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

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

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!

Here's Soren at his best--awake and asleep (well, almost asleep).




Amy

One Cute Boy

Okay, I know I'm biased, but Soren is one cute little boy.

This weekend, we were painting the railing and the facing of the ramp (sorry Doug, we had to do it). While the ramp was built out of beautiful redwood, we wanted it to blend into our house as much as possible so it didn't scream WHEELCHAIR RAMP when people walked by. And since our house is rather colorfully painted, it was currently standing out.

Soren and Mo joined us in the painting. And Soren just loves 1) a family adventure and 2) being outside. If we can manage both, he's usually quite happy (and if he's not, he just goes to sleep).

Well, today he was happy. He was decked out in some sort of combination between a little old man and a cool hipster--not a look many can pull off. He was rockin' some sweats, a nice cable knit sweater, and a fetching fisherman's hat. He was so animated, I neglected my painting duties for a bit to get some pictures. When Soren is feeling photogenic, you have to jump at the chance or the moment will be lost.

I took a lot of photos, but here are just a few of our silly, adorable boy.





Amy

Soren's Sweet Ride

In my pictures of the van, you all got to see Soren's new wheelchair. Some folks of kids with special needs have asked me what this fine ride is.

Well, it is a Zippie by Quickie. And it is both quick and zippy! (Note that I spell zippy correctly. The Quickie folks spell it with the "ie.")

It is so very awesome. It has a super easy "tilt-in-space" feature. There are two levers on each handle so that we can tilt Soren back. It rolls super easy. It has tie-downs for the bus. And the EZ lock bolt was added at the bottom so we can lock it into the car.

And you can't see it in these pictures, but the actual seat is so cushy! The bottom piece is contoured for his butt. The back is nicely padded. It was all custom ordered just to fit him. Very, very nice!

Check it out.





Soren and my first trip out in the new van with the new chair was very interesting. In Soren's old seat, people would generally take little notice of him. He didn't stand out as a kid with special needs.

But when we went to the market that Saturday, I pulled into the van accessible space and had the ramp come out. There were some Girl Scouts selling cookies in front of the store, so I had an audience for my first try with all this new equipment.

Then when I went into the store, there were lots of looks at Soren, who was sitting up like a big, tall boy in his new chair. In a real wheelchair, there was no hiding his inability to walk. There were quick glances at Soren and quick glances at me. People said sweet but sad hellos to Soren. I didn't expect a change in equipment to bring about a change in people's reaction to us.

Still, it is a really nice chair and I know I'll eventually get used to the stares.

Amy

In Memory of a Beautiful Girl

Yesterday we got word that a little girl from our Epilepsy Support Group passed away last week. She had a horrible neurological condition called Batten's Disease. Only children are diagnosed with Batten's. It is fatal and most of them do not make it to 20 years old. This little girl was a typically developing child and then, I believe at 5 years old, starting having seizures. It took them a bit to get their diagnosis. And with that diagnosis, there is not much to be done.

However, this family did not give up and went to the Dominican Republic at least 2 if not 3 times for stem cell treatments. And they actually did some good. She had lost her ability to walk and regained it after one of her treatments. The problem is, Batten's is progressive, and she lost the ability again. They were actually supposed to be in the DR this weekend for a treatment.

But 2 weeks ago, this lovely girl went into Status Epilepticus. This is when you start seizing and no medicine can stop it. That means that the fail safe of Diastat that we as parents hold onto like a lifeline, did not stop her seizures. So she went to the ER and was admitted into the PICU. When you get to this state, they try to put you into a medically induced coma to try and stop the seizures. But her seizures were persistent and they had to keep dropping her deeper and deeper into a coma. She finally passed away on March 25th. I believe she was only 10 years old.

Her parents said of her, "Even though she had a devastating and terminal illness, she never lost her spirit and retained many of her abilities until her untimely death."

The family had a wake yesterday at their house. Aaron and I decided, since we had our respite worker coming that evening anyhow, to go to the wake without the children. I didn't know how accessible the home was and I didn't know how Moira would take to this situation. I'm glad we made that decision. I was expected just a wake.

When we arrived there was a bag pipe player playing Amazing Grace. People were crowded into a little bedroom where the body was laid out traditionally in her bed in a beautiful dress, candles all around, and adorned with flowers. I was reminded of Frida Kahlo. Around the room were big pictures of her and her family smiling, laughing, enjoying life. It was overwhelming, heartbreaking, and moving.

I spoke to her mom and she talked about how we (parents of kids with Epilepsy) always assume that Diastat will work. That the other possibility is unimaginable. And if she'd really fully grasped that possibility, they may not have done half the things they did. In December they had gone to Utah and were at a farm that was miles from a hospital. Her daughter was having break through seizures at the time, but she thought it was normal, as we all do. They may not have taken that trip if she'd known what was going to happen only months later. But then she was glad she didn't know because they all had a wonderful time. A time she wouldn't trade in for anything.

I said that she was right to take that trip and not live in fear. We can't stop living life. Not taking that trip wouldn't have changed this outcome. It's hard, but we can't let the seizures rule our lives.

It was a beautiful gathering. It was hard to be there but it was important to be there. I'm just so sorry that we lost this little girl.

Please think of this family and send them your love. May they all find peace.

Amy

The Soren-Mobile!

The Soren-Mobile (as it was termed by my friend Alexx) was delivered last Thursday and has hit the streets!

And it is such a dream! I mean, the Honda Odyssey is a nice van to begin with. Then, to have it accessible for Soren--amazing!

Here you can see the ramp extended out from the bottom of the van. All I have to do is push a button to open the door, the van then begins to lower as the door pops open, and then the ramp comes out. Now we can go straight from the ramp into the van--no more painfully awkward transfers into the car seat!

Next you see the EZ Lock system.

We aim Soren's new chair for that lock and, under his chair, is a bolt that clicks in and locks. E-Z, as advertised!

Then I can spin the chair around, so Soren can face front.

And the other side door also opens with the push of a button, so when I get him in or am getting him out, there is an easy escape.

Because the entire center section is now devoid of seats, Moira gets the entire back bench, which she has made her own with pillows and toys.

Now there are some things I'm still getting used to. The driver and passenger seats sit a bit higher than my old van. Getting my short body into the car has resulted in some bruises, but I'll figure that out. Oh, I also got a nice bonk on my leg when I opened the ramp door, went to throw a bag in before loading Soren, and got whacked by the ramp extending out! Whoops!

If Soren's chair isn't locked in to the EZ lock, an alarm sounds. This is great! But if he's not in the car (thus, not locked in) it also sounds. So I have to hit a special button to turn this off. Next, there is a release button to unlock the chair to wheel it out. Again, EZ. But I have 5-8 seconds to move his chair forward or it relocks! Now that's some pressure!

But really, I LOVE THIS VAN! Soren and I went to run errands on Saturday and it made everything so much easier. We got in and out of the van 3 times with so much less drama than usual.

Now I just have to think of a side business to use the van for while Soren is at school. I mean, did you check out the space I have now? I could do deliveries. I could set up a massage table. Or maybe I'll just put my long board in there and go surfing. I need a little R&R.

Amy