DR 5: Stem Cell Treatment

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

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

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

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

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

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

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

Last up, our return trip home!

Amy

DR 5: Casa del Mar

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

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

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

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

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

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

Amy

DR 5: MIA Airport

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

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

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

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

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

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

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

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

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

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

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

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

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

Amy

DR 5: South Beach

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

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

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

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

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

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

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

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

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

Amy

5th Trip to the DR

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

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

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

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

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

I'll update you when we return!

Amy

My Classmate Diana

Hey Everyone!

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

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

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

So check out

Diana's ABC News Report

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

Amy

Slacking Off

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

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

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

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

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

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

Amy

Thanksgiving

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

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

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

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

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

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

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

Happy Thanksgiving!

Amy

Seizures and The Brain Storm Summit

Hey everyone,

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

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

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

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

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

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

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

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

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

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

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

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

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

Amy

The Bumbo: Parental Intelligence Required

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

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

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

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

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

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

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

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

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

Amy

Karis Update

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

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

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

Amy

Prayers for Soren's Cousin Karis

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

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

Thank you all!

Amy

Noah's Ark at The Skirball Center

Soren and Moira had the day off from school today so we went to the Noah's Ark exhibit at The Skirball Center. It was amazing. It's bascially this interactive play place for kids. There are things to climb on, wheels to spin, cranks to turn, things to touch, and a craft project.

I'd like to say that Soren had a great time, but today was a day when it overwhelmed him. There was a lot of noise and tons to look at, so I can't blame him. Still, on another day, I could see him totally digging it. He did complete the craft project with me, which was nice.

Moira, on the other hand, had a blast. We were there for an hour and a half and she could have stayed longer. Regardless of Soren's reaction, if you have a special needs kid or a typical kid, I would totally recommend it. The space is all wheelchair accessible (granted, if your child can walk and climb, there are a few more things to do). But it's easy to get around and quite inviting.

The staff was great getting kids involved in stuff. They even have fake poop to scoop. That cracked me up. But that's the reality of the ark. At one point, they called a musical circle time where we all got instruments and played games. This is when Soren shut down completely. Rather typical for him (well, not typical typical, but you know what I mean). I got him out of his seat, sat with him on the floor, and he was bucking like a bronco into my chest plate because of the noise. Then he conked out and slumped over through 95% of the activity. At the end, he woke up and actually tolerated me hitting his hands on the drum.

But really, if you're here in L.A., you should go. And take your time. There is more to see than you realize. The animals are all made out of cool, recyclable materials. It's fun to see what they did. I have no idea if it's a permanent exhibit. You have to get reservations ahead of time to enter. You can do this online or by phone. I had Soren touching and doing various things so it was a stimulating learning experience (albeit a frustrating one). He talked all the way home. Probably saying, "What the hey was that, Mom!" But still, better to get a reaction, even if it's a negative one.

Amy

Catching Up!

Whew! It's been a busy time. I'm sorry I haven't posted in a bit. My 20 year high school reunion is this weekend and I'm on the committee, so I've had that. Then Soren's 2nd IEP was last Friday, so I had to prepare his binder. And Soren's been having a bit of a rough time with seizures. So, finally, I'm here to catch you up on all of that (well, not my reunion, though that's been quite a to-do!).

The IEP went VERY well. We had our advocate there, which was really good because, as a parent, it's hard to be objective and think of all the questions you should ask. I had put Soren's binder of information together. That was much easier than last time, but still time consuming. I even wondered whether I should bother. Last year, nobody knew Soren. This year we were just trying to get him to continue with the same services.

But, as usual, I'm glad I did the binder. While they had all the PT and OT reports, I have been keeping a log of Soren's medical stuff (testing, seizures) so I was able to give them that update. And then there was his Feeding Therapy Report, which they didn't have because it isn't one of their services. It's paid for by the Regional Center. So it was good to be prepared.

We got everything Soren needed. Since they now know him well, we were able to set realistic goals for his progress. It all went exactly as I'd hoped.

As for Soren's seizures, last Thursday he had two, then Friday had one, Saturday two, Sunday one, Monday one. So it's been a roller coaster. They've only been Tonic seizures. And they seem to be knocking him out for less time. The Friday of Soren's IEP, he had a seizure in the morning, but then went to school and had no others. We haven't had to give him Diastat because he hasn't been looping. Still, it puts me on edge. He (knock wood) hasn't had any seizures since Monday.

Soren also had his 4 year pediatric check up yesterday. Besides his brain, this kid is healthy is a horse. Good heart, good lungs, growing (and growing, and growing).

Next week (after the reunion is done) I begin to tackle new Soren projects--getting ramps for the house, getting the van retro-fitted for a wheelchair, getting his tests off to different hospitals, getting him into the Clobazam study. Whew!

So I'm going to whoop it up this weekend to prepare for my next battles.

Amy

20 Days

As I noted earlier, after Soren's last round of seizures on September 8th, we increased his evening dose of Zonegran. We then went 20 days without seizures. I commented to Aaron about this. Shoulda known better, hunh?

Saturday morning, when Aaron went to check on Soren, he was really pokey. He was sleeping WAY past his usual breakfast time. And sure enough, when I finally got him up, he had a seizure during breakfast. Thus, we are quite confident that he had a seizure before Aaron went in Soren's room.

So once again, we had to give him Diastat. And then we increased his morning dose of Zonegran the next day. That brings him back up to the original 50 mgs twice a day that he was on when we first started the Lamictal. Let's see if that does the trick.

If not, we may check out a drug called Clobazam. It's not approved here in the US (it is in other countries), but LA Children's Hospital is doing a study on it. Soren may be a candidate, so we're going to give a call.

Clobazam is a derivative of Diazapam, which is the drug in Diastat. Diazapam is commonly known as Valium. The problem with Diazapam and thus Diastat is that a tolerance can be built to the drug. Thus, it can't be used every day because it loses its efficasy.

However, in Clobazam, part of its "derivative" nature is that they have removed this tolerance-building element. That's good! The other good thing is that kids who respond well to Diazapam tend to respond well to Clobazam. Soren responds great to Diazapam, so if he's a candidate, this may be a new option for him.

On another note, I want to thank everyone who has been donating money to Soren's Fund. I don't know if it's because it was his birthday or just because everyone is wonderfully generous. Either way, the money is coming in VERY handy for this next trip to the DR. Our funds are running low and every little bit (or big bit!) helps!

THANKS!!!!!

Amy

Still Struggling

When last I posted, Soren had had some seizures, we'd given him Diastat, and increased his Zonegran.

On Tuesday, Soren returned to school. As a side note, Moira also returned on the same day, starting 2nd grade! Big girl!

The week went well for both. However, on Thursday night before bed, Soren had a brief Tonic seizure. Nothing big, but still, a seizure. Then Friday morning, right before I was going to put him on the bus, he had a Tonic-Clonic. Hopeful and determined that this would be all that he had, I put him on the bus and sent him to school. (I sent a note telling them what had happened.)

I was nervous the entire day while running my various errands, but received no call about Soren's seizures and when he arrived home, there was no note saying he had seized during the day.

But Saturday we had a BIG day planned. Aaron and I had an event to go to so we were dropping the kids off at Grandpa Denny's for the day/night. Sure enough, Soren had a seizure first thing. Then another not long after. Aaron and I decided Diastat was needed, so we dosed him up. The seizures stopped and Soren was well the rest of the day. So well that he had a great, seizure-free day at Grandpa Denny's kicking and happy. Mo had a great time in the pool!

The drag is that we had to give him Diastat last week as well. This is NOT something we like to do on a weekly basis! On Thursday I can increase his Zonegran again. Let's hope that gives us more control, 'cause we're not getting it now!

Amy

Jinxing Ourselves

So, as soon as I write how well Soren is doing, he has a seizure. It's as if he hears what we are saying and sets out to thwart us. I know this isn't actually true. It's just a coincidence.

Nonetheless, on Wednesday, Soren had a seizure while at camp. Moira and I had a bunch of things we planned to do at this time. Well, the seizure threw me for a loop (you'd think I'd be used to it by now) and our day got all messed up because we had to pick Soren up early. He had one other seizure that day.

Thursday morning, he had another seizure, so I canceled him going to camp. Since I was basically expecting the seizures that day, I wasn't as frazzled. By his third seizure, I gave him Diastat, which knocked him out and reset his brain.

Friday was actually a good day for us all. Mo, Soren, and I even went to see Hairspray (something we were supposed to do on Wednesday-seizure day).

Oh, and we increased his Zonegran Friday morning after Soren's bad day on Thursday. So far, it's not zoning him out. In fact, he had a great weekend including a fun swim in Grandpa Denny's pool today. We'll see if this increase takes us a step closer to seizure control. But I'm not going to jinx it.

Amy

One Week at a Time

We added the dose of Zonegran to Soren's meds a little over a week ago. The day after we added it, he had a couple brief tonic seizures. But since then, he's been good. Not any more drowsy than usual and currently no seizures. I can't say that it's the Zonegran per se, but I'll take a week of no seizures for whatever reason.

Amy

Shameless Self-Promotion

I know this is a blog about Soren. But since lots of friends and family read this, I figured this was the easiest way to get the word out that the episode of Danny Phantom that I wrote will be airing for the first time this Friday, September 24th, on Nickelodeon!

It's called "D-Stabilized" and will be showing at 1:00 EST and 4:00 PST, but check your local listings.

I actually started writing it back in December of 2005 and, with changes and punch-ups, had a final script by April 2006. Then all the drawing and animating had to happen, which takes some time. I haven't seen the final product and am really excited that it's airing!

So check it out if you're interested. It's a fun show and I felt really lucky to have a chance to write on it before their final season ended.

Amy

The Results

We finally got our call from Soren's pediatric neurologist today. Unfortunately, it was not the news we wanted, but it was the news that we had figured. The test results are not definitive enough to perform surgery.

The EEG showed that there are more things going on in the left posterior of Soren's brain than the right. But there are still things going on in the right.

The PET scan showed diffused abnormality, but more on the left than the right.

And the MRI was also "diffusely abnormal" with no clear area to perform surgery on.

So they felt that performing surgery on Soren would not clearly benefit him.

But, this is, of course, not the final word. We now plan to get copies of the tests and get 2nd opinions. You never know if somebody might see something differently. And there are certain surgeons out there who are willing to try something more "daring."

We also went to Soren's pediatric neuro ophthalmologist today for a check up. While he could see that Soren's eyes were still good and straight, he was disappointed that Soren had not made more progress as far as looking at objects when asked. Of course, Soren is more than happy to LOOK AWAY from an object when asked. And whenever the doctor turned away to get a new toy, Soren would look straight at him. Stubborn, opinionated, and crafty. Aaron and I wonder where he could have possibly gotten those traits.

As usual, the "answer" to all this is better seizure control. Which is why we are now considering putting Soren back on a low dose of Zonegran to combine with the Lamictal he is already on. We had a good year of seizure control when he was on these two drugs, though we thought it was just the Lamictal that was helping. When we weaned him from the Zonegran, he became much more alert. But a month after he was off the Zonegran, his seizures started slowly coming back.

So there we are, with more information, but still in the same place. Frustrating, but we move forward.

Amy

Still Little News

After harassing the crap out of the UCLA peds neuro folks, I finally spoke with a doctor. Unfortunately, it wasn't Soren's doctor! His doctor is out of town until this Tuesday. FRUSTRATING!!!!!

So the doctor on call told me basically the same old stuff. The MRI showed nothing. The PET scan showed that "the left temporal lobe had decreased metabolism." And she didn't have anything on the EEG. So actually, it was less news!

I asked if she could tell me what was said when the surgical team discussed his case. She said she couldn't because since Soren isn't her patient and everyone talks really quickly, she didn't catch what they said about him. It's the responsibility of the child's physician.

Argh! I have messages into his doctor for when he returns on Tuesday. I'm sure he'll be swamped with other annoyed and anxious parents, so who knows when I'll hear from him.

That all said, Soren has a cold and had a crappy day yesterday. After 6 seizures, I gave him Diastat and knocked him out. He's still sick today, but no seizures so far. In typical "feeling lousy" behavior, he's not eating much, but still drinking his almond milk. Right now he's kicking and happy on the floor and less covered in snot than yesterday.

Amy

Still Nuthin'

Sorry it's been a week with no news, but nobody has gotten back to us! I've put in my calls and plan to bug more people tomorrow. But until somebody tells me something, I have nothing to report.

Soren's been having a few tonic and tonic-clonic seizures every couple days. It's tending to just be one or two. Not anything "major" where we have to reboot him with the Diastat. Not that it makes those seizures any less stressful. I was actually at a writing class the past four days while Aaron took care of the kids. He's the one who had to deal with the stress of it all.

In other, non-test result news, we're planning for our December trip to the DR. For now, this will be our last. This is mainly because we will run out of the funds we've raised! But we got three treatments out of that money, so thanks to you all!

The other reason this will be the last for now is that we want to let things percolate in Soren--see how his development goes after this 5th injection, weigh this treatment with other therapies.

Anyhow, that's where we are today. Again, I promise to write when we have a test update.

Amy

No News is, well, No News

I'm sure, like us, you are waiting to hear what the results are from Soren's testing. And I would like to tell you, but nobody has contacted us yet. I'm trying not to freak out or get too bummed about this. However, I don't think I'm doing a very good job since I have a big old tension headache just thinking about what his doctor will say.

Anyhow, I will post once I have news of any sort.

Amy

Back from the Hospital!

We actually were discharged yesterday and were home in time for dinner because Soren performed so well!

We were admitted on Monday afternoon. Soren was hooked up to the EEG/telemetry and his PET scan was scheduled for the next morning at 8 am. Their plan was to get that scan before Soren had any seizures. Once the scan was done, we were going to drop out Soren's drugs and get seizures on record.

Well, Soren had a different plan. After We an uneventful night (though not really very restful), they took Soren off right on time for his scan. He hadn't had his morning meds yet and I thought it might be better to get them in after the scan. They got the IV into his arm and as they were stabilizing it, Soren had a seizure. It was a short tonic seizure and we caught it on the EEG and video.

The only problem was that we now couldn't do the PET scan because the readings wouldn't be accurate while he was post-ictal. So back up to the room he went. At this point I was very frustrated and kicking myself for not giving him his meds (though this wasn't the cause and I knew it). Soren then had 4 more seizures, giving them great examples of how he seizes (what a boy!). With those on record, the neurologist decided we should give him Diastat to stop the seizing and get him back down to the PET scan.

So we did that, got him back down stairs, knocked him out (not that he was that awake) and did the PET scan. Then, as he was still sedated, they shuttled him even further into the bowels of the hospital and did the MRI. Wham! Bam! Done! Soren was brought back up to the room, woke up, ate (his first meal of the day) and they gave us the boot!

The preliminary readings are inconclusive. The EEG indicated activity on the right side of his brain, the PET scan showed nothing, and the MRI showed something on the left side of his brain. Ugh! But they are going to get the complete results, compare all the tests, and have a meeting on Monday about if he's a surgical candidate.

Yesterday, before the PET and MRI, my hopes were very high. Now, after the preliminary results, I'm trying not to get excited or disappointed.

Soren is in great spirits today despite the insanity of yesterday. I'm exhausted. So we're just going to lay low today.

Thanks for all your good thoughts!

Amy

Off to the Hospital!

Soren is getting admitted to the UCLA today for testing: an EEG/telemetry (video), MRI, and PET scan. He will be in for at least 3 days, depending "on my child's performance" (i.e. amount of seizure activity).

So for the first time, I would like everyone to send out thoughts for Soren to seize in these next 3 days so that this activity can be recorded on the EEG/telemetry. I will be in the hospital, day and night, for the duration of Soren's stay because I am the camera operator, making sure any seizures are captured on film.

They are so serious about a parent staying that I'm actually only allowed to leave to shower or to get food from the cafeteria that I must then bring back up to the room to eat. Instead I'm just bringing a big cooler full of my food and Soren's food.

I probably won't be able to post an update on the progress until we get home. But I plan to take pictures so everyone can see what the whole process is like.

Thanks for the good thoughts!

Amy

Give 'im the Reboot

Soren's Monday continued to go bad, so after his 3rd tonic-clonic seizure, I gave him Diastat to stop the madess. This seriously acts like a reboot to his system (thank goodness). And that's how I imagine his brain. Like a computer, it freezes, not being able to process all the information. You hope that the computer will fix itself, but when it doesn't, you have to shut it down.

And it worked. The rest of the week he was GREAT. He went to school, he laughed like a goofball, he's been very happy. And now we are off to Enumclaw to visit Aaron's family. Hopefully his good mood will last so everyone can see what a delight he is!

Amy

Seizures, A Week Early

Soren will be going in for testing at UCLA next Monday. During this time, we're actually going to want him to have seizures so we can see what's going on in the inside of his brain and on the outside of his body. Since Soren's had relatively good seizure control, I didn't know how we were going to induce the seizures.

Well, Soren decided to start a week early, having 2 seizures yesterday and 1 (so far) today. The first yesterday was done when he was with his respite worker, poor woman. The rest were with us. I've kept him home from school and am hoping today isn't a bad day.

I also hope that he actually repeats this performance next week. These seizures are quite awful and I really want them recorded by the EEG and video camera.

Amy

Not Much to Say

Sorry I haven't written in a bit. Honestly, I don't have much news at the moment, which is a good thing. Soren's been well. He's in summer school now and seems quite happy to be back on schedule. Still no seizures since the dehydration days of our trip.

I guess I have a couple little notes of interest. He does seem more snuggly than usual, which is nice. Granted, I have to heft him onto my body to see if he wants a snuggle. But at least he's been enjoying it, so it's worth the heft.

Soren and I were in the kitchen getting his breakfasts ready while Aaron was getting his shoes on. Soren heard the distinctive thud of Aaron's shoe on the wood floors and smiled. He knows the sound and who it belongs to. I've seen him smile at his father's step before.

When I went into Soren's room today to get him up, he turned his head and looked towards the door when I opened it. He didn't always do this.

And when I'm asking him where Moira is and where I am, he seems to be making a real effort to turn and look our directions, even if he doesn't get it spot on.

That's it. We're on the "no news is good news" kick right now. Hope if there's any news, it will be good.

Amy

DR Trip 2nd Leg: Smoother Waters

Yes, I am happy to say that the rest of our trip went MUCH smoother. With Soren hydrated again, he only had 2 more rather uneventful seizures (tonic stiffening for only about 10 seconds without the horrible clonic jerking). We returned to Atlanta and were given a terrific tour of one of the Turner buildings (with Cartoon Network on one of the floors). Moira was thrilled with all the goodies she got. And I even got to have an evening out with some CN friends while Aaron took care of the kids!

Then on to Miami, where Aaron's folks joined us, and to the DR! I actually made it through without food poisoning and got to play in the pool AND the sea! Soren had a great time in both as well with his special flotation device. They even had this small wading pool that Soren could stand in (something he usually hates doing but for some reason, in water, he chose to do it!).

Soren's treatment Friday went well. The only problem is that with these injections, Soren keeps getting stronger and stronger! When we first went back in 2005, Soren was so weak and having so many seizures, he would just lie there and not put up a fight when the IV was put in. Now he squirms, rolls to his side, gripes, and raises a fuss--just as any typical 3 year old would when being stuck by needles! I'm happy to have this problem, but it made the doctor and nurse's job much harder. Nurse Daisy was brilliant and got the IV in on the first try and then held his hand still to made sure Soren didn't mess it up. Doctor Maria was also great getting the injections into Soren's thighs when all he wanted to do was kick! Dr. Rader and his team really took the time to make sure everything went smoothly, which we really appreciate.

We made it back to our hotel in time for lunch and got in some more pool time. Then we had Saturday to relax before turning back around to Miami on Sunday and LA on Monday.

Soren's Almond Breeze made it through the trip without leaking all over the luggage. However, security in the DR did find these containers of liquid suspicious and pulled my father-in-law into a back room to explain what it was. Don't worry, he and the milk made it out without incident.

Amy

DR Trip 1st Leg: Rough Start

Since Soren started the GFCF diet, we switched him from cow's milk to Almond Breeze, an almond milk which he LOVES (lucky). However, we figured we couldn't go lugging gallons of the drink across the country. So in preparation for our trip I tracked down a powder potato milk that can be mixed with water.

I wisely tested him on the potato milk and while it wasn't a favorite like the almond, he tolerated it just fine. My sister then helped me do the math so I knew how much of this powder I would need to pack to make up 27 oz/day. I triple bagged it and, though I feared I would get busted for smuggling a mysterious white powder into a foreign country, I figured when they realized it tasted like cake mix, they would set me free.

So we set off from LAX to Atlanta on Friday. Before we left home, I got a bottle of the almond drink into Soren, just to be safe. On the plane I mixed up the potato milk, but then failed miserably to get it in Soren. I figured it was just the plane travel. We stopped in Atlanta and made it to our hotel, where we were spending the night. I figured Soren would be desperate for liquid by this point between the plane ride and the lack of drink since 6 that morning. But no. He just dribbled it out. I tried again at dinner to no avail. He was having none of it.

Now, the reason we stayed over night was that we were driving to Chatanooga, TN the next day to visit Aaron's longtime friend Chris and his family. He and his wife Marcie had kindly picked up some of Almond Breeze for our visit. I was hoping Soren could hold through then if he was still a pill in the morning about the potato stuff.

But at 4 am that morning in my sleep I thought I heard something. I got up and Soren appeared to be asleep, but his heart was racing. I figured I had just missed the end of a seizure. This was confirmed at 8 am when he woke with a seizure. He then had another one at 8:40, 9:40, 10:40, and 11:40. Hard, horrible, tonic-clonics. When we saw how things were going, Aaron ran out to a market and bought them out of Almond Breeze. Then the challenge was to rehydrate him between seizures. And even though he was kind of out of it (understandably), he sucked that stuff down like it was liquid gold. After his 11:40 seizure, we gave him Diastat to "reset" his brain.

And I am happy to say that all this worked. Soren is back to being his happy, kicking self. We made it to Chatanooga, though we did start much later than planned and he did have 2 of the seizures on the road. Yesterday was tense, but today has been lovely.

Just goes to show how travel and messing with the routine can really mess up this little guy. The seizures can come out so quickly just with dehydration and stress. But we forge on!

Now we just have a buy another suitcase so we can get all this Almond Breeze to the DR!

Amy

Back to the DDDR

Don't know how lucky we are, boy.

We start our trip to the DR on Friday. One of Aaron's generous business associates donated his Delta miles to us so we could travel to Miami. Delta stops in Atlanta, so we are taking advantage of the stop and visiting some friends in Chatanooga, TN and getting a tour of Cartoon Network.

After that, we continue on to Miami, where we will meet up with Aaron's folks. And then on to the DR!!!!!

We are very excited about this trip. Soren has not had a seizure for a month (knock wood)! We really think the GFCF diet is to thank for this. Hopefully the stress from travel won't bring on any seizures. AND hopefully we will see some fantastic results from this next treatment!

On another note, Soren is doing quite well. He had an awards ceremony at his school yesterday. Every child in his class got an award for their particular accomplishment. Soren's was for "Independent Sitting." He can now sit for up to 40 minutes against a wall with only that as support!

All the other kids got similar, impressive awards. It was a cool ceremony for amazing kids.

And that leads me to yet ANOTHER note. I got an email from another "special needs" mom yesterday. Her son has Down's and Soren was in class at UCLA with this boy. The email was about an amazing young man named Soeren Palumbo (yes, same name, different spelling). You may have heard of Soeren already. If not, let me tell you about him.

Soeren now a recent high school graduate. 4.0 GPA, 1st in his class, a National Merit Scholar, and will be attending Notre Dame. In February he gave an amazing speech to his high school class about people's casual and cruel use of the word "Retard." The video is not the best, but you can listen to his speech on YouTube.

Soeren's Speech

His point was that, in this age of political correctness, why is it still acceptable to use the word Retard? And not just to use it in random conversation as a replacement for other words like "stupid" or "dumb." But to specifically target it against the mentally handicapped. Soeren's sister Olivia is mentally challenged, so the use of this word offends him greatly. He didn't understand why people, whose brains are working "normally" would attack people who, because of their "deficiencies" will never hate. Why would people with, theoretically, more brain power want to harm someone with less brain power--someone who would never try to harm them? Soeren's speech struck such a cord, he did an edited verson for Senate and had news reports done on him.

Now I'll admit right now that I have been guilty of using this word. I've said, "That's totally retarded," without thinking twice about the people it's actually aimed at insulting. Interesting because I learned back in junior high not to say, "That's so gay." I don't say that because "gay" in that context would mean "stupid" and I have plenty of gay friends and none of them are stupid.

Yet, even after I had Soren and knew his diagnosis, I STILL said, "That's so retarded." Now it wasn't in reference to a person who had challenges, so I rationalized that it was okay (knowing full-well that it wasn't). I thought since I was just using it as an adjective, I was in the clear. Plus, I was a feeling defiant. I didn't want this word taken away just because of my child's disability. Finally, I got it through my own thick head that this just wasn't a good word, no matter how I used it.

Part of that was realizing how much others used it. People really use it rather nonchalantly. Like me, I have friends who still say this. What's sad is that I haven't had the guts to tell them that it hurts my feelings. I know it's because when they say it they, like me, don't REALLY mean to insult the mentally challenged. They don't mean to insult Soren. They just use it as a word. But the other Soeren's other point was, would you say other offensive and hurtful words as easily? Would you say, "Faggot"? Would you say, "Nigger"?

So why say, "Retard"?

Sure, it's just a synonym for stupid and dumb. The difference is, "Stupids" and "Dummies" aren't derogatory terms for a certain group in our society.

And Soren and his schoolmates aren't Retards. The children I saw yesterday all have their challenges. But each of them is making strides every day towards independence and they all deserved these amazing rewards.

So, thank you Soeren for speaking out for my Soren.

Amy

Greg Grunberg: My Hero

Greg Grunberg, from the show Heroes and Alias, has a son who also has Epilepsy. I actually met Greg at a fundraiser for UCLA's Children's Hospital

Pediatric Epilepsy Project

He was very kind and our sons actually have, not only Epilepsy in common, but the drug to help control their Epilepsy: Lamictal.

Greg has made Epilepsy his cause, speaking out and raising awareness. I recently discovered this video he did for

The Epilepsy Foundation

Here he talks about what to do when someone has a seizure. I've learned through all this that Epilepsy is a disease that people don't talk about and often misunderstand. It's good that Greg and other parents are helping get Epilepsy out of the closet.

Amy

Another Worthy Cause

My friend Cindy, in conjunction with Cartoon Network, is doing an art auction at Cartoon Network for the Family Service Agency of Burbank on Saturday, June 30. The silent auction bidding goes from 6:00 to 7:30.

A similar auction was held a little over a year ago for Soren's friend Fyn, who was diagnosed with a rare pediatric liver cancer. Artists from all over donated their work for the auction and over $40,000 was raised to help Fyn's family with the financial burden. Being the amazing people that they are, they then gave Soren $10,000 of that money to help with his stem cell injections!

The Family Service Agency is another VERY WORTHY cause and I'm sure more AMAZING ART will be donated. If you have art to donate, PLEASE DO! If you are are in the area on the 30th and interested in getting some great art and giving to a great cause, Please Do!

Amy

Ahead with Horses Needs Your Help!

As I've written before, Soren has Hippotherapy at Ahead with Horses every Friday. No, Soren does not ride a hippo as the name implies. The Greek word for horse is hippo. So this is Horse Therapy (though I would love to see Soren riding a hippo).

It's quite amazing to see Soren up on the horse. Riding really has helped his neck and trunk strength, challenging him in a very different way than his other therapies.

This Sunday, June 10th is Ahead with Horses 26th Annual Fun Day! This is their BIG fundraiser and this year, they REALLY need the funds because their state funding was revoked.
Here is the link to

AHEAD WITH HORSES

On the sidebar to the left, you'll see AWH Events. There you click on Coming Events to get information about Fun Day.

To donate, click on AWH Needs and that will lead you to a donation link.

You can also just mail a check to:

AHEAD WITH HORSES INC.
9311 DEL ARROYO DRIVE
SUN VALLEY, CALIFORNIA 91352

Thanks! Amy

Ricci Kilgore: Another Patient of Dr. Rader

A month from today's date, Soren will be getting his 4th stem cell injection in the Dominican Republic. I am very excited, hopeful, but nervous. We want so much out of these next two injections (we've raised enough money for these next two and then we plan to evaluate their efficacy). I get nervous that, no matter how hard we try, Soren just won't every become close to a typical kid.

But then I see this. My friend Azita forwarded me this

You Tube video

This is a young woman named Ricci Kilgore. She is one of Dr. Rader's patients who is experiencing a remarkable recovery after suffering a devastating spinal cord injury.

It renewed my hope. It brought me to tears. This is what I want for Soren.

Amy

Neurologist Appointment

Soren had his 6 month check-up on Thursday. Aaron and I both went to the appointment and we had quite a list of things to talk about.

We've been wanting Soren to get another MRI and EEG/video-telemetry. With the latter, they do a regular EEG, but it lasts at least 3 days. They also video tape it so that when he has a seizure, they see what it looks like on the outside as well as the inside. The reason we want this is that Soren's seizures have changed in nature, getting more frequent and strong. I actually did a summary of Soren's seizures the past year and, when you boil it down like that, things haven't been going so well. Soren was seizure-free of Infantile Spasms and Tonic-Clonics for a year when he was on Zonegran and Lamictal.

Then last March-May, we weaned him from Zonegran. The good thing about doing this is that Soren became more alert and started turning to his sides. The bad thing (which I didn't really realize until doing this summary) was that the Tonic seizures came back in June and the Tonic-Clonics soon followed. But now with the GFCF diet, the seizures seem to be decreasing. And that's better than adding another drug.

Our hope in doing this testing is that something is discovered that makes Soren a surgical candidate. Yes, I'm saying that we are actually hoping to find something in our son's head that they can cut out and remove. Surgery is, unfortunately, the only known "cure" for Epilepsy. The rest-drugs, diet, voodoo-are just bandaids.

I had asked Dr. Shields about doing these tests again at our previous appointment and he didn't think it was necessary. So this time I brought Aaron to back me up. We expected to have to convince Dr. Shields and had all our arguments ready, but instead he agreed to this right away. Great!

The other thing we wanted to ask him about was Soren's diagnosis. Being honest with ourselves, we know that Soren has Autistic tendencies, but he does not have this as an official diagnosis. So we asked Dr. Shields if, in addition to his Epilepsy, Soren also had Autism. Without hesitation, he said yes.

This didn't make us feel quite as great. Even though we asked for it, it was a bummer to hear it confirmed and confirmed so quickly. However, the good news is that children with Autism get different/additional therapies.

So now we wait to get the tests approved by insurance and the therapies approved by the Regional Center. And we hope that it we get the results we want from all of them.

Amy

Low-Grade Seizure

I mentioned in my GFCF update that Soren had only had 2 seizures in April since we started the diet. Well, he had two more this weekend. And they all had something in common. Soren had a low-grade fever on both weekends when he had the seizures.

The ones in April happened while I was at my cousin's wedding in Lubbock, Texas. Aaron was home with the kids and, wouldn't you know it, Soren had two seizures. Aaron noted that Soren, while not full-blown sick, was running a mild fever.

Then this weekend we all went away for Moira's birthday. We were all sleeping in the same room. I was conked out when in my dream I heard Soren seizing. My brain tried to incorporate it into the dream, but I woke myself up, and there he was seizing at 2 am.

Now this freaked us out because we feared that Soren was seizing at night this whole time we thought he was doing so well. But Soren was a little toasty in the bed, so we stripped him down. The rest of the night and into the day were fine. But then, on the drive home, Soren had another seizure.

Believe it or not, this made us feel better. Since we knew he hadn't had any daytime seizures for a bit, it made us more assured that he hadn't been seizing at night on the sly. When we got home I noticed he was warm again. I took his temp, and sure enough, he had a little fever.

Whatever it was seems to have passed. Motrin helped take his fever down without a problem. I just wonder what those days would have been like if Soren hadn't been on the diet. Would it have been one of those days where he had 9 seizures? While the two we witnessed were lousy, we're glad it was only two.

Amy

GFCF Diet Update

Howdy!

Soren has been on the GFCF diet now for a little over 6 weeks. In that time he has had only 2 seizures!!!!!

I was looking back in my seizure log for this year and was amazed at the difference.

January: 11 seizures
February: 10 seizures (9 of them in one day)
March: 15 seizures

We got Soren fully on the diet on April 2nd. On the 28th he had 2 seizures. He's been through a couple illnesses (a cold, a stomach bug) while on the diet but didn't have the usual breakthrough seizures.

So we're crossing our fingers that this trend continues!

Amy

Dr. Rader ABC 7 Report

Hello all,

A few days ago there was a news report on Dr. Rader and his stem cell therapy. If you are interested in checking it out, go to

Dr. Rader Report

I've always been up front about where we go for our stem cells and the doctor (Dr. Rader) who provides them for us. According to the ABC News Report, he's either a miracle worker or a snake oil salesman. I've actually seen some of the miracles first hand, so you know where I stand. And I happen to personally know the two families involved in the report who have these two very different viewpoints.

The report is actually quite well-balanced. There were fears that it wouldn't be. I've actually been approached by ABC 7 news two times to tell our story. However, due to a bad experience with the press, I was encouraged by Dr. Rader and my friend Azita NOT to speak to the media. Fearing the worst, I didn't.

However, the second time I was approached, I was first called by another friend and fellow special needs mom, Fia Richmond, who was telling her side of the stem cell story to ABC. She had a very negative experience with Dr. Rader. Because of this experience, she started her own amazing organization called

Children's Neurobiological Solutions

Fia wanted me to tell about our good experience with Dr. Rader. However, I knew if any story should be reported, it was Clayton's. Having personally seen this boy first in a vegatative state and now walking and laughing are amazing. I told the producer at ABC that I couldn't be part of the piece and that she should get Clayton. However, I knew that would be next to impossible.

Well, next to impossible happened. ABC was going ahead with Fia's well-justified side of the story. They called Dr. Rader and told him the piece was going to be negative and they only way for him to tell his side was to speak publically. In a possible "damned if you do, damned if you don't" situation, Dr. Rader agreed to speak to convey his side. If when you watch the video he seems a bit on the defensive, I personally think it's because he was feeling very much like he had to defend an attack on what he is doing.

He asked Clayton's family to also be part of the piece because seeing Clayton's success really is like witnessing a miracle. Azita was fearful because of that previous bad experience, but did it out of respect for the doctor that has saved her son. And to hopefully get their message of success out. It's that success that helped us make our decision.

But watch for yourselves. Make your own decisions. That's what we and every other parent who has chosen to go or not go has done. Soren hasn't gotten the full-on miracle yet, but we've seen little miracles along the way. And with these next two injections in June and December, we're hoping to see even more.

Amy

Selling Cels for Soren's Cells!

Hello Everyone!

Well, we're doing it again. Another auction of animation cels on eBay!

My friend Craig Lewis was kind enough to donate a slew of cels to help raise funds for Soren. And then my other friend Anthony Butler was kind enough to put them up on eBay. I'm so lucky to have so many kind friends!

Currently up for auction are cels from "Johnny Bravo," "Powerpuff," "Ed, Edd, and Eddy," "The Smurfs," "I Am Weasel," "Dexter's Lab," and "Rugrats."

Check them out at

Soren's eBay Auctions!

Thanks!

Amy

A Petition

Today, for the first time in a LONG time, I went to yoga. Much, much needed yoga. I do a kind of yoga called Kundalini at a center called Golden Bridge. It's kinda THE place in L.A. to do Kundalini Yoga. And today, to make the experience complete, I took an all women's class from Kundalini guru Gurmukh. She travels the world to teach Kundalini. She has a DVD. She's 60+ and looks FANTASTIC.

Anyhow, Kundalini is a very spiritual kind of yoga. You often chant. It's very much about cleansing yourself. And there's always a goal for that particular session. To set up the goal for today, Gurmukh informed us that, at the end, she would be reading to us from the book, "Eat, Pray, Love: One Woman's Search for Everything Across Italy, India, and Indonesia".

So we did our session. I was exhausted and knew that I would be sore tomorrow. Gurmukh then read the excerpt as we sat in easy pose with our eyes closed. In the story, the writer was waiting for her husband to sign their divorce papers. She had waited and waited, called her lawyer continuously, only to hear that her husband still refused. As she drove with her friend, she expressed her frustration with this situation. Her friend asked her if she'd prayed for this to be resolved. The woman admitted that she never used prayer to ask for something. She just used it to ask that she have the strength to deal with whatever came her way. Her friend told her this was stupid. Since we are all part of the universe, we can ask the universe for help in any given situation.

Now, as I was listening to this, I thought of myself and prayer. I don't really pray. But my reason is different. I have problems asking God for something when I'm not really sure on God to begin with. I have issues believing that there is a God that would have a world where my child (and MANY other children I now know) have to struggle and suffer beyond reason. So I feel like a hypocrite asking God for help when I'm not a big believer. But, with the reasoning that you're not praying to God for help but praying to the universe for help, (as it said in the book) well that's different. I'm part of the universe. I don't have issues believing in the universe. I know it exists.

So in the story, the woman opened her notebook and wrote a petition to the universe asking for her divorce to be settled so that she could move on with her life. She signed the petition. Her friend, who was driving, said that while she couldn't actually sign it, but that she would mentally sign it. The friend then asked the woman who else she knew who would sign this petition. The woman listed family, friends, people who'd passed away, famous people she'd never met who she thought would be in support of her emotional pain finally ending. With each name she said, her friend affirmed that that person had signed. Once all the "signatures" were obtained, they sent the petition off to the universe. Then, as one might predict, the women got a call from her lawyer. Her husband signed the divorce papers. The universe had answered.

Next, as part of our yoga, we were all supposed to think of our petition to the universe. My petition was, of course, for Soren. It went something like this...

Dear Universe,

Please heal my son Soren. He is severely disabled due to Epilepsy. We have tried everything: drugs, diet, therapy, and alternative medicine. He's the sweetest, most beautiful boy imaginable, and all I want is to see him grow to be a typical boy.

When I thought of who would sign this, tears began streaming down my face, because it's all of you. All of you who read this blog, people who don't read this blog, people who write to me about Soren, have taught Soren, suffered through therapy with Soren, dreamed of Soren, read to Soren, done art with Soren, or had even one thought of Soren. In fact, I don't know anyone who wouldn't sign my petition to the universe for Soren.

So I thank you all for your signatures. And I will now pray, every day, that the universe says, "Yes!"

Amy

Hard Working Boy

As I write, Soren is on his belly and not happy about it. However, he got himself there and now he's got to work it out.

It's interesting to me how he works on different stuff depending on his environment. When he's in his Vision Box, he looks at the lights and kicks. Now and again he'll go from side to side, but doesn't go his his belly.

When I'm writing "downstairs" (down the 2 stairs in our house), I put him on blankets where he can kick. That's what he was doing this morning. And when he's down here, he gets to his belly. The trouble is, once he's there, instead of pulling his arms and legs under his body to get in yoga Baby Pose, sprawls himself out flat with his legs and arms extended. You can't get anywhere from this position.

But Soren is strong enough that he can lift his head, upper body, and legs off the floor. So he arches his back, lifting his limbs, in a modified Yoga Bow pose. He moves his head side to side, but then he thumps it on the floor (ouch!). Then he gets more and more mad (who wouldn't?). The hard part is watching him suffer through this. However, as with any exercise, it makes you stronger even though it's not necessarily the most fun. If we don't keep him on his belly, he won't have the opportunity to figure out to pull his legs and arms back under to push himself up.

Of course, he also gets so mad, he gives up and falls asleep. Again, I don't blame him.

Amy

Gluten Free Casein Free Diet

A week and a half ago I started Soren on the Gluten Free Casein Free Diet. In VERY general terms, this means a wheat and dairy free diet (of course you also have to watch what toothpaste, laundry detergent, and shampoo you use! Yikes!). The reason I decided to try this started with my friend Katherine, whose son is Autistic.

Now Soren does not have a diagnosis of Autism. However 20% of kids with Autism have Epilepsy. So who knows? We've been struggling so much just dealing with the Epilepsy, Autism has been the last thing on our minds.

The GFCF Diet is reportedly very good for kids with Autism. The Gluten can act like a drug in some kids, making them a little high, so to speak. Getting them off it clears their head. And the GFCF diet also helps some people's digestion.

So I checked on the diet's efficacy with Epilepsy. Turns out there are anecdotal reports of the Gluten Free Diet helping with seizures. And after the past 6 weeks, having a horrible few days every 2 weeks, I figured it was worth trying. And I decided to do the Casein Free as well for fun.

Changing Soren's food was easy enough. He eats what I feed him. Yeah, I had to switch the salsa in his guacamole and his Eggo waffle to a GFCF waffle. And I spent way too much time in Whole Foods going through their Gluten-Free Food List and their Dairy-Free Food Lists (they didn't have the cross-referenced of course). Still, not too bad.

Switching his nonfat milk to an Almond drink actually went smoother than expected.

And now I have to provide Soren lunch at school, which is the biggest "hassle" of it all. But really, that's not hard either.

Now we have to wait and see if there's a difference. It takes the body a while to get the Gluten out of the system. But if it works and we cut down those bad seizure days, it is totally worth it.

Amy

Rough Days

Last week was a tough one. On Saturday, Soren had a seizure on the way to our park play date with his former UCLA teacher Lisa (he always seems to make it rough on her). Then on Sunday he had 3 seizures--2 tonic-clonics and one absence.

But Monday was the doozy. 7 tonic-clonic seizures. After the first 3, I saw how the day was going and gave Soren Diastat, the rectal valium. Now, when all is good, this is supposed to stop the seizures for a good amount of time. Instead, after he woke up from his three-hour drug-induced nap, he had another seizure. And then 3 more following that.

I got the okay to increase Soren's Lamictal again. And even got the okay to give him another round of Diastat (something you are not supposed to do unless desperate because a tolerance to the medicine can build up).

Fortunately we didn't have to do this. I took him to the pediatrician to make sure he didn't have strep throat or an ear infection since Soren doesn't give us the usual signs most kids do. He checked out fine.

And then Tuesday he had seizures, as if the weekend and Monday had never happened. I kept him home with me just in case. Wednesday and Thursday he was very quiet, which is unlike Soren. And then Friday he was back to his chatty, complaining, giggling self.

Our only theory is that he's cutting some of his 2 year molars late, since he was drooling up a storm. So we've been giving him Motrin in the hope that we're cutting doen the pain.

What amazes me is how this all still throws me. I sat home with Soren, giving him oxygen when he seized, giving him the Diastat, trying to feed him. And I through all of it, I was in a daze. As Soren and I hung out, I sat and watched House episodes I had TiVo'ed. Then I watched one again last night with Aaron and I could barely remember watching it before. Little bits seemed familiar, but then other parts seemed totally new.

The fact is, seizures are debilitating. And I'm only having them second-hand. I can't imagine what Soren's going through.

Amy

Aaron's Dream

This is a note from Aaron, Soren's Dad...

Amy has done a wonderful job with keeping folks informed with this blog. I’d just like to share a bit of what helps me believe Soren’s life will be better.

In 2004 during a particularly bad patch of seizures, I had a dream. At that point, Amy and I were slightly delusional from the 24/7 seizure assault. But the dream was real. It was dusk. I was standing on our back patio watching a group of children play in the backyard. Soren is standing next to me. He turns and grabs my hand. He grabs my hand just like Moira does. Instantly, I know he is 4 years old. And although I don’t see it, I know that he can walk.

Soren will be 4 in six months. He has a long way to go before he stands, let alone walks. From this blog, you know a bit of the road we’ve traveled. But when things look bleak, I remember Soren standing next to me holding my hand. And I hope.

Aaron

The Eyes Have It!

Soren had his 5 week post-surgical check-up today and his doctor was VERY pleased! Not only are Soren's eyes straight, he's actually using both to see!!!

Let me recap a bit. Soren had strabismis surgery to straighten his eyes. He clearly preferred his left and his right would turn in quite a bit. We patched for a while trying to make sure that his right eye had about equal vision to the left before doing the surgery. We did this because, if the vision wasn't close to equal, his brain might not figure out how to work the eyes together even if they were straightened. So, after the surgery, his right eye may have looked straight, but it may not have been doing any actual looking. The trouble is, since Soren can't talk, it's all guesswork. We had the option to wait a few months and continue patching. But we decided to take a chance.

And, for once, that chance has paid off! HOORAH!

His vision isn't just cosmetically straight, it's (hopefully) functionally straight.

Now how does the doctor know this? Well, let me tell you. I had noticed over these past 5 weeks that Soren's right eye would drift OUT a bit now and again (something it had never done). BUT, every time it did this, the eye then came back into alignment. His doctor also witnessed this and said that this indicates that his brain knows that drifting out is not where the eye should be. So then his brain actively pulls it back so he can see properly--WITH BOTH EYES!!!!! Amy

My Little Stinker

On Tuesday I got a call from Soren's PT. No matter what she did, she could not wake him up to do therapy. He was just out. She asked if everything had been going okay, seizure-wise. I told her I sent Soren off that morning without incident. I thought he was being a stinker, yet again.

However, when Soren and I were walking home from picking Moira up from school, he had a seizures. A big one. Tonic-Clonic. 90 seconds.

So my theory changed and I figured that Soren probably had a seizure right before therapy and was then post-ictal during therapy.

At home that afternoon, he had 2 more big seizures. Having finally figured out his pattern of having seizures and then coming down with a cold, I kep him home on Wednesday.

Of course, he had no seizures (which I'm fine with) and he had no real cold symptoms beyond a very mild fever. And he was a delight all day. Kicking, giggling, smiling. We even went out to lunch together.

I swear the seizures take years off my life. But then he's such a sweetheart (and a stinker) that he charms me between those horrible bouts.

Smart boy.

Amy

Genetic Test Result

Well, after getting Soren's blood drawn back in December and waiting these many months for the results, we got a call today saying that Soren DOES NOT have the CDKL5/STK9 gene mutation.

What does this mean? Well, as far as his treatment goes, absolutely nothing. Even if he did have this mutation, we wouldn't be changing anything, it would just answer the question of why Soren has seizures.

Chances are, it's some other gene mutation that they haven't discovered yet. So now we wait around and call the geneticist back in a year to see if they've made any new discoveries.

We're perfectly happy with these results. Always nice to find out your kid doesn't have something with a lousy prognosis. But, in a way we were hoping to have an answer. Then we'd be able to test Moira so she could make an informed choice when having children. But we have many years before that's gonna happen!!!!

And we're bummed we don't get to come out with our new T-shirt line. We were going to make Soren a shirt that said MUTANT: CDKL5. Gotta have a sense of humor about these things. Maybe his actual gene mutation will have an even cooler name.

Amy

Been Awhile

Sorry I haven't posted in a bit. We've been busy!

On Saturday the 24th we went to the Getty with my Dad to see the Icons of Sinai. It was a LONG day at the Getty, but the kids were troopers. Soren ate crab cakes at the fabulous Getty restaurant (that kid has the most adventurous palette). Moira made lovely pieces of art. And the Icons were amazing. We got into the exhibit and Soren started laughing. Who knows why? Maybe he saw some angels. But through that whole, busy day he was alert and happy. Not one complaint.

I don't want to say that the next day was the opposite, but Soren had his opinions about things. He complained and wanted to be held by Aaron so they snuggled. Then he complained some more and wanted to be held by me. When we were watching the Oscars, he was sitting up on the couch with me in his Special Tomato seat. My arm and shoulder were near him and he purposely leaned into me to rest his head. Just a big Mr. Snuggles.

And his eyes are looking FANTASTIC!!! The redness is almost gone. They are SO straight! I can see him working that right eye. It's pretty awesome.

So that's the update! I'll try not to take so long next time!

Amy

A Lovely Day

We all had the day off today so we decided to go to the California Science Center, where they are having a Star Wars exhibit.

About 4 weeks ago, we started showing Moira the original Star Wars Trilogy. She LOVES it.

So, the Science Center is having an exhibit of models, costumes, droids, and Luke's Land Speeder. Totally Sweet!

The funny thing is as soon as we head of for any adventure, Soren smiles. He seems to get that we are all out and than makes him happy. We were driving on the freeway, and he was giggling his head off. Yes, he had hiccups. Still, for whatever reason, it all was amusing him.

The museum was packed! We bought out tickets, had McDonald's (much like Children's Hospital, the museum has an "in-house" McDonald's) and saw the fantastic Star Wars exhibit.

(Note to anyone who wants to go. The usual "free" wait is about 2 1/2 hours. Granted, we went on a holiday. To get in on the "express" pass, you have to pay to see an IMAX movie. These are about an hour. BUT then you get taken into the "short" line of only about 25 minutes. It all depends on how you want to spend your time--standing and waiting or watching a movie. We saw a movie about Hurricane Katrina. Very cool, though it freaked Mo out.)

My point is, we had a good day. Soren had no seizures. We went to Exhibition Park (which, to my memory, I've never been to). We ate McDonald's (Soren had Filet O' Fish). We saw a movie. We saw cool Star Wars stuff. We all had fun. That's all I can ask.

Amy

Better Days

Soren has been doing much, much better the past couple days. Friday he only had that one seizure and was quite happy the entire day. His fever (which was only between 99-100) finally went away.

Saturday we had no seizures and he was a silly delight. And so far today, things are going well.

Hopefully this latest medicine increase will hold us a longer.

Amy

A Rather Crappy Day

Not to bum you all out, but we had a bummer of a day yesterday.

Soren was supposed to go back to school today. Instead, he had a seizure at 6:40 am. A tonic-clonic, otherwise known as a grand-mal, seizure. Tonic is when you stiffen, clonic is when you shake

He then went on to have 8 more seizures for a total of 9. Out of those, 7 of them were tonic-clonics (the other 2 were rapid eye shaking).

We had to pull out the oxygen tank since he was holding his breath.

The thing is, seizures beget seizures and he began to loop having a seizure, going post-ictal, coming out of that briefly, and then seizing again. Finally after his 8th seizure, I gave him Diastat.

I don't remember if I've written about Diastat before. It's a rectal gel of the drug diazepam, which is commonly known as valium. Thus the DIA (for the drug name) and STAT (getting the drug in quickly). It stops the cycle--at least you hope. Soren had one last seizure after he recovered from being super-drugged by the Diastat. Then he ate a good meal and passed out on Aaron.

At 3 am Soren was babbling up a storm. Probably talking about his crappy day.

Today he's only had one seizure so far. He had a little fever, which is probably the cause of the whole mess. We got the okay to increase his Lamictal again. Let's hope it kicks in quickly.

Right now he's happy and kicking. What a boy!

Amy

Soren's Surgery

Soren's eye surgery was yesterday and it went very well!

However, the day itself was a little nutty. We had a plan. Both kids were off from school. So we decided to take Moira along with us, bring the DVD player, my laptop with a Math and Reading computer game for her, books, and activities. Children's Hospital Los Angeles even has a McDonald's. We figured we were set.

We had to get up at 4 am to get to the hospital by 5:30. Both Aaron and I are fighting colds, so we slept horribly. Then Moira ended up waking up at 3am with a TERRIBLE earache. After giving her Motrin, we headed off the hospital.

We got to Children's, where everyone was terrific. They got Soren checked in and into pre-op quickly. They gave him "happy juice" to relax him and help lessen any seperation anxiety (which Soren doesn't really experience). However, it did relax him enough so that he pooped. I, of course, lef the diaper bag downstairs with Aaron and Moira. I went to get it and saw that Moira was still in a lot of pain. Aaron gave her Tylenol to see if that would help. I went back up, changed the boy, and he was headed into surgery by 7:30.

Soren's surgery was supposed to take about 2 1/2 hours, so I got my pager from the waiting room and we zipped over to the ER to see if we could get Moira's ear looked at. The ER appeared to be empty. Aaron and Mo went in to have her checked by the nurse. Everything seemed to be going like clockwork. Then they called me in to the ER waiting room. Moira's face was splotchy from crying so much. I'd never seen her like this. It was time for more Motrin, so we gave her the concentrated drops we carry in the backpack for airline travel. That's when we got the news that there were about 5 patients ahead of Moira who had been waiting for 2 hours on the other side of the ER. Ugh!

Then a little before 9:00, my hospital pager went off--way sooner than I expected! I quickly walked back to the other side of the hospital and waited to be called up to post-op. There was Soren, conked out. His doctor said everything went perfectly. He wanted Soren to take his time waking up. The nurse said it would take about another hour. I told her about Moira being in the ER. So she told me go back but to return by 9:30.

I quickly walked back to the ER. The Motrin had kicked in and Moira looked-and felt-much better. By now we were all starving. I checked at the desk and there were still a number of kids-with more serious problems-in front of us. We decided to just go to Mo's pediatrician that afternoon and to get some McDonald's!

Those hash browns and that Coke were SO DELICIOUS!!!!

I then went back to post-op where Soren woke up VERY SLOWLY (in hindsight, Moira and Aaron probably could have returned to the ER, but oh well.) We finally got out of there a little before 11. Moira got her ear checked and did, indeed, have a bad infection.

In the end, I think Soren did the best of all of us. He was smiling and giggling the rest of the day. His eyes are very red and bloody looking in the corner where the muscle was cut and then reattached. This redness should last around 3 weeks. We have to put in drops four times a day for a week to prevent infection. And for 24 hours we had to make sure he didn't rub his eyes and tear the stitches, so we had restraints to immobilize his arms. It looked like some sort of torture. Moira asked if it was punishment. But now that he's past that point, his arms are free!

His eyes look really straight, which is pretty darn cool. He seems to be looking at things longer and trying to figure out what this new world he's looking at is. I can't even imagine what this is like for him. I just hope his brain is figuring out how to get these two eyes to work together. And I'm excited to see what else may change with this new vision.

Amy

The Ashley Treatment

I've been meaning to write about this for a while. It's been in the newspapers and magazines. I don't know how many of you have noticed it. Having a special needs child, I have.

There is a family in Washington State who has a severely disabled daughter named Ashley. She stopped developing mentally at 6 months old. They don't know why. All tests were inconclusive. She has no hope of mentally progressing past where she is.

So they went to her doctors and, together, made a choice. When Ashley was 6 1/2 years old, her parents decided to give Ashley high-dose estrogen treatments to stop her growth. Along with this treatment the doctors also performed various surgeries--a hysterectomy, removal of her breast buds--to keep her the size of a 9 year old the rest of her life.

People are rather divided about this issue. Half find it "inhumane" and merely "convenient". The other half sees that the treatment was done truly in Ashley's best interest and support the family in their choice.

I'm in the other half. I totally understand where these parents are coming from. They did this out of love for their daughter--their daughter who they hope to care for and keep as part of their family (they have two other children) for the rest of their lives.

If you go to their site http://ashleytreatment.spaces.live.com/blog/ or Google The Ashley Treatment, you can read every well-thought-out reason they did this treatment. I could restate every reason here. But since they have taken the time to putting up a site and stating everything so clearly, you should really read their own words.

My main thought, though, is that unless one is in this situation, it's impossible--and almost arrogant--to judge. There are people called "medical ethicists" involved in judging these parents. There were medical ethicists involved in listening to the parents' original request. Those ethicists helped okay this treatment.

But now there are medical ethicists from outside the case who claim this is not an appropriate treatment. That it dehumanizes the disabled. That is was done purely for convenience. I think many of these ethicists are saying these things to be quoted in papers and speak on radio shows. Because if they took the time to read what these parents have written, they'd realize this is crap. This girl is not minorly disabled. She is severely, mentally disabled with no hope of change.

I think one outside ethicist’s comment was that this treatment was unseemly. Someone on the medical team responded that. To him it was more unseemly to have a woman who was physically 30 years old with the mental capacity of a 6 month old than a woman who was physically 9 years old with that same mental capacity.

Another ethicist commented that people with a disabled family member get the help they need. Now, while there are many wonderful caregivers out there doing a great job, the fact is, there are more unreliable ones. I've spoken to more frustrated parents who go through nurse after nurse then parents who are over the moon with the fantastic care they've found for their child. The pay for in house nurses is lousy compared to those who work in hospitals. So you end up with a lot of flaky caregivers. (Though, I have to say, we haven't had this experience because we got personal recommendations for respite workers and then got them approved by the company). Still, in the end, many families feel that for their loved one to get good care, they have to do it themselves. And that is, quite honestly, exhausting.

Every other reason Ashley's parents gave was also clearly for their daughter's well being--if she grew physically into adulthood, it would be harder on her body (bedsores which can lead to infection, a bigger body is more taxing on organs). She is not going to have children, so why have a uterus? Why have the discomfort of menstruation? Her family has a history of breast cancer and the women tend to have large breasts. This would be uncomfortable for her considering she spends most of her life on her back.

And, yes, in the end doing this treatment makes Ashley more portable. But that was not the primary reason for this treatment. Still, I'd understand it if it was a motivating factor. I'm 5 feet tall. That's 60 inches. Soren is over 37 inches. Getting him in and out of the bath recently became too difficult for me. I was afraid I was going to drop his slippery body. So now he's in the shower in his special bath seat. It's better, but it still isn't easy.

That being said, this is not a treatment we are considering for Soren. Unlike Ashley's parents, we do have hope for Soren's mental development. That's why we're going to the DR two more times this year.

Still, if that hope doesn't pan out, this is an interesting treatment to consider. I have huge fears of Soren being a full-grown man who does not have the mental capacity to care for himself. I fear what it would mean for his health. I fear what it would mean for my health. I fear what that would mean for us as a family. How things would have to change while knowing that I would always want Soren to be with us. These parents made the choice that they felt was best for their daughter and their family. I just hope we never have to make that choice.

Amy