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 for stem cell treatments at least 2 if not 3 times. 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 getting another treatment this weekend.

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

Brief Seizure Update

Soren went an awesome 36 days without a seizure! It was fantastic. Last Saturday we went to Disneyland and Soren had a great time, smiling and laughing through most of the trip.

Then Monday before getting him off to school, he had a whopping 60 second tonic-clonic. Hoping this was the only one for the day, I sent him off to school. I then quickly ran all my errands fearing the call from school that would send me there to pick him up. Sure enough, at 10:30 school called. Soren had had another seizure and was too conked to continue school.

So I got him and brought him home, where he had a 3rd seizure. So I gave him the Diastat. Later I noticed Soren had a fever of 102. I got the fever down and kept him home Tuesday. There were no other signs of sickness so he went back to school Wednesday, but was rather pokey through the day and, actually, the rest of the week. But then I'd be rather pokey too if someone had put Valium up my tush.

This weekend he's back to his silly, chipper self. Hopefully we'll have another good long run without seizures and make it to 40 days!

Amy

Soren's DAFOs

DAFO stands for Dynamic Ankle Foot Orthoses. In other words a leg brace that supports the ankle and foot. For Soren this is very important because he is not a fan of freestanding (though word on the street is that he does it at school). But for him to stand properly, either in a stander or on his own, he needs to have his foot properly positioned. On his own, Soren would turn in his feet instead of planting them squarely on the ground. So his DAFOs put his foot at the right angle and give him the support he needs.

DAFOs are custom made to fit a child's foot and ankle. A mold is taken and the brace is then made with special padding that hits particular points for proper positioning. Soren's braces are made by a company called Cascade. When custom-making these braces, you get to pick out colors and ribbon details. And since Soren doesn't express his opinion on this, I have made the choices for his past 2 pairs of braces.

We got his first pair right after Soren turned 2. So, in my mind, Soren was still more of a baby. So I picked out green and cute dots for his details, appropriate for a little boy.

Well, when it was time for Soren's 2nd pair, he was a big boy of 4! Time to toughen-up that image, I thought. So check out Soren's cool new DAFOs.

Nobody's gonna mess with a kid rockin' these flames! These babies say, "I'm rough and ready to stand on my own!"

Amy