El Arco Iris

On Thursday, April 27th, Aaron, Soren, and I went to the closing night of El Arco Iris, our favorite Mexican restaurant.  I discovered El Arco sometime during my freshman year at Occidental.  I honestly don't remember how.  If someone here introduced me, thank you.  I discovered their amazing nachos topped with chorizo, which became a fallback splurge when I wanted some yummy food.

Then when Aaron and I were dating during his freshman and my junior year, I took him to El Arco.  I continued to enjoy the nachos while he ate the crispy ground beef tacos with cheese and a double side of fluffy rice.

After our college years, we didn't return to El Arco until we moved back to the area in 2000.  We introduced Moira and Soren to the restaurant, which was always family friendly.  As Aaron and I got older and our diets changed, we started having their fajitas instead of the nachos and tacos.  And we also started enjoying their fantastic margaritas.

When we heard that El Arco was closing for good on Thursday the 27th, we decided to venture out and have our ORIGINAL orders of nachos and tacos for the last time.  Moira was busy, so it was just me and my guys.  And the place was PACKED!  At a table near the front sat an old lady—one of the original owners of the restaurant—rolling utensils into napkins.  A bouquet of roses with a card saying Thank You sat on the table. People went up to her and thanking her for all the wonderful meals they had at her restaurant.  The wait list was on the table with her, so I wrote my name down and we settled in for a long wait.  There were some spare chairs, basically in the middle of the restaurant, so we wheeled Soren over and set up camp. 

Soren was VERY excited to be at El Arco.  He’s always liked the lighting there.  And there was so much talking that he wiggled happily at the sound of it all.  I tried to take pictures of him, but Soren is very hard to capture.  Plus, as soon as a camera is directed towards him, he puts his head down.  He hates the paparazzi.  During our hour long wait, I also fed Soren via G-tube while Aaron got us margaritas.  Aaron also snagged chips and salsa from a passing waitress.  As time ticked on, we were fearful we weren’t going to get in before Soren started melting down.  But just as we were about to give up, the hostess called us over to our booth and we sat down.

As we did, a woman in her late 50’s-early 60’s came up to me.  She told me that she loved watching us with Soren, seeing how we interact with him.  This kind of thing happens to us now and again.  Strangers approach us in regards to Soren.  People in the market have blessed us.  A woman in a diner gave me 20 dollars for him.  It’s startling sometimes.  But it’s also very sweet.  And it’s much better than when people stare at the boy.  Anyhow, this woman was complementing me on how we treat him like any other kid.  I thanked her, expecting her to return to her table.  But instead, she began to tear up and sat down next to me.  She told me that her 35-year-old daughter is pregnant and the doctor just told her that the baby tested positive for Down syndrome. 

This woman was devastated.  She looked at Soren (who does not have Down syndrome in case anyone is confused), and just marveled at what a sweet boy he is.  I told her that people with Down syndrome could be very high functioning.  MUCH higher functioning than Soren!  Then she told me that the doctor told her daughter to have an abortion. 

Okay, now all I could think was, “I am not qualified to counsel this woman!”  But I told her that was a very personal decision that her daughter would need to make.  Then she said that her daughter wanted to keep the baby.  And that she wanted to be a grandma.  (She was really taking me on a roller coaster ride of emotions in a span of seconds, let me tell you.)  I said that if her daughter chose to keep the child, then they would love that baby and get him or her what they needed.  That there are early intervention programs for children with disabilities and therapies to help them.  She seemed encouraged by my words, thanked me, and left the table.  As she did, I thought about how happy I was that we went out that night.  And that we brought Soren.  Clearly seeing a family with a child with disabilities was something this woman needed.  

After that, Aaron and I then had a much-needed second margarita along with our nachos and tacos while Soren wiggled in his chair enjoying our final night at El Arco Iris.

Adios.

Skating with Soren

I love to roller skate.  Because I grew up in the 70's and 80's, I learned to skate on traditional, quad skates.  As a kid, I would skate on my street, which was basically a dead-end, so it was safe.  And going to the roller rink for birthday parties or just to hang out was a regular occurrence.  Plus the 80's had fantastic movies like "Xanadu" which featured roller skating.  And I don't know about you, but this girl wanted to be just like Olivia Newton-John.

When I was around 12 or 13, I got my own pair of skates--white boots, red wheels and toe stops, and sparkly red and silver laces.  I still have those skates to this day.  And because I didn't bother growing much during puberty, these skates still fit!  Now, I'm not a great skater.  I can't cross one leg over the other as I skate or go backwards or do tricks.  I also can't skate using rollerblades.  I tried, but they just don't work for me.  But in my old-school skates, I can go forwards, not fall, and stop.  I feel like these are the basic necessities in skating.

In 1997, I was in a play where I played a roller-skating clown.  Yes, you read that correctly.  A roller-skating clown.  And in 1999, I would even roller skate to work a couple times a week because I lived 3 miles away and it was a straight shot down Ventura Blvd. from Coldwater to Sepulveda.  (I would get a ride home though, cause after that 3 miles, I was exhausted!)

In 2000, I moved to an area with hills and busy streets, so my skating significantly decreased.  But there is a skating rink near my area.  The Moonlight Rollerway.  I actually first went to this rink before I had kids.  Two of my friends had their wedding reception there and it was bitchin'.  And, much like riding a bike, I can put my skates on and start rolling.  After having kids, my daughter Moira was invited to birthday parties and would have Girl Scout events at Moonlight.  I know that I took Moira on her own to one of these events, trying to teach her how to skate, which is always a dangerous endeavor.  It's less about skating and more about making sure your kiddo doesn't fall, wiping out even more skaters.

But another time, I needed to take Soren with Moira to Moonlight.  By this time, Moira was better at skating on her own and Soren was using a wheelchair.  I thought, "Hey, I'm allowed to use my outdoor roller skates on the rink.  Soren's chair has wheels.  I bet I can skate with him on the rink!  This will be so much fun!"  But when I arrived at Moonlight, I discovered that there were only steps to get in--no ramp.  This seemed so weird to me.  You have people on wheels, why wouldn't you have a ramp?  They didn't even have a ramp around back.  So I hauled Soren and his chair up the steps (thankfully both were smaller at this point, but it was still rather tricky).  Once I got up the stairs, I asked if I could skate around the rink with Soren in his chair.  The answer?  No.

I was very annoyed.  How were my wheels or the wheels of someone's rollerblades any different than the wheels on his chair?  As long as we weren't causing a hazard on the rink, why couldn't we be allowed on?  Plus I was really excited to share something I love with Soren.  Instead, he had to hang out on the sidelines, either with me or other moms.  I went out on the floor a couple times, skating by myself or with Moira.  But I felt so bad for Soren not getting to participate.  After that, I didn't return to Moonlight.

Fast forward to late 2016.  I was on Facebook and saw a post from my friend.  Her son is also disabled, and while he can walk, roller skating wouldn't be a safe activity for him.  This boy often uses a chair as well.  And my friend posted a video of her roller skating while pushing her son in a chair at a roller rink!  I commented to her immediately.  Where was this?  Her answer:  Moonlight Rollerway.  WHAT?  I asked if they now had a ramp.  YES!  And they allowed chairs on the rink?  YES!!!!

Finally!  I would be able to skate with Soren!  Because life is busy, we didn't actually get there until December when we were invited to this same boy's birthday party.  I put on my skates and pushed Soren around and around that rink.  He was wiggly and adorable, clearly enjoying it.  It was amazing, just as I'd always imagined.

In fact, we had so much fun, we went back this week.  Soren and I met up with one of his other friends who also uses a wheelchair.  His mom and I had a blast skating our boys around.  When we were done, someone from Moonlight came up to us and asked if we had a good time.  I told her we did.  Though next time we go, I'm going to be sure to thank her for making the roller rink inclusive.  It's so hard to find things that Soren enjoys.  And we've tried many, many things.  So it's wonderful to discover that Soren loves whooshing around the rink with the disco lights flashing and the music blaring just like his mom.

Time to show him "Xanadu!"

akr

Did I Ever Tell You the One about the G-Tube Supplies?

No?  Well, it's just about as good as the wheelchair story.  Speaking of which, yesterday we got a denial from CCS!  Now we just need to get the deliver scheduled, pony up our 250 smackeroos, and Soren will have a new wheelchair!  Hoorah!

But the G-Tube supplies is another doozy.  Back when Soren originally got his G-Tube put in for feeding, one company supplied us with replacement Mic-Key buttons (the device that's inserted in the belly), extension tubes (the tubes that lock into the button), 60 ml and 10 ml syringes, and KetoCal, his ketogenic formula.  Every month, someone would call and ask if I wanted to refill my order.  This was quite nice since life can be a little overwhelming.

The only thing we didn't get monthly was the Mic-Key button, because that was changed out every 3 months.  But you had to change it out, or it got really gross.  And it was also good to have an extra one on hand in case you got a dud button, or in the event that the button got pulled out and you need to replace it.  So for years, we had a good system going and were well stocked with supplies.

But then Soren's Keto dietician wanted to switch him from KetoCal to KetoVie to see if Soren could get better seizure control.  This meant that a different company was supplying his formula while the old company still supplied the extension tubes, syringes, and most importantly, his Mic-Key button.

At first, everything went fine.  I'd order the formula then order the supplies.  But somewhere along the line, the ball was dropped.  They didn't call to remind me.  I forgot to call them.  But then I realized that I'd be needing a new Mic-Key button for the next change out.  So I called the old company, but they were super cagey with me.  I was told that since I hadn't called in so long (maybe 2 months?), Soren's file had been closed.  I explained the situation with the new formula and how I lost track of things, but that he still needed the Mic-Key button.

I got passed to a supervisor who clearly thought I was up to something nefarious.  Obviously I was starting up my black market Mic-Key button racket.  Cause every 3 months, momma needs a new pair of shoes.

The guy said I needed to get a new prescription from Soren's doctor to reopen his file.  And knowing full well that this was my screw up, I called Soren's doctor and worked on getting the prescription.  Once I got it, trying to actually get it faxed to them was a whole other ordeal.  Weeks passed as I'd fax and re-fax to different numbers.  I'd call, be put on hold, and was constantly told that I needed to get a new prescription.  "But I just faxed you the prescription yesterday."  I honestly can't remember how they finally got the prescription, but by some miracle, they did.

But, because things always time out brilliantly, they got the new prescription right when Soren was getting his VNS put in.  So I was busy at the hospital.  Then I was busy with Soren during his recovery.  By the time I called them, 3 weeks had passed.  I said that I needed to order the G-Tube supplies, especially the Mic-Key button.  Once again, I was passed to the supervisor.  I couldn't believe it.  I knew I had everything in order.  But the guy told me they were about the close this file again because I didn't call.  I explained that I was very busy with my son who had just had surgery.  He said he had to confirm, once again, that Soren still needed the Mic-Key button.

So I called the pediatrician's office and spoke to the phone nurse, explaining this insanity.  The doctor confirmed to the company again that Soren still needs these supplies.  I called in a timely fashion, and Soren finally got a new Mic-Key button.

Later, Soren and I went to his pediatrician's office for an appointment, and he was so frustrated with this company.  How many times does he have to confirm that Soren is still using his G-Tube?  But then he told me that the most ridiculous request he had was to confirm that that his patient with Down Syndrome still actually had Down Syndrome.  Oy.

Now that I've ranted about this, I better call that company and order Soren a new Mic-Key button.  Winter's coming and I could use some new boots.

Amy
  

Wheelchair Frustration

For almost a year now, we have been trying to get Soren a wheelchair.  His current chair has been on its last legs (or wheels) for quite a bit now.  It has a back center foot brake that is supposed to brake both wheels.  Around December this gave out on one side so we had to have a hand brake added on that wheel.  And Soren has grown significantly since we originally got this chair.  Of course, it had some growth to it.  But it's been extended as far as it can go.  Now he's just bursting out of it and really uncomfortable.

We got a prescription written and got pre-approval from our insurance back in October of 2015.  We then had an assessment by one company in November.  They recommended a molded seat for Soren and a headrest to keep him from putting his head forward.  While we were waiting for approval on this chair, I told the doctor who was assessing Soren for new leg braces about this new chair (because it was obvious that Soren was too small for his current one), and she looked very concerned.  She did not think this chair sounded right for Soren.  Instead, she recommended that we get a second assessment by a PT at Children's Hospital.  By now it was February.

In order to get Soren this wheelchair assessment, we needed a new prescription for the assessment and for the custom wheelchair as needed.  We got that in February, requested the appointment in March, and had the appointment on April 15th.  In the assessment, it was recommended that Soren get a very different chair then the one from the previous assessment.  So the paperwork was submitted and I was told that we'd have a new chair in June.

It is now, as you know, the very end of August.  And Soren does not have a new chair.  However, the chair has been made.  And it is safe and sound in Chatsworth.  Here's the problem.  While our insurance approved the almost $4,000+ chair, they didn't approve the "securement points."  These are the doohickeys that you attach tie-downs to when you travel in a car or a bus.  So, without the securement points, all you can do is wheel your wheelchair around your house or anywhere without using a vehicle.  And do you know how much these things cost?  $250!!!!  Yep.  They pay for the $4,000+ chair, but not the $250 tie-downs so the kid can actually get to school.  Brilliant.

So we said, fine.  We'll pay the $250.  No problemo.  But, of course, it's not that easy.  Soren also has Medical and CCS.  And the wheelchair company needs to bill them first.  While we know full well that neither Medical nor CCS will cover the $250 for this item, we need to wait for their refusal before we can pay the $250.  So the newest problem is that the gal at the wheelchair company is not the brightest bulb and has sent old reports to Medical and CCS.  Reports from 2014.  Not the lovely 2016 report we got in April.  Good gravy, woman.  Thus the process is taking even longer because Medical and CCS think we're banana heads!  And since we got the original approval from our insurance back in October, we're dealing with a ticking clock.

Meanwhile, there is a brand new, beautiful wheelchair for Soren sitting in Chatsworth that we can't get because the company won't let us pay $250 dollars.  Cause that's their policy.

Amy

Addendum:  I've been thinking about this more and it really chaps my hide.  Supposedly, the rational to the denial for the securement points by the medical insurance is because a wheelchair is to be used in the house.  WHAT?!!!  So people who use chairs are supposed to remain house bound?  Who made up that ridiculous rule?  And why hasn't anyone fought it?  Is there nobody in the medical insurance industry that uses a chair and cried bullshit on this?  A wheelchair is that person's way of getting around indoors and outdoors.  In fact, for Soren, he spends more time in his chair when he's out in the world.  When he's home he's under his tree looking at the leaves, or looking at his laser lights, or in a different chair he uses.  At school the rotate him between chairs to challenge him.  Without those securement points, a wheelchair is just a house chair that rolls.

VNS Update

It's been almost 3 months since Soren had his VNS implanted.  The surgery went really smoothly and Soren recovered well.  They started the device at a low setting.  Then we went in every 3 weeks to have the data downloaded and the device turned up a bit more, working on getting it to a therapeutic level.  We've been told to be patient.  That it can take up to a year to get the setting just right.  Now we don't go in for another 3 months for an adjustment.  

Overall, we've seen a definite decrease in seizures.  The VNS seems to catch Soren's small myoclonic seizures just as they are revving up, stopping them in their tracks.  And we've been able to use the magnet and wave it over the device to stop some of the bigger tonic-clonic seizures.

It's the early morning seizures that he has upon waking or right after waking up that are still breaking through.  They are really big and the magnet just doesn't stop them, no matter how many times we wave it over the device.  It's frustrating because those are some of Soren's worst seizures and it just starts his day off terribly.  But, again, we have to be patient.

The VNS goes on and off in cycles.  So on 30 seconds, off 5 minutes.  And we've noticed a funny side effect when it turns on during these 30 seconds.  See, the Vagus nerve is near your vocal cords.  And Soren's Vagus nerve now has a lead coiled around it.  So when the device is cycles on and he's talking, it makes his voice vibrate.  Soren happens to find this very amusing.  In fact, it's led him to making funny vocalizations and cracking himself up.  I wish I'd caught it on video.  

So, we still have a ways to go for better control, but we are happy that we took the plunge and got Soren the VNS.

Amy

EEG Telemetry Update

Thank you all for the well-wishes on Soren's EEG.  Things went very well at Children's Hospital.  First of all, Children's has a SWEET set-up for their EEG telemetries.  At previous hospitals, the whole machine was in the room.  There was a camera and a tv monitor and the EEG monitor, all of which took up a huge amount of space.  But at Children's, they have a camera and speaker in the ceiling, so you're not negotiating around all this equipment.  And then they have an area outside the room on the hospital floor where technicians are monitoring a bunch of kids getting tested.  It was really impressive.  

But Soren is a funny kid.  As soon the technicians started putting the EEG leads onto his head, he check out, starting with a light doze.  Then, for the next 20 hours, he only woke up about 5 times to see what was going on.  He saw he was in the hospital and was unimpressed, so he checked out again.

During the testing, he had 6 seizures.  3 tonic-clonic seizures, which epilepsy.com will now describe:

What is a tonic-clonic seizure?

This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal." As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. 

• The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face.
• After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.
• These seizures generally last 1 to 3 minutes.
• A tonic-clonic seizure that lasts longer than 5 minutes needs medical help. A seizure that lasts more than 10 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment.

Soren's tonic-clonics generally only last about 30 seconds to 1 minute.

He also had 3 myoclonic-seizures, which epilepsy.com will describe here:

What is a myoclonic seizure?

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:

• Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.
• Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.
• Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.

When his neurologist came to speak to me about the test results, she noted that Soren's heart rate begins to go up BEFORE his myoclonic seizures begin.  In regards to the VNS, this is really great information.  The VNS will be programmed to turn on when Soren's heart rate goes up.  And HOPEFULLY, this will stop the myoclonic seizures begin, which would be really exciting.  Although they are really fast seizures, they are stop strong, they can really wipe Soren out.

Once the testing was done, a guy came to take all the leads and stuff off Soren's head.  As soon as this was done, Soren opened his big brown eyes and looked around as if to say, "Oh, good.  Is that all over?  Let's go!"  Like I said, funny kid.

Amy  

Our Latest Adventure with Soren

Today we begin the process of Soren's latest adventure--getting a Vagus Nerve Stimulator implanted into his body.  Now, for those of you that don't know what a VNS is or what it does, here's an explanation from epilepsy.com:

Vagus nerve stimulation (VNS Therapy®) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.

• The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
• The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

How is VNS used?

• The neurologist (or licensed professional) programs the strength and timing of the impulses according to each patient's needs. The settings can be programmed and changed by placing a wand over the generator on the left side of the chest. The wand is connected to a handheld computer. 
• For all patients, the device is programmed to go on (give stimulation) for a certain period (for example, 7 seconds or 30 seconds) and then to go off (stop stimulation) for another period (for example, 14 seconds or 5 minutes). The device is set to give stimulation at regular intervals during the day, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it's operating.
• Holding a special magnet near the implanted device (generator) triggers the device to deliver another burst of stimulation, outside of the programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. 
• Settings (also called stimulation parameters) set by the neurologist typically include a stimulation amplitude of 1.0 to 3.0 mA (milliamperes), a stimulation frequency of 20 - 30 Hz (hertz), and a pulse width of 130 - 500 microseconds. By adjusting these settings, the doctor not only may be able to control more of the patient's seizures, but often can also relieve side effects. One study, for instance, found that changing the pulse width eliminated pain that some patients were experiencing.
• The battery for the stimulator lasts approximately 5-10 years, depending on the settings used.

However, Soren is not getting the VNS implanted today.  That will hopefully happen some time in May.  Today I'm taking him for a 24 EEG telemetry at Children's Hospital.  Once again, I shall let the good folks at epilepsy.com explain this...

What is a Video EEG test?

A Video EEG test records your brainwaves on an EEG and a video of what is going on at the same time. The purpose is to be able to see what is happening when you have a seizure or event and compare the picture to what the EEG records at the same time. Sounds that occur during the testing are also recorded - this can pick up if a person talks or makes sounds during an event. By doing this, doctors reading the EEG can tell if the seizure or event was related to the electrical activity in the brain. If so, we'd call this an epilepsy seizure.  

• Video-EEG is most helpful to determine if seizures with unusual features are actually epilepsy, to identify the type of seizures, and to pinpoint the region of the brain where seizures begin. Locating the region precisely is essential if epilepsy surgery is being considered.
• Other names for Video EEG tests include: EEG telemetry, EEG monitoring, or Video EEG monitoring. Usually these terms mean the same thing.

Then next week Soren will have an MRI of his brain done.  Now, Soren has had EEG telemetries and MRIs done before, but it's been a number of years.  The neurologist in monitoring Soren's VNS has never seen Soren's seizure activity.  And getting a more up-to-date look at his brain development is good.  Plus, it's much harder to do an MRI once the VNS put in due to the magnetism.  

So, as I stated above, today is the start of the adventure.  I'm preparing for our 24 hour hospital stay--bringing Soren's laser lights so he has something to look at, my computer for some writing and to catch up on "The Blacklist," old People magazines for some light reading, and my ukulele to entertain myself and Soren.  On Wednesdays, the Farmer's Market comes to Children's Hospital, so I'm going to get some hummus and pita chips for snacking.  

Then I'll wait for my son to have seizures over the next 24 hours, which in this instance is exactly what we want.

Wish us luck!

Amy