6 Month Mark!

Soren has officially been seizure-free of Tonic-Clonic seizures for 6 months! The fact that this milestone fell right around Christmas was great and the best gift we could ever ask for.

Christmas Day with Soren was really fun. Though he really doesn't seem to get the whole present thing, he loves when we are all together. He is full of smiles and wiggles. He got lots of vibrating toys this year which he's found interesting--lots of eyebrow raises. He also got bongo drums from us and drumming music that we hope he grows to enjoy. And then he had some good snuggle time with Aaron, a present both of them like.

So here's to Soren going into the New Year tonic-clonic seizure free!

Amy

Absence

This is not about my absence in posting. This is about Absence (pronounced in the French "Ab-sance") seizures.

The old-fashioned term for an Absence seizure is Petit Mal (as opposed to Grand Mal).

However, for me, an Absence seizure is so petit, comparing to grand is, well, not comparable.

In an Absence seizure, the person stares off into space for any number of seconds and then returns to the scene as if nothing happened. I originally witnessed this in a neurologist's office when I was speaking with a man about Beatles music. Suddenly he stopped, paused, stared into space for a few seconds, and then came back, continuing the conversation as if nothing had happened.

Soren has been having Absence seizures recently. Now he has had these before. But compared to his Infantile Spasms or Tonic-Clonics (Grand Mal), Absence were nothing to write home about. They actually mainly happened when I was weaning him off of Zonegran the fist time.

Now I am weaning him off again. And he is having them again. Now, I would love to blame the Absence on the wean. However, I noticed the first Absence the first night of his wean. Which means it was before any weaning actually took effect. (in other words, plenty of the drug was in his body)

But since then, he's had a number of Absence seizures. They are quick and relatively painless. I mean, they are a bummer to see and freak us out. But he comes back within 2 seconds and it's as if nothing has happened.

I am hoping that, while the initial Absence were not "drug-weaning" related, that the subsequent ones will subside once the wean is finished.

We'll see. He's still a perky, happy boy who hasn't had any tonic-clonics since June (knock wood).

But I'll keep you updated.

Amy

Long Time!

Sorry for my lapse again in posting. I was doing a big, time-consuming job and fell off my blogging duties.

Soren had a great, seizure-free Thanksgiving. Now that's something to be thankful for!

Since I last wrote, Soren had a neurologist appointment. Soren has remained tonic-clonic seizure-free (to the best of our knowledge) since starting the Clobazam on June 21st. So Dr. Shields suggested that we remove one of the other drugs (Zonegran or Lamictal). Aaron and I were a little nervous about this, because why mess with success. But we decided to start weaning Zonegran, taking it really slow. So instead of dropping out one pill a week, we're dropping it out every 2 weeks. If all goes well, he'll be off Zonegran in 11 weeks.

Meanwhile, Soren toughed his way through another cold. This time he lost his voice and had a nasty cough. But he's the funniest sick kid. I kept hearing him making his sad, hoarse sound as I was working. But whenever I looked at him, he was smiling and the sound was him trying to laugh.

He's doing well with his new intensive Physical Therapy, though he hates working so hard (who doesn't?). And we had an assessment for Music Therapy which was really cool. The therapist was trying to get Soren to play peek-a-boo, which Soren has absolutely no interest in. But then he heard a piano in the next room and perked up. We went over to the piano in our room and started playing, my hands over Soren's hands. He loved it! Some smiles and giggles. Very cool.

That's it. I hope to update sooner next time!

Amy

Epilepsy Brainstorm Summit

Last Saturday, I (Aaron) attended the Epilepsy Brainstorm Summit organized by the

Epilepsy Foundation of Greater Los Angeles

In spite of major technical issues and speakers having to sub for other speakers because of the fires, it was an excellent conference. I wanted to share some highlights with you:

-MOST IMPORTANT! There was a detailed presentation warning about the dangers of switching between brand and generics AEDs. In a nutshell, the drug's effect on the patient will differ from brand to generic and from generic to generic depending on the individual manufacturer of the generic. Pay attention to exactly what your pharmacy gives you. Talk to your doctor. This could be the difference between seizure control and not. The Epilepsy Foundation actually has an official statement explaining how epilepsy reacts to drugs differently than other diseases. This form can be sent to insurances and pharmacies expressing the necessity to keep AEDs consistent or to have them JUST DISPENSE BRAND, NOT GENERIC!

-School nurses can train unlicensed staff (teachers, aides, etc.) to administer Diastat. The California Dept. of Education has ruled this. So don't take guff during IEPs. They handed out paperwork to back this up.

-As many folks know, seizures take a tremendous toll not only on the brain, but on the body as a whole, in particular the lungs and heart. Effects include irregular heartbeats and asphyxia. Doctors have known for awhile that Omega 3 is good for the heart. Now there is a study underway to look at Omega 3's effect on the hearts of people with epilepsy. Hopefully it will show that the Omega 3 strengthens the heart cells. Meanwhile Soren is going to be switched to Omega 3 eggs. It can't hurt and hopefully will help.

-Get a special needs trust for your kid. Put your house in a trust to avoid probate. We have the name of a couple of lawyers who handle this.

All four epilepsy centers in LA (UCLA, USC, Huntington, and CHLA) have various studies and projects underway. Some very bright minds are working on cures. Let's continue to hope.

These are just a few tidbits from the day. I would encourage everyone to attend next year. It really is worth it.

On the home front, Amy and are looking into new ways to bathe Soren. He is quite long and getting quite heavy so bending over the bathtub is getting harder. We are looking for a bathing system. (Cause we need more medical equipment in our house.) If anyone has any suggestions or experiences, good or bad, please tell us. We will keep you informed of our progress.

Aaron

Sign the Epilepsy Awareness Petition!

As all of you know, our son Soren suffers from a debilitating form of Epilepsy. One of the tough things about Epilepsy is that people in the general public know so little about it. It is a disease that many either never think about or think is easily controlled by medication.

Sadly, only 70% of those with Epilepsy have seizure control. That leaves 30% suffering from seizures and the after effects of those seizures. 30% searching for the right medication and dealing with the side effects of those meds.

It is a disease with a terrible stigma. It is a disease that can be completely debilitating.

We need to raise awareness of Epilepsy. It doesn’t get the press that many diseases do. But it’s time to change that. You can help. And all it will cost you is a little time. November is Epilepsy Awareness Month and The Epilepsy Foundation needs your help! All I’m asking is that you go to

Epilepsy Petition

and sign!

The Epilepsy Foundation’s goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message!

Collecting signatures is a great way to raise epilepsy awareness. The more we talk about Epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Sign and help make a difference!

Sign for Soren!

Thursdays

Recently Thursdays are a strangely contemplative for me. At least for about 10 minutes. On Thursdays I pick Soren up early from school to take him to Feeding Therapy. After we get home, we walk to school to pick up Moira. This is where I get contemplative.

Soren turned 5 this year. The year of kindergarten. If Soren was a typical kid, he would be going to kindergarten at Moira's school. Lots of my fellow moms have daughters Soren's age that are now attending kindergarten in these classes. I've seen them grow up through the years, but never really compared them to Soren.

But now when Soren and I go to pick up Moira, I see these lovely girls running about. I see that they look at Soren slightly confused. And I think of how it should have been. When Soren and I came to pick up Moira, those girls should have been delighted to see their friend Soren. I'm sure some of them would already have crushes on him because he's quite a handsome fellow. He might play with them happily. Or he might be shy, not wanting to hang around with the girls. Or he might have his own group of buddies to run around and be boyish with.

So I get a little sad. I think of what could have--should have--been. Then Moira shows up, we head home, and I forget about it all. Mostly. Until the next Thursday.

Amy

BUS-TED

We have had many bus drivers since Soren started riding the bus two years ago. Our first was our best. His name is Phil and he was a seasoned driver. He showed up on time, he was friendly, and he really liked Soren. He liked him so much he stuck with Soren's route through that first summer even though he could have been moved to an easier one.

But the last September, Phil was moved to another route. Still he checks on Soren every time he's at the school. They are buds. So we got a new driver. Actually we probably had a number of them until we got Ebony. Ebony was sweet. She loved to hear Soren's laugh when she drove, which for some reason he did often when he was with her. She watched as our ramp was being built, anxious to see it finished. Loading Soren up was much more difficult before the ramp. She was also looking forward to the red curb because people were parking into my driveway space making it really hard for Ebony to get the bus in. But just as the ramp was finished and the curb was being painted, Ebony moved back to Ohio due to the economics of L.A.

Next we got Mr. Grouchy. Now I don't know Mr. Grouchy's name because he never told me. He was clearly bitter about being a bus driver and let it show. I could barely get a hello from him and I'm a friendly gal. When he returned to pick Soren up after Spring Break, I asked if he had a nice vacation. He grumbled at me quite angrily that he didn't have a break--he had to work--as if this was my fault.

Mr. Grouchy trained a number of people to try and take over the route. First there was Mr. Dimbulb. Mr. Dimbulb had a tendency to trip over the bus lift as he was backing Soren onto it. Often he couldn't work the lift because he had trouble maneuvering the buttons while using his reading glasses.

The first day Mr. Dimbulb was on his own, without Mr. Grouchy, he showed up 15 minutes early. He was lucky I was ready with Soren because, had it been bath day, I wouldn't have been. I told him he was REALLY early. I tried to tell him that, while this was fine, he had to tell me BEFORE he showed up early. He acted like he couldn't understand my English. He then tried to tell me that this time worked better for him--that he was changing the schedule. As he left, I really questioned sending Soren off on the bus with him. I called the bus dispatch to tell them about my interaction, asking if they could find someone who spoke Spanish to make it clear that he needs to tell me if he's changing the schedule. The folks there told me 1) That he's not allowed to change the schedule and 2) He speaks perfectly good English. He couldn't have gotten the job without that. So he was totally hosing me pretending he couldn't understand or talk to me!

That afternoon he was LATE. Really, really, really late. So late I was freaking out fearing that I had made the worst mistake of my life letting him take Soren that morning. I called dispatch to see what was happening. Turns out the bus lift broke down and then had to get him a new bus with one that worked (would have been nice if they called). Hearing this I was pretty confident that the lift was just fine. I had seen Mr. Dimbulb fail to work that lift so many times I figured he just thought he broke it. He finally showed up with Soren, safe and sound.

The next morning Mr. Grouchy was back driving the bus. I asked what happened to Mr. Dimbulb. Mr. Grouchy said he was reassigned. Yeah, right.

Next we had a young gal who was nice enough and showed up on time more or less. Whenever Mr. Grouchy had to substitute for her, I got the feeling he didn't like her. She was gone when summer school began and Mr. Grouchy became our driver for the summer. That was a long, grouchy summer.

This fall, a nice guy--let's call him Mr. Nice Guy--showed up to take over Soren's route in a big bus. The first day he was late. But every day after that he showed up on time and dropped Soren off by 3:00. He was a seasoned pro, he had a good sense of humor, and he liked Soren. I was really happy with this change.

But good things just don't last in the bus driving world. Last week Mr. Nice Guy was training another new gal to take over Soren's route. She drives a small bus. She's also very nice. But, being new, she is doing everything VERY SLOWLY. She's not on time with pick-up or drop-off. Once she gets Soren on the bus it takes forever for him to get his chair tied down. And when she drops him off, we're in the house a good 5 minutes before she finally leaves.

The glorious part about this new bus driver happened yesterday. As I mentioned in my previous post, we had 5 feet of our curb painted red so that nobody would park there. This way the bus would have room to pull in and load up Soren. Well, yesterday some joker dropping off his kid at Moira's school decided to park not only in the red all the way to the edge. I thought of going out and explaining the situation, asking him to kindly move his car. But I just wasn't in the mood to get yelled at or had eyes rolled at me.

Well, while he was gone, the bus pulled up to load up Soren. The way she had to pull up totally blocked this car from getting out. I took Soren, the New Gal got him on the bus, and then the guy returned to his car.

And I just sat at my window and watched. And smiled. The clock was ticking. I don't know what the New Gal was doing. She had to be tying Soren's chair down with ropes and chains and belts. That bus was parked there for a good 5 to 7 minutes. And that guy in the car was trapped. It was so satisfying. He had nobody to blame but himself. His eagerness to do something quickly, my red-painted curb be damned, only cost him a bucket of time. I was never so happy to have a driver move so slowly.

The lack of motion was poetry in motion.

Amy

Eye Sight Update

I took Soren to his neuro-ophthalmologist today and we got a really good report. Dr. Borchert was really impressed with the progress that Soren, overall, is making. He noted that he like a different kid compared to 6 months ago. Much more alert and not fighting him. He was also impressed that Soren actually took interest in watching TV, something that has developed quite recently.

On the eye front, I told Dr. Borchert that we've noticed Soren looking at us from a distance more. However when we bring him close, he loses interest. We thought he might need glasses for this. But after checking Soren, Dr. Borchert said that it doesn't seem that Soren needs glasses. Instead, he thinks that Soren's cortical visual impairment is causing the problem.

In basic terms, we all have blind spots in our vision. Due to Soren's seizures (and possibly one of his previous meds), he has more blind spots than usual. So, from afar, he might be able to see things better because he can see through the holes. But up close, things may get blocked.

The good news is, these holes can fix themselves as Soren continues not to seize and things start working better in his brain.

The bad news is, we think Soren had one of his night/waking seizures this morning. Aaron heard him making noise and just thought he was talking in his sleep. But when we went to get him up, he had that same old stiffness that's been gone for over 3 months. Now, his PT sessions have been extra rough and I know they've been stretching him really hard. But putting the noise Aaron heard and the pain together seems to point to more seizures. And while this is a bummer, at least he didn't continue them into the day. So we're going to watch this and see about increasing his dose of Clobazam if they continue.

Amy

Amy and the ADA

I've been meaning to write about this for a while, but have always ended up writing about something else. I never thought I would be making use of the Americans with Disabilities Act, but use it I have and with good turn out.

We live close enough to walk to Moira's school. The trouble was, when walking with Soren, it was tricky to get across the street. Where the crosswalk is, there was a very high curb. High for the kids walking. Even a little high for my short little legs. So when I walked Mo to school with Soren, we would have to 4-By it off the curb. This was quite hard in Soren's old wheelchair/stroller. So on off-hours at school, I would not use the crosswalk and would zip Soren and I across from one driveway to the other. This was kind of dangerous because the street is a busy one. I was even given a finger wagging by the school secretary one time when I did this.

So, one day I was picking up Moira and came across another mom who was walking her son in a typical stroller. She too had to 4-By it and commented on how much easier this would be if there was a slope instead of a curb. I knew, with Soren's disability, I could actually get something done about this and help everyone crossing the street to get to or from school.

I did a little web search and found the ADA person to call in our city. I left a message stating the situation. Mike called me back the next day with the most sincere voice and earnest interest in getting this situation solved. Within a week, workers from the city were marking up the sidewalk in preparation for what is officially known as a "curb cut." Mind you, I called about this in around October of last year. During Christmas break of last year, the workers came and, by the time school was back in session, the curb cut was done and crossing the street was easier for everyone. Especially for me when we got Soren's new heavy-duty wheelchair.

The second issue came up regarding Soren's bus pick-up. We live close enough to the school that people who are dropping off or picking up their kids often block our driveway. On garbage day, people would even pull my trashcans up onto the curb and then park blocking the cans. It got to the point that I was having to police activity myself, yelling at parents who blocked my driveway. One time I came home during Kindergarten pick-up and was totally blocked. So I just sat there waiting, blocking the street, until the woman returned with her child. What amazes me is how innocent people act, as if they didn't know it was a driveway to someone's house. Or the people who actually get mad at me for calling them out (and I'm always polite).

Now, I'm sure parents did this since we originally moved in. However, I never knew about it because I worked during the day at an office. But now I freelance from home. And I have to get Soren onto the bus in the morning and off of it in the afternoon. This is decidedly hard when cars are blocking my driveway where the bus needs to pull to the side.

So once again I called Mike to see if I could have a Blue Curb painted for handicap access only. My request was forwarded to the right department and soon I got a letter of refusal--our city no longer did Blue Curbs. I got on the horn and tried to find out if this was legal according to the ADA. Turned out that lots of cities don't even have blue curbs. So I called Mike again and explained the situation more. He helped negotiate 5 feet of red, no-parking on our side of the driveway (which we share with our neighbors). This way the bus--a small bus at that time--could pull in without issue.

Now for the most part, people behave and don't block the red zone. But not always. And the universe is getting its sweet revenge on those not following the rules because now, instead of riding a small bus, Soren's bus is HUGE! It can't pull over at all due to all the cars. So it just blocks the street. I just smile and get Soren on and off the bus as quickly as I can.

But I must say that the city's response to both issues were quite quick and painless. We are really lucky to have the ADA!

Amy

Happy 100!

Soren has been tonic-clonic free for 100 days! Yahoo!

In other news, we had his 3rd IEP (Individualized Education Plan) earlier this month. This is where we sit down with his teachers and therapists to see how Soren has progressed through the year and what goals we should have for the next year. I've written before that this is a big meeting where big decisions are made. This one went even smoother than last year's. Soren is going to continue getting the same services (PT, OT, Vision, and Speech Therapies) from the school or at off-site clinics.

One big change was that for one of Soren's PT sessions, we are going to an intensive therapy clinic called Joy for Kids. There Joy, the therapist, offers Therasuit therapy using a Universal Exercise Unit. We did an 3 week intensive of this 2 years ago and Soren made great progress. Joy has a contract with Soren's school district, so we decided to change his hour of school-based therapy to Joy's clinic. It means I have to drive Soren (he's taken to his other PT/OT session on the bus), but we think it's totally going to be worth it. He really needs this extra challenge to kick things up.

And with being seizure-free we have high hopes for this next school year!

Amy

Happy 5th Birthday, Soren!

Soren is 5 years old today! We celebrated this weekend by going to Aaron's hometown of Enumclaw for a joint birthday with his Grandma Kris (whose birthday is the day before). The trip was great. Soren traveled wonderfully as usual (he was actually quite excited on the plane both over and back).

And his gift to himself and all of us for his birthday was 3 Months of Seizure Freedom!!!

Here's hoping this will the best, seizure-free year ever!

Amy

Slacking in My Blogging Duties!

Sorry about my slacking off. As usual, things have been busy! First of all, we had the Triathlon and Team Soren did really well despite some hardships. The good news is, everyone finished safely! Eric Germansky, our lone, solo triathlete did a great job in the swim, bike, and run. Our women's relay actually came in second of all the women's relay teams. Rock on, ladies! And our men's team also finished well despite Keith getting not one, but two flat tires on the ride! But he got those fixed and powered on! The Team Soren Support Team was at the L.A. Live finish in downtown cheering our team on. It was fantastic!

Later that day, we had a party/silent auction/fundraiser honoring our athletes and celebrating Team Soren's success. A good time was had by all.

But my current great news is that Soren has now gone 86 days without a seizure. And he survived a second cold without any breakthrough seizures. He woke up stuffy on Friday with no precursor or seizures the day before. And none the entire weekend. We were a little nervous because, for the first time in almost a year, Aaron and I went away without the kids. We did a quick 27 hour trip to the Bay Area. I was a little nervous when Soren woke with that cold on Friday. But since he didn't have any seizures that day and his respite workers know how to give the Diastat, I felt okay about leaving. And Soren came through with flying colors, which made our trip all the more enjoyable!

I just gotta say, I love Clobazam!

Amy

Go Team Soren!

Tomorrow is the Los Angeles Triathlon and Team Soren will be racing for our boy! Team Soren consists of Eric Germansky, who will be doing the entire triathlon, and two relay tri-teams: Chris Webb, Keith Anyon, and Ezra Weisz on our male team and Karen Wilson,
Kristen Van Rooyen, and Susan Reedy on our female team. The lovely Julie Miller had to step down from being on that team due to an injured back. Please think good thoughts for her and for all the athletes to have a good, safe, and successful race!

The Team Soren Support Team will be decked out in our official orange Team Soren T-shirts. They are awesome and I'll be sure to take pictures to show us wearing our colors!

It's not too late to donate! Please click on the donation button to your right and support Team Soren!

Go Team Soren!

Amy

Been Busy!

Sorry I haven't updated in a bit. Things have been crazy-busy with the kids finishing up their summer vacation. Soren is done with summer school and has 3 weeks off before the new school year begins. So now he's in summer camp from 9-12 at his therapy center. He was a little grumpy the first day of last week. We think he may have thought he had to do therapy there. Once he realized it was camp, he had a good time.

And the update on his cold/seizure control is that he had this lousy cold for about a week and had no visible seizures!

We started the Clobazam 2 months ago this Thursday. That day (June 21st) was the last time I had to give him Diastat for his tonic-clonic seizures. We also noted that we didn't hear Soren have any night time seizures during our weekend in San Diego when we all shared a room. He does wake up some mornings with a little stiffness, but we really think this is because he's getting his legs into funny positions that he can't get himself out of.

Soren is alert, happy, a laughing a lot. People are really noticing the difference! Now if the FDA would just approve this amazing drug!

Amy

Unprecedented

Soren woke up this morning very cranky. When I was giving him his milk, I noticed his nose was stuffy. I was afraid he might have a cold. Then when I stripped him down for his bath, I noticed he was a little warm. Taking his temp, it came to 100.9. Yep. Sick.

What is unprecedented is that his cold was not foreshadowed with a round of seizures. In all of Soren's life, when his defenses are down (or in the process of getting knocked down) he has seizures. We always freak, worrying why he's having the seizures, and then the next day he'll be sick.

But yesterday he was fine. He was happy. He went to school. No seizures. Just the cold today. It's gotta be the Clobazam. And I'm crossing my fingers that, for the first time, Soren has a cold--and just a cold--like any other kid.

Amy

Team Soren Blog!

Team Soren

now officially has its own blog! There you can read about updates on Team Soren's training for the L.A. Triathlon on Sunday, September 7th.

You can also donate to Team Soren by clicking on the DONATE button either on that blog or here on Soren's blog!

You will also see our cool Team Soren logo! Check it out!

Amy

Capper-Friendly Comic Con

First, let me explain the term "cappers." I heard a wheelchair bound woman use it once, talking about handicap accessible parking, calling it "capper parking" and referring to herself as a capper. I liked the simplicity and "coolness" of it.

Last weekend we all went to the San Diego Comic Con. The last time we went was 2 years ago, when Soren was 2 going on 3. While we knew about his disabilities, he was merely in a typical stroller, not a wheelchair. We had gone through the Registration Line like everyone else, is always long and annoying. Back then, we didn't even look for any sort of disabled help. I guess we weren't as immersed in special needs as we are now.

So when we went to register Friday morning, we gave ourselves a full hour to stand in line. As we headed to the Con, there were swarms of people. We actually passed the Disabled Services and kept walking, figuring we would go there if we needed something later. But when we tried to follow the able-bodied crowd to registration (which is up a LONG escalator), we were quickly directed back to Disabled Services. There we found the Land of the Comic Con Disabled. We gave them the staff our information and they went upstairs and got our passes. While we waited, we visited and chatted with other disabled folks. Within 20 minutes (probably less) we had our passes. They explained that if we wanted to go to panels, there were special places for wheelchairs and gave us little cards to put on our chairs so we could sit with Soren.

So we were ready to go. The only problem was, we still had 40 minutes to kill before the Con opened! If we'd only known! When the Con doors did open, they had the disabled folks get a "rolling" start before the able-bodied folks stampeded in.

We then went to get into a Powerpuff Girls panel. There was a HUGE line. I thought we were doomed. Then I remembered the special needs special spots. We were quickly brought in and they found a place where Soren and all of us could watch together. (I must admit, I did feel a bit guilty about this. I mean, all those folks were standing in line! For the next panels, I went alone and showed up early.)

It's rare that I find people with disabilities needs really catered to. I was really surprised and impressed by how the staff at Comic Con accommodated all of the cappers.

Amy

Quick Update

Hello!

Just wanted to update everyone before the big 4th of July weekend. The art opening went off very nicely last night. A few pieces sold. And the art will be up for the next month at Cartoon Network if you want to swing by and buy something. Thanks to everyone Cartoon Network for all their help in hanging the show and for throwing the party!

On Saturday, Soren will be up to a therapeutic dose of Clobazam. So far so good. He's not extra loopy or anything. Now we just have to see if it stops the seizures.

Also on Saturday, my brother Patrick will be getting married and Soren will be the ring bearer. Aaron will stroll Soren down the aisle where the rings will be handed off to me (my sister and I are standing up for Patrick). I must admit that I am both excited and nervous about Soren's ring bearing duties. Will he be awake for it or will he just shut down? Will he be happy and chatty and disturb the ceremony? Or will he be angry like he was at the art opening last night? As with everything, it's unpredictable. But I'll send an update after the event! (and hopefully pictures too)

Amy

Clobazam

When last I wrote about discovering Soren's night seizures (which I now have the song "Night Fever" by the Bee Gees in my head but instead I sing, "Night Seizures, Night Seizures. We know how to do it.") I noted that we were looking into starting Soren on Clobazam and possibly weaning him off another drug.

Well, we didn't start Soren on the Clobazam yet because, though we had a little secret stash, we found out that getting more was a little more involved than expected. Since it is not FDA approved, we not only had to get a prescription but also had to get a letter of necessity. And since Soren's doctor was out of town, there was going to be a delay. Then that information had to get to the pharmacy in New York that is approved to distribute it. Then I had to call the pharmacy and order the drug, since we have to pay out-of-pocket. And then it had to be sent to UCLA and then to us! Whew! So we didn't want to start Soren on a new drug and then run out of it before we had our refill. The good news is that we got the Clobazam yesterday and will start bringing him onto it tonight.

I actually very briefly considered not doing this--or at least pausing. Soren's legs haven't seemed as painful the past couple weeks when he wakes up. And this past week he's been really active. Usually when we put him to bed, he stays in one spot, on his back all night. But recently he's been moving all over the bed, sleeping on his side, and even sleeping on his belly. It's been great to see the activity. And it's been a relief that he's been on his back less since we worry about skin breakdown.

But my thought to pause was completely obliterated this morning. Soren, who went to bed a little later than usual, was sleeping-in rather late. At first I thought nothing of it but then, just as I was beginning to worry that something else might be up, he had a big tonic-clonic. I then realized that he had probably had a few others earlier this morning, thus the late sleeping. When he finally woke up, I got his meds into him and tried to give him milk. But he seized again. I gave him Diastat and now his down for the count. So the Clobazam will begin tonight. Hopefully we will get the results we're looking for (i.e. no seizures).

As a side note, we did not end up weaning either of Soren's other meds. I asked and got a resounding NO (or it at least seemed resounding in the email since all it said was NO). We see Soren's neurologist in a month and will be on the full dose of Clobazam by then. We'll discuss cutting out another drug at that point.

I'll update you as things continue.

Amy

Sign o' the Times

As I've noted before, Soren attends an all special needs school. We love this school--the teachers, the aids, the secretary, the nurse, the principal. They work Soren hard and clearly care for him and all the other kids.

But every time I went to pick Soren up for Feeding Therapy, I was met with this sign...

There's one as you drive in and one as you drive out, hitting you coming and going. Now, this is a common sign which simply means, "Please drive slowly, there are children present." But in the context of a school for children with special needs, it seemed like an advertisement. "SLOW CHILDREN! GET YOUR SLOW CHILDREN HERE!" Every time I drove in I was like, "Aw, come on! Really?"

I voiced this to Aaron who took action. At Soren's Open House, we approached the principal and asked if we could replace the Slow Children sign with a Caution Children sign. We wanted to include a figure that was wheelchair bound. We replaced the other sign with this...

I know it may seem like a little thing, but now when I drive into school, I smile.

Amy

LA Triathlon! Join TEAM SOREN!

On Sunday, September 7th, our friend Eric is going to compete in the Los Angeles Triathlon. His goal for doing this event is to raise funds for Soren for another stem cell treatment. In addition to this, he and his wonderful wife Sue are going to throw an after-party/silent auction/rousing night of entertainment that is sure to be a blast!

We think it would be great to create Team Soren, pooling together anyone athletically inclined who is interested in doing the LA Triathlon and raising funds for Soren. The LA Triathlon offers the Sprint Distance - .6K swim, a 12 mile bike and a 5K run – and also the Olympic Distance - a1.2 K swim, 25 mile bike race and a 10K run.

If you have never done a Triathlon but always wanted to, this is your chance. We will provide you with a training schedule that will prepare you for the race as well as organizing a couple training clinics in which we will share great race tips and transition techniques.

Now, if you are interested in this, but are not up to running, cycling, and swimming, never fear! We are also putting together relay teams. So if you can run like the wind, but you can’t cycle for beans and/or the thought of swimming in the ocean makes your heart sink, we will match you up with folks who can.


But, to do this, WE NEED YOU to join Team Soren! “What do I get for joining Team Soren?” you ask. First of all, we will cover your entry fees. Secondly, we will provide you with a fantastic Team Soren shirt to race in.

We are also designing Team Soren shoes by Nike. Now, we can’t pay for these, but if you are interested in purchasing them as a team member, they will be available.

And lastly, you will get to come to the awesome after-party where you will be treated like a god for busting your butt and raising funds for Soren!

Also, by competing in the LA Triathlon, you will receive a Finishers Medal, a Tee Shirt and tons of other goodies. For more information, check out

The LA Triathlon Site

So if this sounds like something you really want to do—either the entire triathlon or just a portion—please email me at amykeatingrogers@pacbell.net. Please also feel free to email Eric Germansky at ericgerm@sbcglobal.net if you have any questions about the race.

Thanks!

Amy

Memorial Day Party

We've been going to the same Memorial Day Party for many years. It's thrown by a great family, the husband of which I used to work with, so it's a gathering of my former co-workers who have all become good friends. When the parties started out, some of us were married but none of us had kids. Now most of us are married and kids are running around all over the place. Now that we don't all work together, it's a chance to catch up, see how much everyone's kids have grown, and compliment each other on the fact that, despite our children growing, we all don't look a day older.

For me, it's also a chance to show how well Soren is doing. When he first started attending, he was not doing well at all. He had just started having seizures about 3 months before. He was floppy and we were very overwhelmed. But each year Soren came back, everyone would comment on his progress--more alert, better strength, moving more.

This year when we headed off, I was feeling a little sad, feeling like in the year that had passed, Soren hadn't really moved ahead much. I figured that, like the year before, we would sit on a blanket and I would either let him stretch out or sit him up figuring I would have to support him a lot. I was feeling rather sorry for him and myself (boy, I'm fun at parties, hunh?)

But when we sat down, I put him between my legs in "ring sitting" and then I sat back as Soren supported himself for a good 40 minutes to an hour! I was stunned. There was only one time when he toppled over onto my legs--and that was near the end when he was tired. I didn't need to touch him, I was not reminding him to hold his head up, and he just sat there like a big boy. I don't know if anyone else was impressed by his progress, but I was blown away by it.

Clearly I had not sat like this with him in a long, long time. So the credit for his progress doesn't go to me. It goes to Soren's therapists and his teachers. They push that boy to the limit. I went to school the other day and Soren was sitting up against a wall--he was crumpled over, but I know when he was first seated there he was sitting up. And I know he could pull himself up if he wanted. His teachers put him in this position a lot--this way he can't fall back and rolling forward onto a soft mat is quite harmless. And he can sit there on his own for a long time!

Oh, and the credit also goes to Soren. Despite hating to work, he works very, very hard. He may not like it, but he does it, and he's changing because of it.

But back to the party. It was great to see everyone's kids running around. Sometimes this makes me sad because Soren isn't running with them. But I was so happy with what he was doing, I didn't think about what I wished he was doing.

That day one of my friend's sons asked his mom a very good question about Soren. He asked how much fun Soren has in a day. He was very concerned about this. She told him that while Soren may not have fun like other kids, when he's not having fun, he lets people know it (and boy is that true). But Soren was sitting there, looking around, observing as he does. He was outside with the breeze blowing and people laughing. Though he was sitting, he wasn't stressed about it. He was in the middle of the action, which he enjoys. So as fun goes, I think Soren was enjoying his version of it. But it was a good question that really made me think.

Amy

A Disturbing Discovery

About 3 or 4 months ago, Soren started waking up with a lot of pain in his hips and legs. He would wince in pain and do these silent screams when we would try to stretch him out or pick him up. But once he was up, he was fine. He would kick his legs and become his happy self again. We had no idea what was causing the tightness and pain. I asked his teachers and therapists to keep an eye out for this as well but they hadn't noticed anything.

Then last month, one of his Physical Therapists noted Soren wincing when she was working his legs and hips. So I took him to his pediatrician who did X-rays and everything looked fine. He suggested doing blood tests but thought it actaully might be seizure-related. I thought this might be possible, but it seemed strange since he was only having seizures one or two days a month. And then he had gone that 40 days without anything but still had these morning aches and pains.

But then the other night at 2 am, Soren woke up hungry having not eaten well the day before due to the excessive heat. When I put him back to bed, he started doing this rhythmic facial contortion and body crunch--a seizure. Aaron and I then realized that he has probably been doing this at night, sight unseen, for these past months. Thus the 40 days we thought were seizure-free were merely daytime seizure-free, nighttime seizure-rific (that's not a technical term). The good thing, if there can be a good thing when it comes to seizures, is that Soren seems to recover from these better than other seizures. Still, no seizure is a good seizure.

So what to do? Well, we're going to do blood tests just to confirm there is nothing going on considering all the drugs we've pumped into this boy. Then we're going to work on pumping another drug in! We decided to finally try the Clobazam. I have a small stash of 40 pills provided by another parent. But to get more of this non-FDA approved drug, Soren's neurologist needs to write a letter of medical necessity (because it is a form of Valium) and a prescription. Then the one pharmacy in the US that is allowed to distributed this drug is given this info and sends the meds from New York to UCLA. They then send it to us.

This all may take 2-3 weeks because Soren's doctor is out of town. And I'm sure when he returns, he will be swamped with many requests. In the mean time, I'm checking if we can wean Soren off either the Zonegran or the Lamictal that he is now on.

I'll keep you updated.

Amy

The Comeback Kid

I just gotta say, Soren amazes me.

Sunday, he's got a fever, he throws up, and he has 3 seizures.

But then he sleeps. Like a log. Not a stir. It's what all of us should do when we're sick as hell. And he does it like an Olympic Champion. Soren is the Gold Medalist in Sleeping When Sick.

So then when he wakes up, he eases into drinking clear liquids. With his fever gone, the next day he's like a new boy. He can eat. He's perky. I make him do nothing the entire day and he actually seems a bit peeved, giving me looks like, "Seriously, Mom, I am so bored!"

By Tuesday he's back at school. When he got home, he was giggling his butt off. Today he was awake and happy, went to school, went to horse therapy. It's as if Sunday never happened.

When I put him to bed tonight, he was happy and healthy. That's my boy. He is the champion, my friends.

Amy

40 Days, But Not Counting

Soren made it a full 40 days without seizures as of this Saturday. But then on Sunday he woke up quite cranky and a bit warm. He had his milk and then proceeded to throw up everything in his tummy. Aaron got him into the bath where Soren had a 2 minute seizure. Thank goodness Aaron was right there to keep him safe.

Soren was conked out for most of the morning. When I checked his temperature, it was at 103. We worked the rest of the day to get it down, using Tylenol suppositories and oral Motrin once he was awake. In between that he had two more tonic-clonic seizures so I gave him Diastat. Finally around 4:00 he woke up and drank Pediasure, which he kept down. I got more of that and some chicken broth into him. His fever didn't break until 10 pm.

Today he stayed home with me and was both fever and seizure free. Still not that interested in eating, but I can't blame him. Otherwise he's been in good spirits, barely sleeping. So far none of us have gotten sick.

So our new count begins today, Cinco de Mayo (and Soren's great grandfather Art's birthday). Maybe we can make it to 50 days this time!

Amy

30 Days Seizure Free!

That's right! Soren has gone a full 30 days without a seizure. I'm in my "waiting for the other shoe to drop" mode, but still enjoying how happy and "with it" he's been lately.

Even more amazing to me is that in the middle of this seizure freedom, we had Spring Break. And we were all over the place. We drove to Scottsdale to see my sister, went to Disneyland with friends, went to the mountain cabin of other friends. All this travel and change of routine could have easily upset Soren's applecart. I was so excited driving home from the mountains last Sunday, but didn't announce our success until we were safely at home.

Speaking of Spring Break, we really had a great time (and I know part of that is that Soren didn't have any seizures). At my sister's we played in the pool. And though Soren wasn't happy with it at first, he eventually resigned and fell asleep. At Disneyland he did much of the same until he hit the Tiki Room. That kid LOVES the Tiki Room! He was perky for it at our last visit and we thought it was a coincidence. But he seriously had slept through most of the day (except lunch) but when when those birdies sang and flowers crooned, Soren listened and watched following the lights and sound. And he was happy in the mountains. This time he either slept in the warm sun or kicked on his blanket enjoying the breeze. It was great.

We also went to see Soren's neuro-ophthalmologist during break. This cracks me up because in the waiting room Soren was awake, alert, and chatting. I rolled him into the room and he looked around with a sly glint in his eye. The doctor turned around to look in his eyes, and Soren immediately began bobbing his head and falling asleep. The kid is aware, crafty, and a big stinker!

Amy

In Memory of a Beautiful Girl

Yesterday we got word that a little girl from our Epilepsy Support Group passed away last week. She had a horrible neurological condition called Batten's Disease. Only children are diagnosed with Batten's. It is fatal and most of them do not make it to 20 years old. This little girl was a typically developing child and then, I believe at 5 years old, starting having seizures. It took them a bit to get their diagnosis. And with that diagnosis, there is not much to be done.

However, this family did not give up and went to for stem cell treatments at least 2 if not 3 times. And they actually did some good. She had lost her ability to walk and regained it after one of her treatments. The problem is, Batten's is progressive, and she lost the ability again. They were actually supposed to be getting another treatment this weekend.

But 2 weeks ago, this lovely girl went into Status Epilepticus. This is when you start seizing and no medicine can stop it. That means that the fail safe of Diastat that we as parents hold onto like a lifeline, did not stop her seizures. So she went to the ER and was admitted into the PICU. When you get to this state, they try to put you into a medically induced coma to try and stop the seizures. But her seizures were persistent and they had to keep dropping her deeper and deeper into a coma. She finally passed away on March 25th. I believe she was only 10 years old.

Her parents said of her, "Even though she had a devastating and terminal illness, she never lost her spirit and retained many of her abilities until her untimely death."

The family had a wake yesterday at their house. Aaron and I decided, since we had our respite worker coming that evening anyhow, to go to the wake without the children. I didn't know how accessible the home was and I didn't know how Moira would take to this situation. I'm glad we made that decision. I was expected just a wake.

When we arrived there was a bag pipe player playing Amazing Grace. People were crowded into a little bedroom where the body was laid out traditionally in her bed in a beautiful dress, candles all around, and adorned with flowers. I was reminded of Frida Kahlo. Around the room were big pictures of her and her family smiling, laughing, enjoying life. It was overwhelming, heartbreaking, and moving.

I spoke to her mom and she talked about how we (parents of kids with Epilepsy) always assume that Diastat will work. That the other possibility is unimaginable. And if she'd really fully grasped that possibility, they may not have done half the things they did. In December they had gone to Utah and were at a farm that was miles from a hospital. Her daughter was having break through seizures at the time, but she thought it was normal, as we all do. They may not have taken that trip if she'd known what was going to happen only months later. But then she was glad she didn't know because they all had a wonderful time. A time she wouldn't trade in for anything.

I said that she was right to take that trip and not live in fear. We can't stop living life. Not taking that trip wouldn't have changed this outcome. It's hard, but we can't let the seizures rule our lives.

It was a beautiful gathering. It was hard to be there but it was important to be there. I'm just so sorry that we lost this little girl.

Please think of this family and send them your love. May they all find peace.

Amy

The Soren-Mobile!

The Soren-Mobile (as it was termed by my friend Alexx) was delivered last Thursday and has hit the streets!

And it is such a dream! I mean, the Honda Odyssey is a nice van to begin with. Then, to have it accessible for Soren--amazing!

Here you can see the ramp extended out from the bottom of the van. All I have to do is push a button to open the door, the van then begins to lower as the door pops open, and then the ramp comes out. Now we can go straight from the ramp into the van--no more painfully awkward transfers into the car seat!

Next you see the EZ Lock system.

We aim Soren's new chair for that lock and, under his chair, is a bolt that clicks in and locks. E-Z, as advertised!

Then I can spin the chair around, so Soren can face front.

And the other side door also opens with the push of a button, so when I get him in or am getting him out, there is an easy escape.

Because the entire center section is now devoid of seats, Moira gets the entire back bench, which she has made her own with pillows and toys.

Now there are some things I'm still getting used to. The driver and passenger seats sit a bit higher than my old van. Getting my short body into the car has resulted in some bruises, but I'll figure that out. Oh, I also got a nice bonk on my leg when I opened the ramp door, went to throw a bag in before loading Soren, and got whacked by the ramp extending out! Whoops!

If Soren's chair isn't locked in to the EZ lock, an alarm sounds. This is great! But if he's not in the car (thus, not locked in) it also sounds. So I have to hit a special button to turn this off. Next, there is a release button to unlock the chair to wheel it out. Again, EZ. But I have 5-8 seconds to move his chair forward or it relocks! Now that's some pressure!

But really, I LOVE THIS VAN! Soren and I went to run errands on Saturday and it made everything so much easier. We got in and out of the van 3 times with so much less drama than usual.

Now I just have to think of a side business to use the van for while Soren is at school. I mean, did you check out the space I have now? I could do deliveries. I could set up a massage table. Or maybe I'll just put my long board in there and go surfing. I need a little R&R.

Amy

Brief Seizure Update

Soren went an awesome 36 days without a seizure! It was fantastic. Last Saturday we went to Disneyland and Soren had a great time, smiling and laughing through most of the trip.

Then Monday before getting him off to school, he had a whopping 60 second tonic-clonic. Hoping this was the only one for the day, I sent him off to school. I then quickly ran all my errands fearing the call from school that would send me there to pick him up. Sure enough, at 10:30 school called. Soren had had another seizure and was too conked to continue school.

So I got him and brought him home, where he had a 3rd seizure. So I gave him the Diastat. Later I noticed Soren had a fever of 102. I got the fever down and kept him home Tuesday. There were no other signs of sickness so he went back to school Wednesday, but was rather pokey through the day and, actually, the rest of the week. But then I'd be rather pokey too if someone had put Valium up my tush.

This weekend he's back to his silly, chipper self. Hopefully we'll have another good long run without seizures and make it to 40 days!

Amy

Soren's DAFOs

DAFO stands for Dynamic Ankle Foot Orthoses. In other words a leg brace that supports the ankle and foot. For Soren this is very important because he is not a fan of freestanding (though word on the street is that he does it at school). But for him to stand properly, either in a stander or on his own, he needs to have his foot properly positioned. On his own, Soren would turn in his feet instead of planting them squarely on the ground. So his DAFOs put his foot at the right angle and give him the support he needs.

DAFOs are custom made to fit a child's foot and ankle. A mold is taken and the brace is then made with special padding that hits particular points for proper positioning. Soren's braces are made by a company called Cascade. When custom-making these braces, you get to pick out colors and ribbon details. And since Soren doesn't express his opinion on this, I have made the choices for his past 2 pairs of braces.

We got his first pair right after Soren turned 2. So, in my mind, Soren was still more of a baby. So I picked out green and cute dots for his details, appropriate for a little boy.

Well, when it was time for Soren's 2nd pair, he was a big boy of 4! Time to toughen-up that image, I thought. So check out Soren's cool new DAFOs.

Nobody's gonna mess with a kid rockin' these flames! These babies say, "I'm rough and ready to stand on my own!"

Amy

LOST

No, you haven't stumbled onto a blog about the ABC show "Lost," though I am a huge fan. I'm writing about the many people who have found me through Soren who sound so lost.

In the past two weeks I've been contacted by 6 different people I've never met before who have either found this blog by searching for information on Infantile Spasms or stem cells, found me through friends of friends, or approached me personally upon seeing Soren.

1) A family in Dallas whose daughter was recently diagnosed with Infantile Spasms.

2) The daughter of a co-worker of a mom from Mo's school.

3) A mom who saw Soren when we were out to lunch and was interested in his cool seating system.

4) A parent from Wisconsin whose son also has IS.

5) A "stranger" at Soren's horse therapy.

Now this last one was a doozy. The woman I met yesterday is the step-daughter of a man we met almost a year ago when we were up in Ventura for Mo's birthday. He approached me when he saw Soren and told me about his granddaughter with special needs. We had a few email exchanges. Then yesterday, Soren and I were at horse therapy and a new mom was there with her daughter. She heard Soren's name and then asked me, knowing that this sounded strange, if we'd met a man a year ago while we at the Pierpont Inn! Amazing!

And all these people have two things in common--a child with special needs and the feeling that they are the only ones in this situation. With each person that contacts me, I'm sad that we are all in this situation but I'm glad I'm there to talk or write to them.

There are so many families out there whose children are getting diagnosed with seizures or some other sort of ailment that will profoundly affect their ability to learn. Every state system is different. Systems are different within each state. It's all confusing. You don't know what to ask for for your child. You don't know what's too much or too little. As with any other big system, different people tell you different things. For those of us with little options, we're willing to try anything but don't know what works, what doesn't, and when to take a chance.

But thankfully, because of the internet, we can all chat with each other, share information, and assure one another that we're not alone. Aaron calls them our fellow travelers.

Well, fellow travelers, please continue to contact me and approach me and will tell you what I can about our journey with the Captain of our ship, Soren.

Amy

February Soren Update

Hello all,

Because I've been so busy with the fundraising stuff, I've been a bit neglect in giving actual updates on Soren. So here's the update!

Soren is doing well. The past couple weeks he's been smiling, "chatting," loving school, and enjoying the great outdoors (our backyard).

As I noted, the year started out rough with some bad days of seizures. But then he actually went 22 days without from January 11th to February 3rd! And I think he would have gone longer if he hadn't woken on the 3rd with a nasty cold and eye infection. Poor fella! Even still, he only had one tonic-clonic and one absence with a bit of jerking that day. All things considered, that's not bad for being sick.

So now we are on day 14 without seizures. Let's hope I'm not jinxing this by writing about it.

Oh, funny thing while Soren had his eye infection (well, funny to me, probably not to him). I had to put drops into his eyes every four hours. Well, if you try and pry Soren's eye open, he will clamp his eye down tight. So I started doing the sneak attack. He'd be innocently looking up and WHAM! I'd put a drop in his eye. The first couple times I did this he was just stunned. Then he started complaining about it saying, "Ma-MA!" completely offended. Finally, he just didn't trust me anymore and would close his eyes when I came near with the bottle. Smart kid.

Soren saw his neurologist earlier this month and we had two major questions--could Soren be in the Clobazam study and should we consider implanting the VNS. The first answer was No. Soren is not a candidate because he does not have what are known as drop seizures. From what I understand, drop seizures are when you seize and then lose muscle control, thus dropping you to the ground. In Soren's seizures (generalized tonic-clonic) he stiffens up and jerks.

However, his doctor did think that Clobazam was a good drug to try next. The trouble is, it's not currently FDA approved in the U.S. (thus the studies). The reason for this is that Clobazam is, to put it simply, a modified version of Valium, which is a controlled substance. However, there are still ways to get it, your insurance just doesn't pay for it. There's, of course, the internet. The other way is there is one pharmacy approved to sell it in New York. They get it from another country who then ships it to New York, the pharmacy (upon receiving a proper prescription) sends it to UCLA, UCLA sends it to the patient.

Currently we're pausing on starting this because, 1) Soren would then be on 3 AEDs, which we are not excited about, and 2) Soren may actually be doing well on his current levels of Lamictal and Zonegran. We increased the Zonegran on Jan. 1st. He had bad days on 1/9 and 1/11, but the new dosage might not have fully been in effect. And, as I noted above, he did quite well through the cold on this current dosage.

So, we wait for a "bad day." If he has one with no other extenuating circumstances having caused the seizures (illness, heat) then we will probably start the Clobazam. Then we would wait to see it's efficacy before removing one of the other drugs.

Ooh! In other big news. Our van is safely in Canoga Park! Why isn't it here at our house? Well, let me tell you. In preparation for the new van, wheelchair ramp, making our lives more accessible overhaul, we ordered Soren a new wheelchair. He is currently growing out of his wheelchair/stroller which has served us well for over 2 years. So we ordered the chair, a potty seat (how's that for optimism?), and a lift (to help me get him in and out of bed, up from the floor, and in and out of the tub). However, things have gone less than smoothly as far as billing insurance so we still do not have the chair.

The problem with getting the van when we don't have the chair is that the chair has to be fitted with a special bracket so it can be easily locked into the van when driving. We could have the bracket put on his current chair, but the chances of it fitting his new one are rather slim. Then outfitting the new chair with a bracket would cost an additional $500-$800!

So we are waiting. The van is safe and ours. The chair will be here soon. We're very appreciative for all this equipment, so we will just be patient. By March we are hoping to have both the new chair, the new van, and a far more accessible life!

But this week my Uncle Mike will finish building Soren's ramp at the front of our house! He started it last week and it's looking awesome. He'll be back tomorrow to finish it up over the next couple days! Sweet!

Amy

Still Want Some Art?

I've got lots! It's in my garage! All the stuff leftover from the Monkeyhouse show is with me and I'm (slowly) putting it up on eBay for sale. Slowly, slowly, slowly. I'm just learning and I clearly have a very poor learning curve.

BUT, if you want some art, just go to eBay and type in "4 Soren" (without the quotes) and all of his listings will come up. Currently, there are only 10 listings. But I'm working on getting the rest up this week (or in the coming weeks).

Currently, I'm not shipping because that's even more for me to learn and, as I mentioned above, I'm having issues with the whole "teaching an old dog new tricks" thing. So right now it's for pick up at Monkeyhouse. But if you REALLY want something and you sweet talk me, I may ship it to you.

And finally, as usual, all the money goes to the Talbert Family Foundation which in turn then comes to Soren--they don't take a cut. It all comes to him! And then it all goes to the VAN!!!

So, check out the art, see if you want something, and bid on it! There's a lot of cool stuff!

Amy

The Skinny on the Mini

The Mini Van, that is.

This is a big story, so get ready. But I'll spoil the ending by telling you now that it ends quite happily!

I'm not sure where to begin, so I'll begin at the beginning. In October of 2004, the lease on our old mini van was up. We decided that rather than go into another lease, we would buy a new 2005 Toyota Sienna. At this time, Soren was just over a year and we fully expected (hoped, prayed) that he would be walking in the next couple years.

Well, 2005 came and went and there was no walking. Same with 2006 and 2007. So as 2007 neared its end, we decided that we needed to convert our Sienna to make it wheelchair accessible. I had spoken to a variety of parents and been told that the state would only cover $10,000 of this. I was also told that this could cost between $20,000-$28,000.

When Mayra at Monkeyhouse contacted me in October about a fundraiser in January, we figured the timing was perfect. We would have a fundraiser to convert the van!

In January, just as the fundraiser was about to start, I contacted the Regional Center (the state agency for people with special needs) that Soren is with to begin the process to see how much they would cover. I was asked by them to get 3 bids from 3 vendors who specialize in converting vans and in selling already converted vans.

When I called these vendors, I told them that I needed to get a bid on converting my 2005 Sienna. And they told me it was too old!

I was stunned and bummed. Too old! But...but that's our NEW car! Aaron's still driving his 11 year old truck and we were hoping it would hold on a few more years. Suddenly we were in the market for a new or slightly used, already converted van, which was very much not in our plans.

So I got three quotes for vans that were already converted. 1) A 2006 Toyota Sienna with 7,000 miles, 2) A new 2007 Honda Odyssey, and 3) A 2008 Toyota Sienna. The Regional Center looked at all these quotes. They weren't looking at the price of the car--that would be our problem. Their concern was the price of the conversion. The first two came in within $300 of each other. So they asked which we would prefer. Well, the new 2007 was actually $600 less than the used Toyota, so that seemed like a sweeter deal.

Now, mind you, while all this was going on, I was flipping out. I got quotes on these cars, but these cars are VERY desirable. Depending on how long the approval process went, the vans could be gone. There was only this one used 2006 on the one lot. And the 2007s on the other lot were going fast. Plus their good price was only going to last until January 31st! I was also flipping out because WE WEREN'T REALLY IN THE MARKET FOR A NEW CAR!!!

So I'm sweating bullets hoping to get the answer soon and hoping that the fundraiser goes INCREDIBLY WELL to off-set the amount we had to pay. And amazingly, the Regional Center approved the ENTIRE COST of the conversion for the Honda Odyssey, which came to over $18,700! Woof!

I totally wasn't expecting this. It was not what I'd ever heard from any other parent. And I'd spoken to quite a few.

But the good news about the Regional Center covering the conversion was that the fundraising money could go to the cost of the van. And now, to date with our fundraising, we've raised over $13,000! Everyone was remarkably and wonderfully generous. Family. Friends. Strangers. People just gave and gave! That money has made it so we can do our part with the purchase of the Odyssey, which will be delivered to us by the end of the week!

This has been a serious whirlwind. I made the first call to the Regional Center in early January. And once that train started down the track, it didn't stop between getting bids, having the fundraiser, getting approval, securing the van, getting the money, and paying for the van.

I cannot thank you all enough or express how much this will help our lives. Every time I load Soren into his car seat, it's getting more challenging. I end up having to toss him in like a sack of potatoes, which is hardly pleasant for him. I've clocked his head against his chin, giving us both headaches. And loading his full wheelchair stroller into the back of my van has wrenched my back one too many times.

Soon we will have this van and a new wheelchair for Soren (though his wheelchair stroller is approved for car travel until then). My Mom's brother is building a ramp at the front of our house next week, which is also being paid for by the Regional Center! So I'll be able to just roll him down from the house and straight into the van.

And what of the "old" van? Well, we were going to sell it to help pay for the rest of the new van. But since Aaron's truck is going to start costing us more money than it's saving us, and since we own the "old" van, which is newer and safer than the truck, we will become a 2 mini van family. In the end, this will be good in the event of an emergency with Soren--if I'm driving the converted van and unreachable, Aaron can still pick up Soren in a pinch.

So that is the Skinny on the Mini. Thank you all so very, very much!

Oh! And art is still available monkeyhousetoys.com. Just go to Original Art on the left and that will lead you to an icon for the 4 Soren art show. The money will continue to go to this unexpected, but amazing, life-changing purchase!

Thanks!

Amy

Buying Art Show Art

Hey Everyone,

As I mentioned in the previous post, a bunch of the art from the 4 Soren Art show at

Monkeyhouse Toys

is available for sale if you go to their site. However, once you get there, the trick to finding the art is to click on the ORIGINAL ART heading to your left.

If you see something you like, give Mayra at Monkeyhouse a call at 323-662-3437. She's open from 12-6 every day but Monday (12-5 on Sundays).

Even more pieces are available at the store and more are coming in for the Closing Party this Saturday, February 2nd from 3-7pm. Soren will be there from 3-5 if you want to come by and say hi!

Amy

ENCORE-4 SOREN!

We had so much fun and did so well at Soren's Opening Reception, Mayra at Monkeyhouse and I have decided to have a Closing Party on Saturday, February 2nd. We're going to have it start earlier so that the boy we are raising funds for can actually attend his event!

The party/art sale will start at 3:00. I'm not sure how long it will go, though Soren will probably leave around 5:00 for dinner!

But we need more art! As I noted previously, we sold over half of what was donated. So if you want to help fill those walls, email me!

Oh! You can still go to Monkeyhouse to buy art and toys with the funds going to Soren. They are open from 12-6 Tues.-Sat. Sunday they co from 12-5. They are closed Monday.

And the available art should be going online in tomorrow, Thursday, Jan. 24th. It would have been my Mom's 62nd Birthday! Rather fitting that you will be able to buy something to benefit her grandson.

Thank you all!

Amy

Art Show Success!

Hey Everyone,

It's been a crazy couple days, with Soren's fundraiser and then recovering from Soren's fundraiser.

But the Opening Reception at Monkeyhouse went great! We had a HUGE turnout. I was running around like a crazy chicken, overwhelmed by it all.

Nick the Ring was an amazing DJ. Trader Joe's provided yummy snacks. And Silver Lake Wine Co. provided the fantastic wine!

And we sold art. Lots and lots of art! Of the pieces on the wall from the post below, I think 38 pieces sold! And the ones that didn't are awesome too, so I'm sure they will soon!

Beyond the art sales, people were very generous with donations, which was so lovely.

By the end of that evening, we raised over $8,000! That freakin' rocks!

And it actually went SO well, we are thinking of having a closing night party! We have extra wine. We're just looking into getting more art to fill the walls. So if you want to throw in an art piece, there's still time!

Thank you to everyone who donated pieces! Thank you to everyone who came! Thank you to everyone who purchased! And thank you to everyone who donated!

And a HUGE thank you to two amazing women.

First, MAYRA AT MONKEYHOUSE!!!! She has been so generous with her time and her space. And she is surrounded by wonderful friends who donated their time to help hang the art and set up the party.

Second, my amazing friend Sheri, who drove out for the event, helped me pick up wine, also helped set up the party, and kept my hydrated all night. Seriously, I was so busy, I didn't eat or drink anything until she brought me some water. And on our way home at 10:30, she bought me In 'n Out. I would have passed out without her.

THANK YOU ALL!!!! AMY

Art on the Walls!

Tonight is the opening reception for 4 Soren, Soren's art show fundraiser. The folks at Monkeyhouse were up until after 2:00 am hanging the art. Later today, images should be available on their website after everyone has gotten some sleep!

But here are the images from afar on the walls. The pieces are all amazing! Check them out!








Read the post below for information on the show! I hope to see all of you there!

Amy

4 Soren

Hey Everyone!

This is the flyer for Soren’s next fundraiser in less than 2 weeks, on January 19th! Now, this fundraiser is a little different then ones in the past. This time we need help to make our mini-van wheelchair accessible. Sadly, insurance does not help pay for this. The state covers one third (if we're lucky). And it is a costly venture. But we've now faced the reality that it is a necessity for Soren—and us!

So we are raising funds for this project by having an art show at Monkeyhouse Toys & Art Gallery. Saturday the 19th will be the opening reception from 5-9 pm. There will be food provided by Trader Joe's. There will be wine provided by someone who makes awesome wine (I'm still working on that). There will be a kickin' DJ. And there will be amazing ART of all kinds!

Over 40 amazing artists have contributed their art on Soren’s behalf. Some additional artists that didn't make the flyer are Cynthia Ignacio, Shellie Kvilvang, Shellaine Corwell, and Joe Strasser. There will be original paintings, prints, photographs, dolls, and jewelry at a variety of prices!

For those of you unable to attend, the art will be for sale by the 19th on the Monkeyhouse website at

Monkeyhouse Toys

Or if you don’t want to buy art and just want to donate, you can contribute to

Soren's Fund

Thank you all for your wonderful support. We hope to see you on the 19th!

Amy & Aaron

DR 5: The Trip Home

First of all, you'll be glad to know that Soren is doing great today. Happy, eating, happy while eating, kicking his legs and making lots of noise. We're happy to have him back to his old self.

Now, on to the final leg of our journey. Due to storms, our plane was 2 hours late. The drag was that our taxi showed up on time, there was no line to check in at the airport, we got through security without issue (though they made me take Soren out of his chair which defeats the purpose in my book), and passed through immigration. We thought the flight was on time (there are no monitors to check this). That is until I went to get my Nathan's hot dog and spoke to another passenger. Oh well.

Rather than have Soren sit in his chair for 2 hours before having to sit in his chair another 2 hours, we let him stretch out. And when it came time for food, we had our usual supply for him at the ready.

I don't think I've mentioned that we always carry a cooler full of Soren's food with us--eggs, squash, yams, avocados, and of course, milk. And man, having that food has come in handy on every leg. So this poor food had been across the country, come into a foreign country, and was on it's way back, though the load kept getting lighter.

Before finally taking off, Soren pooped and I went to change this diaper. Now this was an interesting experience because there are bathroom attendants at the ready to hand you a towel after you've washed your hands. One of the women followed me in when she saw me carrying Soren (always an amusing visual due to my short stature and his increasing length). She pulled down the diaper deck, covered it with towels, I put Soren down and began the clean up process. Once he was changed, I went to pull up his pants but the attendant, trying to help me, pulled Soren up to stand him on the deck.

Well, with Mr. Jelly Legs, this simply didn't work. I caught him on my shoulder and hoisted his pants up, trying to explain that he doesn't stand, though I had no idea how to say this in Spanish.

We boarded and had a slightly turbulent flight. Once we landed, we ended up sitting on the tarmak for about 15 minutes, much to the annoyance of the pilot. I don't think I've ever heard a pilot actually express annoyance at that, but he was clearly peeved. Since we always board last, we ended up meeting him on our way out. He was very kind and, as we were loading Soren up, commented that his fiance also has a child with special needs. Funny how we end up talking with folks we never would have because of Soren.

After collapsing in Miami for the night, we got up to do the whole thing again the next morning, this time finally heading home. Miami Airport was packed more than usual. I actually had to play the disabled card to get us checked in and out of the heat (which honestly is bad for Soren).

Then off to security. As I mentioned before, Miami has a well-marked disabled access line. We got in it and were going to be the next through when a band (I have no idea who) came through. Clearly being cool rockers outranks being disabled, so the whole crew got to go through before us. Actually, despite their tough guy looks, they were super sweet guys who were appreciative of getting such nice treatment.

We ended up at the gate with only 15 minutes to spare. Rather shocking considering we got there 2 hours before. If we hadn't gotten our disabled access, we may have missed our flight! I was smart enough not to warm up any milk this time 'round.

Our flight was on time and the only thing of note was that Soren pooped again. I only mention this, not because I think you all care about Soren's efficient bowel activity, but because changing Soren on a plane is a sight to be seen (not that you actually want to see it). We were lucky that he hadn't done this on any of the other legs. But there was no getting around it this time. So I picked up Soren, Aaron grabbed the diaper bag, and we headed to the bathroom.

Now, you know how small those bathrooms are. And if you've ever changed a child, you know that the diaper deck is big enough for a 2 year old at best. So imagine trying to fit a long-legged 4 year old on the deck and then try to get business done. I was calling orders out to Aaron like a surgeon to a nurse. "Wipes!" "Bag!" "Diaper!" "More Wipes!" Fortunately we didn't hit any bumps!

So back to L.A., everyone safe and sound, though a little worse for wear.

That's it for DR 5. Rogers out!

Amy

1/1/08

Yesterday continued to be rough. After Soren's 3rd tonic-clonic, he had an Absence seizure. He then had one more 90 second tonic-clonic.

Fearing that if this continued, we would end up in the ER, I paged the pediatric-neurologist on call to see if I could give Soren a second (and more potent) dose of Diastat.

And I've got to say, the team at UCLA is really great about getting back to us. The doctor on call called back in 15 minutes. I told her the situation and she set up a whole plan for me. We were to increase Soren's morning dose of Zonegran 25 mgs. Since it was now 4:00 and the morning dose was clearly past, she said to get this into him before his evening dose. After getting that in him, I was to give him Diastat before Soren had another seizure to stop the cycle. Once he'd recovered from being knocked out by the Diastat, I was to get his evening dose of meds in.

All this went very smoothly. The only rough part for me was when Soren woke up from the Diastat for his dinner. He was understandably shaky from the Valium (that's what Diastat is). He couldn't hold his head up straight as I was feeding him. Seeing him this way was just too much for me after this lousy day, so I lost it.

Now I know I reported my breaking down on our DR trip. And now I'm reporting it again. But I just want you to know that this is not the norm. I usually keep it together pretty darn well. But seeing Soren in this state reminded me of the days when he couldn't hold up his head and was so drugged up he couldn't eat. It made me realize how much progress he'd made and the thought of going backwards was just too much for me.

So I was balling as Aaron held Soren's head up and I fed him. He ended up eating very well, all things considered. I decided I wanted to sleep with Soren, so we set up the fold out couch for us. But that didn't last long because, thanks to the Diastat, Soren was back to his old self (YAY!) and started talking and kicking through the night (trying to make up for inactivity during the day, I guess).

At midnight I gave up and went back to my bed, where we could still hear Soren easily in an emergency. This morning, he woke up his usual chipper self. The shakes are gone and he can hold up his head again. We gave him the day off from school, figuring his body has to be exhausted from all that seizing and all those drugs.

I know mine is.

Amy

Rough Start to A New Year

I'm taking another break before writing the final leg of our DR trip to wish you all a Happy New Year.

We had fun stuff planned today. Start with some yoga, clean up the family, and then head out to see Water Horse.

But after yoga, I went to get Soren out of bed and he had some froth at the side of his mouth and he looked very drifty eyed. Clearly I had just missed a seizure. He slept and I checked him about an hour later-just as he was having another seizure. Aaron and I took action and gave Soren Diastat. This knocked him out until around 11:30, when we got him up for some milk and lunch.

With Soren's seizures, we decided a change of plans was in order, so Aaron and Mo headed off to the movie together while Soren and I hung home. I got most of his milk and food into him. But on his last bite, I noticed Soren's eyes were flicking to the left, which sometimes happens pre-seizure.

Sure enough, he went into another full-blown 90 second tonic-clonic. This was very frustrating since we'd already done the Diastat and you can only give that about once a week. Ugh.

The sad thing is, Soren hadn't had a seizure since December 19th. He'd been happy, social, having a great vacation. So for him to be hit so hard the day before school starts up again is very depressing.

Not the best way to start off the new year. But then, tomorrow is another day.

Amy