Christmas Concussion

Well, not really. But not for lack of trying!

We decided to do something different this Christmas. We wanted to have a little holiday--just the four of us. Not a trip connected with a medical treatment. Just something relaxing, rejuvenating. So we made plans to go to one of our favorite places--Santa Barbara.

Aaron made reservations at our favorite Fess Parker Doubletree. Moira loves the chocolate chip cookies they provide. Mo, Aaron, and I love the hot tub. We hoped Soren would enjoy it too.

So, Christmas morning, we opened gifts. We had a leisurely morning eating breakfast, cleaning ourselves and our kids up, eating lunch, packing up. We headed out around 2:30 and made it to Santa Barbara quite easily. Things were going smoothly. We should have known better for the storm was brewing.

We checked into our ground floor, wheelchair accessible, pool adjacent room. First hitch. Moira's bag was missing. As in, we forgot to pack it. Oops! No worries, right? Mo and I headed off to the gift shop and got her a new swim suit and a couple new T-shirts--for sleeping and for the next day. With two new toothbrushes in hand for the kids, we were set!

Back in the room, we all changed into our suits (Mo in her new one--a perfect fit, no less). The sun was setting. Families who were at the pool when we rolled our luggage by were now mostly gone, getting ready for Christmas dinner. One last mom was left drying off her sons.

Mo got into the hot tub. Aaron stood by on the side while I, as I've done many times, picked up Soren and headed for the steps. There's a hand rail there to hold onto, just in case. I held it. I put my foot down on the first step. My foot slipped. I tensed my arm to prevent Soren and I from falling. But having stepped down and with my short stature, the distance to the side of the hot tub was also short.

THWACK!!!! I heard Soren's head hit. I screamed. Aaron grabbed Soren and cradled him as Soren started to scream. Aaron held Soren against his body where his head hit. We were both fearful of seeing the wound. The mom and her sons who had lingered had fled from the screams of terror.

Finally, when Soren was more calm, Aaron moved Soren so we could see. It was a forehead hit, which we knew from our time of Moira learning to walk, was one of the strongest parts of the head. Poor Mo's forehead was covered in goose eggs back then. We feared other parents would suspect abuse. Really, she just had poor footing on our screwy backyard bricks.

Soren's wound was red, a bit scratched. We feared it would swell to an awful purple. He dangled his foot in the hot tub. He seemed happy to not be disturbed. A man from the hotel wandered by. Asked if Soren was sleeping. I explained the situation--the slip, the fall, the thwack. He happened to be a security officer and sat down to take a report. He was very kind and we were happy to oblige, giving our information. Within the information he asked, "Does he have any disabilities?" Um, well, yes, he's physically disabled. Uncomfortable pause.

Hospital information was given, in case we needed it. I should mention here that we have a rule--NO HOSPITALS ON CHRISTMAS.

Now, usually, folks don't need to make this an actual rule. It's kind of understood, right? But 2 Christmases ago, Soren actually almost landed in the hospital. I can't remember clearly, but I think it was a few days before Christmas that Aaron and I ended up in the emergency room with the boy. We made it through Christmas that year but then Soren ended up admitted in the hospital with aspiration pneumonia (he had inhaled milk into his lungs) for New Years! He was stuck at Huntington in Pasadena (home of the Rose Parade) two days before and into New Year's Day. If you don't know Huntington, to get there, you actually have to cross the parade route. NOT a good place to have your kid stuck in the hospital!!!!!

So this is where our rule came from. Fortunately, we were able to stick with it. After Soren had calmed, I took him back to the room to make sure he stayed awake. Once I got him out of his wet clothes, he was happy as a clam. Kicking, smiling, and pooping. Three times for Pete's sake! And not a hint of concussion.

He ate well, drank well, pooped well, and frankly, had a hard time going to sleep. Since we'd forgotten Mo's stuff, we had forgotten her favorite blanket, Bobby. So Aaron slept with Mo while I slept with Soren. I think I passed out before him, the stinker (literally).

So, that was our "Merry Christmas." Teaching us, don't ever get too set in your plans, 'cause life will come in bite you in the ass. But all things considered, it wasn't a bite. Only a nibble. Our boy is fine. Our girl had fun in the hot tub. And that always makes things more merry.

Still, we're hoping for an uneventful New Year. We're staying home, spray-dying Mo's hair. Maybe Soren's too. Heck, maybe we'll do ours as well. Just no hot tubs.

Amy

Getting Treatment

People often ask about how long this whole treatment takes. Is Soren in the hospital for days? What it's like?

Well, I was there the whole time. They put an IV into his arm and blocked his elbow so he wouldn't bend it. They flush it with saline for about 30 minutes or so to make sure the needle is in his vein. Then they come in and inject one round of the stem cells into to the IV.

Then he gets the 2nd round of stem cells which consists of 2 shots in each thigh.

Saline is flushed through the IV line for a while. I spent most of my time during the whole procedure making sure Soren didn't move his arm (he kept wanting to throw it up in the air). So my body was across him through most of the afternoon to prevent him from moving. While I did this, I watched Sunset Boulevard on our portable DVD player (you can even see it on his bed actually paused on the movie!). Thank goodness for that thing!

The whole process takes about 3 hours with prep, treatment, and post.

Then we go back to the hotel. A rather easy treatment in a distant land.

Amy

Navigating Seizures

So, Soren has had pretty good seizure control for a while. But, as I've written earlier, he will have breakthrough seizures. Whenever this happens, we freak out, watch to see how many he has during that day, and then call the pediatric neurologist on call to get the okay to increase his meds.

Well, now we are starting to finally catch on to when he has these breakthroughs. We knew he would have them during growth-spurts. Next we realized that PRIOR to any indications of illness (stuff nose, runny nose, cough), he has seizures.

But then there were times when he wasn't growing or getting sick but was seizing. This is during travel.

Think of how stressed and exhausted you get during travel. That stress kind of breaks down your defenses. Some people get sick when their defenses are down. Soren has seizures.

So, in hindsight, the seizures Soren had in Hawaii were probably due to exhaustion from travel. We had just come from visiting Aaron's folks in Washington, which was a big trip. Then we continued on to Lanai. I know I was beat, so Soren must have been too.

Next when we went to my sister's for Thanksgiving, Soren had a seizure (granted just one) on Thanksgiving Day. But, again, it was a break in his schedule, a LONG drive, and a lot of hubbub, which is overwhelming to us all.

Finally, on our recent DR trip, Soren had a seizure on the second leg of our journey, from Miami to La Romana. And then he had a bunch of seizures in the days while we were in the DR.

The nice thing (if there can be such a thing) for me was that I had finally caught on to this pattern. So I was not as stressed about him seizing. I didn't try to call the doctor. I didn't increase his medicine. I just watched and waited to see how Soren did once he got home.

And, you know what? He's been great! Not one seizures since we've been back. He's been happy, kicking, giggling. I think he's just really happy to be back home.

Amy

Microcephaly Update

I wrote earlier about my trip to the geneticist and the whole CDKL5 gene. Part of that was the geneticist commenting on Soren's drop off in head growth and the possibility of microcephaly. After looking it up on the net, I totally freaked out. In case you were like me, let me put your fears at ease.

Soren and I went to his neurologist and I mentioned the lack of head growth. He looked at me unimpressed and asked, "How old is he?" "Three," I said. "Everyone's head growth drops off at 3. Otherwise we'd have huge heads."

WHEW! Did that make me feel better. He said that Soren's head growth is on track, which means that his brain growth is on track.

Update on the CDKL5 testing, we are going to have blood drawn this month to test for this since we just got insurance approval. I'll keep you posted.

Amy

Back from the DR

Hello All!

We have returned! Soren's treatment went very well. He slept a lot afterwards and had quite an appetite when he was awake. Now we watch and wait and hope for great things!

As for our trip, it went well overall, though--as with any trip--not everything went as planned. The biggest hitch was that I got food poisoning Friday night. Thus, our day of fun on the beach was spent by Aaron and Moira while Soren and I hung out in the room. Ugh. Next time, I'm staying away from the shrimp!

We met lots of lovely families who were also there for treatments. I spoke with a bunch of first timers--a woman who had had a stroke, parents of a boy with CP. Then there were many folks who, like us, were there for their a follow-up visit. Clayton was there--looking great as ever. It was actually nice to hang out at the hotel (when I wasn't sick) with these friends who all understood each others situations.

I will keep you updated on progress and post pictures once we have them developed (we had our old-fashioned camera with us this trip).

Thanks for your good thoughts! Love to you all!

Amy

DR Trippin'

We are off to the DR on Wednesday! WAHOOOOOOOO!

It's been a long-time comin' and it's finally here. I'm in a bit of a scramble to repack our bags (we got back yesterday from my sister's house in Scottsdale where we went for Thanksgiving). Currently I'm procrastinating and writing this post instead of folding newly washed clothes.

Actually, I just finished confirming all of our reservations. When I called the hotel at the DR, the man at the reservation desk asked if it was my first time at their hotel--which it is. We decided to switch after having a mediocre hotel experience on our last trip. When I told him it was my first time he said, in his great Spanish accent, "Come for the fun! Come for the paradise!" I was so thrown by this I had to confirm this is actually what he said. It was. I didn't have the heart to tell him that I was coming for the stem cell injections since he was so excited about the fun and the paradise.

But we hope to get a day of that in as well. One of the nice things about this hotel is that it's actually ON the beach. The last place we stayed, we had to load the kids into a golf cart and drive to the beach. This is a bit of a challenge with Soren and his big old stroller. The new hotel is also more wheelchair accessible, according to all my DR-traveling friends in the know. That will be quite a nice change from all the stairs we had to maneuver on our last trip.

We'll be flying out of LAX Wednesday into Miami. We'll spend the night at an airport hotel. Then Thursday we'll continue on to La Romana in the DR. It's really the best and most human way to do it with two kids.

Friday Soren gets his injection. Saturday we get to enjoy "the fun and the paradise." A nice thing is that the DR's air temperature and water temperature are both VERY warm. Soren LOVES that. And their beach is protected by a reef, so the waters are super mellow. At least Soren will get a little treat after getting juiced up.

Then we get back on the plane Sunday to go to Miami. And Monday we'll return to L.A. Rather whirlwind. But totally worth it! We're really excited about what this treatment could bring. I'll take pictures and write an update when we get back. Wish us luck!

Amy

Giving Thanks

As Thanksgiving is fast approaching, I want to thank you all for your support during our challenges with Soren.

So many people have helped in so many ways--giving a theater space, doing a performance, coming to a performance, giving socks, throwing socks, selling socks, listening to our troubles, reading about our troubles, donating to our cause, running for our cause, sending an email of love, donating cookies, giving of your time, offering a much needed vacation, donating programs, donating flyers, donating art, selling art, calling to say hello.

Thank you all for giving of yourselves in ways I could never imagine. For not judging that which cannot be judged. And for caring.

Thank you for helping our boy. Thanks for giving. Thank you.

Amy

Calabasas Classic 5K/10K Run

Last Saturday I ran my first 5K! Amazing, shocking, but true!

I ran it in support of The Talbert Family Foundation, which has given so much to Soren. Because of them, Soren can get tax-deductible donations. They also gave us a $5,000 honorarium when he became a TFF kid. And when we raised our first $5,000, they matched it.

So I trained (if you know me, you know this is quite a feat) and ran for the foundation and for Soren.

And I'm lucky enough to have some athletic friends who came to support Soren as well! My friend Keith actually ran the 5K with me, which was fantastic. It was a good, tough course and it was great to have a friend beside me.

Then my longtime college friend Neil ran the 10K (and did quite well, I might add). Aaron's former coworker Mona and her friend also ran the 10K. Amazing!

Then I was also lucky enough to see my friend Cindy who was voluteering her time to the Foundation. AND I FINALLY got to meet the lovely Julie Talbert of The Talbert Family Foundation. It was a great day. The event (which was held with much support in Calabasas) was fantastic with an amazing turn out!

Very cool. And now that I know I can do it, I plan to do it again next year!

Amy

Genetics

It's been a tough week. If you don't want to know why, I'd skip reading this entry.

Back when all this started, we went to see a geneticist at Cedars to see if there was a genetic cause for Soren's Infantile Spasms. While this wouldn't offer us any kind of cure, we hoped it would give us the "why" answer that everyone had been looking for. Plus, if we could then check if Moira was a carrier of any genetic mutations, we could hopefully prevent her from dealing with this problem when she had children.

We did a special test to check if Soren had a mutation of his ARX gene. They had recently found this gene and mutations of it could cause Infantile Spasms. His test came back negative from this. After this, we dropped the genetic ball for a bit. It wasn't going to change our course as far as how we were treating Soren. We knew our goal was to stop the seizures and to work on furthering his development. That wasn't going to change.

But then my cousin's daughter started having Infantile Spasms as well. She had started having seizures right after birth. But then the IS developed as she got older. So I thought exploring the genetics would be worthwhile again.

Soren and I went back on Tuesday. And I've kinda been a wreck ever since. As soon as they saw him, they noticed that he was wringing his hands--something he does ALL the time. Then he starting "clapping" his hands (not with sound, just bringing them together). Both of these are indicators of a NEW gene mutation that has been recently found. It's interesting, we were always SO happy that Soren brought his hands together. Bringing your hands to midline is very important in development. And we've always thought his hand clapping was him signing "more" (which I still think he is at times). But now we've come to realize that these may just be part of his disorder. Lovely.

The gene in question is called CDKL5. It's an X-linked gene and a mutation of it can cause Infantile Spasms/West Syndrome. The geneticists also noted that Soren's head is not growing as much as it should. This is called microcephely. This indicates that his brain is not growing as it should either. If you want to get really depressed like I've been all week, google CDKL5 and microcephely. But I wouldn't recommend it.

The doctors were quite excited to see all these indicators. It gave them hope for an answer. Of course, my heart sank. They took pictures of Soren's head, his crazy cowlicks on the back of it, got photos of him wringing his hands, clapping his hands, and of the inside of his mouth (Soren has an underbite). Now we have to work on getting the actual blood test. That takes a little bit of negotiating with insurance companies.

If Soren tests positive for this mutation, I will then get tested. Since it is an X-linked gene, he could have gotten it from me. It could also be a new mutation, meaning that Soren was the first in our family to have it. But if I also have the mutation, we would then test Moira. If she had it, it could affect her choice in having children. Also, if I had it, my sister would probably test for it since she has two daughters as well.

Of course, his test could come back negative. But that just means that we have to wait around for the next mutated gene connected to Infantile Spasms is found so we can test for that. It could go on forver.

But, most importantly, what does this mean for Soren? If he does have this mutation, there is no cure. There is nothing to help the microcephely. So we would go about our lives as we have, doing the best we can for him. Anti-seizure meds, therapies, school.

And then there's our great hope for the stem cell injections. Everyone on the team was very interested in the fact that we were getting them done. They were interested in the changes we'd seen so far and eager to see what changes Soren might have with these next rounds. There are other children with this disorder, and if stem cells could give their parents hope for their children, the doctors would like to pass that information along.

Three weeks from today we will be back in the DR. Three weeks from tomorrow we will get Soren's 3rd injection. And then we wait.

And hope.

Amy

PROM 2006: A NIGHT TO REMEMBER

Soren is very lucky to have a lovely caregiver named Aubrey. And Aubrey has a lovely sister named Ashley. Ashley and some of her friends decided it would be fun to throw an adult prom, making up for all the crappy proms we all had as teenagers.

And then they asked me if the proceeds of the prom could go to Soren's Stem Cell Fund. I was overwhelmed and flattered and said yes.

So, if you are available this Friday, come to
PROM 2006: A NIGHT TO REMEMBER!

Hosts: Ashley, Aubrey, Nicole, and Cara
Location: Holiday Inn /Burbank Media Center
150 E Angeleno, Burbank, CA
When: Friday, November 3, 7:00pm to 11:59pm
To buy tickets: contact Ashley at (818) 381-2097 or Aubrey at (619) 921-2578 / aubreyjoysaverino@hotmail.com.

They can only sell 115 tickets and they are going fast so the sooner you get them the better.

Doors open at 7pm now and a limited open bar (beer & wine) will be available to guests until the money runs out...so the earlier you get there, the more free drinks you get!

Hotel rooms are available to our party guests at a discounted rate of $99 per room (normally $140) so if you plan to book a room, mention you are going to the PROM fundraiser there that night.

Tickets are $50 a couple or $60 at the door
Dress code is strictly enforced: Gowns and Suits

The Holiday Inn has a lovely windowed room at the top of the building where you will get a great view of the lights of Burbank. (Seriously, it's pretty.) Besides the free beer and wine between 7-8, there will also be a cash bar. There will be snacks, though dinner is not included, so eat beforehand. There will be corsages and boutonnières, cheesy photos, and dancing!

I know from Aubrey that they have paid all of their costs and now everything they make goes to Soren. There is limited space, so if you want to get in, call and make a reservation! Aaron and I will be there workin' our fine moves on the dance floor. Come and join us!

Amy

Update

Just a little update for everyone. Soren is doing well at school. They work him hard and he is building up stamina. He eats the cafeteria food there--they know how to prepare it for kids like Soren. And he loves it. It's great for me cause he's venturing out past his usual avocado!

Next, we got the exact same tricycle you saw in the previous post on eBay! Totally got it for a song. Like all special needs products, if we bought it new, it wouldn't come cheap. But this is an older model that fits Soren well. I outbid someone at the last second and now Soren can ride on the weekends for more practice.

I must admit I did feel some guilt outbidding that person. They were, most likely, also a parent of a special needs kid. But that's the way of eBay, I guess, right?

Soren had an appointment with his ophthalmologist yesterday. His right eye is still turning in quite a bit. So we started patching his left eye for 4 hours a day for the next 5 weeks to see if we can strengthen the muscles in his right eye. If that works, we may move up to corrective glasses that can then further strengthen his eye.

If all that DOESN'T work, we may have to consider surgery. I'll keep you posted.

AND in 4 1/2 weeks, we are going back to the DR for Soren's 3rd stem cell treatment!!!! We are very excited and hopeful.

Amy

IEP Recommendations

I have numbers of friends who are about to go through the IEP Process. And I'm hoping that other parents of special needs kids end up stumbling upon this sight and get helpful information.

So I've decided to put my list of recommendations for preparing for the IEP.

1. Take a class in preparing for the IEP. In California, the Regional Center offers these. It's one night a week for 4 or 5 weeks. But it's worth it because it starts you thinking about things you don't wish to think about.

2. Buy a book. The Complete IEP Guide is one. Buy it. Read it. It may help.

3. Put together your BINDER. Now you don't have to do this last minute like I did. In fact, I recommend that you don't. But with special needs kids there are LOTS of reports and assessments from therapists and doctors. Gather these. Make up a medical history for your child. On there put meds that they have taken and ones they are currently taking. List hospital visits. Make a list of Key Contacts-doctors, therapists, parents.

TABLE OF CONTENTS: This binder ends up BIG, so make a table of contents so you know where your stuff is. I swiped mine from Julie. The headings were Key Information, Medical Information, Federal/State Services, Educational Reports, Therapy Reports.

COVER SHEETS for each section. And if you're feeling fancy (which I was) cover sheets for your reports, etc. It makes things easier to find.

COLOR CODED SLEEVES: Instead of three-hole punching everything (which will drive you mad) get color coded sleeves you can just slip the paperwork in. Office Depot has packages of them. One of Julie's totally awesome ideas!

MAKE COPIES of all your paperwork and put them in the sleeves as well. Have them on hand to give to the IEP Team. Even if you think you've given everyone everything thing, there's always someone who didn't get something. Have your originals. But also have your copies.

And then put in PICTURES!!!! Get the picture pages. Or do a composite on the computer if you're that savvy. Remember, this is about YOUR CHILD, not just some faceless person with a diagnosis.

Julie hadn't done pictures when I saw her binder and I told her about the great response the team had to Soren's. So not only did Julie put in photos, so put together the lovliest handout about Camille I've ever seen. And I am SO going to do this for Soren's next IEP. Along side photos, Julie listed HOPES AND DREAMS they have for Camille. She also described Camille's PERSONALITY. She listed Camille's STRENGTHS, CHALLENGES, and CONSIDERATIONS that should be taken on her behalf.

At the IEP, the parents should be given the opportunity to say what their goals are for their child. Julie's handout idea totally encapsulates this. Brilliant!

4. In putting the binder together, don't forget that you should keep all your correspondence with stage agencies and school districts in writing. This means, if you email someone, you should print out that email and file it providing proof of this correspondence. If you speak on the phone, send a letter restating what was spoken about. I know it's a pain, but it can save your back.

5. Pull together your team. The school district has theirs. Make sure you have people backing you up as well. It's good to have others who have spent a long period of time watching your child grow and change. But keep in mind that you have to inform the school district of people you are bringing along.

6. GET AN ADVOCATE!!!!! The IEP can be very emotional. You may not be thinking clearly enough to ask all the key questions. It's good to have someone who is not emotionally attached and still has your child's best interest at heart. And if you can get someone who specializes in your child's medical issue, even better. Our advocate specialized in kids with brain injuries, so she knew the ins and outs of that subject matter.

7. DON'T SIGN THE IEP!!!!! If they pressure you, stand your ground. You should be given a copy that you can look over for a few days. Even if you get EVERYTHING you think you wanted. Our IEP lasted 2 1/2 hours. My friends' lasted 5 hours! Everyone is a little bleary eyed after that. We really did get everything we wanted, but we took the IEP home and found a few minor errors. Would they have affected the outcome of Soren's IEP? No. But when you are signing something that is legally binding everything should be in order.

8. Move to Glendale so you can be in the GUSD cause they were the BEST.

Okay, I know this isn't possible for everyone. However, I DO have a friend who recently moved from their house in Silverlake to an apartment in Glendale JUST so they could get into the same class that Soren is in. But for the rest of you, really look into the schools that would be appropriate for your child. Take a tour, meet teachers, ask questions. It's your right as a tax payer and as a parent.

I hope this helps. And feel free to ask me questions if I haven't covered something.

Amy

The IEP

Sorry I haven't written in a while. We were preparing for a VERY important meeting for Soren called the IEP, which happened last Friday. And this is such a HUGE deal that this blog is going to be equally HUGE. So get yourself a snack and a drink (preferably one with alcohol cause you're gonna need it) and get ready for a long read.

Alright, you got your wine and cheese? Good.

What is an IEP you ask? It stands for Individualized Education Plan. When a child with special needs turns three, they go into the public school system and can start going to a special needs preschool. This is true whether the child's needs be something as "simple" as speech delays or more "complicated" like Autism, Down's, or Seizure disorders.

But I've gotten ahead of myself. PRIOR to turning three, in California, a child with special needs is assessed by a state-funded program called the Regional Center. Once assessed, they determine what therapies they will fund for this child. Soren had LOTS of needs, so he got Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy, Vision Therapy, and his preschool at UCLA all funded by the Regional Center. They also have supplied us with equipment for Soren such as a bath seat, a stander, a stroller, and a feeding chair. And the all-important Respite Care, which has kept us from going totally insane. We feel truly lucky to have gotten such wonderful services.

Once a child turns three, these services (minus Feeding Therapy and Respite Care) are taken over by the school system. But it's not as simple as just having the services go from one entity to another. It's a huge process. Soren, once again, had to be assessed. This time by a TEAM of people from the school district. For us this means GUSD (Glendale Unified School District). They had a separate OT, PT, Vision Therapist, Speech Therapist, Special Ed teacher, Regular Ed teacher, nurse, and psychologist observe what Soren could and could not do. Based off that assessment, they would offer (or not offer) certain services.

First Soren and I went to a 2 hour assessment with the PT and OT. I provided them with reports from his regular OT and PT, so they could see what progress Soren had made, cause you can't really find everything out about a child in just 2 hours. Then a couple weeks later he had another assessment by the rest of the team. This took another 2 1/2 hours. I again provided them with doctors reports and teacher/therapist assessments so they would know what has been going on with Soren the past 3 years.

And while the therapists and teachers worked with Soren, I was basically given an oral SAT about his abilities. Questions like, "Does he respond when his name is called? Does he know not to touch a hot oven? Does he pick up his toys? Does he help with household chores? Does he share toys when asked? Does he play well with others?" were asked. The bummer for me was that a lot of those answers were no. It really wears you down. But they've got to ask them.

The GREAT thing was that everyone on the GUSD team was FANTASTIC! They connected with Soren and really cared about what was best for him. They were very interested in his program at UCLA. In that program, they use what's called Assistive Technology. Large buttons which, when pressed, give voice responses. For instance, during snack, Soren has one button that says "More cracker, please," when pressed. And another that says, "I'd like a drink." One of the teachers recommended adding their Assistive Technology Specialist to the team. That way she could come to UCLA and see what they had and further assess Soren's needs so that GUSD could provide for him. While it was a long meeting, it went well and I was feeling very confident that we would get what he needed.

However, we went to our Epilepsy Support Group a couple weeks before the IEP meeting was to happen (where everyone sits down and discusses and PUTS IN WRITING what will be done for a child). A discussion came up about IEPs and how horrible they can be. The matters discussed and written become legally binding once the parents sign the document. If you then want to change something, there has to be an amendment and sometimes if the parties disagree, you have to go through Due Process.

Aaron and I were the only parents who had not gone through the IEP. And the horror stories that we heard that day put the fear of God in us. Tales of the IEP paperwork not being given to a parent at the end of a meeting and then changed. Parents are to be given a copy, even if they don't sign it. In fact, it's recommended that you DON'T sign it and take the time to look it over to make sure everything's cool. But this parent was NOT given a copy and someone from the school district took it and changed things to basically slander that child and cut her services. They had to take it to court and the parent won. But what a pain in the ass!

Other parents said we should not enter the room without an advocate. That the school district did not necessarily have the child's best interests at heart--they have budgetary concerns and their own agendas to tend to. We just couldn't imagine this to be true. And I, having met the team, couldn't see them doing such a thing to Soren. But the parents all told us not to be naive.

So Aaron and I were totally freaked! We suddenly feared that therapies would be cut. And our biggest fear was that Soren would be put in a class that wasn't challenging or stimulating enough. There were really two options of schools for Soren. The first is a preschool called Cloud. I had toured there and was very impressed. The classrooms were all wheelchair accessible and arranged similar to his class at UCLA. But in all the classes I observed, there were no children as delayed as Soren. There were kids with Down's, Autism, and speech delays. But all of the kids could move and do the class activities on their own--without major assistance. Soren really needed more help then I thought these classes could provide. While the kinds of kids in the class were the same as at UCLA, they didn't have positional equipment or the Assistive Technology I was talking about. Now, technically, if this WAS the best place for Soren, the school district would have to provide all that equipment.

But there was the second option. A school called College View. Now College View is a special needs school--from preschool to adult. It has all the equipment Soren would need because it is a school for children with severe to profound disabilities. It is filled with lovely, amazing kids. But it's heartbreaking to realize that your child is, in fact, one of these kids. At my first tour there, I was taken to a class with kids of varying ages, all of whom are very disabled. They cannot walk, talk, feed themselves--just like Soren. BUT I knew in my heart that this was not the right place for him. Soren NEEDS stimulation. Yes, at UCLA he was one of the most disabled kids in his class. But he thrived there because he loves to watch other kids. He listens to the hubbub. I knew that for Soren to progress, he would need to be in a different class. I got his lead teacher at UCLA to write a letter backing me up on what Soren needed in a school setting. And even though it didn't seem like the best match, I was determined to get Soren into Cloud. I figured we would fight for a one-on-one aid (or shadow) to help him at school. And I would get them to bring in the necessary equipment for Soren.

Then I was speaking with Soren's regular OT and PT. They were really pushing me towards College View. I told them my fears and they informed me that there was another class that Soren would be PERFECT for. The teacher is tough, challenging, and gets results. So I went and observed this class. It had kids with mixed disabilities, like UCLA. Some non-ambulatory kids along with kids who could walk. Soren would still be the most delayed, but I could see this teacher pushing him and helping him grow. THIS was now where I wanted him. But I feared that the only way I would get this was with the help of an advocate.

So after our frightening Epilepsy Support Group meeting, I emailed an advocate I had taken a class from at the Epilepsy Foundation. She had a possible conflict on the date of Soren's IEP, so I wrote a letter to GUSD asking to reschedule. Of course, the woman who does the schedule was on vacation until the next week. When I finally got in touch with her, the soonest date we could get was at the end of November!

Now, when I child turns three, the Regional Center is supposed to cut off the child's services at the end of that month. However, they are supposed to give you 30 days notice of this. This didn't happen, so we had an extension through the end of October. But with an IEP date in November, Soren would lose his therapy services, which was something we really didn't want to happen. I called our advocate to give her this update and FORTUNATELY, her other client had canceled on Soren's original IEP date so we were able to keep things as scheduled.

However, this meant that I had less than a week to get my act together. I had taken another class on preparing for the IEP and they recommend putting together a binder of all the child's reports and assessments. This is A LOT of paperwork. And I had only taken a tiny, pathetic stab at this. So, I went to my friend Julie and looked at her daughter's notebook. Of course it was GORGEOUS and the best organized thing ever! Cover sheets, colored charts, color-coded sleeves. I had my work cut out for me!

So the next week, I was copying, arranging, making up charts. I needed to request Soren's hearing report that was missing, Get a letter of equipment used at UCLA. Then I added pictures. When Soren graduated from UCLA they gave us a lovely photo album from his time there plus extra photos. I got binder photo pages and did an overview of Soren's activities so the team could see him "in action" with his peers. I put a big picture of our beautiful boy on the front, so nobody could forget who we were there for. I had numerous calls and email exchanges with our advocate. She read through all of Soren's information, did her own research into his diagnosis, and drew up an outline on what we wanted out of the IEP.

Now, while the school district gets to bring in their team to plead their case, we also get to bring in a team for our side to plead ours. This was myself, Aaron, our advocate, Soren's Vision Therapist, and Soren's OT. And it was GREAT having them there as backup confirming what Soren is like.

The day of the IEP came. I was nervous as hell. After the tales I'd been told, I feared being ambushed. And I'll just tell you right now, NOBODY on the GUSD Team set out to do that!!!! In fact, they all were WONDERFUL!!! I was relieved that my instincts were right and that everyone really did have Soren's best interests at heart. I understand that this isn't how it always goes. But we were lucky and all sides were working to get Soren what he needed. Still, we were REALLY GLAD we had our advocate. She was worth every dime!

The IEP meeting began with the GUSD Team going through Soren's scores from the standardized test I had taken. Whew, this was a hard thing to sit through. It's tough hearing that your child is developmentally only a 4 month old. In one thing, he was only a 1 month old! But then in others, he was an 18 month old, so we did have some variety. Once these results are read, everyone has to agree on what area or areas a child qualifies for Special Education under. Now we wanted him listed under Vision Impairment, Orthopedic Impairment, and Other Health Impaired. The GUSD Team wanted to add that he qualified under Mental Retardation.

And this is one of the places where our advocate came in handy. I stated that we didn't want that on Soren's record. Instead, we wanted him to be listed as having Global Developmental Delay. I gotta say, I NEVER expected to have to have a 10 minute conversation about this regarding my child. But our advocate really made our case, bringing up that Soren's test scores were varied--some at 4 months, some at 18 months, some at 12 months. With MR (Mental Retardation for those of you not in the know) test scores tend to be more flat-lined. She also brought up something called Apraxia. This is where the brain knows what it wants but can't get the communication through to the body to follow through. It can occur in people who have had strokes. Or seizures! Her suggestion was that Soren CAN make progress, it's just going to take more time because of his long battle with seizures. Everyone agreed to eliminating the MR category and listing him with global developmental delay.

The meeting then continued for 2 1/2 hours! All while we were sitting in little preschool chairs. Ouch!

The great news is that Soren was able to keep his current level of OT and PT with his longtime therapists off site. He would have equal Vision Therapy provided at school. Only his Speech Therapy was reduced--and only by a half hour. And, finally, he got placed in the College View class with the tough, results-oriented teacher! He would have the equipment he needed. The Assistive Technology Specialist was AMAZING and had great ideas for equipment to help Soren. Once we have an approved wheelchair, they will bus Soren to and from school and his therapies. And our advocate kept bringing up little details that we, as parents, would have NEVER known about and got things in writing (which is essential) for us.

AND they loved my pictures. I had even put in pictures of Soren in his equipment--the Vision Box and Universal Exercise Unit at Bright Minds. His new principal loved those two pieces and is trying to figure out how to raise funds to get them. I'm actually thinking of spear-heading getting the UEU for the school. I've dreamt of having one in our house, but we just don't have the room. Plus at school, it would benefit SO many kids. And we wouldn't have to drive to Brentwood to get Soren the Intensive Therapy. But it's a big ticket item--$5,000! So don't be surprised when I start hittin' y'all up for money again!

So after another week of my scrambling to get all of Soren's stuff prepared for school (doctor's forms, medications, earthquake supplies), Soren will be starting school on Tuesday!!!!!! It's a 5 day a week program from 9-2:30! With both my kids in school, I'm suddenly going to get a little of my life back (especially once Soren starts riding the bus)! We are thrilled, amazed, and appreciative of everyone on the GUSD Team, of Julie, of Soren's doctor's, teachers, and therapists who all helped us get the very best for this awesome boy!

And just think, we get to do it AGAIN NEXT YEAR!!!!! (AAAHHHHHHHH!!!!!)

Amy

Bouncing at Bright Minds

Here is more video from our therapy sessions at Bright Minds. This is Soren bouncing. You can see the Cage or Universal Exercise Unit. Soren is wearing a belt and attached to the cage with bungees. This makes it so he can be in three-dimentional space supporting his body upright, which he is doing very well here! Just a warning, the bouncing may make you a little dizzy (don't watch if you are prone to seizures--ha!).



FreeVideoCoding.com


Amy

Sitting at Bright Minds

In this video Soren is Ring Sitting--sitting with his legs in a circle and his feet touching. The trick here is to see how long he can do this without outside support. Also to see if he can correct himself with minimal assistance. What's great at the end is that he actually catches himself with his arms and pushes back up. As a side note, since Soren's intensive therapy, he's gotten MUCH better at Ring Sitting!



FreeVideoCoding.com

Belly to Back!

About 10 minutes ago, Soren went from his belly to his back for the first time all on his own!

He's been rolling to his belly more and more. But then he gets stuck. Unlike most kids, he would reach his arms out instead of tucking them under his body to use as leverage. He also doesn't tuck his legs under but lays them out flat.

Then since his Bright Minds therapy, he's been lifting his head and moving his face from side to side. He's also added tilting his pelvis back and forth, clearly wanting to scoot, but unable to. This has led him to getting very angry when he's on his belly. He wants to do more, but can't figure out how.

Then yesterday he was REALLY mad, lifting his head and upper body. I tucked his arms under, trying to show him what he SHOULD be doing. This made him even more mad. It's hard to watch because he is so angry. But it's anger at being frustrated at not being able to do something. And through that anger, I knew Soren would be driven to progress.

And he did just that today. Again he made it to his belly. But he kept his arms tucked under his torso. Then he started lifting his head and upper body up, moving his head from side to side again. Then he suddenly lifted force and turned his body back to his side. Once he was there, he rolled himself to his back. It was REMARKABLE!!!!!

Good work, Soren!

Amy

The Kindest Words

Yesterday I had to take Soren to Speech Therapy. Because of this, I wasn't able to pick Moira up from school. So my friend Pina picked Mo up when she was picking her own children up. She has three wonderful kids. A twin boy and girl who are in Mo's grade. The boy is in Mo's class. He is a sweetheart. The girl and Mo get along famously. Two girls who have brothers and need another girl around.

And then there's Pina's oldest son, Dominic, who is about 8 years old. I went to pick up Moira and chose to carry Soren in. Sometimes pullling out his stroller and hefting it up stairs is just too much. So I had Soren on my shoulder and Dominic came up to me and asked, "Do you have enough money to help him?"

I was stunned. I didn't expect this from a little boy. I thanked him for asking and told him, yes, we had enough to help Soren this December and again in June. And, thanks to everyone's generosity, it looks like we'll be able to go again December of 2007. That's 3 more injections!

And after what we saw this weekend we couldn't be more excited. Saturday morning we went to our Epilepsy Support Group. There we saw Clayton, the boy we first met who had had such success with the stem cell treatments. Well, he has now had 5 injections. When I saw him Saturday, I was stunned. He was sitting independently on the floor, perfectly balanced and in control of his body. When Aaron went to say hi to Clayton, Clayton got up, walked up to Aaron without assistance, and hugged him! This charged Aaron and I up SO much, giving us more hope for Soren's future.

But back to Dominic, after I told Dominic that we would have enough money to help Soren, Pina told me that Dominic liked Soren and worried about him. I told Dominic that Soren liked him too. Soren likes anyone who likes him.

But I was so touched by this boy's earnest question. Could we help Soren? And I could honestly tell him that we're doing everything we can to help Soren. And it's good to know there are people, young and old, checking in to see that we do.

Amy

Sock-Throwing Success!!!!!

We had a wonderful fundraiser last night at Occidental College's Keck Theater. The Burglars of Hamm did an amazing, extended performance of "Easy Targets." And we had a fantastic turnout.

I was a little nervous going in with only 37 reservations. And I was not sure which of those might just be donations and not actually ticket sales. I joined the Burglars in rehearsal and we bagged up 60 bags of socks, figuring that would be plenty.

But then MANY people showed up at the door, which was fantastic. I saw friends I never excepted to see. An old high school friend, friends from Singular Productions, a theater company I was a member of, CalArts friends, Oxy friends, work friends, even Soren's teacher from UCLA! A large number of students came, which I was really happy about. And as our sock-sellers were handing out the socks, we looked in the bins and saw that we were running out of our 60 bags. We ran backstage to find the extra duffel and bin of unbagged socks. Then we scrambled to find bags. It was the best problem to have!

Soon we were just handing people handfuls of socks. I think we sat over 100 people. The sock-sellers were working frantically between monologues to restock people's sock supplies.

And, MAN, can those audience members hit hard! When I sang my Vagina Song, there were moments my microphone protected me from a sock to the face. Though I got plenty of those as well. And I must say, in my return to the stage after 9 years, I had a blast. I sported an "I Heart Vaginas" T-shirt. I got swamped by socks on certain lines of the song. I heard groans of displeasure. It was great.

The rest of the Burglars--Albert, Carol, Matt, Jon, and special guest Pat--all gave FANTASTIC performances and were properly pummelled.

I thank the Burglars for their time, Occidental College for the beautiful theater of Keck, the Theater Department for the services of Brian Fitzmorris and the AMAZING crew--all of whom gave up their time free of charge for this event. These people know how to run a smooth show!

And to all of you!

On the money front, our presale tickets were $780. Then with the tickets at the door, sock selling, and a few on-sight donations, we made a little over $1,760 (I haven’t counted the loose change yet. Students were shelling out nickels and dimes to buy socks!). And donations from folks who couldn't make it to the show but wanted to contribute came to $4,090. That’s a total of $6,630! Not too shabby!

And with that, we met our $5,000 matching funds from The Talbert Family Foundation. Thank you, thank you, thank you to everyone for being so generous, for coming out, and for helping us with our beautiful son Soren!

Amy

Singing for my Soren

In less than a week we'll be having Soren's 2nd Stem Cell Fundraiser at Occidental College's Keck Theater.  The show is at 8 pm and is NOT for kids!

Why?

Well, for the first time in 9 years, I will be performing on stage!!!!!!

Yes, you've seen me perform karaoke. Yes, I've sung at Christmas parties and gatherings. But after retiring from acting to focus on writing, I will, on an official stage, be singing my now-infamous "Vagina Song."

Why am I stepping foot back on the stage? For my sweet son Soren, of course.

And, as a bonus, you get to throw socks at me while I do it! For those of you who love The Vagina Song, what better way to enjoy it than with a live musical accompaniment? For those of you who hate it, what better way to take revenge than to hurl socks at me while I sing?

So, this post is a less than subtle reminder to come to the fundraiser THIS SATURDAY, SEPTEMBER 9TH!

The Burglars of Hamm will be performing Easy Targets, their "solo shows that lets you throw." Within the line-up for that evening you get to throw socks at an actor impersonating Abe Lincoln (it's fun trying to knock off that freakin' hat), another doing very pompous Shakespearean piece, and yet another coming out--and stripping down--of the closet. Not to mention me singing about The Va-J-J. C'mon!

Tickets are $20. Bring extra ammo for more socks! (You will SO want them!) We've got 380 seats we can fill! Bring a friend (or 20!)

Go

here

to pre-buy tickets. Or, if you want to buy tickets at the door, I'll see you there!

Thank you all for your wonderful and neverending support!

Amy

The World: NOT WHEELCHAIR ACCESSIBLE!!!

Okay, so you don't notice how non-wheelchair accessible the world is until that is how you get your child (or yourself) around.

Just as an exercise, pay attention to this in your day. Make note of when you climb stairs, when you go over a ditch, when you aren't on smooth ground. I never made note of this previously, but now it is a pain in my butt.

Today, for instance. I was at Occidental College, my alma mater. I LOVE this place. My Mom taught there, I went there, it is in my blood. Before I went up to speak to the theater students up at Keck, I decided that some of my Mom's old co-workers might want to support her grandson. So I went to drop off flyers for Soren's fundraiser to the Math department. Sounds simple enough, right?

Wrong. Fowler Hall, where my Mom worked, is the most inaccessible place! I came from the quad (which at Oxy is not the far from the building I was going to. It's a small campus!) I realized I had to go into Coons, the administrative building to get up to Fowler because, otherwise, I would have to go upstairs. Well, I took the elevator up in Coons and then had to go down three stairs to get to the exit. LAME!

I four-by'ed Soren down the 3 stairs. Got out the door. 5 more steps I then had to GO DOWN! Then I rolled us to Fowler. Well, almost. There were 4 more steps I had to get down. BUT there was one of those "lifts" now used for old, inaccessible buildings. Mechanical contraptions that try to make the world wheelchair accessible but just look terrible. And to make this clunky thing worse, it wasn't freakin' working! So I four-by'ed it again down the steps.

We then went into the recently renovated Fowler Hall. My Mom worked here since the 70s. They renovated right before (and after) her death. Her office, over those many years was on the 4th Floor of Fowler. Those words are emblazoned in my brain. My Mom walked up and down those stairs every day of her working life. Though as she got sicker, this got more difficult. To accommodate this, her office was moved lower and lower, though the Math department is on the 3rd floor, so there was still at least one flight of steps she had to climb.

When the renovations were being planned, my Mom insisted that they put in an elevator. She fought hard for this and won. Unfortunately, she never got to ride in that much-needed elevator. But, thanks to her, her grandson can! Though, to get to the level with the elevator, you have to go up 6 more steps. Fortunately, there was a lift thing that actually worked to get us up to that level.

So we got to the offices, handed out the flyers, and headed back down. The elevator, then the lift. We were back outside. And here we ran into trouble. Though it's possible to go down steps with Soren's stroller, going up them is nearly impossible. I tried and tried. No go. I tried to reboot the lift. Nope. So we were stuck on this little island with no way to escape. Finally I begged a student to help me lift Soren to the mainland. Phew!

Then I had 5 more steps to muscle up. These were less steep then the others. I was wearing a sun dress and wedge heels. I kicked off my heels (the one day I don't wear shorts and flip-flops!) and pulled that 40 pound stroller carrying my 30 pound kid up those stairs. And it was hot in Eagle Rock yesterday so I was sweatin'.

Next time, I'm sending an email.

Soren's Site at sorenrogers.com!

Soren now has his own website!
Now besides having this blog, you can read information on Soren and get updates on

Soren's New Website!

There you can

make donations

and

learn about fundraising events!

A special thanks must go out to Cindy Morrow who thought of doing the site, contacted Julie Talbert at the Talbert Foundation to coordinate the donations pages, did all the programming, and put it on the web! Thanks Cindy!

Currently we have two fundraising efforts in the works besides just straight donations. As mentioned in the two posts below, animation cels are up for the bidding on eBay. Bid now!

And Soren's second fundraising event is September 9th at a show called Easy Targets! Buy tickets now by clicking on the button to your right!

Amy

Now on eBay: Animation Cels for Soren's Cells!

Hello all,

Sorry I haven't written for a bit. We've been on a much needed vacation in Hawaii. But I will write about that later. Today I want to tell you about Soren's latest fundraising "event."

My high school friend Anthony Butler had the great idea to sell animation cells and have all the proceeds go to Soren's cells. He has generously given his time to set this all up and run it! Thanks Anthony!

Currently there are 5 cels up on eBay donated by my friends Chris Battle and Randy Myers.

There are two signed Duckman cels and three unsigned Powerpuff cels. To check them out go to

Soren's eBay Auctions

Tell others! Bid high! The money goes to (in my opinion) a great cause!

Amy

THROW SOCKS FOR SOREN!!!

SOREN'S HAVING ANOTHER FUNDRAISER! HERE'S THE INFORMATION!!!!

THE TALBERT FAMILY FOUNDATION AND OCCIDENTAL COLLEGE PRESENT...

EASY TARGETS: THE SOLO SHOW THAT LETS YOU THROW!

“We perform horrible solo shows. You throw socks at us. Seriously.*” (*socks provided)

When: Saturday, September 9th at 8 pm
Where: Keck Theater at Occidental College
1600 Campus Road, L.A., Ca 90041
(Keck Theater is on Coons Road. No. 45 on the Campus Map.)
Price: $20 — includes a bag of socks for the throwing!

Bring extra cash to purchase more throwing ammo!

PRESALE TICKETS ARE TAX-DEDUCTIBLE THRU THE TALBERT FAMILY FOUNDATION. TFF IS MATCHING THE FIRST $5,000 WE RAISE. HELP US MEET THAT GOAL!
FOR TICKETS, GO TO

Throw Socks for Soren

TICKETS ALSO AVAILABLE AT THE BOX OFFICE THE NIGHT OF THE PERFORMANCE!

Thank you EVERYONE for your support! We hope to make this fundraiser a HUGE success!

Seizure-Free Sunday

Today was very, very different, in a good, good way.

Soren woke up talking, happy, and hungry. Aaron made blueberry scones for breakfast, which Soren enjoyed--both the batter and the fully baked scones.

He ate well, chatted, and moved his body about pretty much all day long. He took a cat-nap or two, as usual. He even tolerated his exercise regime set out by the the lovely ladies at Bright Minds (by that I mean that he didn't cry or fuss TOO much).

We actually had a lovely, mellow day. No seizures. Not even the threat of one.

I don't know why yesterday happened. I don't know that we'll ever know. I just know that I kept having thoughts of surgery and wishing that Soren was a cadidate. I cried a bit. Wished for any help for my dear boy.

But today was better. We even saw some smiles when we tickled him.

Amy

SAD-TURD-DAY

Well, our Satuday sucked-ass. Pardon my French, as my mother used to say.

Soren had 3 seizures, between 12 pm and 4:30 pm, today. Tonic seizures. Holding his breath and turning blue. And then knocking him out (post-ictal).

We contacted the pediatric neurologist on call who gave us the "okay" to increase his Lamictal 5mgs tomorrow morning. Let's cross our fingers that that does the trick. I'm all for trickery.

Any good thoughts and prayers would be appreciated.

xo
Amy

Hell Hath No Fury...

Like a mother scorned. And I was scorned today.

It’s one thing to just scorn me. But to scorn me regarding my children, in this case Soren, will not be tolerated.

Soren and I were dropping Moira off at camp this morning. This summer she is attending Camp with swimming every day at an aquatic center. My goal for her this summer is to have her water safe. It was my first time dropping her off. Aaron has been dropping her off since she started. But he had to get into work early. So it was a big deal to Moira that mommy was dropping her off instead of daddy.

I have a handicap placard because of Soren. It comes in handy when the parking is really narrow and I need to get him into his stroller, which is large and heavy. We are actually working on having our minivan reoutfitted removing the captain’s chair that came with the van leaving a space for his stroller (and eventually his wheelchair). Also we will have a ramp to just wheel him in and out.

So I parked in the handicap parking. I hefted Soren’s stroller out, loaded him up, and the three of us headed in to camp. That’s when this older man in swim trunks with a towel around his neck, asked me if I could answer something for him. “Sure!” I said, wide-eyed and happy to oblige.

“What makes it so that YOU can park in a handicap spot?” he asked in a bitter, accusatory tone.

A little taken aback I answered, “Because I have a disabled child.”

He looked at Soren’s stroller scornfully. “In that?” Soren’s stroller is often mistaken for the more expensive strollers on the market these days. And it is expensive. It was $1,700. Even a Bugaboo doesn’t cost that much.

My heart was pounding now. I couldn’t believe this man was confronting me at 8 am in front of my kids when I was taking my daughter to camp. But I hate for anyone to accuse me falsely. Especially in this situation. “Yes, in this,” I responded. “He has a severe form of epilepsy, is 2 ½ years old, and can’t walk,” I said.

“Sounds fishy to me,” he said as he turned his back and walked away. A total coward, picking a fight and then running away.

“And you’re a jerk!” I shouted. I will admit, it was a weak comeback. I wanted to call him an asshole, but Moira and other children were around. “You have no idea what my life is like!” I continued. But he was on way to swim.

So now I was flustered, tears in my eyes, and I still had to get Moira into camp. I dropped her off, still livid. Thinking of the million other things I could have or should have said. And as Soren and I left, we crossed paths with him again. And, being me, I refused to let this go. Though I was still polite (or wimpy).

“May I please tell you my son’s situation before you walk off?” I asked, desperately wanting to inform him that I’m not trying to cheat the system with my handicap placard. I mean, I'm not trying to pull a Paris Hilton.

“My son wears leg braces,” which Soren was wearing. “He cannot walk, talk, crawl, or feed himself and he may never will. This stroller is actually a wheelchair. And I’m sorry if you’re offended that I have a handicap placard, but I am 5 feet tall, this is a heavy chair, and he is a heavy boy.” Which is all the truth and on the up and up. I’ve ended up having to see the chiropractor because I keep tweaking my back carrying Soren around. Currently the placard is for Soren. But if I’m not careful, it will be for me.

He was still a little gruff with me, but began to back down. He explained that he has trouble with his legs; he’s in a lot of pain. His legs did look scarred up and rather spindly for such a tall, stocky man. I could see from his face that he was in pain.

I told him I appreciated that he was going to have to live with his pain for the rest of his life. But I was going to have to live with Soren’s situation for the rest of mine. And that meant that after I died, for all I knew, Soren would have to be in a home. Soren’s disability permitted him to the placard. And, thus, I got the placard.

By now I was in tears and he REALLY wanted to get away from me. He tried to apologize by brushing me off, but I wouldn’t let him off the hook. I told him that his accusations really upset me. Especially considering Soren’s situation, which he had NO idea about. I was freaking him out all the more. He made his final stab to get out. “Oh, he’ll be fine because he has you for a mother,” he said in attempt to make it all right. But he was really just trying to escape again. F’in’ coward.

My real point here is that he should have known better than to mess with a parent in regards to their child, disabled or not. I’ve found that people will take all sorts of shit when it’s just about them. Their boss can treat them like crap, their friends can backstab them, their family can be lame. People will tolerate all that.

But don’t go talking trash about someone’s kids. It's best to step back. Especially when stirring up the wrath of mom.

Much Better

After sleeping most of Saturday, Soren started coming round to his normal self on Sunday. He woke up cooing and kicking. Hungry. Eating great. Just the way we like him. It's interesting, while Soren doesn't do half the stuff a typical 2 year, 9 month old would do, we sure missed all the things he normally does while he was sick. He has a lot to say in his own way, he loves to wiggle, and eating is his true passion. All that was gone during the 4 day fever. I really missed the sound of his voice, even if he doesn't say any words. So I'm happy that my humming boy is back. I'm glad to see his legs a kicking. And he's turning to his side again, now that he has the energy.

Oh, an amazing thing happened when Soren was REALLY sick. I had put Soren on his side. He had rolled himself to his belly, trapping his arm beneath him as usual. He sneezed all this guck out of his nose. I went to wipe his nose. Now, I would have expected 1 of 2 reactions from Soren at this point. 1) He would be feeling SO crappy he'd let me just wipe his nose. or 2) Like any other kid, he'd try to avoid his nose being wiped. To avoid me, I would expect that he would push himself to his back, moving away from me. I know he can do this, so this would be a logical reaction.

Instead, Soren, who was still on his belly, lifted his head, and turned it away from me the opposite direction. I hope I'm making this clear. In all his therapies, when Soren is on his belly, he REFUSES to lift his head to look at a toy or any other stimulus. But when it came down to having his nose wiped, he mustered up the energy and the will to lift that head, turn it, and avoid me. It was very impressive and I wish you were all there to see it so you'd know what the heck I'm talking about.

Anyhow, today Soren and I are skipping school at UCLA so he can be at the top of his game for Intensive Therapy this afternoon. I hope to have pictures after today's session and I'll describe the whole thing.

Amy

Sick Soren

Soren has continued to be sick the rest of the week. His fever continued, not getting under 100 since Monday night. We did drugs, cool baths, more drugs. Finally I took him to his pediatrician. Soren is prone to ear infections, so I wanted to get his ears checked. And then I began to fear he'd aspirated some liquid and gotten an infection.

His ears are bascially fine (we went on antibiotics to be on the safe side) and his lungs were good as well. I was relieved. I feared we were going to have to check into the hospital.

Instead it turns out Soren got the 4 Day Fever that's been going around. And there's not much to do about it other than wait it out. So, since it started Monday night, it's supposed to be done by tonight. His temperature is actually normal today, so maybe he started the fever sooner than I noticed.

One good thing is that I didn't see any seizures since the one on Tuesday. And considering how sick and miserable he was, that's quite amazing. Now the trick is getting fluids in him. His throat is really raw. He even coughed up some blood early this morning. But he's liking Jello and had a banana for breakfast.

Anyhow, send good thoughts this little guy's way. He needs 'em.

Amy

For Pete's Sake!

I didn't write about this earlier because I was waiting to see what happened. On Saturday, after the fundraiser, Soren had another tonic seizure. Ugh! I called the neurologist on call to see if we should increase the medicine. He asked if there might have been something to have triggered the seizure.

Now typically, Soren does not have a "trigger" like strobe lights, swinging, or heat. He has a friend whose seizures used to be triggered by heat. This little boy would come to therapy only in his diaper because even wearing clothes would overheat him and trigger a seizure. But Soren's seizures always just sort of happened out of the blue, regardless of where we were or what we were doing.

BUT, when you have seizure control, seizures can be brought on by extreme situations, like heat or illness--something that can compromise a child's system causing the seizure resurface because the body is busy dealing with the other crap that's going on. Make sense? It upsets the old apple cart.

That day at Soren's fundraiser, it was REALLY FREAKIN' HOT! And since Soren doesn't drink water like a typical kid, he doesn't really have a way to cool himself down. So I told the doctor this and he said that due to that extreme situation, we should pause on increasing the medicine until we see more seizures. I was fine with this. Soren didn't seize Sunday or Monday, so we wrote this off as an educational experience to keep him out of excessive heat.

Then Soren spiked a fever Monday night. Otherwise he was his normal sweet self--no running nose, cough, vomiting. He was just hot. So we gave him Motrin and put him to bed. The next morning he was REALLY hot. I took his ear temperature (which is notoriously inaccurate) and he was at 103 in one ear and 104 in the other. I didn't do a rectal temp, which is much more accurate. I felt that was a little invasive for 6 am. I got more Motrin in him and put him in a cool bath. I cancelled his morning therapies.

BUT just this week, we started an intensive therapy program (which I'll describe in detail in another post). It's 3 hours a day, 5 days a week, for 3 weeks. We've been planning to do it for about a year now. It's in Brentwood from 1-4 pm, so I had to make sure Moira went to a camp with an aftercare program so I could haul my butt from Brentwood to Pasadena by 6 pm when camp closes. I had to cancel all Soren's afternoon therapies for 3 weeks. It's taken a lot of preparation and juggling.

So, even though Soren was feverish, I took him to his 2nd session yesterday. Besides being hot, he was still acting normal. Smiling, charming, cooing. They took it easy on him and he did great work, lasting the full 3 hours.

Then as we were driving home, Soren had another seizure. I hate when this happens because I'm driving and there is nothing I can do. I didn't even know it was happening until I heard Soren make a scary sound. I turned to look at him, and he was frozen, lips blue, barely breathing. I caught it on the tail end, because he took a gasp of air and came out of it.

When we got home, it all fell apart. Soren was hot. I drugged him some more. I gave him a cold bath. He was furious. I called my sister (the pediatrician) for advice. She said I was doing the right things. She also pointed out that the seizure Saturday could have been from him getting this virus. Certainly the one while driving was from that. I tried to feed Soren, but he only ate a little of his guacamole. Enough to get his Lamictal in. By now his nose was red, his eyes were puffy, and he looked like hell. I got him to drink most of his bottle and laid him down on the floor to rest while we ate.

Well, he threw up his guacamole, though he waited long enough that he kept his fluids in. Thankfully he's laying on his side most of the time now, so it all came out quite nicely. We put the poor boy to bed, knowing the best thing for him was sleep.

So here we are this morning. Soren still looks like crap. His nose is running like crazy, his eyes are still quite puffy, and he's still quite hot. I haven't seen a seizure yet.

Needless to say, I had to cancel all his therapies, including the intensive session that we've been waiting SO long to do. That's just the way things go, isn't it? For all his troubles with seizures, Soren is actually a rather healthy kid. He doesn't get colds very often, he's never had the stomach flu. But just when we schedule this thing we've been planning forever, looking for the "perfect" time, he's sicker than I've ever seen him (with a normal kid thing, that is).

Ah well. He'll get better. And we'll get the intensive therapy in when he is. Just another unexpected bump.

Amy

Fundraising Success at Oxy Children's Theater!

Our event today for Soren's Stem Cell Fund was a great success! In ticket sales, we raised $1,800!

Then, thanks to Sheri Alford's mom Lynne donating her delicious cookies, we raised an additional $87.00 (thanks to people giving donations along with their payment and Andy buying lots of cookies)! A special thanks goes to Sheri and her husband Ahmet for driving all the way from Temecula to pick up the cookies this morning and sell them!

That brought the grand total to $1,887! Not too shabby for a morning of children's theater!

And it is GREAT children's theater. The kids were laughing. The adults were laughing. And the actors were sweating. It was HOT today in Eagle Rock and my hat's off to those actors. They put their hearts, souls, and sweat into that show--tumbling, climbing, diving. They were absolutely great. And thanks to Jamie Angell, the brains behind Occidental Children's Theater, for letting us pre-sell tickets for Soren. We really appreciate it!

If you weren't able to make it or want to see it again, go to their website for information at

Occidental Children's Theater

Thank you everyone for getting up early and joining us this morning. It was lovely to see all the support we have for our sweet Soren. We are very lucky to have you all in our lives!

Amy

Soren's Fundraiser at Occidental Children's Theater

I know I've emailed all of you about this. Many have bought tickets (Thanks!). And many have made donations because they can't attend the performance (Thanks!). But here's yet another reminder for Soren's Stem Cell Fundraiser at Occidental Children's Theater's production of "Dracula and the Beanstalk."

The performance is this coming Saturday, July 8th at 10 am in Occidental College's Hillside Amphitheater. Tickets are $20 for adults and $10 for kids. All PRESALE tickets go to Soren's Stem Cell Fund. This means, only the tickets purchased PRIOR to the event go to Soren's Fund. If you come the day of the performance and buy tickets, the money goes to Occidental Children's Theater, which is also a VERY worthy cause since they do GREAT children's theater.

To get tickets, click on the BLUE button to your right. Your ticket price is TAX-DEDUCTIBLE!!! Wahoo!

And in case your wondering what Occidental Children's Theater does and what the heck "Dracula and the Beanstalk" is, this is a group of 6 actors that perform 3 fairy tale/folk tales from around the world and 1 original piece from Eagle Rock, Ca (this year, it's "Dracula and the Beanstalk.") Their only props are a quarter staff and a sash. And the performance is filled with tumbling, physicality, and audience participation. They are quite awesome and always get terrific reviews.

So, come if you can. We would love to see you there!

Amy

A Good Week

The GREAT news is that Soren has remained seizure-free all week!

After that, everything else is gravy. And the gravy has been pretty good as well. Part of the UCLA Intervention Program is that Soren is evaluated by a developmental pediatrian every six months. He had this 6 months ago and then had his second evaluation yesterday. What this means is that the doctor tries to see what progress Soren has made since the last visit. And I tend not to look at that kind of thing, so it was nice to have someone else put in in perspective.

Six months ago, Soren was still on Zonegran, and thus, still very drowsy at times. Now he is off it and MUCH more alert. Six months ago, Soren hadn't turned to his side. And while Soren still won't follow objects with his eyes or hold a toy in his grasp, there is one thing he does that ALWAYS impresses people.

He eats. He eats well. And he tends to sing and talk when he does it. And since we started feeding therapy (about 5 months ago), he is now taking bites of crackers, can drink thick liquids from a cup, and can negotiate a piece of food from one side of his mouth to the other (he prefers to chew on the right). These are skills he didn't have 6 months ago. And the doctor was HUGELY impressed.

It made me feel good. I forget that all these every day little things add up to a lot. Now we're working on him using a spoon (with our hand holding his hand) and him holding the cup (again, with assistance). I feel that if anything will motivate this boy to hold onto something, it's if it's food.

So, a good week. And over last week, I'll sure take it.

Amy

Good Monday

We had another seizure-free day! It was really wonderful.

Plus, Soren had a good day in general. After a week off from school, Soren went back to UCLA. They have a computer there with a very large button for Soren to press to activate the program. He was pressing the button with purpose, which is a positive change.

After school we went to visit Fyn in the hospital. He's looking good. Weary and sore, but good. Soren was being fussy, so we put him on Fyn's bed to stretch. Fyn said Soren smelled like frosting. I was confused by this until I realized that we put cocoa butter lotion on Soren every day. Fyn was right. Soren did smell like frosting.

Then Soren did a great job in Speech Therapy. His therapists are all finally figuring out what Soren is motivated by--food. We're getting him to stand for food (with support), look at pictures for food, and today we were working on the sign language sign for "more" with food.

Then this evening he was in a nasty, foul mood. I tried everything to settle him down. Snuggling, milk, but he wouldn't be consoled. It's funny, today at the hospital he was very fussy, wanting to get out of his stroller. But he wasn't crying. Fyn's mom Dayla asked if Soren ever really cried. And he usually doesn't. He doesn't get that emotional very often. But tonight he did. Just mad, red faced, tears, screaming and pissed off. And even though it was frustrating, it was good to see him just be fussy like a typical kid. Eventually he turned to his side and just passed out. Whatever was making him mad was over.

I'll keep you all up to speed on the seizures (or lack of them)!

Amy

Dark Day, Getting Better

It's been a very stressful 5 days. As I wrote earlier, Soren had 2 seizures on Wednesday. I contacted his doctor and got the okay to increase the Lamictal by 5 mg for his evening dose.

Then Thursday Soren had 5 seizures. Tonic again. 30 seconds each. Spaced out by about 3 hours. He was post-ictal after each one, quite wiped out. Though, once he got through that, he bounced back to his usual chipper, kicking self. I think I was more wiped out than him, not bouncing back quite as well. Plus Aaron had to work that night. I ended up calling him and crying my eyes out. I thought I was better, but then my sister called and I balled again. Then my friend Sheri called, and it happened once more. Just when I'd finally finished, Aaron came home early, having gotten excused from work.

Friday Soren had 2 seizures, one in front of friends who had never witnessed one, so that was a bummer.

Yesterday we only saw 1 in the morning. Then last night we were at some friends' house and Soren was an absolute charmer--talking, kicking, turning to his side. My fear is him regressing developmentally, losing the gains he has made. So far that doesn't seem to have happened.

Today I haven't seen any. He was laughing and smiling while I fed him his avocado. Big green grins. Silly goose.

So now I continue to watch like a hawk. It's rather nerve-wracking. I don't like to have him out of my sight even though there's nothing I can do once the seizure starts. I just want him to know that I'm here for him. And it appears that the increase in the Lamictal is doing it's job. Cross your fingers.

Amy

More Seizures

Soren had another seizure last night. He had it right before Aaron and I were about to go out. Since Soren hadn't had one in so long, it was the first time his babysitter ever saw one. Luckily we were there to make sure she knew what was going on. He was fine once it was done. He fell asleep as usual. I was, foolishly, hoping this would be the last we'd see.

But then he had another one during breakfast. Soren woke up really chipper, moving all about. He was eating great. And then he froze. I fished the food out of his mouth. He breathed through this one, though he still seemed to turn a little blue. Afterwards he conked out again. Now he has woken up and looks great.

It's hard. I need to be patient. We only increased his dosage last night. It will take a couple days to kick in, if it works. Hope with us that it does.

Amy

Seizure and EEG Results

Soren had a seizure today. One that I actually witnessed. His teacher had mentioned last week that he had one, but unless I see it, I don't believe it. I am The Queen of Denial. But this one was undeniable. He looked like an archer drawing back his bow. One arm was straight, the other was bent. He had a fixed gaze. His heart was racing. And so was mine. This is a tonic seizure.

It's interesting how the second I see that, I get so very sad. It just breaks my heart. The thing is, it's probably just because Soren is a growing boy and has surpassed his current dosage of Lamictal. I called his neurologist and got the okay to increase his evening dose. We'll see how he does in three days or so. I trust that it will be fine. But still, the thought of going back to when he was seizing every day is too overwhelming to fathom.

In talking with his doctor, I also got Soren's EEG results from last week. Pretty much the same. He has a "spike wave on the right" which could indicate that he could be a surgical candidate in the future--but no guarantee. There was also a little bit of spiking on the left, but not as much. There was no sign of hypsarythmia, which is fantastic! That's 2 EEGs without that! And while last time he had background slowing, this time he only had "intermittent" background slowing. I'm hoping this is indicative of the development we've been seeing.

So, some bad, some good. Some frustration, some hope.

Amy

The Talbert Family Foundation

The Talbert Family Foundation

is an amazing organization that, in their words, "is dedicated to providing financial assistance to local families with members suffering from catastrophic illnesses, primarily cancer. We try to locate families that need financial assistance and provide funds without any strings attached through a program we call "TFF Kids"."

Now, while Soren does not have cancer, we found out about this foundation through an amazing little boy who does.

Previously I wrote about

FYN

and his diagnosis of cancer and current battle to beat it. And he is doing a GREAT job of it. In fact, his chemo has worked so well, he is having surgery tomorrow to remove some of the tumor. So please, please, PLEASE keep him in your thoughts. The Talbert Family Foundation found Fyn. In finding Fyn, they found Fyn's generous mom, Dayla. Dayla then directed them towards us because, while Soren doesn't have cancer, his illness is VERY catastrophic.

Julie Talbert and I then found each other and Julie welcomed Soren in as a TFF Kid. What does this mean? This means that Soren can now receive TAX-DEDUCTIBLE DONATIONS through their foundation. And every dime of that donation goes to Soren. They don't take a cut. They don't scim off the top. They don't even take a little off the back end. Instead, they provide an option for people who may not have the time or energy to do the paperwork to set up a foundation. Yet, these kids and their families get the benefits of tax-deductible donations.

And as if that isn't generous enough, The Talbert Family Foundation is going to match the first $5,000 that we get donated! This totally blows me away. And this is through regular donations or tickets to "Dracula and the Beanstalk."

So, I want to thank Fyn, whose powerful battle led us to these people, Dayla for guiding them to Soren, Cindy for changing Soren's donation pages AGAIN to accomodate the change, Julie Talbert, her family, and the entire The Talbert Family Foundation for welcoming our little boy as a TFF Kid.

Amy

EEG Tomorrow, Comedy Tonight!

Yes, Soren is scheduled for an EEG tomorrow. His last EEG was in November. It showed some positive and negatives. The positive was that he no longer had hypsarythmia, the tell-tale indicator for Infantile Spasms. Now, this either means that Soren's meds (the Lamictal and Zonegran at that time) had stifled the hypsarythmia. Or he had outgrown the Infantile Spasms, which, indicative in the name, can happen. The problem then is that, if the seizures are not under control, the child just segues into another form of seizure disorder.

The negative was that Soren had (as I recall) "spike-wave tendencies" which means that he was prone to seizures. Which we kinda knew. But, still, it was on the EEG, which meant we were not out of the woods. Not that we thought we were. This was just a harsh reminder in concrete medical testing.

Oh, it also showed that Soren had a "slow background." Meaning that he was developing slowly. Something we also knew. But nothing like reality biting you in the ass as a reminder.

So now that he's been seizure-free for over a year and only on one AED, we (Aaron, me, and Soren's neurologist) felt it was time to see what was going on in that brain of Soren's.

Now for the COMEDY portion of the evening. In EEGs past, my biggest challenge was not feeding Soren in the morning so that he could get a "sleepy" medicine on an empty stomach. See, one of the goals in doing an EEG is to have the patient awake for one portion and asleep for another. Brain waves act differently depending if you are awake or asleep. And many seizures are activated (or aggravated) during transitions in sleep. Infantile Spasms are known for this. So, in tests past, Soren was allowed a full night's sleep, just no food in the morning. Then he was given medicine which would make him sleep part-way through the test.

BUT TOMORROW'S TEST IS DIFFERENT. For some reason, there is no sleepy medicine. Instead, I'm supposed to only allow Soren 4 HOURS SLEEP!!!! Okay, for any of you who know Soren, you realize what a joke this is. For those of you who don't, let me fill you in. Soren could be in a freakin' war zone and, if he wanted to sleep, he'd f'in' sleep. He's slept at parties. He's slept while eating. He purposely sleeps during therapies as a defense mechanism.

And, of course, he's been about as animated and goofy today as possible, taking no naps whatsoever. Soren has NEVER had a set nap schedule. After all, he's been on drugs most of his life that FORCE him to sleep. But today, for whatever reason, he has been laughing his ass off. He's been ticklish, cute, responsive. It's actually been quite a lovely day. But now, go figure, he's a little tired. I put the kids to bed, and he was laughing again, so I took him out so Mo could sleep. He giggled and wiggled for a while. But, as I've been writing this, he has dropped off. I've gone over twice to shake him awake. And he is out again. I'm not worrying too much because he's prone to cat naps and will hopefully wake up in about 20 minutes.

But still, 4 hours! That means that Aaron and I get 4 hours. Then I'm supposed to drive to UCLA? Good thing it'll be 7 am when the roads are clear. Just note, L.A. drivers, I'll be on the road in the morning with 4 hours sleep, so watch out! And then they've actually asked me to keep Soren awake DURING THE DRIVE. HAH! I know parents who purposely put their strung-out kids in the car and drive them around to put them to sleep. Driving in the car is the universal tranquilizer. But still, tomorrow Soren's caregiver will be in the car to poke at him during the drive, as if that is going to help "the child who will not be woken."

And, to be honest, I'm a little nervous about what the test will show. Soren's teacher at UCLA said she saw a seizure on Monday. Her description fit the bill. But I've seen nothing since then. And, like I said, he's been nothing but hilarious. So we'll see. Cross your fingers for us that it was just a freak thing.

All I know is that a repeat of "Lost," my TiVo'ed "Queer Eye," and my Netflixed Jackie Chan "The Tuxedo" are waiting for me to keep me up until the wee hours. And then there's the 4 am walk Soren and I will be going on. If you live in my neighborhood, watch out for the crazy lady with the stroller walking in the dark trying to keep her kid awake.

Oh, and Soren just woke up from his cat-nap. That's 20 minutes of his 4 hours. He's only allowed 3 hours and 40 minutes now. I better keep a tally.

Amy

Ahead with Horses Fun Day!

Hello All,

I should have posted this a LONG time ago. BUT, if you aren't doing anything Sunday and feel like driving to Sun Valley to see some kids on horses, come to the

Ahead with Horses Fun Day

The address is 9311 DEL ARROYO DRIVE, SUN VALLEY, CALIFORNIA 91352. You'll have to park down at the school and then bus up because of the number of people that come. But it's going to be a blast!

Let me tell you about Ahead with Horses, which has a link on the right sidebar. They are an AMAZING organization. Soren rides a horse once a week at Ahead with Horses. It's a form of physical therapy. The theory is that, for children like Soren that don't walk, getting the horses movement into their body helps them connect with that movement. Then, for more able bodied kids, it helps them with balance. I've seen kids standing on the horses doing "tricks." It's really cool.

Ahead with Horses helps kids with varying disabilities--kids like Soren, kids with CP, kids with ADHD. They run the gammut.

So, if you want to come to the Fun Day on Sunday, it starts at 11:00. Soren will be in a presentation where he rides a horse at 1:00. There's food, games, and general merriment. I have FREE tickets if you want them. If you want to pay at the door, it's $12 for adults and $6 for kids.

If you just want to donate to this amazing organization (I know, all I do is ask for money), click

here

I'll post pictures of Soren's ride!

Amy

People Helping People

Are the luckiest people in the world. And most often, this is merely through words. I have sent Soren's message out to many, many people. To my family. To my closest friends. To friends I have not spoken to in 15 to 20 years. Yet all I hear is kindness. And those words of kindness help me get through the day.

We have a tradition at our house of Friday Pizza and Movie Night. It originated from my not wanting to cook on Friday. And pizza being Moira's favorite food. Then we added wanting to see friends and the ease of having pizza. When kids come over, they eat pizza and watch a movie. The grown-ups eat pizza and catch-up. So we've had some friends over, some delicious pizza, some fun movies, and some great conversation.

This Friday, we were treated to Friday Pizza and Movie Night at our friends the Savinos. Delicious pizza. Wonderful conversation. And while Moira played with Chris and Beth's lovely boys, Vinnie and Nicky, Chris and Beth got to witness Soren's amazing progress. This helped Aaron and I see how far Soren had come.

And then there have been my friends from college (Oxy) and high school (Chaminade). On this coming Saturday, I will be having my 15th college reunion. Aaron and I are having an Oxy Theater Reunion at our house, so people are finding out about our travails with Soren. I have gotten such wonderful words of encouragement, it's amazing.

I also wanted to inform my high school classmates about Soren's condition as well. I think people should be honest and up front about the struggles in their lives. Afterall, most people have them. And I have gotten such wonderful emails from people. People that I haven't spoken to in years. People that are also struggling with their own, life-altering issues. I want to thank them for writing to me to give me encouragement. And I hope, in return, I have given them encouragement as well. Because, in the end, that's what it's all about.

It's about helping people. Through our words. Through our kindness. Those things can take people through to the next day. They can give others hope when they feel hopeless, which I know, I so often do. But the words help. So I thank you all for them. For the words. They really make a difference. So...

Thank you,

Amy

The Amazing Camille

As I wrote earlier, back when we were being evaluated on how to treat Soren's Infantile Spasms, Soren was admitted into UCLA for observation. Here he met a beautiful little girl only a few weeks younger than him named Camille who was, unfortunately, further along in her journey with Epilepsy. Along with Camille, we met her fantastic parents, Julie and Steve. Again, in a previous blog, I fully admitted to cheating off Julie's paper, taking all that she'd learned about Epilepsy and applying what I could to Soren. And, to be perfectly honest, one of the reasons it took me so long to ask for help was because, seeing what Camille has gone through so far in her short life, I felt that, in comparison, we didn't have room to complain.

Camille has many elements to her diagnosis. Besides Infantile Spasms, she has been diagnosed with Cerebral Palsey, Cortical Visual Impairment, she has a feeding tube that has caused her many issues and prolonged hospital stays, she has a Dysphagia, which is a swallowing disorder, Gastroesophageal Reflux Disease, and Immunodeficieny. It appears that it is Camille's Immunodeficiency that is causing her Epilepsy. Currently, Camille receives monthly infusions of IVIg (Intravenous Immunoglobulins) to treat her Immunodeficiency (Hypogammaglobulinemia) and to control her seizures. The great news is that Camille has achieved seizure control with high dose IVIg treatment.

Like Soren, Camille's Infantile Spasms have caused global developmental delay. So she also does a full spectrum of therapies to build her strength and further her development. And I must say, she is one of the most amazing kids I've met. Despite many hospital stays and over 1000 seizures at her worst, Camille continues to get stronger and more interactive. Camille gives me lots of hope with her strength and willpower.

Please check out

Camille's Website

which, because Julie put it together, is CHOCK FULL of information on Epilepsy, Treatments, and a sobering

video

that really helps educate how devastating intractable seizures are.

Amy

The Sith Witch

After Soren's first stem cell injection in January of '05, he was still in a rather bad place. He was on two AEDs which were not stopping the seizures and had the side effects of being appetite suppressants, so he wasn't eating well and was losing weight. Now, this was rather tricky. As you could see from the pictures in earlier posts, Soren had A LOT of weight to lose after the Summer of Steroids. Once we stopped the steroids, Soren slowed down his eating and was feeding off his own fat. But then, on these two drugs, he was just shutting down. Before our first stem cell injection, we went to the neurologist and got him checked out and weighed in. Two weeks after the injection, we returned to the neurologist. Soren had LOST about 5 pounds. That's NOT what kids his age do. So, though we wanted to have a somewhat controlled experiment as far as the stem cells went, we just couldn't. We had to get him off one of these drugs. So we started weaning him off Topomax (or Dopomax, as the moms call it) to make sure he didn't keep losing weight. Still, in order to get enough calories in him, he had to drink Pediasure three times a day.

As for the stem cells, while we saw some progress, we knew we needed to keep trying alternative options while we were waiting for them to take full effect, if we were lucky enough for them to have any effect at all.

So we went to an osteopath. Now, let me say up front that I have nothing against osteopaths. I don't want osteopathic hate mail here, for Pete's sake. I wouldn't go taking my son to someone who I thought would harm him. That being said, we dubbed this osteopath the Sith Witch for a reason. While she was the size, shape, and age of Yoda, she had the bedside manner of the Emperor. She was pure evil.

Now, I know some of my fellow parents who have taken their children to her may feel I am gilding the lily. But, I speak from my experience, and there is no lily gilding going on here. First of all, anybody who goes to her is DESPERATE, just like we were. You have to make an appointment, which, because there are so many sick kids with so many desperate parents, is MONTHS in advance. Then, IF she accepts to take your child, you have to go weekly for about 6 weeks. So you set up those appointments as well, just in case you're "lucky" and she accepts your kid.

Then you have to get there. I know people who have traveled across the country to see this woman. For us, it was merely a trip heading south. I will say no more as to her exact location and personage for fear of defamation of character or the Sith Witch cursing me in my sleep.

We made our appointments. We took Moira out of preschool since it was going to be an all day excursion. And we all piled into the car for the journey. When we arrived, I was taken into a room--ALONE. And there I was quizzed by the Sith Witch. Now, as the mother of Soren, the person who carried him inside her for 9 months, I had gotten used to being asked questions about my pregnancy with this now debilitated child. I didn't like it, but I was used to it. How did the pregnancy go? Did anything unusual happen? Did I take folic acid? Did I drink? Do drugs? Smoke? Blah, blah, blah. No, no, no. Normal pregnancy. Get off my back!

But the Sith Witch had a way of asking this questions that put such blame on me it was horrid. When she found out that I had Soren by scheduled C-section, it was as if I had taken the knife and cut him out myself. Doctors often ask about the birth because there could have been birth trauma that caused the seizures. Well, since he had no birth trauma, this isn't the answer. But the Sith Witch couldn't just leave it at that. "You mean you never went into labor?" she asked horrified. Um, no, I didn't. I went through enough freakin' labor with the first kid who was then born by EMERGENCY C-section. Talk about trauma. I wasn't going to go through that again!

Then I told her that I had experienced some Braxton-Hicks contractions weeks prior to Soren's birth. "How did you know it wasn't actual labor?" Excuse me? Because I've been in actual labor, bitch, and this wasn't it! In actual labor, I feel like my eyes are going to come out of my ass. I think I know the difference.

Next was breast-feeding. Now Soren never caught on to breast-feeding. I tried for 3 weeks. I had to go back to work after 6 weeks. So after 3, I admit it, I gave up. So while he didn't get the benefits of sucking on mama's teat, I pumped milk for 6 months from those engorged babies, so Soren got plenty of the good stuff and my boobs have paid the price. But did the Sith Witch appreciate this? Did she realized I'd sacrificed all I could for my child? No, I was clearly a horrid mother who did not try hard enough to nurse my child. But again, THAT was NOT the cause of his seizures. I know kids who nursed 'til the cows came home, but still had seizures. So lay off!

And it continued with my being horrible for feeding him baby food from a jar (while I admitted I did as much fresh as I could and the jar was not the norm) to her saying that I was having him do too many therapies all once.

After grilling me within an inch of my life, she then took Soren into a room on his own. Alone. Aaron and I were not allowed in. This is how she did her assessment and how, if he was deemed worthy, she would do her "sessions." For all we know, she was smokin' crack and playing solitaire. While the Sith Witch assessed Soren, I told Aaron, trying not to break down, that I hated the thought of returning to this place after what she put me through. But I would do it for Soren. After her private time with Soren, she spoke to Aaron and me together (the kids were being watched by an assistant). She said that she would take this case on. However, she was concerned with the lack of fresh food (whatever).

In the end, we smiled and shook hands, paid our money, piled back into our mini van, and got as far from the Sith Witch as quickly as we possibly could. Again, I told Aaron that if we had to do this, I would be strong and do it. The drive, the humilation and accusations. If it helped Soren, I would do it. But as I drove, Aaron made the executive decision that the Sith Witch was not going to help our son. He called on his mobile phone, canceling all our future appointments.

We've all heard of the Wicked Witches of the East and the West. And good Glinda of the North. But we've never heard of the witch that resided in the South. Well, I've met her. The Sith Witch of the South lives. I do hope someone drops a house on her very soon.

Amy