Sunday, June 24, 2007

DR Trip 1st Leg: Rough Start

Since Soren started the GFCF diet, we switched him from cow's milk to Almond Breeze, an almond milk which he LOVES (lucky). However, we figured we couldn't go lugging gallons of the drink across the country. So in preparation for our trip I tracked down a powder potato milk that can be mixed with water.

I wisely tested him on the potato milk and while it wasn't a favorite like the almond, he tolerated it just fine. My sister then helped me do the math so I knew how much of this powder I would need to pack to make up 27 oz/day. I triple bagged it and, though I feared I would get busted for smuggling a mysterious white powder into a foreign country, I figured when they realized it tasted like cake mix, they would set me free.

So we set off from LAX to Atlanta on Friday. Before we left home, I got a bottle of the almond drink into Soren, just to be safe. On the plane I mixed up the potato milk, but then failed miserably to get it in Soren. I figured it was just the plane travel. We stopped in Atlanta and made it to our hotel, where we were spending the night. I figured Soren would be desperate for liquid by this point between the plane ride and the lack of drink since 6 that morning. But no. He just dribbled it out. I tried again at dinner to no avail. He was having none of it.

Now, the reason we stayed over night was that we were driving to Chatanooga, TN the next day to visit Aaron's longtime friend Chris and his family. He and his wife Marcie had kindly picked up some of Almond Breeze for our visit. I was hoping Soren could hold through then if he was still a pill in the morning about the potato stuff.

But at 4 am that morning in my sleep I thought I heard something. I got up and Soren appeared to be asleep, but his heart was racing. I figured I had just missed the end of a seizure. This was confirmed at 8 am when he woke with a seizure. He then had another one at 8:40, 9:40, 10:40, and 11:40. Hard, horrible, tonic-clonics. When we saw how things were going, Aaron ran out to a market and bought them out of Almond Breeze. Then the challenge was to rehydrate him between seizures. And even though he was kind of out of it (understandably), he sucked that stuff down like it was liquid gold. After his 11:40 seizure, we gave him Diastat to "reset" his brain.

And I am happy to say that all this worked. Soren is back to being his happy, kicking self. We made it to Chatanooga, though we did start much later than planned and he did have 2 of the seizures on the road. Yesterday was tense, but today has been lovely.

Just goes to show how travel and messing with the routine can really mess up this little guy. The seizures can come out so quickly just with dehydration and stress. But we forge on!

Now we just have a buy another suitcase so we can get all this Almond Breeze to the DR!


Wednesday, June 20, 2007

Back to the DDDR

Don't know how lucky we are, boy.

We start our trip to the DR on Friday. One of Aaron's generous business associates donated his Delta miles to us so we could travel to Miami. Delta stops in Atlanta, so we are taking advantage of the stop and visiting some friends in Chatanooga, TN and getting a tour of Cartoon Network.

After that, we continue on to Miami, where we will meet up with Aaron's folks. And then on to the DR!!!!!

We are very excited about this trip. Soren has not had a seizure for a month (knock wood)! We really think the GFCF diet is to thank for this. Hopefully the stress from travel won't bring on any seizures. AND hopefully we will see some fantastic results from this next treatment!

On another note, Soren is doing quite well. He had an awards ceremony at his school yesterday. Every child in his class got an award for their particular accomplishment. Soren's was for "Independent Sitting." He can now sit for up to 40 minutes against a wall with only that as support!

All the other kids got similar, impressive awards. It was a cool ceremony for amazing kids.

And that leads me to yet ANOTHER note. I got an email from another "special needs" mom yesterday. Her son has Down's and Soren was in class at UCLA with this boy. The email was about an amazing young man named Soeren Palumbo (yes, same name, different spelling). You may have heard of Soeren already. If not, let me tell you about him.

Soeren now a recent high school graduate. 4.0 GPA, 1st in his class, a National Merit Scholar, and will be attending Notre Dame. In February he gave an amazing speech to his high school class about people's casual and cruel use of the word "Retard." The video is not the best, but you can listen to his speech on YouTube.
  • Soeren's Speech

  • His point was that, in this age of political correctness, why is it still acceptable to use the word Retard? And not just to use it in random conversation as a replacement for other words like "stupid" or "dumb." But to specifically target it against the mentally handicapped. Soeren's sister Olivia is mentally challenged, so the use of this word offends him greatly. He didn't understand why people, whose brains are working "normally" would attack people who, because of their "deficiencies" will never hate. Why would people with, theoretically, more brain power want to harm someone with less brain power--someone who would never try to harm them? Soeren's speech struck such a cord, he did an edited verson for Senate and had news reports done on him.

    Now I'll admit right now that I have been guilty of using this word. I've said, "That's totally retarded," without thinking twice about the people it's actually aimed at insulting. Interesting because I learned back in junior high not to say, "That's so gay." I don't say that because "gay" in that context would mean "stupid" and I have plenty of gay friends and none of them are stupid.

    Yet, even after I had Soren and knew his diagnosis, I STILL said, "That's so retarded." Now it wasn't in reference to a person who had challenges, so I rationalized that it was okay (knowing full-well that it wasn't). I thought since I was just using it as an adjective, I was in the clear. Plus, I was a feeling defiant. I didn't want this word taken away just because of my child's disability. Finally, I got it through my own thick head that this just wasn't a good word, no matter how I used it.

    Part of that was realizing how much others used it. People really use it rather nonchalantly. Like me, I have friends who still say this. What's sad is that I haven't had the guts to tell them that it hurts my feelings. I know it's because when they say it they, like me, don't REALLY mean to insult the mentally challenged. They don't mean to insult Soren. They just use it as a word. But the other Soeren's other point was, would you say other offensive and hurtful words as easily? Would you say, "Faggot"? Would you say, "Nigger"?

    So why say, "Retard"?

    Sure, it's just a synonym for stupid and dumb. The difference is, "Stupids" and "Dummies" aren't derogatory terms for a certain group in our society.

    And Soren and his schoolmates aren't Retards. The children I saw yesterday all have their challenges. But each of them is making strides every day towards independence and they all deserved these amazing rewards.

    So, thank you Soeren for speaking out for my Soren.


    Friday, June 15, 2007

    Greg Grunberg: My Hero

    Greg Grunberg, from the show Heroes and Alias, has a son who also has Epilepsy. I actually met Greg at a fundraiser for UCLA's Children's Hospital
  • Pediatric Epilepsy Project
  • He was very kind and our sons actually have, not only Epilepsy in common, but the drug to help control their Epilepsy: Lamictal.

    Greg has made Epilepsy his cause, speaking out and raising awareness. I recently discovered this video he did for
  • The Epilepsy Foundation
  • Here he talks about what to do when someone has a seizure. I've learned through all this that Epilepsy is a disease that people don't talk about and often misunderstand. It's good that Greg and other parents are helping get Epilepsy out of the closet.


    Sunday, June 10, 2007

    Another Worthy Cause

    My friend Cindy, in conjunction with Cartoon Network, is doing an art auction at Cartoon Network for the Family Service Agency of Burbank on Saturday, June 30. The silent auction bidding goes from 6:00 to 7:30.

    A similar auction was held a little over a year ago for Soren's friend Fyn, who was diagnosed with a rare pediatric liver cancer. Artists from all over donated their work for the auction and over $40,000 was raised to help Fyn's family with the financial burden. Being the amazing people that they are, they then gave Soren $10,000 of that money to help with his stem cell injections!

    The Family Service Agency is another VERY WORTHY cause and I'm sure more AMAZING ART will be donated. If you have art to donate, PLEASE DO! If you are are in the area on the 30th and interested in getting some great art and giving to a great cause, Please Do!


    Tuesday, June 05, 2007

    Ahead with Horses Needs Your Help!

    As I've written before, Soren has Hippotherapy at Ahead with Horses every Friday. No, Soren does not ride a hippo as the name implies. The Greek word for horse is hippo. So this is Horse Therapy (though I would love to see Soren riding a hippo).

    It's quite amazing to see Soren up on the horse. Riding really has helped his neck and trunk strength, challenging him in a very different way than his other therapies.

    This Sunday, June 10th is Ahead with Horses 26th Annual Fun Day! This is their BIG fundraiser and this year, they REALLY need the funds because their state funding was revoked.
    Here is the link to

  • On the sidebar to the left, you'll see AWH Events. There you click on Coming Events to get information about Fun Day.

    To donate, click on AWH Needs and that will lead you to a donation link.

    You can also just mail a check to:


    Thanks! Amy