Eye Surgery

Soren is scheduled for eye surgery Monday, February 12th.

As you can see in many of his pictures, Soren's right eye turns in.

I've written about how he prefers his left eye. We've acutally been patching his left eye for about 3 to 4 months to strengthen his right eye.

His neuro-ophthalmologist feels that developmentally, Soren's brain is probably about ready to start working on his eyes moving together (this usually happens in typical kids between 3-6 months of age). Despite his age, this is where Soren is developmentally. And he's been making some good progress lately (he's holding things better with his right hand, he's responding when we ask him questions now and again).

There is only a brief window of opportunity when the brain is able to learn to work the eyes together. If it doesn't learn then, the brain learns to instead work them seperately.

So, we are doing the surgery in the hope that this is the right time for Soren's brain to learn to work them together. We are also hoping that his vision is about equal in both eyes. The latter is a little difficult to tell since Soren can't answer the question, "Which is better, 1 or 2?" But, as well as we can estimate, Soren's vision is about equal.

I'll update about this after the surgery so you'll know how it did.

Amy

A Good Week

I know I'm celebrating a good week early, but I want to celebrate it while it's still good. Soren has had, actually, a GREAT week.

After that rough weekend I didn't know what to expect. Well, my fears were set aside because he's been chipper, babbling, alert, kicking, eating well, responding when we talk to him.

On Tuesday he had a great Physical/Occupational Therapy session. And he'd really been giving them hell the past few months.

He'd did so well on Tuesday, I was nervous for Wednesday. Same therapy center, but different therapists and he's REALLY been giving that pair a rough time. When Soren was dropped off from school yesterday, I asked his bus driver how he seemed after therapy. He said Soren was singing going in and singing coming out. So what happened inbetween?

I called his therapist for the update and she was SO HAPPY. Soren had done the best he'd done in months. She said it was like a different boy. He sat on the swing, he didn't complain, and he worked very hard.

So I want to celebrate this success while it's here. Good job Soren!

Amy

Living in the Now

Living in the Now is very hard when you have a sick kid.

I was just having an email exchange with my friend Dayla whose son Fyn was diagnosed with cancer last year. He is doing well, thank goodness. But, just like seizures, cancer can come back. And that's what we two moms were discussing.

You worry constantly about what will be. What could happen.

I had a rough night last night. Aaron was gone. Soren had had those bad seizures.

I wondered if I should have Soren sleep with me. I know many parents of kids with seizures who always sleep with their kids. I respect that. But I don't do that. I need to sleep. Soren needs to sleep. And while I could be there for a seizure, I can't stop it. I'm sure some parents think I'm awful. But I need to be there for Soren, Moira, Aaron, and myself in the morning. That won't work with a lack of sleep.

So I let Soren sleep. I slept reasonably well, considering. And in the morning, while I was still tense, Soren was quite well rested and went to school without incident.

I felt like I was on call all day. I feared a call from school. And while this was mildly nerve-wracking, it made me appreciate the day a little more.

I appreciated the now. What I had. I met with a friend. I worked on one of my scripts. I had lunch celebrating a former co-worker's birthday. And I never got a phone call telling me to pick Soren up. My kids got home. We did homework, I bathed them, fed them, put them to bed. It was nice.

It's so hard with a sick child to appreciate when things are going well. A good CAT scan. No seizures for a day. But, as with anyone, you have to because if you focus on the negative--and we all have negative out there that can consume us--you'll go nuts.

My goal each day is not to go nuts. I'm sure it's a goal many of you have as well.

Good luck.

Amy

Post-Ictal

Soren had a seizure yesterday and just had one today. Today's was a strong tonic-clonic (stiff, jerking) and lasted about 1 minute. Soren is now post-ictal (asleep). And I realized that after he seizes I'm a bit post-ictal as well. I've been walking around in a daze for the past 30 minutes.

I did manage to weigh Soren. We think that he's been having a growth spurt. He seized a bit over a week ago and didn't come down with any illness. We got the okay to increase his Lamictal and he did well until today. So I checked to see if he's any heavier. He's gained about 2 pounds. So then I called the pediatric neurologist on call. I'm waiting for him or her to call me back so I can find out if I can increase his medicine again.

But until then, I'm a bit stunned. I decided to write to at least get some of this out of my system. It's just me, Soren, and Mo right now. Aaron's working.

Soren just woke up. I guess I better come out of my shock as well and get dinner ready.

Amy

Sweet Kids and UCLA

Soren had the most lovely teacher ever at UCLA's Early Intervention Program. Her name is Lisa. And she had a lovely assistant teacher named Ingrid. Since they have both left the program and miss the kids so much, they have set up play dates every two months to see the kids.

We went to one today. It was the second we have gone to out of three. It was so nice to see both Lisa and Ingrid. And to see the wonderful children that Soren went to school with.

I've gotta say, everyone is doing SO well. While Soren was having a rough and fussy day (there was some constipation involved--I'd be fussy too!), everyone else was in top form.

A little girl in Soren's class who was only being fed by feeding tube during school is now being fed orally (thanks to the wonderful feeding therapy at Pasadena Child Development Associates!)

And a little boy who I just love was scooting all over the playground looking for action!

Children are interacting, thriving, and doing so well! It's so exciting to see!

UCLA really provided a fantastic program for Soren and so many other kids. And that is ALL because of Lisa, Ingrid, and the fantastic staff there.

I'm so thankful Soren had his time there. He grew so much. I'm sorry he was being such a fussy budjet today because he grew so much there as well.

But in two months we will meet again. Hopefully he will have done his business BEFORE we go!

Anyhow, it was great to see how amazing these amazing kids are. I love them all!

Amy

Moira Kisses

Moira was in a very kissy mood last night. And so she began kissing on Soren, who was sitting in his feeding chair having just finished dinner.

The more she kissed him, the happier he got until he was finally smiling and giggling at the kisses.

I then asked him if he saw his big sister. He had been looking away from her as he got his kisses. I asked him again, "Do you see your big sister standing next to you?"

Soren has the most amazing and expressive eyebrows. He was clearly thinking, trying to get his brain to get the message to his body. And it took him a couple seconds, but he finally turned his head and looked right at Moira.

I asked him if he liked the kisses. And, I kid you not, we all heard him say in a little voice, "Uh hunh." Aaron and my jaws dropped. Moira about passed out.

He looked away again. She gave him more kisses. I asked him again if he knew his sister was there. And, again, after a couple second delay, he moved his head and looked at Moira.

Now those are some powerful kisses!

Amy

Encouraging Words

Everyone knows it's a small world, after all. And once you've entered into whatever subculture your life places you, it gets even smaller. One of our subcultures is epilepsy. Another is stem cell treatments. And now and again, these two collide.

We had to set up a special needs trust--a trust that would make sure any money Soren inherited at our death would be safe and that his services wouldn't be taken away due to this money.

We got the name of a lawyer who does this from our friends George and Azita whose son Clayton used to have seizures and is doing so well with the stem cell treatments.

When we met David (the lawyer) we discovered that his daughter Bella also has a seizure disorder and that they had been to the DR twice for injections. Feeling discouraged that her progress was not what they wanted after these injections, they chose to do a 3rd injection in Tijuana. While it's cheaper and much closer to home, the stem cells are older than 12 weeks, thus they could have less potency. This is why we haven't gone there.

Then, on this trip to the DR, we were boarding the plane to go home and Dr. Rader introduced me a man in a baseball cap who looked very familiar. It was David. I had seen him in a suit previously and in my home, not in a foreign country dressed for travel. I finally met Bella, who is a lovely girl who lives up to her name.

In an email exchange, I found out why David and his wife decided to bring Bella back to Dr. Rader and the DR.

"Her progress has been significant--more behaviorally than anything else, but she has progressed in many different ways. Isabella had some test results in the past that showed she could not break down/digest fats properly, and she also had levels of toxic metals that were off the chart. The first two treatments in Dominican Republic we thought didn'’t do anything because we were only looking for the seizures to stop, but we later found out, from a second round of toxic metals tests done after those 2 treatments, that the cells went to assisting her internally in her digestion and also in the natural elimination of her toxic metals. Her tests showed that she was breaking down fats now, and the metals were well within the normal limits. The doctor had never seen 2 test results so different before, especially when nothing else had been done in the interim to address it.

I think the word that best describes her now is that she is maturing into her age nicely, and steadily. The seizures have definitely decreased too, in number and severity. I am looking forward to the day she has a typical EEG.

If you have not seen much yet, don'’t fret. Believe that the cells know where to go first, where they are needed most. It will, soon after that, be a snowball effect. It will seem like his 4th or 5th treatments did the trick, when in reality, the first 3 were 'prepping' him for healing from the next treatments."

These words were very encouraging to me and Aaron. We're already seeing some subtle changes. Soren is more expressive. But we want the big stuff. Crawling, sitting, walking, talking. All those things typical kids do. But as David said, what needs to be done is being done first. The other stuff will follow when those repairs have been done.

Good to hear. And I'm trying my best not to fret.

Amy

Christmas Concussion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Amy

Getting Treatment

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

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

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

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

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

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

Amy

Navigating Seizures

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

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

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

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

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

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

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

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

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

Amy

Microcephaly Update

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

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

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

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

Amy

Back from the DR

Hello All!

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

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

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

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

Thanks for your good thoughts! Love to you all!

Amy

DR Trippin'

We are off to the DR on Wednesday! WAHOOOOOOOO!

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

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

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

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

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

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

Amy

Giving Thanks

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

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

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

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

Amy

Calabasas Classic 5K/10K Run

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

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

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

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

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

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

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

Amy

Genetics

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

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

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

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

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

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

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

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

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

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

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

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

And hope.

Amy

PROM 2006: A NIGHT TO REMEMBER

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

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

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

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

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

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

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

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

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

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

Amy

Update

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

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

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

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

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

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

Amy

IEP Recommendations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Amy

The IEP

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

Alright, you got your wine and cheese? Good.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Amy