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

DR 5: Stem Cell Treatment

Back to my long-winded story. We woke up on Friday morning for Soren's treatment. We were supposed to be picked up at 10:30, so we cleaned up, had breakfast, and went to the lobby to wait for our driver.

While the kids and I waited, Aaron went to the room to warm up milk for Soren (that darn milk). Now, to do this, we have to heat the purified water in the little coffee pot provided. The coffee pot was not behaving well, spilling water everywhere. So, thinking he was running late, Aaron came to the lobby with lukewarm milk. As I mentioned before, Soren is particular about his milk temp.

By now our ride was 30 minutes late, so we turned on my phone to see if there were any messages. Well, we should have done this the day before, because our appointment had been changed, but my phone had died, so I didn't get it. Oops!

With more time on our hands, we returned to our room, heated the milk more, and got it into Soren before our new pick-up time. For the first time, all of us went to the clinic. Last time, Aaron came with me while Mo was at the hotel with her grandparents. But we needed Aaron's strength to help hold Soren down who, now that he's gotten strong with these treatments, resists getting the shots!

So in we all piled and had another E-ticket ride back into town to the clinic in La Romana. A storm came in just as we were getting unloaded, dodging the warm rain as we ran in. Dr. Rader and his wife welcomed us warmly. It was great to see them again.

We got into our room, but things were running really late. Some of our friends were in the next room, so we got to visit. And we came prepared with snacks and our DVD player. Once it was our turn, everything went as smooth as silk. The nurse who did Soren's IV did a great job. Soren wasn't happy with the shots in his leg. As soon as we were finished, a car was waiting and we had another exciting ride back.

We ended up finishing the same time as our friends and arrived back at the hotel for some much-needed, inclusive libations and pizza!

Last up, our return trip home!

Amy

DR 5: Casa del Mar

When last I left you, we had gotten into our taxi cab. Now riding in a taxi in the DR is, as my friend Tammy puts it, an E-ticket ride. It's a 2 lane road. People pass a slow bus or moped piled with 2 or more people despite that there is oncoming traffic. We basically have to hope against hope that we weren't meant to die in a 3rd World Country while getting our son medical treatment.

Arriving at Casa del Mar, we met up with our favorite bell boy, who recognized us from trips past. However, our room wasn't ready. Desperate to jump in the pool and cool down, Mo and Aaron changed into suits while Soren and I hung out waiting for the room. I thought I had booked what they call a suite, which is really just 2 adjoining rooms with a couch in the second room. We always have to request 2 twin roll aways for the kids. Remembering this, I went up to the front desk. They assured me this was taken care of and that our room was ready. However, when I arrived at the room, I discovered that it was not the "suite" but a regular room with 2 double beds. Doubles just don't work for us. Soren ends up kicking the pucky out of Moira and hogging the bed, much like an insistent, but loving, cat.

Annoyed, Soren and I went back to the front desk. I showed the host my emails stating that I'd booked (at least I thought) a suite. They showed me counter emails (which I didn't have but do remember) stating the difference between a "grande" room and a "suite." Of course there was a considerable price difference! Now I was overheated, overwrought, and over it! I threatened to leave the damn place as I was breaking down (once again) in tears.

So they agreed to give me the same price and offered me a room to look at. I was escorted by our favorite bell boy and knew immediately that it was unacceptable. It was right behind the theater, which has noisy shows that go until midnight. I broke down even more in front of this poor man who was only trying to help. I told him I had to talk to Aaron.

Of course, I went to the pool and they had gotten out, looking for me. Desperate to find them, I was now shaking to pieces with tears just streaming down my face. I finally found Mo and Aaron, who sat me down (Mo stroked my hair) while Aaron dealt with the situation with a level head. He got us a quiet room for the low price. We got to the room, put Soren on the bed so he could finally stretch out after being in his seat for 4 hours. I then laid next to him and fell into a deep sleep. When I awoke, I had regained a bit of my sanity and the world looked a little brighter. And then we had dinner, which always makes me feel good.

Tomorrow, the main event, treatment! And I'm glad to say it was WAY less traumatic than this!

Amy

DR 5: MIA Airport

Our flight on Thursday wasn't until 11 am. So we figured we had to get to the airport at 9 am which meant we had to leave the hotel at 8 am which meant we had to get up at 6 am. Having not fully adjusted to the time change, it felt like we were getting up at 3 am. I actually felt fine. Little did I know that I would soon run out of adrenaline and dissolve into a puddle of goo.

When we awoke on Thursday, we were still a bit fearful of TS OLGA that we had seen the night before. We checked the news and saw nothing so we headed to the Miami Airport feeling cautiously optimistic.

For anyone who has been through the Miami Airport, you know what an amazing zoo it is. We arrived and checked our bags at the curb in a rather timely fashion. This was impressive since we were flying internationally and had deal with passports.

Then we went into MIA, which, as usual, was packed with people. But one thing I can say is that they have a designated area for People with Disabilities (PWD). We hopped in that line and got through quickly again. Smooth sailing, right? I should have known.

We got to the gate in plenty of time. I went to Starbucks for some iced tea and hot chocolates. I then returned with Soren's bottle, asking if they could put it in a cup of hot water to warm it. The ladies there put his bottle in the smallest cup. I asked if they could put it in a Venti. "No, we don't do that!" was the rather abrupt response. I actually know that they DO do that. I've had them do it several times before. But I was stuck with this dinky cup of hot water with my cold bottle in it. Needless to say, that water got cold quick and the milk was not warm.

So I returned and requested a Venti full of hot water that I would pay for. Even then I got attitude. I paid for it and then they wouldn't actually put the bottle in the cup and then fill the water. Instead, they gave me a cup full of boiling hot water. Well, I needed to get the bottle in and account for the water that was being displaced. Long story short (well, not really) a burned my hand, dropped the cup and the bottle in the trash, and cussed in front of these two older women customers who were just trying to put some sugar in their coffee.

This is where the breakdown began. All my exhaustion and now burning pain brought me to tears at the Starbucks stand. The poor ladies were handing me wetnaps, trying to help. The ladies behind the counter FINALLY listened to me and filled the cup WITH the bottle in it. They also supplied me with ice for my burned hand. As all this is happening, Moira came up to me to tell me that Soren just had a seizure. Plus it was time to board the plane.

So my great plans to tank Soren up were dashed as he was passed out and we had to pack up and get on the plane. This is, of course, when I saw various friends of mine from previous trips. I was a red-eyed, embarrassed mess trying to socialize with everyone. Ugh!

The terminal we were in didn't allow us to go directly from the terminal to the jet-way to the plane. Instead, all the "wheelies" had to line up for the elevator, which was about the size of a shoe box. Talk about bad design.

And instead of loading all of us first, we were loaded last. This is complicated for us since we are hauling so much equipment, now bonking into people as we boarded. And I have friends who always get the bulk head and they, since the plane was now full, they had no place to put all their stuff. But in the end, we got on the plane, which fortunately took off on time--no storm delays.

Soren eventually woke up and I pulled out the now luke warm milk (Soren is particular about it being quite warm). It looked a little chunky, so I gave it a shake. When it didn't blend together, I decided a new, cold bottle was in order. This time Aaron, who knew I had gone over the edge, handled the milk warming.

Getting into the DR was fine. Getting through integration, fine. Our luggage came out in record time. AND our taxi was there waiting for us. Huzzah!

Then there was the hotel...But that is for tomorrow.

Amy

DR 5: South Beach

We returned from our 5th trip to the DR yesterday. I'm going to tell this tale in stages, since there were many legs to this journey. But most importantly is that Soren's treatment went smoothly. But let's start at the very beginning...

We headed to LAX on Tuesday morning, making good time to the Hilton, where we parked our car. The tram came to pick us up and I saw that there was a ramp for wheelchair access. I didn't know whether to bother with this when a wheelchair bound woman came up and had the ramp brought down for her. After she used the ramp, I figured we should as well, which made getting to the airport all the easier (one less time hefting Soren and his heavy adaptive car seat).

We noticed that the woman had a number of streamlined chairs with her. We got chatting and discovered that she plays tennis on the Olympic team for wheelchair bound competitors. Through the years, she had traveled around the world doing this so it was great to talk to her about which countries were most accessible. We also talked about how she lives in a warm, sunny climate, having grown up in a cold, rainy and snowy one. It's something that I've thought about a lot, appreciating our California weather and an element to consider if we were ever to move.

At LAX, we got our luggage checked and through security without a hitch. One of the attendants noticed Soren's chair and took us to the wheelchair access route, where Soren and I both get personally patted down--always exciting!

Our flight to Miami was on time and went smoothly. We had scheduled an extra day in South Beach to see our college friend Ben. We stayed at the Courtyard by Marriott and, I must say, we were treated very nicely. When we realized they didn't have a fridge for Soren's food, they brought us one. When we realized the pillows were down, they switched them for foam since Aaron is allergic. And while we weren't on the water, we were in an area of town with a lot of easily walkable stuff in the area. Like the Madonna strip club across the street! Mo asked what was at that club. I told her naked ladies and she started cracking up.

We were also near Española street, which had shops and restaurants. We ate at Tapas and Tintos enjoying fantastic food and sangria. The next day, we went to Lincoln street, which is a pedestrian, open air shopping street, like 3rd Street Promenade in Santa Monica, for those of you in L.A. It was warm and humid, but not too bad (and quite nice for December). Then, out of the blue, Soren had a seizure. So that bummed us out and put a damper on the day.

Bucking ourselves up, we had a nice lunch and walked down to the beach. It was really beautiful. We all planned to go to the rooftop pool for a dip, but the elevator that went to the pool was broken, so Soren and I didn't get to go. Turned out just as well--the pool was unheated, the wind had kicked up, and Mo and Aaron were freezing.

That night we went back to Lincoln street for dinner with Ben. We got there early and walked around to see what our options were, simply trying to check out the menus. The bizarre thing was that a host or hostess stands in front of the menu trying to persuade (convince, harass, overwhelm) you into eating at their restaurant. They offer you free dessert, free wine, discount prices. They hand you their card and make you promise to come back. Eventually, we ended up eating an none of these places because we figured they had to suck if these people were pushing them so hard. We had a lovely meal at a place of our own choice!

When we returned to the hotel, we turned on the TV and were surprised to learn that tropical storm Olga was wreaking havoc in Santiago in the DR. We, of course, didn't know the geography of the DR, so we were unsure of what the next day would have in store for us, travel-wise. And while it's not too much of a cliff-hanger, since we obviously (thankfully) got home safe, I will tell the next portion of our trip tomorrow.

Amy

5th Trip to the DR

We head off to the DR for Soren's 5th stem cell treatment tomorrow.

We're excited to see the friends we've made in these journeys.

We're excited that, thanks to all of you, this is an option for our son.

We're excited to see, after 4 promising treatments, what this brings for Soren.

We welcome all good thoughts in our travel and in Soren's treatment.

I'll update you when we return!

Amy

My Classmate Diana

Hey Everyone!

My classmate from high school, Dr. Diana Zschaschel, DDS, has started a new non-profit organization for children with special needs. She is using her skills as a dentist to help these kids and ABC News recently did a story on her.

Children with special needs are often turned away by dentists because they don't know how to deal with the child's disability. Or if that child only has insurance provided by the state (Medi-Cal), the dentist turns them away because the payment is significantly lower than their usual pay. This leads parents to neglecting their child's teeth, which of course can lead to other more costly problems.

But Diana is helping kids like Soren (and she's actually looked at Soren's teeth one time!) by starting this organization. She not only sees this kids, she welcomes them. She treats them with the care and understanding they deserve--that everyone deserves.

So check out

Diana's ABC News Report

And for all these kids, I thank you, Diana!

Amy

Slacking Off

I apologize for not keeping up with the blog. Between Thanksgiving, my getting a part-time job, preparing for Christmas, and going to the DR next Tuesday, I've been a little swamped.

But here's an update. Thanksgiving was lovely. We went to my sister's and Soren had a great time being in the middle of the hubbub. He really seems to like being in the middle of a social group more and more, which is nice. We had a seizure-free Thanksgiving Day for the first time in 3 years! But then to balance that, he had 1 on Friday and 2 on Saturday. But he recovered from them well and kept on truckin'.

We split the drive up in half on the way home, driving to Desert Hot Springs on Saturday and staying at a hotel with lots of warm to hot pools. Soren had a blast laying in Aaron's arms in warm water with a big smile on his face cooing happily.

Last week wasn't so great seizure-wise. He had a few early in the week then Thursday he had 2 at school and 3 at home. At that point we gave him Diastat so he could have a good, seizure-free sleep.

Friday we went to see the "VNS gatekeeper"--the neurologist who looks over the info to officially decide is Soren is a good candidate for the VNS. He, in fact, is. But this doctor suggested we try getting into the Clobazam study first, which was our plan!

And we are looking forward to some nice, balmy weather next week in Miami and the DR as we go for Soren's 5th stem cell treatment! We are very excited, though I'm freaking out that I'm missing a week of childless Christmas shopping. Gotta go hit the malls!

Amy

Thanksgiving

Last year at this time, I wrote a note thanking you all for caring about Soren. Well, I had a conversation last night that made me realize that I must do this again.

Through the amazing world of the internet, Aaron's ex-girlfriend from high school ended up finding my website which then led her here to Soren's blog. And then the sad coincidence is that her sister has two children with Epilepsy. So she emailed me to check if it was okay to give our information to her sister. We said of course, feeling that we always have to help others in this unfortunate situation.

What's even more unfortunate is that her sister hasn't had any one to talk to--no support group, no friends in the same boat, no respite or state assistance. When all this started with her first son, she was actually shunned by people she told. This made her close off from telling people and reaching out for help.

This made me so sad for her and her family. But it also made me so thankful for all of you. I don't know how many people read Soren's blog. But I'm always happily surprised when someone sends me a note saying they were catching up on the blog. You all have expressed concern over Soren's seizures, were indignant when we were treated badly, or were happy to see how good he's looking.

From the beginning of this journey, all our friends and family have been there for us--friends with typical kids, friends with special needs kids, friends with no kids! I didn't realize that this isn't true for everyone and how lucky I am to have all that. And I'm really, really thankful. Without all of you there sending your good thoughts to us, I don't know what I'd do.

And as this journey continues, it's our turn to help someone who needs the support you all have given us. I know it was really hard for her to call me last night, but I'm so glad she did. Aaron went online after the call and found a bunch of information on state assistance and Epilepsy support in her area. Hopefully this will lead her to getting the support and guidance she needs.

Thank you all for reading. Thank you all for caring. Thank you all for being our friends. It really means the world to us.

Happy Thanksgiving!

Amy

Seizures and The Brain Storm Summit

Hey everyone,

It's been a bit since I posted. My computer was getting a much needed service. But now that we're back in business, I have a bunch of stuff to tell you about.

First of all, Soren went another 20 days without a seizure. And then, like clockwork, he had 2 seizures last Monday, on what would have been day 21. Knowing he was catching a cold, I picked him up from school. No more seizures that day. I kept him home Tuesday. Completely seizure-free. He went back to school Wednesday (Halloween) and had another seizure! But the rest of the week was uneventful, seizure-wise, so that was good.

Thursday we had an appointment to get a second opinion from a neurosurgeon on whether Soren would be a surgical candidate for mulit-focal surgery. The surgeon was a lovely guy and agreed with Soren's pediatric neurologist that Soren has too much activity going on in too many lobes of his brain to do surgery.

However, he did think Soren was a good candidate for a VNS (the devise that his cousin Karis had put in a few weeks ago). Now, we've been hesitant about this because we know, as with all treatments, the VNS only helps a certain number of people. Actually about 50% of the people who have it put in benefit from the device. And it's not a cure. You usually have to remain on some meds. But the hope is that the VNS (which has no side effects other than a possible scratchy throat) cuts down on the frequency and severity of the seizures by 50%. Then the patient can hopefully decrease their meds a bit, so you have less side-effects from those. But, if the devise doesn't work, it can only be partially removed. The wire (I think it's a wire) that's wrapped around the Vagal Nerve must remain there. Not that this is a big deal, but it's something.

We have Soren's scans out to a doctor at Johns Hopkins and another at Miami Children's. Both have excellent Epilepsy centers, so we'll see what they think in regards to surgery and the VNS.

The other thing Soren and I did while at this visit was get his blood drawn for another genetic test. I'll explain that more another day. But he was a trooper.

Then Saturday, Aaron and I went to the Epilepsy Brain Storm Summit, a conference on what's coming up as far as treatment for intractable (uncontrolled) seizures. I wrote a while ago about another device called a RNS--responsive neurostimulator. Unlike the VNS which is put on the Vagul Nerve in your neck, the RNS is implanted in your brian. Very Bionic Woman-style. After doing some research on this, I found out that Soren is not currently a candidate because it is still in clinical studies. And they do studies on adults first (they have some crazy ethical rules about not testing on kids for some reason), they make sure it works, and then it eventually trickles down to the kids. So that's about 2 years down the road.

There is a second brain stimulation device also in studies. The two devices work differently. The RNS is about the size of an iPod mini and it's put either in your skull or on your skull--I didn't quite get the details on that. It has wires coming from it that are positioned above the focal points of the seizures. Currently this would work for someone with up to 3 seizure focal points. When the device detects a seizure, it sends out an electic pulse to counter the seizure.

The other device is described as an "Anterior thalamic nucleus stimulator." With this, the wires don't target specific focal points. Instead, a wire is placed in the Thalamus and about every 5 minutes, it sends out a pulse, hopefully catching any seizure activity. This is similar to the VNS, but the lead is directly in the brain instead of going up the the Vagul Nerve. The good thing about this device is that if you have too many focal points or don't know exactly where the focal points are or can't reach them, the pulse will hopefully still be able to catch the seizure. Again, this is in studies and at least 2 years down the road.

Lastly, there are a bunch of new AEDs (anti-epileptic drugs) coming down the pike. There are a bunch that are "sisters" to previous drugs, but hopefully with less side effects. And then there are new drugs that are truly new and unrelated to old drugs. For people who haven't responded at all to the old drugs, this would be great.

It was a lot of information for one day, but it was very encouraging to hear how hard doctors are working to help people--children and adults--with Epilepsy. 1 in 100 people have Epilepsy. Of those, 50% respond to medicine and are able to control their seizures. 10% will respond to the new meds. 5% will be candidates for surgery.

But that leaves 35% who have uncontrolled seizures. And everyone in that room was either one of those 35% or related to them. The vibe in the room was kind of sad. Beaten down. So many people who have been devistated by seizures and are searching for control or, ideally, a cure. One parent described how seizures have affected his child. A child can be developing perfectly normally, but as soon as a seizure hits, so much is lost. They said it's like information being written down in pencil, but then someone is following behind erasing that pencil. Soren's barely had enough written down that hasn't been erased to fill a page.

But as much as there was sadness, there was also hope. These new drugs and devises that will hopefully work for some of the 35%. Maybe they'll work on Soren and we can start writing stuff down in ink.

Amy