Quick Update

Ah, once again I have been neglect in my blogging duties. I apologize. I've been very busy. Here's a quick update...

1.) Soren is now off the anti-virals after we decided they were not the appropriate mode of treatment.
2.) While on the meds, I did get into the habit of feeding Soren breakfast and a snack, which he chowed down with great abandon. Turns out the poor boy was hungry! In the past month, he's gained almost 2 pounds due to this calorie increase.
3.) I took Soren off avocado. But he ended up having a few seizures anyways, so I brought it back.
4.) I discovered that Trader Joe's Edamame and Egglant Hummus are delicious. Soren thinks so too!
5.) Soren's seizures/spasms have been few and far between.

Soren's still staying off cow's milk and cheese at the moment since we actually think this may have helped decrease the seizures a bit. Actual allergy testing may be in Soren's future.

That's it!

Amy

Making New Habits

We all know it's not easy to make new habits and very hard to break old ones. Which is the struggle I am facing now.

Soren is now on an anti-viral medicine. It is a medicine that is to be given three times a day. I give Soren all his meds in the am and pm. And I don't want to bother his school with the middle dose if it ends up not being permanent.

So I'm doing it. Or I'm trying. But this is very much not in my routine, so I'm struggling.

There are various components to my struggle.

1.) The lunch meds...I do well on the weekends, when I feed him lunch. But then when he's back at school, I forget to give him his afternoon dose when he gets home from school. Ugh.

2.) I'm also supposed to be giving him a multi-vitamin, something I've been incredibly lax about doing. I think I gave it to him one day and then have forgotten since.

3.) Soren is currently on 5 meds (3 anti-seizure, 1 antibiotic, 1 anti-viral) In the morning, I used to just plop the pills in his mouth, give him his bottle, and have him swallow them down. Now there are so many, he's choking! And it's not a big breakfast kinda guy.

4.) Due to the diet changes, I need to make sure that Soren is getting in enough calories, so I need to add more food.

So this is the habit I'm trying to form.

1.) Feed Soren a little breakfast (emphasis on little) just to get the pills down. Some banana and Rice Krispies, maybe some Cream of Wheat (if it's allowed). Just something that will do better and no choking.

2.) Feed Soren a little snack after school. Usually he gets off the bus and I just let him chill in his vision box until dinner. But today, having forgotten his lunch meds at Feeding Therapy, I fed him a snack. Now, mind you, he had CHOWED DOWN at Feeding Therapy.

Well, clearly the boy was hungry, because he then wolfed down the snack, pills and all.

Wish me luck. I am a creature of mainly bad habits but I'm hoping these good ones will stick.

Amy

Okay, I'm Back!

Sorry I have fallen off posting yet again! Life has been crazy-busy work work (yay!) and illness (boo!). Soren had a stomach bug right after Spring Break, then a week later he had a fever, then that Friday, his fever returned and wouldn't break. Finally I got him into the doctor and discovered that it was an ear infection. Got Soren on the mend, and then Mo got a cold!

The good news through all of that for Soren is that he had very few seizures---something that is very rare in that situation. We are now seeing a neuro-immunologist who has recommended I take Soren off dairy and put him on anti-virals. I did the dairy first and the lack of seizures continues (last one we saw was Mother's Day). I started the anti-virals today, so we'll see if there is any change.

Next I need to remove avocado, which is going to be hard. 1.) Because Soren loves it and 2.) Because I have very little cooking imagination. But we have a great cookbook on delicious and healthy foods for babies. I will delve into it and see if I can widen Soren's repertoire.

I promise to keep you updated on any changes!

Amy

Depakote

We started Soren on Depakote a few weeks back and are getting some really good results. While we weren't thrilled with the thought of having Soren on 3 anti-epileptic drugs again, with the looping Juvenile Spasm Clusters, it was clearly necessary.

Our original plan was to keep him on as low a dose as possible. The theraputic dose for Soren is 2 pills twice a day. There's no way to split these pills, so I started him on one full pill. It immediately cut down the clusters, just giving him one spasm now and again. But within 5 days, the clusters were back, so we brought in the morning dose.

Again, things got better. We went longer without clusters this time. But then they kicked back in, so we went up to a full dose in the evening. That was last Thursday and the clusters are gone again. I've seen one or two spasms, but nothing really bad. I'm hoping that once this is fully in his blood, it might do the trick. If not, I'll go up that last bit.

I'm pleased that this has knocked down the clusters. Hopefully we have regained some seizure control!

Amy

Seizure Update

So as I wrote previously, on December 3rd, Soren started having what I thought were Absence seizures. They started the night I started Soren's Zonegran wean, so I knew that the two were not related and continued to wean him.

As the wean progressed, the "Absence" seizures grew in length and frequency. Finally, the weekend of February 21st, Soren started having these seizures in clusters. So I contacted his doctor and got the okay to increase Soren's Lamictal dosage.

However, his doctor was concerned and fit Soren into his very busy schedule to check him out. I knew that the chances of Soren having a cluster in front of Dr. Shields were slim, so I video-taped him seizing and burned it onto a DVD. I'm so glad I did, because sure enough, Soren seized in the waiting room, but was happy as a clam in the exam room.

Turns out these are not Absence at all. They are Epileptic or Juvenile Spasms. Now Soren used to have Infantile Spasms, but since he is no longer an infant, they have a new name. Dr. Shields was clearly bummed about this development because we have been on all the "go to" drugs for Spasms. We discussed bringing him back on Zonegran, but I was confident that it would do nothing.

Instead, we have increased his Clobazam by have a pill in the evening. In a couple days we will add another half to the morning dose. If that doesn't work, we are going to start a drug Soren's never tried called Depakote. I know from other parents of kids with Spasms that the Clobazam/Depakote combination is a good one.

I'm hoping the Clobazam increase does the trick, but we'll see what happens. The good thing is he recovers from these just fine--bouncing right back as if nothing happened.

Amy

Little Loops

Hey all,

I know, it has been FOREVER!!! I apologize, but life is busy.

The "little loops" I am speaking of are the Absence loops that Soren has been getting into. They started last weekend (Feb. 20). I noticed it when I was feeding Soren. He had an Absence and recovered. Then he had another. And another. This went on for a solid 3 or 4 minutes. I was actually fearing I was going to have to give him Diastat.

But then, as oddly as they started, they stopped. He was fine, alert, and finished eating as if nothing had happened. He did the same thing on our drive home (we were in Scottsdale). But it passed and all was well.

So I sent an email to Soren's neurologist on Monday and got the okay on Friday to increase his Lamictal by 25 mgs on the evening dose. So we'll see if that has any effect. I'm a little doubtful because the Lamictal doesn't appear to do much, but I could be wrong. I hope I am.

I'll keep you in the loop on the loops.

Amy

One Week To Go!

A week from today, Soren will have his last dose of Zonegran. I am really looking forward to this.

For one, I keep almost blanking on his morning dose because now it's down to 1 pill, only in the morning. Since it's so irregular, I'm beginning to forget.

Second, I'm thinking (and hoping) that the Absence seizures are subsiding. I saw 2 very brief ones today. I mean REALLY short--if I'd a blinked, I'd a missed 'em. And we spent the ENTIRE day together. I even checked in with Aaron to see if he'd seen something I hadn't.

So I'm going to get Soren off this drug and give him a little time to get it completely out of his system. If he's still having some Absence, I'll check on upping his dose of Clobazam. He is clearly growing, so an increase might be needed.

But if they subside, I'll do a happy dance and call myself "Lucky Mama."

Amy

Withdrawal

Soren has continued to have the Absence/Tonic seizures. And while he still bounced back super fast as if nothing happened, they have also gotten stronger and are lasting longer.

I'm hoping against hope that this is all due to the withdrawal of Zonegran. Soren is now on 25 mgs morning and night. The night dose is being dropped on Sunday. And the last morning dose will be eliminated 2 weeks after that. In my fantasy world, once all of this drug is out of his system, the seizures will dissipate.

He has been extra chipper yesterday and this morning. Yesterday after school he was talking and talking. They had done a film shoot at school, so I wonder if he was trying to tell me about how exciting it was. Then at Mo's gymnastics, he started laughing so hard, he had Mo's class busting up as well.

Then this morning he woke with a smile. After he drank his milk he snuggled into me and listened to Aaron, Mo, and I talking about our plans. He smiled even bigger whenever Aaron or Mo were talking and buried his head even closer in to me. He does love his family.

So maybe, just maybe, his body is adjusting to the withdrawal and he's feeling better.

At least that's what I'm going to think it is!

Amy

New Year Update

Happy New Year to All!

Well, our New Year's Day was way less stressful than last year. As you may recall (I know I do), January 1 of 2008, Soren had looping tonic-clonics that caused us to give him not one, but two doses of Diastat.

Amazing what can change in a year. Soren now no longer has tonic-clonics and hasn't needed Diastat in over 6 months!

He is continuing to have the Absence seizures, some now involving his body tensing up. Sadly, even Moira now knows how to identify such unusual behavior. Soren has been doing this since early December, but I was the only one who really caught them. But as the tensing has been added in, they are far more obvious. This weekend, Moira saw him do this while I was out of the room. She came to me and said that Soren did something weird. But it wasn't a seizure. She described it and I told her that, in fact, it was a seizure.

I'm hoping that the more pronounced version of these seizures is a result of the weaning of the Zonegran and that they will disappear once it is fully out of his system. We'll see. If not, I still don't think the Zonegran was helping anything, since I saw one of these while he was still on the stuff. We'll bring it up with Dr. Shields at our next visit if they are still happening.

But all in all, 2009 is starting out much better for our boy. He's happy and responsive. The way he reacts when Aaron walks into the house after being at work is so wonderful. Last night he was smiling so big he practically wiggled and kicked his way off my lap. He knows his Daddy!
EALTHY
I wish you all a happy and HEALTHY 2009!

Amy

6 Month Mark!

Soren has officially been seizure-free of Tonic-Clonic seizures for 6 months! The fact that this milestone fell right around Christmas was great and the best gift we could ever ask for.

Christmas Day with Soren was really fun. Though he really doesn't seem to get the whole present thing, he loves when we are all together. He is full of smiles and wiggles. He got lots of vibrating toys this year which he's found interesting--lots of eyebrow raises. He also got bongo drums from us and drumming music that we hope he grows to enjoy. And then he had some good snuggle time with Aaron, a present both of them like.

So here's to Soren going into the New Year tonic-clonic seizure free!

Amy

Absence

This is not about my absence in posting. This is about Absence (pronounced in the French "Ab-sance") seizures.

The old-fashioned term for an Absence seizure is Petit Mal (as opposed to Grand Mal).

However, for me, an Absence seizure is so petit, comparing to grand is, well, not comparable.

In an Absence seizure, the person stares off into space for any number of seconds and then returns to the scene as if nothing happened. I originally witnessed this in a neurologist's office when I was speaking with a man about Beatles music. Suddenly he stopped, paused, stared into space for a few seconds, and then came back, continuing the conversation as if nothing had happened.

Soren has been having Absence seizures recently. Now he has had these before. But compared to his Infantile Spasms or Tonic-Clonics (Grand Mal), Absence were nothing to write home about. They actually mainly happened when I was weaning him off of Zonegran the fist time.

Now I am weaning him off again. And he is having them again. Now, I would love to blame the Absence on the wean. However, I noticed the first Absence the first night of his wean. Which means it was before any weaning actually took effect. (in other words, plenty of the drug was in his body)

But since then, he's had a number of Absence seizures. They are quick and relatively painless. I mean, they are a bummer to see and freak us out. But he comes back within 2 seconds and it's as if nothing has happened.

I am hoping that, while the initial Absence were not "drug-weaning" related, that the subsequent ones will subside once the wean is finished.

We'll see. He's still a perky, happy boy who hasn't had any tonic-clonics since June (knock wood).

But I'll keep you updated.

Amy

Long Time!

Sorry for my lapse again in posting. I was doing a big, time-consuming job and fell off my blogging duties.

Soren had a great, seizure-free Thanksgiving. Now that's something to be thankful for!

Since I last wrote, Soren had a neurologist appointment. Soren has remained tonic-clonic seizure-free (to the best of our knowledge) since starting the Clobazam on June 21st. So Dr. Shields suggested that we remove one of the other drugs (Zonegran or Lamictal). Aaron and I were a little nervous about this, because why mess with success. But we decided to start weaning Zonegran, taking it really slow. So instead of dropping out one pill a week, we're dropping it out every 2 weeks. If all goes well, he'll be off Zonegran in 11 weeks.

Meanwhile, Soren toughed his way through another cold. This time he lost his voice and had a nasty cough. But he's the funniest sick kid. I kept hearing him making his sad, hoarse sound as I was working. But whenever I looked at him, he was smiling and the sound was him trying to laugh.

He's doing well with his new intensive Physical Therapy, though he hates working so hard (who doesn't?). And we had an assessment for Music Therapy which was really cool. The therapist was trying to get Soren to play peek-a-boo, which Soren has absolutely no interest in. But then he heard a piano in the next room and perked up. We went over to the piano in our room and started playing, my hands over Soren's hands. He loved it! Some smiles and giggles. Very cool.

That's it. I hope to update sooner next time!

Amy

Epilepsy Brainstorm Summit

Last Saturday, I (Aaron) attended the Epilepsy Brainstorm Summit organized by the

Epilepsy Foundation of Greater Los Angeles

In spite of major technical issues and speakers having to sub for other speakers because of the fires, it was an excellent conference. I wanted to share some highlights with you:

-MOST IMPORTANT! There was a detailed presentation warning about the dangers of switching between brand and generics AEDs. In a nutshell, the drug's effect on the patient will differ from brand to generic and from generic to generic depending on the individual manufacturer of the generic. Pay attention to exactly what your pharmacy gives you. Talk to your doctor. This could be the difference between seizure control and not. The Epilepsy Foundation actually has an official statement explaining how epilepsy reacts to drugs differently than other diseases. This form can be sent to insurances and pharmacies expressing the necessity to keep AEDs consistent or to have them JUST DISPENSE BRAND, NOT GENERIC!

-School nurses can train unlicensed staff (teachers, aides, etc.) to administer Diastat. The California Dept. of Education has ruled this. So don't take guff during IEPs. They handed out paperwork to back this up.

-As many folks know, seizures take a tremendous toll not only on the brain, but on the body as a whole, in particular the lungs and heart. Effects include irregular heartbeats and asphyxia. Doctors have known for awhile that Omega 3 is good for the heart. Now there is a study underway to look at Omega 3's effect on the hearts of people with epilepsy. Hopefully it will show that the Omega 3 strengthens the heart cells. Meanwhile Soren is going to be switched to Omega 3 eggs. It can't hurt and hopefully will help.

-Get a special needs trust for your kid. Put your house in a trust to avoid probate. We have the name of a couple of lawyers who handle this.

All four epilepsy centers in LA (UCLA, USC, Huntington, and CHLA) have various studies and projects underway. Some very bright minds are working on cures. Let's continue to hope.

These are just a few tidbits from the day. I would encourage everyone to attend next year. It really is worth it.

On the home front, Amy and are looking into new ways to bathe Soren. He is quite long and getting quite heavy so bending over the bathtub is getting harder. We are looking for a bathing system. (Cause we need more medical equipment in our house.) If anyone has any suggestions or experiences, good or bad, please tell us. We will keep you informed of our progress.

Aaron

Sign the Epilepsy Awareness Petition!

As all of you know, our son Soren suffers from a debilitating form of Epilepsy. One of the tough things about Epilepsy is that people in the general public know so little about it. It is a disease that many either never think about or think is easily controlled by medication.

Sadly, only 70% of those with Epilepsy have seizure control. That leaves 30% suffering from seizures and the after effects of those seizures. 30% searching for the right medication and dealing with the side effects of those meds.

It is a disease with a terrible stigma. It is a disease that can be completely debilitating.

We need to raise awareness of Epilepsy. It doesn’t get the press that many diseases do. But it’s time to change that. You can help. And all it will cost you is a little time. November is Epilepsy Awareness Month and The Epilepsy Foundation needs your help! All I’m asking is that you go to

Epilepsy Petition

and sign!

The Epilepsy Foundation’s goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message!

Collecting signatures is a great way to raise epilepsy awareness. The more we talk about Epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Sign and help make a difference!

Sign for Soren!

Thursdays

Recently Thursdays are a strangely contemplative for me. At least for about 10 minutes. On Thursdays I pick Soren up early from school to take him to Feeding Therapy. After we get home, we walk to school to pick up Moira. This is where I get contemplative.

Soren turned 5 this year. The year of kindergarten. If Soren was a typical kid, he would be going to kindergarten at Moira's school. Lots of my fellow moms have daughters Soren's age that are now attending kindergarten in these classes. I've seen them grow up through the years, but never really compared them to Soren.

But now when Soren and I go to pick up Moira, I see these lovely girls running about. I see that they look at Soren slightly confused. And I think of how it should have been. When Soren and I came to pick up Moira, those girls should have been delighted to see their friend Soren. I'm sure some of them would already have crushes on him because he's quite a handsome fellow. He might play with them happily. Or he might be shy, not wanting to hang around with the girls. Or he might have his own group of buddies to run around and be boyish with.

So I get a little sad. I think of what could have--should have--been. Then Moira shows up, we head home, and I forget about it all. Mostly. Until the next Thursday.

Amy

BUS-TED

We have had many bus drivers since Soren started riding the bus two years ago. Our first was our best. His name is Phil and he was a seasoned driver. He showed up on time, he was friendly, and he really liked Soren. He liked him so much he stuck with Soren's route through that first summer even though he could have been moved to an easier one.

But the last September, Phil was moved to another route. Still he checks on Soren every time he's at the school. They are buds. So we got a new driver. Actually we probably had a number of them until we got Ebony. Ebony was sweet. She loved to hear Soren's laugh when she drove, which for some reason he did often when he was with her. She watched as our ramp was being built, anxious to see it finished. Loading Soren up was much more difficult before the ramp. She was also looking forward to the red curb because people were parking into my driveway space making it really hard for Ebony to get the bus in. But just as the ramp was finished and the curb was being painted, Ebony moved back to Ohio due to the economics of L.A.

Next we got Mr. Grouchy. Now I don't know Mr. Grouchy's name because he never told me. He was clearly bitter about being a bus driver and let it show. I could barely get a hello from him and I'm a friendly gal. When he returned to pick Soren up after Spring Break, I asked if he had a nice vacation. He grumbled at me quite angrily that he didn't have a break--he had to work--as if this was my fault.

Mr. Grouchy trained a number of people to try and take over the route. First there was Mr. Dimbulb. Mr. Dimbulb had a tendency to trip over the bus lift as he was backing Soren onto it. Often he couldn't work the lift because he had trouble maneuvering the buttons while using his reading glasses.

The first day Mr. Dimbulb was on his own, without Mr. Grouchy, he showed up 15 minutes early. He was lucky I was ready with Soren because, had it been bath day, I wouldn't have been. I told him he was REALLY early. I tried to tell him that, while this was fine, he had to tell me BEFORE he showed up early. He acted like he couldn't understand my English. He then tried to tell me that this time worked better for him--that he was changing the schedule. As he left, I really questioned sending Soren off on the bus with him. I called the bus dispatch to tell them about my interaction, asking if they could find someone who spoke Spanish to make it clear that he needs to tell me if he's changing the schedule. The folks there told me 1) That he's not allowed to change the schedule and 2) He speaks perfectly good English. He couldn't have gotten the job without that. So he was totally hosing me pretending he couldn't understand or talk to me!

That afternoon he was LATE. Really, really, really late. So late I was freaking out fearing that I had made the worst mistake of my life letting him take Soren that morning. I called dispatch to see what was happening. Turns out the bus lift broke down and then had to get him a new bus with one that worked (would have been nice if they called). Hearing this I was pretty confident that the lift was just fine. I had seen Mr. Dimbulb fail to work that lift so many times I figured he just thought he broke it. He finally showed up with Soren, safe and sound.

The next morning Mr. Grouchy was back driving the bus. I asked what happened to Mr. Dimbulb. Mr. Grouchy said he was reassigned. Yeah, right.

Next we had a young gal who was nice enough and showed up on time more or less. Whenever Mr. Grouchy had to substitute for her, I got the feeling he didn't like her. She was gone when summer school began and Mr. Grouchy became our driver for the summer. That was a long, grouchy summer.

This fall, a nice guy--let's call him Mr. Nice Guy--showed up to take over Soren's route in a big bus. The first day he was late. But every day after that he showed up on time and dropped Soren off by 3:00. He was a seasoned pro, he had a good sense of humor, and he liked Soren. I was really happy with this change.

But good things just don't last in the bus driving world. Last week Mr. Nice Guy was training another new gal to take over Soren's route. She drives a small bus. She's also very nice. But, being new, she is doing everything VERY SLOWLY. She's not on time with pick-up or drop-off. Once she gets Soren on the bus it takes forever for him to get his chair tied down. And when she drops him off, we're in the house a good 5 minutes before she finally leaves.

The glorious part about this new bus driver happened yesterday. As I mentioned in my previous post, we had 5 feet of our curb painted red so that nobody would park there. This way the bus would have room to pull in and load up Soren. Well, yesterday some joker dropping off his kid at Moira's school decided to park not only in the red all the way to the edge. I thought of going out and explaining the situation, asking him to kindly move his car. But I just wasn't in the mood to get yelled at or had eyes rolled at me.

Well, while he was gone, the bus pulled up to load up Soren. The way she had to pull up totally blocked this car from getting out. I took Soren, the New Gal got him on the bus, and then the guy returned to his car.

And I just sat at my window and watched. And smiled. The clock was ticking. I don't know what the New Gal was doing. She had to be tying Soren's chair down with ropes and chains and belts. That bus was parked there for a good 5 to 7 minutes. And that guy in the car was trapped. It was so satisfying. He had nobody to blame but himself. His eagerness to do something quickly, my red-painted curb be damned, only cost him a bucket of time. I was never so happy to have a driver move so slowly.

The lack of motion was poetry in motion.

Amy

Eye Sight Update

I took Soren to his neuro-ophthalmologist today and we got a really good report. Dr. Borchert was really impressed with the progress that Soren, overall, is making. He noted that he like a different kid compared to 6 months ago. Much more alert and not fighting him. He was also impressed that Soren actually took interest in watching TV, something that has developed quite recently.

On the eye front, I told Dr. Borchert that we've noticed Soren looking at us from a distance more. However when we bring him close, he loses interest. We thought he might need glasses for this. But after checking Soren, Dr. Borchert said that it doesn't seem that Soren needs glasses. Instead, he thinks that Soren's cortical visual impairment is causing the problem.

In basic terms, we all have blind spots in our vision. Due to Soren's seizures (and possibly one of his previous meds), he has more blind spots than usual. So, from afar, he might be able to see things better because he can see through the holes. But up close, things may get blocked.

The good news is, these holes can fix themselves as Soren continues not to seize and things start working better in his brain.

The bad news is, we think Soren had one of his night/waking seizures this morning. Aaron heard him making noise and just thought he was talking in his sleep. But when we went to get him up, he had that same old stiffness that's been gone for over 3 months. Now, his PT sessions have been extra rough and I know they've been stretching him really hard. But putting the noise Aaron heard and the pain together seems to point to more seizures. And while this is a bummer, at least he didn't continue them into the day. So we're going to watch this and see about increasing his dose of Clobazam if they continue.

Amy

Amy and the ADA

I've been meaning to write about this for a while, but have always ended up writing about something else. I never thought I would be making use of the Americans with Disabilities Act, but use it I have and with good turn out.

We live close enough to walk to Moira's school. The trouble was, when walking with Soren, it was tricky to get across the street. Where the crosswalk is, there was a very high curb. High for the kids walking. Even a little high for my short little legs. So when I walked Mo to school with Soren, we would have to 4-By it off the curb. This was quite hard in Soren's old wheelchair/stroller. So on off-hours at school, I would not use the crosswalk and would zip Soren and I across from one driveway to the other. This was kind of dangerous because the street is a busy one. I was even given a finger wagging by the school secretary one time when I did this.

So, one day I was picking up Moira and came across another mom who was walking her son in a typical stroller. She too had to 4-By it and commented on how much easier this would be if there was a slope instead of a curb. I knew, with Soren's disability, I could actually get something done about this and help everyone crossing the street to get to or from school.

I did a little web search and found the ADA person to call in our city. I left a message stating the situation. Mike called me back the next day with the most sincere voice and earnest interest in getting this situation solved. Within a week, workers from the city were marking up the sidewalk in preparation for what is officially known as a "curb cut." Mind you, I called about this in around October of last year. During Christmas break of last year, the workers came and, by the time school was back in session, the curb cut was done and crossing the street was easier for everyone. Especially for me when we got Soren's new heavy-duty wheelchair.

The second issue came up regarding Soren's bus pick-up. We live close enough to the school that people who are dropping off or picking up their kids often block our driveway. On garbage day, people would even pull my trashcans up onto the curb and then park blocking the cans. It got to the point that I was having to police activity myself, yelling at parents who blocked my driveway. One time I came home during Kindergarten pick-up and was totally blocked. So I just sat there waiting, blocking the street, until the woman returned with her child. What amazes me is how innocent people act, as if they didn't know it was a driveway to someone's house. Or the people who actually get mad at me for calling them out (and I'm always polite).

Now, I'm sure parents did this since we originally moved in. However, I never knew about it because I worked during the day at an office. But now I freelance from home. And I have to get Soren onto the bus in the morning and off of it in the afternoon. This is decidedly hard when cars are blocking my driveway where the bus needs to pull to the side.

So once again I called Mike to see if I could have a Blue Curb painted for handicap access only. My request was forwarded to the right department and soon I got a letter of refusal--our city no longer did Blue Curbs. I got on the horn and tried to find out if this was legal according to the ADA. Turned out that lots of cities don't even have blue curbs. So I called Mike again and explained the situation more. He helped negotiate 5 feet of red, no-parking on our side of the driveway (which we share with our neighbors). This way the bus--a small bus at that time--could pull in without issue.

Now for the most part, people behave and don't block the red zone. But not always. And the universe is getting its sweet revenge on those not following the rules because now, instead of riding a small bus, Soren's bus is HUGE! It can't pull over at all due to all the cars. So it just blocks the street. I just smile and get Soren on and off the bus as quickly as I can.

But I must say that the city's response to both issues were quite quick and painless. We are really lucky to have the ADA!

Amy

Happy 100!

Soren has been tonic-clonic free for 100 days! Yahoo!

In other news, we had his 3rd IEP (Individualized Education Plan) earlier this month. This is where we sit down with his teachers and therapists to see how Soren has progressed through the year and what goals we should have for the next year. I've written before that this is a big meeting where big decisions are made. This one went even smoother than last year's. Soren is going to continue getting the same services (PT, OT, Vision, and Speech Therapies) from the school or at off-site clinics.

One big change was that for one of Soren's PT sessions, we are going to an intensive therapy clinic called Joy for Kids. There Joy, the therapist, offers Therasuit therapy using a Universal Exercise Unit. We did an 3 week intensive of this 2 years ago and Soren made great progress. Joy has a contract with Soren's school district, so we decided to change his hour of school-based therapy to Joy's clinic. It means I have to drive Soren (he's taken to his other PT/OT session on the bus), but we think it's totally going to be worth it. He really needs this extra challenge to kick things up.

And with being seizure-free we have high hopes for this next school year!

Amy

Happy 5th Birthday, Soren!

Soren is 5 years old today! We celebrated this weekend by going to Aaron's hometown of Enumclaw for a joint birthday with his Grandma Kris (whose birthday is the day before). The trip was great. Soren traveled wonderfully as usual (he was actually quite excited on the plane both over and back).

And his gift to himself and all of us for his birthday was 3 Months of Seizure Freedom!!!

Here's hoping this will the best, seizure-free year ever!

Amy