The GREAT news is that Soren has remained seizure-free all week!
After that, everything else is gravy. And the gravy has been pretty good as well. Part of the UCLA Intervention Program is that Soren is evaluated by a developmental pediatrian every six months. He had this 6 months ago and then had his second evaluation yesterday. What this means is that the doctor tries to see what progress Soren has made since the last visit. And I tend not to look at that kind of thing, so it was nice to have someone else put in in perspective.
Six months ago, Soren was still on Zonegran, and thus, still very drowsy at times. Now he is off it and MUCH more alert. Six months ago, Soren hadn't turned to his side. And while Soren still won't follow objects with his eyes or hold a toy in his grasp, there is one thing he does that ALWAYS impresses people.
He eats. He eats well. And he tends to sing and talk when he does it. And since we started feeding therapy (about 5 months ago), he is now taking bites of crackers, can drink thick liquids from a cup, and can negotiate a piece of food from one side of his mouth to the other (he prefers to chew on the right). These are skills he didn't have 6 months ago. And the doctor was HUGELY impressed.
It made me feel good. I forget that all these every day little things add up to a lot. Now we're working on him using a spoon (with our hand holding his hand) and him holding the cup (again, with assistance). I feel that if anything will motivate this boy to hold onto something, it's if it's food.
So, a good week. And over last week, I'll sure take it.
Amy
Friday, June 30, 2006
Monday, June 26, 2006
Good Monday
We had another seizure-free day! It was really wonderful.
Plus, Soren had a good day in general. After a week off from school, Soren went back to UCLA. They have a computer there with a very large button for Soren to press to activate the program. He was pressing the button with purpose, which is a positive change.
After school we went to visit Fyn in the hospital. He's looking good. Weary and sore, but good. Soren was being fussy, so we put him on Fyn's bed to stretch. Fyn said Soren smelled like frosting. I was confused by this until I realized that we put cocoa butter lotion on Soren every day. Fyn was right. Soren did smell like frosting.
Then Soren did a great job in Speech Therapy. His therapists are all finally figuring out what Soren is motivated by--food. We're getting him to stand for food (with support), look at pictures for food, and today we were working on the sign language sign for "more" with food.
Then this evening he was in a nasty, foul mood. I tried everything to settle him down. Snuggling, milk, but he wouldn't be consoled. It's funny, today at the hospital he was very fussy, wanting to get out of his stroller. But he wasn't crying. Fyn's mom Dayla asked if Soren ever really cried. And he usually doesn't. He doesn't get that emotional very often. But tonight he did. Just mad, red faced, tears, screaming and pissed off. And even though it was frustrating, it was good to see him just be fussy like a typical kid. Eventually he turned to his side and just passed out. Whatever was making him mad was over.
I'll keep you all up to speed on the seizures (or lack of them)!
Amy
Plus, Soren had a good day in general. After a week off from school, Soren went back to UCLA. They have a computer there with a very large button for Soren to press to activate the program. He was pressing the button with purpose, which is a positive change.
After school we went to visit Fyn in the hospital. He's looking good. Weary and sore, but good. Soren was being fussy, so we put him on Fyn's bed to stretch. Fyn said Soren smelled like frosting. I was confused by this until I realized that we put cocoa butter lotion on Soren every day. Fyn was right. Soren did smell like frosting.
Then Soren did a great job in Speech Therapy. His therapists are all finally figuring out what Soren is motivated by--food. We're getting him to stand for food (with support), look at pictures for food, and today we were working on the sign language sign for "more" with food.
Then this evening he was in a nasty, foul mood. I tried everything to settle him down. Snuggling, milk, but he wouldn't be consoled. It's funny, today at the hospital he was very fussy, wanting to get out of his stroller. But he wasn't crying. Fyn's mom Dayla asked if Soren ever really cried. And he usually doesn't. He doesn't get that emotional very often. But tonight he did. Just mad, red faced, tears, screaming and pissed off. And even though it was frustrating, it was good to see him just be fussy like a typical kid. Eventually he turned to his side and just passed out. Whatever was making him mad was over.
I'll keep you all up to speed on the seizures (or lack of them)!
Amy
Sunday, June 25, 2006
Dark Day, Getting Better
It's been a very stressful 5 days. As I wrote earlier, Soren had 2 seizures on Wednesday. I contacted his doctor and got the okay to increase the Lamictal by 5 mg for his evening dose.
Then Thursday Soren had 5 seizures. Tonic again. 30 seconds each. Spaced out by about 3 hours. He was post-ictal after each one, quite wiped out. Though, once he got through that, he bounced back to his usual chipper, kicking self. I think I was more wiped out than him, not bouncing back quite as well. Plus Aaron had to work that night. I ended up calling him and crying my eyes out. I thought I was better, but then my sister called and I balled again. Then my friend Sheri called, and it happened once more. Just when I'd finally finished, Aaron came home early, having gotten excused from work.
Friday Soren had 2 seizures, one in front of friends who had never witnessed one, so that was a bummer.
Yesterday we only saw 1 in the morning. Then last night we were at some friends' house and Soren was an absolute charmer--talking, kicking, turning to his side. My fear is him regressing developmentally, losing the gains he has made. So far that doesn't seem to have happened.
Today I haven't seen any. He was laughing and smiling while I fed him his avocado. Big green grins. Silly goose.
So now I continue to watch like a hawk. It's rather nerve-wracking. I don't like to have him out of my sight even though there's nothing I can do once the seizure starts. I just want him to know that I'm here for him. And it appears that the increase in the Lamictal is doing it's job. Cross your fingers.
Amy
Then Thursday Soren had 5 seizures. Tonic again. 30 seconds each. Spaced out by about 3 hours. He was post-ictal after each one, quite wiped out. Though, once he got through that, he bounced back to his usual chipper, kicking self. I think I was more wiped out than him, not bouncing back quite as well. Plus Aaron had to work that night. I ended up calling him and crying my eyes out. I thought I was better, but then my sister called and I balled again. Then my friend Sheri called, and it happened once more. Just when I'd finally finished, Aaron came home early, having gotten excused from work.
Friday Soren had 2 seizures, one in front of friends who had never witnessed one, so that was a bummer.
Yesterday we only saw 1 in the morning. Then last night we were at some friends' house and Soren was an absolute charmer--talking, kicking, turning to his side. My fear is him regressing developmentally, losing the gains he has made. So far that doesn't seem to have happened.
Today I haven't seen any. He was laughing and smiling while I fed him his avocado. Big green grins. Silly goose.
So now I continue to watch like a hawk. It's rather nerve-wracking. I don't like to have him out of my sight even though there's nothing I can do once the seizure starts. I just want him to know that I'm here for him. And it appears that the increase in the Lamictal is doing it's job. Cross your fingers.
Amy
Thursday, June 22, 2006
More Seizures
Soren had another seizure last night. He had it right before Aaron and I were about to go out. Since Soren hadn't had one in so long, it was the first time his babysitter ever saw one. Luckily we were there to make sure she knew what was going on. He was fine once it was done. He fell asleep as usual. I was, foolishly, hoping this would be the last we'd see.
But then he had another one during breakfast. Soren woke up really chipper, moving all about. He was eating great. And then he froze. I fished the food out of his mouth. He breathed through this one, though he still seemed to turn a little blue. Afterwards he conked out again. Now he has woken up and looks great.
It's hard. I need to be patient. We only increased his dosage last night. It will take a couple days to kick in, if it works. Hope with us that it does.
Amy
But then he had another one during breakfast. Soren woke up really chipper, moving all about. He was eating great. And then he froze. I fished the food out of his mouth. He breathed through this one, though he still seemed to turn a little blue. Afterwards he conked out again. Now he has woken up and looks great.
It's hard. I need to be patient. We only increased his dosage last night. It will take a couple days to kick in, if it works. Hope with us that it does.
Amy
Wednesday, June 21, 2006
Seizure and EEG Results
Soren had a seizure today. One that I actually witnessed. His teacher had mentioned last week that he had one, but unless I see it, I don't believe it. I am The Queen of Denial. But this one was undeniable. He looked like an archer drawing back his bow. One arm was straight, the other was bent. He had a fixed gaze. His heart was racing. And so was mine. This is a tonic seizure.
It's interesting how the second I see that, I get so very sad. It just breaks my heart. The thing is, it's probably just because Soren is a growing boy and has surpassed his current dosage of Lamictal. I called his neurologist and got the okay to increase his evening dose. We'll see how he does in three days or so. I trust that it will be fine. But still, the thought of going back to when he was seizing every day is too overwhelming to fathom.
In talking with his doctor, I also got Soren's EEG results from last week. Pretty much the same. He has a "spike wave on the right" which could indicate that he could be a surgical candidate in the future--but no guarantee. There was also a little bit of spiking on the left, but not as much. There was no sign of hypsarythmia, which is fantastic! That's 2 EEGs without that! And while last time he had background slowing, this time he only had "intermittent" background slowing. I'm hoping this is indicative of the development we've been seeing.
So, some bad, some good. Some frustration, some hope.
Amy
It's interesting how the second I see that, I get so very sad. It just breaks my heart. The thing is, it's probably just because Soren is a growing boy and has surpassed his current dosage of Lamictal. I called his neurologist and got the okay to increase his evening dose. We'll see how he does in three days or so. I trust that it will be fine. But still, the thought of going back to when he was seizing every day is too overwhelming to fathom.
In talking with his doctor, I also got Soren's EEG results from last week. Pretty much the same. He has a "spike wave on the right" which could indicate that he could be a surgical candidate in the future--but no guarantee. There was also a little bit of spiking on the left, but not as much. There was no sign of hypsarythmia, which is fantastic! That's 2 EEGs without that! And while last time he had background slowing, this time he only had "intermittent" background slowing. I'm hoping this is indicative of the development we've been seeing.
So, some bad, some good. Some frustration, some hope.
Amy
Tuesday, June 20, 2006
The Talbert Family Foundation
Now, while Soren does not have cancer, we found out about this foundation through an amazing little boy who does.
Previously I wrote about
Julie Talbert and I then found each other and Julie welcomed Soren in as a TFF Kid. What does this mean? This means that Soren can now receive TAX-DEDUCTIBLE DONATIONS through their foundation. And every dime of that donation goes to Soren. They don't take a cut. They don't scim off the top. They don't even take a little off the back end. Instead, they provide an option for people who may not have the time or energy to do the paperwork to set up a foundation. Yet, these kids and their families get the benefits of tax-deductible donations.
And as if that isn't generous enough, The Talbert Family Foundation is going to match the first $5,000 that we get donated! This totally blows me away. And this is through regular donations or tickets to "Dracula and the Beanstalk."
So, I want to thank Fyn, whose powerful battle led us to these people, Dayla for guiding them to Soren, Cindy for changing Soren's donation pages AGAIN to accomodate the change, Julie Talbert, her family, and the entire The Talbert Family Foundation for welcoming our little boy as a TFF Kid.
Amy
Wednesday, June 14, 2006
EEG Tomorrow, Comedy Tonight!
Yes, Soren is scheduled for an EEG tomorrow. His last EEG was in November. It showed some positive and negatives. The positive was that he no longer had hypsarythmia, the tell-tale indicator for Infantile Spasms. Now, this either means that Soren's meds (the Lamictal and Zonegran at that time) had stifled the hypsarythmia. Or he had outgrown the Infantile Spasms, which, indicative in the name, can happen. The problem then is that, if the seizures are not under control, the child just segues into another form of seizure disorder.
The negative was that Soren had (as I recall) "spike-wave tendencies" which means that he was prone to seizures. Which we kinda knew. But, still, it was on the EEG, which meant we were not out of the woods. Not that we thought we were. This was just a harsh reminder in concrete medical testing.
Oh, it also showed that Soren had a "slow background." Meaning that he was developing slowly. Something we also knew. But nothing like reality biting you in the ass as a reminder.
So now that he's been seizure-free for over a year and only on one AED, we (Aaron, me, and Soren's neurologist) felt it was time to see what was going on in that brain of Soren's.
Now for the COMEDY portion of the evening. In EEGs past, my biggest challenge was not feeding Soren in the morning so that he could get a "sleepy" medicine on an empty stomach. See, one of the goals in doing an EEG is to have the patient awake for one portion and asleep for another. Brain waves act differently depending if you are awake or asleep. And many seizures are activated (or aggravated) during transitions in sleep. Infantile Spasms are known for this. So, in tests past, Soren was allowed a full night's sleep, just no food in the morning. Then he was given medicine which would make him sleep part-way through the test.
BUT TOMORROW'S TEST IS DIFFERENT. For some reason, there is no sleepy medicine. Instead, I'm supposed to only allow Soren 4 HOURS SLEEP!!!! Okay, for any of you who know Soren, you realize what a joke this is. For those of you who don't, let me fill you in. Soren could be in a freakin' war zone and, if he wanted to sleep, he'd f'in' sleep. He's slept at parties. He's slept while eating. He purposely sleeps during therapies as a defense mechanism.
And, of course, he's been about as animated and goofy today as possible, taking no naps whatsoever. Soren has NEVER had a set nap schedule. After all, he's been on drugs most of his life that FORCE him to sleep. But today, for whatever reason, he has been laughing his ass off. He's been ticklish, cute, responsive. It's actually been quite a lovely day. But now, go figure, he's a little tired. I put the kids to bed, and he was laughing again, so I took him out so Mo could sleep. He giggled and wiggled for a while. But, as I've been writing this, he has dropped off. I've gone over twice to shake him awake. And he is out again. I'm not worrying too much because he's prone to cat naps and will hopefully wake up in about 20 minutes.
But still, 4 hours! That means that Aaron and I get 4 hours. Then I'm supposed to drive to UCLA? Good thing it'll be 7 am when the roads are clear. Just note, L.A. drivers, I'll be on the road in the morning with 4 hours sleep, so watch out! And then they've actually asked me to keep Soren awake DURING THE DRIVE. HAH! I know parents who purposely put their strung-out kids in the car and drive them around to put them to sleep. Driving in the car is the universal tranquilizer. But still, tomorrow Soren's caregiver will be in the car to poke at him during the drive, as if that is going to help "the child who will not be woken."
And, to be honest, I'm a little nervous about what the test will show. Soren's teacher at UCLA said she saw a seizure on Monday. Her description fit the bill. But I've seen nothing since then. And, like I said, he's been nothing but hilarious. So we'll see. Cross your fingers for us that it was just a freak thing.
All I know is that a repeat of "Lost," my TiVo'ed "Queer Eye," and my Netflixed Jackie Chan "The Tuxedo" are waiting for me to keep me up until the wee hours. And then there's the 4 am walk Soren and I will be going on. If you live in my neighborhood, watch out for the crazy lady with the stroller walking in the dark trying to keep her kid awake.
Oh, and Soren just woke up from his cat-nap. That's 20 minutes of his 4 hours. He's only allowed 3 hours and 40 minutes now. I better keep a tally.
Amy
The negative was that Soren had (as I recall) "spike-wave tendencies" which means that he was prone to seizures. Which we kinda knew. But, still, it was on the EEG, which meant we were not out of the woods. Not that we thought we were. This was just a harsh reminder in concrete medical testing.
Oh, it also showed that Soren had a "slow background." Meaning that he was developing slowly. Something we also knew. But nothing like reality biting you in the ass as a reminder.
So now that he's been seizure-free for over a year and only on one AED, we (Aaron, me, and Soren's neurologist) felt it was time to see what was going on in that brain of Soren's.
Now for the COMEDY portion of the evening. In EEGs past, my biggest challenge was not feeding Soren in the morning so that he could get a "sleepy" medicine on an empty stomach. See, one of the goals in doing an EEG is to have the patient awake for one portion and asleep for another. Brain waves act differently depending if you are awake or asleep. And many seizures are activated (or aggravated) during transitions in sleep. Infantile Spasms are known for this. So, in tests past, Soren was allowed a full night's sleep, just no food in the morning. Then he was given medicine which would make him sleep part-way through the test.
BUT TOMORROW'S TEST IS DIFFERENT. For some reason, there is no sleepy medicine. Instead, I'm supposed to only allow Soren 4 HOURS SLEEP!!!! Okay, for any of you who know Soren, you realize what a joke this is. For those of you who don't, let me fill you in. Soren could be in a freakin' war zone and, if he wanted to sleep, he'd f'in' sleep. He's slept at parties. He's slept while eating. He purposely sleeps during therapies as a defense mechanism.
And, of course, he's been about as animated and goofy today as possible, taking no naps whatsoever. Soren has NEVER had a set nap schedule. After all, he's been on drugs most of his life that FORCE him to sleep. But today, for whatever reason, he has been laughing his ass off. He's been ticklish, cute, responsive. It's actually been quite a lovely day. But now, go figure, he's a little tired. I put the kids to bed, and he was laughing again, so I took him out so Mo could sleep. He giggled and wiggled for a while. But, as I've been writing this, he has dropped off. I've gone over twice to shake him awake. And he is out again. I'm not worrying too much because he's prone to cat naps and will hopefully wake up in about 20 minutes.
But still, 4 hours! That means that Aaron and I get 4 hours. Then I'm supposed to drive to UCLA? Good thing it'll be 7 am when the roads are clear. Just note, L.A. drivers, I'll be on the road in the morning with 4 hours sleep, so watch out! And then they've actually asked me to keep Soren awake DURING THE DRIVE. HAH! I know parents who purposely put their strung-out kids in the car and drive them around to put them to sleep. Driving in the car is the universal tranquilizer. But still, tomorrow Soren's caregiver will be in the car to poke at him during the drive, as if that is going to help "the child who will not be woken."
And, to be honest, I'm a little nervous about what the test will show. Soren's teacher at UCLA said she saw a seizure on Monday. Her description fit the bill. But I've seen nothing since then. And, like I said, he's been nothing but hilarious. So we'll see. Cross your fingers for us that it was just a freak thing.
All I know is that a repeat of "Lost," my TiVo'ed "Queer Eye," and my Netflixed Jackie Chan "The Tuxedo" are waiting for me to keep me up until the wee hours. And then there's the 4 am walk Soren and I will be going on. If you live in my neighborhood, watch out for the crazy lady with the stroller walking in the dark trying to keep her kid awake.
Oh, and Soren just woke up from his cat-nap. That's 20 minutes of his 4 hours. He's only allowed 3 hours and 40 minutes now. I better keep a tally.
Amy
Friday, June 09, 2006
Ahead with Horses Fun Day!
Hello All,
I should have posted this a LONG time ago. BUT, if you aren't doing anything Sunday and feel like driving to Sun Valley to see some kids on horses, come to theAhead with Horses Fun Day The address is 9311 DEL ARROYO DRIVE, SUN VALLEY, CALIFORNIA 91352. You'll have to park down at the school and then bus up because of the number of people that come. But it's going to be a blast!
Let me tell you about Ahead with Horses, which has a link on the right sidebar. They are an AMAZING organization. Soren rides a horse once a week at Ahead with Horses. It's a form of physical therapy. The theory is that, for children like Soren that don't walk, getting the horses movement into their body helps them connect with that movement. Then, for more able bodied kids, it helps them with balance. I've seen kids standing on the horses doing "tricks." It's really cool.
Ahead with Horses helps kids with varying disabilities--kids like Soren, kids with CP, kids with ADHD. They run the gammut.
So, if you want to come to the Fun Day on Sunday, it starts at 11:00. Soren will be in a presentation where he rides a horse at 1:00. There's food, games, and general merriment. I have FREE tickets if you want them. If you want to pay at the door, it's $12 for adults and $6 for kids.
If you just want to donate to this amazing organization (I know, all I do is ask for money), clickhere
I'll post pictures of Soren's ride!
Amy
I should have posted this a LONG time ago. BUT, if you aren't doing anything Sunday and feel like driving to Sun Valley to see some kids on horses, come to the
Let me tell you about Ahead with Horses, which has a link on the right sidebar. They are an AMAZING organization. Soren rides a horse once a week at Ahead with Horses. It's a form of physical therapy. The theory is that, for children like Soren that don't walk, getting the horses movement into their body helps them connect with that movement. Then, for more able bodied kids, it helps them with balance. I've seen kids standing on the horses doing "tricks." It's really cool.
Ahead with Horses helps kids with varying disabilities--kids like Soren, kids with CP, kids with ADHD. They run the gammut.
So, if you want to come to the Fun Day on Sunday, it starts at 11:00. Soren will be in a presentation where he rides a horse at 1:00. There's food, games, and general merriment. I have FREE tickets if you want them. If you want to pay at the door, it's $12 for adults and $6 for kids.
If you just want to donate to this amazing organization (I know, all I do is ask for money), click
I'll post pictures of Soren's ride!
Amy
Saturday, June 03, 2006
People Helping People
Are the luckiest people in the world. And most often, this is merely through words. I have sent Soren's message out to many, many people. To my family. To my closest friends. To friends I have not spoken to in 15 to 20 years. Yet all I hear is kindness. And those words of kindness help me get through the day.
We have a tradition at our house of Friday Pizza and Movie Night. It originated from my not wanting to cook on Friday. And pizza being Moira's favorite food. Then we added wanting to see friends and the ease of having pizza. When kids come over, they eat pizza and watch a movie. The grown-ups eat pizza and catch-up. So we've had some friends over, some delicious pizza, some fun movies, and some great conversation.
This Friday, we were treated to Friday Pizza and Movie Night at our friends the Savinos. Delicious pizza. Wonderful conversation. And while Moira played with Chris and Beth's lovely boys, Vinnie and Nicky, Chris and Beth got to witness Soren's amazing progress. This helped Aaron and I see how far Soren had come.
And then there have been my friends from college (Oxy) and high school (Chaminade). On this coming Saturday, I will be having my 15th college reunion. Aaron and I are having an Oxy Theater Reunion at our house, so people are finding out about our travails with Soren. I have gotten such wonderful words of encouragement, it's amazing.
I also wanted to inform my high school classmates about Soren's condition as well. I think people should be honest and up front about the struggles in their lives. Afterall, most people have them. And I have gotten such wonderful emails from people. People that I haven't spoken to in years. People that are also struggling with their own, life-altering issues. I want to thank them for writing to me to give me encouragement. And I hope, in return, I have given them encouragement as well. Because, in the end, that's what it's all about.
It's about helping people. Through our words. Through our kindness. Those things can take people through to the next day. They can give others hope when they feel hopeless, which I know, I so often do. But the words help. So I thank you all for them. For the words. They really make a difference. So...
Thank you,
Amy
We have a tradition at our house of Friday Pizza and Movie Night. It originated from my not wanting to cook on Friday. And pizza being Moira's favorite food. Then we added wanting to see friends and the ease of having pizza. When kids come over, they eat pizza and watch a movie. The grown-ups eat pizza and catch-up. So we've had some friends over, some delicious pizza, some fun movies, and some great conversation.
This Friday, we were treated to Friday Pizza and Movie Night at our friends the Savinos. Delicious pizza. Wonderful conversation. And while Moira played with Chris and Beth's lovely boys, Vinnie and Nicky, Chris and Beth got to witness Soren's amazing progress. This helped Aaron and I see how far Soren had come.
And then there have been my friends from college (Oxy) and high school (Chaminade). On this coming Saturday, I will be having my 15th college reunion. Aaron and I are having an Oxy Theater Reunion at our house, so people are finding out about our travails with Soren. I have gotten such wonderful words of encouragement, it's amazing.
I also wanted to inform my high school classmates about Soren's condition as well. I think people should be honest and up front about the struggles in their lives. Afterall, most people have them. And I have gotten such wonderful emails from people. People that I haven't spoken to in years. People that are also struggling with their own, life-altering issues. I want to thank them for writing to me to give me encouragement. And I hope, in return, I have given them encouragement as well. Because, in the end, that's what it's all about.
It's about helping people. Through our words. Through our kindness. Those things can take people through to the next day. They can give others hope when they feel hopeless, which I know, I so often do. But the words help. So I thank you all for them. For the words. They really make a difference. So...
Thank you,
Amy
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