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
Tuesday, October 14, 2008
Thursday, October 09, 2008
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
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
Tuesday, October 07, 2008
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
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
Tuesday, September 30, 2008
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
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
Monday, September 22, 2008
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
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
Monday, September 15, 2008
Slacking in My Blogging Duties!
Sorry about my slacking off. As usual, things have been busy! First of all, we had the Triathlon and Team Soren did really well despite some hardships. The good news is, everyone finished safely! Eric Germansky, our lone, solo triathlete did a great job in the swim, bike, and run. Our women's relay actually came in second of all the women's relay teams. Rock on, ladies! And our men's team also finished well despite Keith getting not one, but two flat tires on the ride! But he got those fixed and powered on! The Team Soren Support Team was at the L.A. Live finish in downtown cheering our team on. It was fantastic!
Later that day, we had a party/silent auction/fundraiser honoring our athletes and celebrating Team Soren's success. A good time was had by all.
But my current great news is that Soren has now gone 86 days without a seizure. And he survived a second cold without any breakthrough seizures. He woke up stuffy on Friday with no precursor or seizures the day before. And none the entire weekend. We were a little nervous because, for the first time in almost a year, Aaron and I went away without the kids. We did a quick 27 hour trip to the Bay Area. I was a little nervous when Soren woke with that cold on Friday. But since he didn't have any seizures that day and his respite workers know how to give the Diastat, I felt okay about leaving. And Soren came through with flying colors, which made our trip all the more enjoyable!
I just gotta say, I love Clobazam!
Amy
Later that day, we had a party/silent auction/fundraiser honoring our athletes and celebrating Team Soren's success. A good time was had by all.
But my current great news is that Soren has now gone 86 days without a seizure. And he survived a second cold without any breakthrough seizures. He woke up stuffy on Friday with no precursor or seizures the day before. And none the entire weekend. We were a little nervous because, for the first time in almost a year, Aaron and I went away without the kids. We did a quick 27 hour trip to the Bay Area. I was a little nervous when Soren woke with that cold on Friday. But since he didn't have any seizures that day and his respite workers know how to give the Diastat, I felt okay about leaving. And Soren came through with flying colors, which made our trip all the more enjoyable!
I just gotta say, I love Clobazam!
Amy
Saturday, September 06, 2008
Go Team Soren!
Tomorrow is the Los Angeles Triathlon and Team Soren will be racing for our boy! Team Soren consists of Eric Germansky, who will be doing the entire triathlon, and two relay tri-teams: Chris Webb, Keith Anyon, and Ezra Weisz on our male team and Karen Wilson,
Kristen Van Rooyen, and Susan Reedy on our female team. The lovely Julie Miller had to step down from being on that team due to an injured back. Please think good thoughts for her and for all the athletes to have a good, safe, and successful race!
The Team Soren Support Team will be decked out in our official orange Team Soren T-shirts. They are awesome and I'll be sure to take pictures to show us wearing our colors!
It's not too late to donate! Please click on the donation button to your right and support Team Soren!
Go Team Soren!
Amy
Kristen Van Rooyen, and Susan Reedy on our female team. The lovely Julie Miller had to step down from being on that team due to an injured back. Please think good thoughts for her and for all the athletes to have a good, safe, and successful race!
The Team Soren Support Team will be decked out in our official orange Team Soren T-shirts. They are awesome and I'll be sure to take pictures to show us wearing our colors!
It's not too late to donate! Please click on the donation button to your right and support Team Soren!
Go Team Soren!
Amy
Monday, August 18, 2008
Been Busy!
Sorry I haven't updated in a bit. Things have been crazy-busy with the kids finishing up their summer vacation. Soren is done with summer school and has 3 weeks off before the new school year begins. So now he's in summer camp from 9-12 at his therapy center. He was a little grumpy the first day of last week. We think he may have thought he had to do therapy there. Once he realized it was camp, he had a good time.
And the update on his cold/seizure control is that he had this lousy cold for about a week and had no visible seizures!
We started the Clobazam 2 months ago this Thursday. That day (June 21st) was the last time I had to give him Diastat for his tonic-clonic seizures. We also noted that we didn't hear Soren have any night time seizures during our weekend in San Diego when we all shared a room. He does wake up some mornings with a little stiffness, but we really think this is because he's getting his legs into funny positions that he can't get himself out of.
Soren is alert, happy, a laughing a lot. People are really noticing the difference! Now if the FDA would just approve this amazing drug!
Amy
And the update on his cold/seizure control is that he had this lousy cold for about a week and had no visible seizures!
We started the Clobazam 2 months ago this Thursday. That day (June 21st) was the last time I had to give him Diastat for his tonic-clonic seizures. We also noted that we didn't hear Soren have any night time seizures during our weekend in San Diego when we all shared a room. He does wake up some mornings with a little stiffness, but we really think this is because he's getting his legs into funny positions that he can't get himself out of.
Soren is alert, happy, a laughing a lot. People are really noticing the difference! Now if the FDA would just approve this amazing drug!
Amy
Thursday, August 07, 2008
Unprecedented
Soren woke up this morning very cranky. When I was giving him his milk, I noticed his nose was stuffy. I was afraid he might have a cold. Then when I stripped him down for his bath, I noticed he was a little warm. Taking his temp, it came to 100.9. Yep. Sick.
What is unprecedented is that his cold was not foreshadowed with a round of seizures. In all of Soren's life, when his defenses are down (or in the process of getting knocked down) he has seizures. We always freak, worrying why he's having the seizures, and then the next day he'll be sick.
But yesterday he was fine. He was happy. He went to school. No seizures. Just the cold today. It's gotta be the Clobazam. And I'm crossing my fingers that, for the first time, Soren has a cold--and just a cold--like any other kid.
Amy
What is unprecedented is that his cold was not foreshadowed with a round of seizures. In all of Soren's life, when his defenses are down (or in the process of getting knocked down) he has seizures. We always freak, worrying why he's having the seizures, and then the next day he'll be sick.
But yesterday he was fine. He was happy. He went to school. No seizures. Just the cold today. It's gotta be the Clobazam. And I'm crossing my fingers that, for the first time, Soren has a cold--and just a cold--like any other kid.
Amy
Monday, August 04, 2008
Team Soren Blog!
You can also donate to Team Soren by clicking on the DONATE button either on that blog or here on Soren's blog!
You will also see our cool Team Soren logo! Check it out!
Amy
Thursday, July 31, 2008
Capper-Friendly Comic Con
First, let me explain the term "cappers." I heard a wheelchair bound woman use it once, talking about handicap accessible parking, calling it "capper parking" and referring to herself as a capper. I liked the simplicity and "coolness" of it.
Last weekend we all went to the San Diego Comic Con. The last time we went was 2 years ago, when Soren was 2 going on 3. While we knew about his disabilities, he was merely in a typical stroller, not a wheelchair. We had gone through the Registration Line like everyone else, is always long and annoying. Back then, we didn't even look for any sort of disabled help. I guess we weren't as immersed in special needs as we are now.
So when we went to register Friday morning, we gave ourselves a full hour to stand in line. As we headed to the Con, there were swarms of people. We actually passed the Disabled Services and kept walking, figuring we would go there if we needed something later. But when we tried to follow the able-bodied crowd to registration (which is up a LONG escalator), we were quickly directed back to Disabled Services. There we found the Land of the Comic Con Disabled. We gave them the staff our information and they went upstairs and got our passes. While we waited, we visited and chatted with other disabled folks. Within 20 minutes (probably less) we had our passes. They explained that if we wanted to go to panels, there were special places for wheelchairs and gave us little cards to put on our chairs so we could sit with Soren.
So we were ready to go. The only problem was, we still had 40 minutes to kill before the Con opened! If we'd only known! When the Con doors did open, they had the disabled folks get a "rolling" start before the able-bodied folks stampeded in.
We then went to get into a Powerpuff Girls panel. There was a HUGE line. I thought we were doomed. Then I remembered the special needs special spots. We were quickly brought in and they found a place where Soren and all of us could watch together. (I must admit, I did feel a bit guilty about this. I mean, all those folks were standing in line! For the next panels, I went alone and showed up early.)
It's rare that I find people with disabilities needs really catered to. I was really surprised and impressed by how the staff at Comic Con accommodated all of the cappers.
Amy
Last weekend we all went to the San Diego Comic Con. The last time we went was 2 years ago, when Soren was 2 going on 3. While we knew about his disabilities, he was merely in a typical stroller, not a wheelchair. We had gone through the Registration Line like everyone else, is always long and annoying. Back then, we didn't even look for any sort of disabled help. I guess we weren't as immersed in special needs as we are now.
So when we went to register Friday morning, we gave ourselves a full hour to stand in line. As we headed to the Con, there were swarms of people. We actually passed the Disabled Services and kept walking, figuring we would go there if we needed something later. But when we tried to follow the able-bodied crowd to registration (which is up a LONG escalator), we were quickly directed back to Disabled Services. There we found the Land of the Comic Con Disabled. We gave them the staff our information and they went upstairs and got our passes. While we waited, we visited and chatted with other disabled folks. Within 20 minutes (probably less) we had our passes. They explained that if we wanted to go to panels, there were special places for wheelchairs and gave us little cards to put on our chairs so we could sit with Soren.
So we were ready to go. The only problem was, we still had 40 minutes to kill before the Con opened! If we'd only known! When the Con doors did open, they had the disabled folks get a "rolling" start before the able-bodied folks stampeded in.
We then went to get into a Powerpuff Girls panel. There was a HUGE line. I thought we were doomed. Then I remembered the special needs special spots. We were quickly brought in and they found a place where Soren and all of us could watch together. (I must admit, I did feel a bit guilty about this. I mean, all those folks were standing in line! For the next panels, I went alone and showed up early.)
It's rare that I find people with disabilities needs really catered to. I was really surprised and impressed by how the staff at Comic Con accommodated all of the cappers.
Amy
Wednesday, July 02, 2008
Quick Update
Hello!
Just wanted to update everyone before the big 4th of July weekend. The art opening went off very nicely last night. A few pieces sold. And the art will be up for the next month at Cartoon Network if you want to swing by and buy something. Thanks to everyone Cartoon Network for all their help in hanging the show and for throwing the party!
On Saturday, Soren will be up to a therapeutic dose of Clobazam. So far so good. He's not extra loopy or anything. Now we just have to see if it stops the seizures.
Also on Saturday, my brother Patrick will be getting married and Soren will be the ring bearer. Aaron will stroll Soren down the aisle where the rings will be handed off to me (my sister and I are standing up for Patrick). I must admit that I am both excited and nervous about Soren's ring bearing duties. Will he be awake for it or will he just shut down? Will he be happy and chatty and disturb the ceremony? Or will he be angry like he was at the art opening last night? As with everything, it's unpredictable. But I'll send an update after the event! (and hopefully pictures too)
Amy
Just wanted to update everyone before the big 4th of July weekend. The art opening went off very nicely last night. A few pieces sold. And the art will be up for the next month at Cartoon Network if you want to swing by and buy something. Thanks to everyone Cartoon Network for all their help in hanging the show and for throwing the party!
On Saturday, Soren will be up to a therapeutic dose of Clobazam. So far so good. He's not extra loopy or anything. Now we just have to see if it stops the seizures.
Also on Saturday, my brother Patrick will be getting married and Soren will be the ring bearer. Aaron will stroll Soren down the aisle where the rings will be handed off to me (my sister and I are standing up for Patrick). I must admit that I am both excited and nervous about Soren's ring bearing duties. Will he be awake for it or will he just shut down? Will he be happy and chatty and disturb the ceremony? Or will he be angry like he was at the art opening last night? As with everything, it's unpredictable. But I'll send an update after the event! (and hopefully pictures too)
Amy
Saturday, June 21, 2008
Clobazam
When last I wrote about discovering Soren's night seizures (which I now have the song "Night Fever" by the Bee Gees in my head but instead I sing, "Night Seizures, Night Seizures. We know how to do it.") I noted that we were looking into starting Soren on Clobazam and possibly weaning him off another drug.
Well, we didn't start Soren on the Clobazam yet because, though we had a little secret stash, we found out that getting more was a little more involved than expected. Since it is not FDA approved, we not only had to get a prescription but also had to get a letter of necessity. And since Soren's doctor was out of town, there was going to be a delay. Then that information had to get to the pharmacy in New York that is approved to distribute it. Then I had to call the pharmacy and order the drug, since we have to pay out-of-pocket. And then it had to be sent to UCLA and then to us! Whew! So we didn't want to start Soren on a new drug and then run out of it before we had our refill. The good news is that we got the Clobazam yesterday and will start bringing him onto it tonight.
I actually very briefly considered not doing this--or at least pausing. Soren's legs haven't seemed as painful the past couple weeks when he wakes up. And this past week he's been really active. Usually when we put him to bed, he stays in one spot, on his back all night. But recently he's been moving all over the bed, sleeping on his side, and even sleeping on his belly. It's been great to see the activity. And it's been a relief that he's been on his back less since we worry about skin breakdown.
But my thought to pause was completely obliterated this morning. Soren, who went to bed a little later than usual, was sleeping-in rather late. At first I thought nothing of it but then, just as I was beginning to worry that something else might be up, he had a big tonic-clonic. I then realized that he had probably had a few others earlier this morning, thus the late sleeping. When he finally woke up, I got his meds into him and tried to give him milk. But he seized again. I gave him Diastat and now his down for the count. So the Clobazam will begin tonight. Hopefully we will get the results we're looking for (i.e. no seizures).
As a side note, we did not end up weaning either of Soren's other meds. I asked and got a resounding NO (or it at least seemed resounding in the email since all it said was NO). We see Soren's neurologist in a month and will be on the full dose of Clobazam by then. We'll discuss cutting out another drug at that point.
I'll update you as things continue.
Amy
Well, we didn't start Soren on the Clobazam yet because, though we had a little secret stash, we found out that getting more was a little more involved than expected. Since it is not FDA approved, we not only had to get a prescription but also had to get a letter of necessity. And since Soren's doctor was out of town, there was going to be a delay. Then that information had to get to the pharmacy in New York that is approved to distribute it. Then I had to call the pharmacy and order the drug, since we have to pay out-of-pocket. And then it had to be sent to UCLA and then to us! Whew! So we didn't want to start Soren on a new drug and then run out of it before we had our refill. The good news is that we got the Clobazam yesterday and will start bringing him onto it tonight.
I actually very briefly considered not doing this--or at least pausing. Soren's legs haven't seemed as painful the past couple weeks when he wakes up. And this past week he's been really active. Usually when we put him to bed, he stays in one spot, on his back all night. But recently he's been moving all over the bed, sleeping on his side, and even sleeping on his belly. It's been great to see the activity. And it's been a relief that he's been on his back less since we worry about skin breakdown.
But my thought to pause was completely obliterated this morning. Soren, who went to bed a little later than usual, was sleeping-in rather late. At first I thought nothing of it but then, just as I was beginning to worry that something else might be up, he had a big tonic-clonic. I then realized that he had probably had a few others earlier this morning, thus the late sleeping. When he finally woke up, I got his meds into him and tried to give him milk. But he seized again. I gave him Diastat and now his down for the count. So the Clobazam will begin tonight. Hopefully we will get the results we're looking for (i.e. no seizures).
As a side note, we did not end up weaning either of Soren's other meds. I asked and got a resounding NO (or it at least seemed resounding in the email since all it said was NO). We see Soren's neurologist in a month and will be on the full dose of Clobazam by then. We'll discuss cutting out another drug at that point.
I'll update you as things continue.
Amy
Wednesday, June 11, 2008
Sign o' the Times
As I've noted before, Soren attends an all special needs school. We love this school--the teachers, the aids, the secretary, the nurse, the principal. They work Soren hard and clearly care for him and all the other kids.
But every time I went to pick Soren up for Feeding Therapy, I was met with this sign...
There's one as you drive in and one as you drive out, hitting you coming and going. Now, this is a common sign which simply means, "Please drive slowly, there are children present." But in the context of a school for children with special needs, it seemed like an advertisement. "SLOW CHILDREN! GET YOUR SLOW CHILDREN HERE!" Every time I drove in I was like, "Aw, come on! Really?"
I voiced this to Aaron who took action. At Soren's Open House, we approached the principal and asked if we could replace the Slow Children sign with a Caution Children sign. We wanted to include a figure that was wheelchair bound. We replaced the other sign with this...
I know it may seem like a little thing, but now when I drive into school, I smile.
Amy
But every time I went to pick Soren up for Feeding Therapy, I was met with this sign...
There's one as you drive in and one as you drive out, hitting you coming and going. Now, this is a common sign which simply means, "Please drive slowly, there are children present." But in the context of a school for children with special needs, it seemed like an advertisement. "SLOW CHILDREN! GET YOUR SLOW CHILDREN HERE!" Every time I drove in I was like, "Aw, come on! Really?"
I voiced this to Aaron who took action. At Soren's Open House, we approached the principal and asked if we could replace the Slow Children sign with a Caution Children sign. We wanted to include a figure that was wheelchair bound. We replaced the other sign with this...
I know it may seem like a little thing, but now when I drive into school, I smile.
Amy
Tuesday, June 03, 2008
LA Triathlon! Join TEAM SOREN!
On Sunday, September 7th, our friend Eric is going to compete in the Los Angeles Triathlon. His goal for doing this event is to raise funds for Soren for another stem cell treatment. In addition to this, he and his wonderful wife Sue are going to throw an after-party/silent auction/rousing night of entertainment that is sure to be a blast!
We think it would be great to create Team Soren, pooling together anyone athletically inclined who is interested in doing the LA Triathlon and raising funds for Soren. The LA Triathlon offers the Sprint Distance - .6K swim, a 12 mile bike and a 5K run – and also the Olympic Distance - a1.2 K swim, 25 mile bike race and a 10K run.
If you have never done a Triathlon but always wanted to, this is your chance. We will provide you with a training schedule that will prepare you for the race as well as organizing a couple training clinics in which we will share great race tips and transition techniques.
Now, if you are interested in this, but are not up to running, cycling, and swimming, never fear! We are also putting together relay teams. So if you can run like the wind, but you can’t cycle for beans and/or the thought of swimming in the ocean makes your heart sink, we will match you up with folks who can.
But, to do this, WE NEED YOU to join Team Soren! “What do I get for joining Team Soren?” you ask. First of all, we will cover your entry fees. Secondly, we will provide you with a fantastic Team Soren shirt to race in.
We are also designing Team Soren shoes by Nike. Now, we can’t pay for these, but if you are interested in purchasing them as a team member, they will be available.
And lastly, you will get to come to the awesome after-party where you will be treated like a god for busting your butt and raising funds for Soren!
Also, by competing in the LA Triathlon, you will receive a Finishers Medal, a Tee Shirt and tons of other goodies. For more information, check outThe LA Triathlon Site
So if this sounds like something you really want to do—either the entire triathlon or just a portion—please email me at amykeatingrogers@pacbell.net. Please also feel free to email Eric Germansky at ericgerm@sbcglobal.net if you have any questions about the race.
Thanks!
Amy
We think it would be great to create Team Soren, pooling together anyone athletically inclined who is interested in doing the LA Triathlon and raising funds for Soren. The LA Triathlon offers the Sprint Distance - .6K swim, a 12 mile bike and a 5K run – and also the Olympic Distance - a1.2 K swim, 25 mile bike race and a 10K run.
If you have never done a Triathlon but always wanted to, this is your chance. We will provide you with a training schedule that will prepare you for the race as well as organizing a couple training clinics in which we will share great race tips and transition techniques.
Now, if you are interested in this, but are not up to running, cycling, and swimming, never fear! We are also putting together relay teams. So if you can run like the wind, but you can’t cycle for beans and/or the thought of swimming in the ocean makes your heart sink, we will match you up with folks who can.
But, to do this, WE NEED YOU to join Team Soren! “What do I get for joining Team Soren?” you ask. First of all, we will cover your entry fees. Secondly, we will provide you with a fantastic Team Soren shirt to race in.
We are also designing Team Soren shoes by Nike. Now, we can’t pay for these, but if you are interested in purchasing them as a team member, they will be available.
And lastly, you will get to come to the awesome after-party where you will be treated like a god for busting your butt and raising funds for Soren!
Also, by competing in the LA Triathlon, you will receive a Finishers Medal, a Tee Shirt and tons of other goodies. For more information, check out
So if this sounds like something you really want to do—either the entire triathlon or just a portion—please email me at amykeatingrogers@pacbell.net. Please also feel free to email Eric Germansky at ericgerm@sbcglobal.net if you have any questions about the race.
Thanks!
Amy
Thursday, May 29, 2008
Memorial Day Party
We've been going to the same Memorial Day Party for many years. It's thrown by a great family, the husband of which I used to work with, so it's a gathering of my former co-workers who have all become good friends. When the parties started out, some of us were married but none of us had kids. Now most of us are married and kids are running around all over the place. Now that we don't all work together, it's a chance to catch up, see how much everyone's kids have grown, and compliment each other on the fact that, despite our children growing, we all don't look a day older.
For me, it's also a chance to show how well Soren is doing. When he first started attending, he was not doing well at all. He had just started having seizures about 3 months before. He was floppy and we were very overwhelmed. But each year Soren came back, everyone would comment on his progress--more alert, better strength, moving more.
This year when we headed off, I was feeling a little sad, feeling like in the year that had passed, Soren hadn't really moved ahead much. I figured that, like the year before, we would sit on a blanket and I would either let him stretch out or sit him up figuring I would have to support him a lot. I was feeling rather sorry for him and myself (boy, I'm fun at parties, hunh?)
But when we sat down, I put him between my legs in "ring sitting" and then I sat back as Soren supported himself for a good 40 minutes to an hour! I was stunned. There was only one time when he toppled over onto my legs--and that was near the end when he was tired. I didn't need to touch him, I was not reminding him to hold his head up, and he just sat there like a big boy. I don't know if anyone else was impressed by his progress, but I was blown away by it.
Clearly I had not sat like this with him in a long, long time. So the credit for his progress doesn't go to me. It goes to Soren's therapists and his teachers. They push that boy to the limit. I went to school the other day and Soren was sitting up against a wall--he was crumpled over, but I know when he was first seated there he was sitting up. And I know he could pull himself up if he wanted. His teachers put him in this position a lot--this way he can't fall back and rolling forward onto a soft mat is quite harmless. And he can sit there on his own for a long time!
Oh, and the credit also goes to Soren. Despite hating to work, he works very, very hard. He may not like it, but he does it, and he's changing because of it.
But back to the party. It was great to see everyone's kids running around. Sometimes this makes me sad because Soren isn't running with them. But I was so happy with what he was doing, I didn't think about what I wished he was doing.
That day one of my friend's sons asked his mom a very good question about Soren. He asked how much fun Soren has in a day. He was very concerned about this. She told him that while Soren may not have fun like other kids, when he's not having fun, he lets people know it (and boy is that true). But Soren was sitting there, looking around, observing as he does. He was outside with the breeze blowing and people laughing. Though he was sitting, he wasn't stressed about it. He was in the middle of the action, which he enjoys. So as fun goes, I think Soren was enjoying his version of it. But it was a good question that really made me think.
Amy
For me, it's also a chance to show how well Soren is doing. When he first started attending, he was not doing well at all. He had just started having seizures about 3 months before. He was floppy and we were very overwhelmed. But each year Soren came back, everyone would comment on his progress--more alert, better strength, moving more.
This year when we headed off, I was feeling a little sad, feeling like in the year that had passed, Soren hadn't really moved ahead much. I figured that, like the year before, we would sit on a blanket and I would either let him stretch out or sit him up figuring I would have to support him a lot. I was feeling rather sorry for him and myself (boy, I'm fun at parties, hunh?)
But when we sat down, I put him between my legs in "ring sitting" and then I sat back as Soren supported himself for a good 40 minutes to an hour! I was stunned. There was only one time when he toppled over onto my legs--and that was near the end when he was tired. I didn't need to touch him, I was not reminding him to hold his head up, and he just sat there like a big boy. I don't know if anyone else was impressed by his progress, but I was blown away by it.
Clearly I had not sat like this with him in a long, long time. So the credit for his progress doesn't go to me. It goes to Soren's therapists and his teachers. They push that boy to the limit. I went to school the other day and Soren was sitting up against a wall--he was crumpled over, but I know when he was first seated there he was sitting up. And I know he could pull himself up if he wanted. His teachers put him in this position a lot--this way he can't fall back and rolling forward onto a soft mat is quite harmless. And he can sit there on his own for a long time!
Oh, and the credit also goes to Soren. Despite hating to work, he works very, very hard. He may not like it, but he does it, and he's changing because of it.
But back to the party. It was great to see everyone's kids running around. Sometimes this makes me sad because Soren isn't running with them. But I was so happy with what he was doing, I didn't think about what I wished he was doing.
That day one of my friend's sons asked his mom a very good question about Soren. He asked how much fun Soren has in a day. He was very concerned about this. She told him that while Soren may not have fun like other kids, when he's not having fun, he lets people know it (and boy is that true). But Soren was sitting there, looking around, observing as he does. He was outside with the breeze blowing and people laughing. Though he was sitting, he wasn't stressed about it. He was in the middle of the action, which he enjoys. So as fun goes, I think Soren was enjoying his version of it. But it was a good question that really made me think.
Amy
Thursday, May 22, 2008
A Disturbing Discovery
About 3 or 4 months ago, Soren started waking up with a lot of pain in his hips and legs. He would wince in pain and do these silent screams when we would try to stretch him out or pick him up. But once he was up, he was fine. He would kick his legs and become his happy self again. We had no idea what was causing the tightness and pain. I asked his teachers and therapists to keep an eye out for this as well but they hadn't noticed anything.
Then last month, one of his Physical Therapists noted Soren wincing when she was working his legs and hips. So I took him to his pediatrician who did X-rays and everything looked fine. He suggested doing blood tests but thought it actaully might be seizure-related. I thought this might be possible, but it seemed strange since he was only having seizures one or two days a month. And then he had gone that 40 days without anything but still had these morning aches and pains.
But then the other night at 2 am, Soren woke up hungry having not eaten well the day before due to the excessive heat. When I put him back to bed, he started doing this rhythmic facial contortion and body crunch--a seizure. Aaron and I then realized that he has probably been doing this at night, sight unseen, for these past months. Thus the 40 days we thought were seizure-free were merely daytime seizure-free, nighttime seizure-rific (that's not a technical term). The good thing, if there can be a good thing when it comes to seizures, is that Soren seems to recover from these better than other seizures. Still, no seizure is a good seizure.
So what to do? Well, we're going to do blood tests just to confirm there is nothing going on considering all the drugs we've pumped into this boy. Then we're going to work on pumping another drug in! We decided to finally try the Clobazam. I have a small stash of 40 pills provided by another parent. But to get more of this non-FDA approved drug, Soren's neurologist needs to write a letter of medical necessity (because it is a form of Valium) and a prescription. Then the one pharmacy in the US that is allowed to distributed this drug is given this info and sends the meds from New York to UCLA. They then send it to us.
This all may take 2-3 weeks because Soren's doctor is out of town. And I'm sure when he returns, he will be swamped with many requests. In the mean time, I'm checking if we can wean Soren off either the Zonegran or the Lamictal that he is now on.
I'll keep you updated.
Amy
Then last month, one of his Physical Therapists noted Soren wincing when she was working his legs and hips. So I took him to his pediatrician who did X-rays and everything looked fine. He suggested doing blood tests but thought it actaully might be seizure-related. I thought this might be possible, but it seemed strange since he was only having seizures one or two days a month. And then he had gone that 40 days without anything but still had these morning aches and pains.
But then the other night at 2 am, Soren woke up hungry having not eaten well the day before due to the excessive heat. When I put him back to bed, he started doing this rhythmic facial contortion and body crunch--a seizure. Aaron and I then realized that he has probably been doing this at night, sight unseen, for these past months. Thus the 40 days we thought were seizure-free were merely daytime seizure-free, nighttime seizure-rific (that's not a technical term). The good thing, if there can be a good thing when it comes to seizures, is that Soren seems to recover from these better than other seizures. Still, no seizure is a good seizure.
So what to do? Well, we're going to do blood tests just to confirm there is nothing going on considering all the drugs we've pumped into this boy. Then we're going to work on pumping another drug in! We decided to finally try the Clobazam. I have a small stash of 40 pills provided by another parent. But to get more of this non-FDA approved drug, Soren's neurologist needs to write a letter of medical necessity (because it is a form of Valium) and a prescription. Then the one pharmacy in the US that is allowed to distributed this drug is given this info and sends the meds from New York to UCLA. They then send it to us.
This all may take 2-3 weeks because Soren's doctor is out of town. And I'm sure when he returns, he will be swamped with many requests. In the mean time, I'm checking if we can wean Soren off either the Zonegran or the Lamictal that he is now on.
I'll keep you updated.
Amy
Wednesday, May 07, 2008
The Comeback Kid
I just gotta say, Soren amazes me.
Sunday, he's got a fever, he throws up, and he has 3 seizures.
But then he sleeps. Like a log. Not a stir. It's what all of us should do when we're sick as hell. And he does it like an Olympic Champion. Soren is the Gold Medalist in Sleeping When Sick.
So then when he wakes up, he eases into drinking clear liquids. With his fever gone, the next day he's like a new boy. He can eat. He's perky. I make him do nothing the entire day and he actually seems a bit peeved, giving me looks like, "Seriously, Mom, I am so bored!"
By Tuesday he's back at school. When he got home, he was giggling his butt off. Today he was awake and happy, went to school, went to horse therapy. It's as if Sunday never happened.
When I put him to bed tonight, he was happy and healthy. That's my boy. He is the champion, my friends.
Amy
Sunday, he's got a fever, he throws up, and he has 3 seizures.
But then he sleeps. Like a log. Not a stir. It's what all of us should do when we're sick as hell. And he does it like an Olympic Champion. Soren is the Gold Medalist in Sleeping When Sick.
So then when he wakes up, he eases into drinking clear liquids. With his fever gone, the next day he's like a new boy. He can eat. He's perky. I make him do nothing the entire day and he actually seems a bit peeved, giving me looks like, "Seriously, Mom, I am so bored!"
By Tuesday he's back at school. When he got home, he was giggling his butt off. Today he was awake and happy, went to school, went to horse therapy. It's as if Sunday never happened.
When I put him to bed tonight, he was happy and healthy. That's my boy. He is the champion, my friends.
Amy
Monday, May 05, 2008
40 Days, But Not Counting
Soren made it a full 40 days without seizures as of this Saturday. But then on Sunday he woke up quite cranky and a bit warm. He had his milk and then proceeded to throw up everything in his tummy. Aaron got him into the bath where Soren had a 2 minute seizure. Thank goodness Aaron was right there to keep him safe.
Soren was conked out for most of the morning. When I checked his temperature, it was at 103. We worked the rest of the day to get it down, using Tylenol suppositories and oral Motrin once he was awake. In between that he had two more tonic-clonic seizures so I gave him Diastat. Finally around 4:00 he woke up and drank Pediasure, which he kept down. I got more of that and some chicken broth into him. His fever didn't break until 10 pm.
Today he stayed home with me and was both fever and seizure free. Still not that interested in eating, but I can't blame him. Otherwise he's been in good spirits, barely sleeping. So far none of us have gotten sick.
So our new count begins today, Cinco de Mayo (and Soren's great grandfather Art's birthday). Maybe we can make it to 50 days this time!
Amy
Soren was conked out for most of the morning. When I checked his temperature, it was at 103. We worked the rest of the day to get it down, using Tylenol suppositories and oral Motrin once he was awake. In between that he had two more tonic-clonic seizures so I gave him Diastat. Finally around 4:00 he woke up and drank Pediasure, which he kept down. I got more of that and some chicken broth into him. His fever didn't break until 10 pm.
Today he stayed home with me and was both fever and seizure free. Still not that interested in eating, but I can't blame him. Otherwise he's been in good spirits, barely sleeping. So far none of us have gotten sick.
So our new count begins today, Cinco de Mayo (and Soren's great grandfather Art's birthday). Maybe we can make it to 50 days this time!
Amy
Friday, April 25, 2008
30 Days Seizure Free!
That's right! Soren has gone a full 30 days without a seizure. I'm in my "waiting for the other shoe to drop" mode, but still enjoying how happy and "with it" he's been lately.
Even more amazing to me is that in the middle of this seizure freedom, we had Spring Break. And we were all over the place. We drove to Scottsdale to see my sister, went to Disneyland with friends, went to the mountain cabin of other friends. All this travel and change of routine could have easily upset Soren's applecart. I was so excited driving home from the mountains last Sunday, but didn't announce our success until we were safely at home.
Speaking of Spring Break, we really had a great time (and I know part of that is that Soren didn't have any seizures). At my sister's we played in the pool. And though Soren wasn't happy with it at first, he eventually resigned and fell asleep. At Disneyland he did much of the same until he hit the Tiki Room. That kid LOVES the Tiki Room! He was perky for it at our last visit and we thought it was a coincidence. But he seriously had slept through most of the day (except lunch) but when when those birdies sang and flowers crooned, Soren listened and watched following the lights and sound. And he was happy in the mountains. This time he either slept in the warm sun or kicked on his blanket enjoying the breeze. It was great.
We also went to see Soren's neuro-ophthalmologist during break. This cracks me up because in the waiting room Soren was awake, alert, and chatting. I rolled him into the room and he looked around with a sly glint in his eye. The doctor turned around to look in his eyes, and Soren immediately began bobbing his head and falling asleep. The kid is aware, crafty, and a big stinker!
Amy
Even more amazing to me is that in the middle of this seizure freedom, we had Spring Break. And we were all over the place. We drove to Scottsdale to see my sister, went to Disneyland with friends, went to the mountain cabin of other friends. All this travel and change of routine could have easily upset Soren's applecart. I was so excited driving home from the mountains last Sunday, but didn't announce our success until we were safely at home.
Speaking of Spring Break, we really had a great time (and I know part of that is that Soren didn't have any seizures). At my sister's we played in the pool. And though Soren wasn't happy with it at first, he eventually resigned and fell asleep. At Disneyland he did much of the same until he hit the Tiki Room. That kid LOVES the Tiki Room! He was perky for it at our last visit and we thought it was a coincidence. But he seriously had slept through most of the day (except lunch) but when when those birdies sang and flowers crooned, Soren listened and watched following the lights and sound. And he was happy in the mountains. This time he either slept in the warm sun or kicked on his blanket enjoying the breeze. It was great.
We also went to see Soren's neuro-ophthalmologist during break. This cracks me up because in the waiting room Soren was awake, alert, and chatting. I rolled him into the room and he looked around with a sly glint in his eye. The doctor turned around to look in his eyes, and Soren immediately began bobbing his head and falling asleep. The kid is aware, crafty, and a big stinker!
Amy
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