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

The Bumbo: Parental Intelligence Required

In various posts, you've seen Soren sitting in this great seat. It's called a Bumbo.

It's actually meant for babies once they can hold their head up. However, Physical and Occupational Therapists of Special Needs Kids have been using them because they position bodies really well.

When we first got it for Soren, he hated it because he had to use his neck and trunk to sit up. But then as his strength grew, his tolerance for it grew. Now he can sit in it for an hour to two hours.

The thing is, the Bumbo is being recalled. Why? Because parents are putting the Bumbo on tables, counters, chairs, etc. and leaving the room. The children, being children, then takes headers out of the Bumbo and onto the floor. Now, if the seat was simply on the floor, as it should be, the child would only be taking a minor tumble. But from on top of a table, this ends up being a big fall.

I know from experience that the folks at Bumbo specifically put in a note telling parents not to do this (not that parents should need to be told). But these parents are claiming that there are photos provided by the company of kids in the seats on tables, etc. And while this may be true, parents must then take responsibility to NOT BE FRICKIN' DING-DONGS!!!!!

This is a great product for typical and special needs kids. It makes me sad and angry that these parents don't have the common sense to use it properly. And then, when they don't, they don't take responsibility for their poor parenting choice. They blame it on the product!

Well, I'm just here to say the product, if properly used, is really wonderful. For us, it's a great way to sit Soren up. I actually sent it to Soren's school for his picture day so he could sit properly. They ended up using it for every kid in the class who needed it. It worked so well, they bought some for the class.

And it's portable! We went to the park today for a pumpkin carving party. I set Soren in the chair (ON THE GROUND) and we decorated pumpkins. He was able to sit up, look around, and be as social as he can be. He wasn't flat on his back, not part of the party. And since it's not a "special needs product" it doesn't draw attention to itself.

So that's my rant, my plea. Don't let this product be recalled. It's simple. It's harmless. It's needed for many children, and let's face it, they're all special.

Amy

Karis Update

I was emailed a note from my cousin Brad on Karis' surgery. He said, "Everything went according to plan. It took a couple of hours. Now she has a cut below her left armpit and on the left side of her neck. Karis has been feeling pain and is very grumpy after the surgery. We keep praying for no infections. Christy [Karis' mom] is staying with her overnight in the hospital, and I came home since we didn't have double accommodations. The VNS device will be activated in a couple of weeks by her neurologist. The first step was just to get it implanted with no infection."

Christy then sent a further update when she and Karis got home. "We recently arrived home from the hospital. We had a rough night, with Karis waking up every couple hours crying (and even when she was sleeping, the stupid monitor alarms kept going off for random reasons and waking me up.) But this morning she has been fine, no crying and not even any pain medication. The trickiest thing is that we can't pick her up under her arms for several days, so we don't hurt the incision. The device is not turned on yet. We have to wait 2 weeks to make sure there is no infection or problem, and then go to her neurologist and he will turn it on and adjust the level. So we are praying all will go well. Now we are just trying to recover some sleep."

They thank you for all your prayers and well-wishes!

Amy

Prayers for Soren's Cousin Karis

Karis Keating needs your prayers. She is the daughter of my cousin Brad and she also has Epilepsy. I've written about her before and that the doctors do not know about a genetic link between their conditions. Karis, like Soren, has struggled with seizures. And tomorrow she will go in for surgery to try and gain control.

Tomorrow afternoon, Karis will have a Vagus Nerve Stimulator implanted in her neck. The VNS is like a pacemaker for the brain. It sends pulses to try and stop the seizures before they become full blown. Karis needs your good thoughts and prayers as she goes through the procedure, which will hopefully result in seizure control.

Thank you all!

Amy