician to see what she thought we should do. However, the mother in me was terrified... especially because my sister-in-law was witnessing it with me and she looked like she may pass out/ freak out. (fyi: she is the calm one) Our pediatrician said to go to the ER, so we headed to Children's Hospital up the road. Once we were there, I will spare you all of the gory details, Finn had another "episode" and the Pediatric Intensivist felt very strongly that it was a seizure. HOURS later, we were sent home with an emergency medication in the event of another seizure.... and here we are.
So here are my questions and a little bit of information:

1. Have you ever used the Diastat Acudial on your child during a seizure? How do you think it worked? Were there any side effects associated with the medication that you felt were truly the medication and not the seizure itself?

2. If your child wears a medical alert bracelet, where did you purchase it? Are you satisfied with it? Are there any that aren't worth the money/ companies that I should stay away from?

This Monday, July 20th, we are having another EEG. He can't have any sugar or caffeine starting Sunday, no nap the day of the EEG, and needs to take a nap after the EEG is started. Okay, sure! Finley has had two EEG's in his life, but he was 2 days (inpatient) and 2 weeks (outpatient) old at the time. I have no idea how to do this. His EEG is at 2 p.m., soooo my plan is: Take J.T. to preschool in the morning and then take Finley to a 2nd breakfast very close to the hospital. I am going to park my car at the hospital and we will walk to our gym across the street where I will let Finley play until lunch. We'll have lunch at the cafe in the gym and then get on our swimsuits and swim for a while since he loves the water and it wears him out. Then, we will grab a little snack, and walk back across the street to the hospital where he will, hopefully, be ready to zonk out. I am scared to put him in the car because it is "insta-nap" for him. (I tend to have great ideas, but when it comes time to implement them, there are usually some holes the first time around... and I really don't want this to be one of those times!) So....

1. What would you do to keep your child awake? Keep your child happy?

2. How do you get a child to sleep with a zillion electrodes on his head and in a strange place?

3. Any experiences with this that may help me out?

A few days after the EEG, we will see our neurologist:

1. Has/ does your child take a daily anti-convulsant? Which one? Are you satisfied with the results?

2. What questions do I need to ask?

Oh yeah, just one more I think: How long does it take your child/ family member to recover after having a seizure? (It took Finley the better part of 2 hours to get back to normal.... and he slept the majority of the day in between.)

Okay, okay I'm not really done :)

Do you have any advice? I am so overwhelmed right now. I feel like our way of doing things has changed so much in an instant. I feel like I did immediately after the stroke. I am scared to turn my back on the boys in the bathtub for a second (more than usual), I worry every time we leave the house if I have his emergency med, if we will be able to get to the hospital in time if he has a prolonged seizure. Every time the phone rings when he's at preschool, I wonder if they are calling to tell me something has happened. I know that things could be a lot worse, but I guess whenever our normal changes, I have this period of adjusting that is very anxiety-ridden.

I truly appreciate your input.


Thursday, July 2, 2009

Making Progress

The past few weeks have been, well, hot if nothing else.

So the boys have been playing in the sprinklers, climbing on the roof, you know, the usual.

Speaking of the deck's roof, it is really looking nice isn't it?

But, "all work and no play"..... you know what they say. That's why we loaded up the car with some of our neighborhood kids and went to eat at Tokyo Joe's.

Oh yeah, and saw the new Transformers movie. (and showed Bumblebee some moves of our own.) :0)

Have a great 4th of July weekend!!!