Wednesday, January 30, 2008

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!


    Wednesday, January 23, 2008


    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!


    Monday, January 21, 2008

    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.


    Saturday, January 19, 2008

    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!


    Monday, January 07, 2008

    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

    Thursday, January 03, 2008

    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!


    Wednesday, January 02, 2008


    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.


    Tuesday, January 01, 2008

    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.