Tuesday, January 30, 2007

Eye Surgery

Soren is scheduled for eye surgery Monday, February 12th.

As you can see in many of his pictures, Soren's right eye turns in.

I've written about how he prefers his left eye. We've acutally been patching his left eye for about 3 to 4 months to strengthen his right eye.

His neuro-ophthalmologist feels that developmentally, Soren's brain is probably about ready to start working on his eyes moving together (this usually happens in typical kids between 3-6 months of age). Despite his age, this is where Soren is developmentally. And he's been making some good progress lately (he's holding things better with his right hand, he's responding when we ask him questions now and again).

There is only a brief window of opportunity when the brain is able to learn to work the eyes together. If it doesn't learn then, the brain learns to instead work them seperately.

So, we are doing the surgery in the hope that this is the right time for Soren's brain to learn to work them together. We are also hoping that his vision is about equal in both eyes. The latter is a little difficult to tell since Soren can't answer the question, "Which is better, 1 or 2?" But, as well as we can estimate, Soren's vision is about equal.

I'll update about this after the surgery so you'll know how it did.


Thursday, January 25, 2007

A Good Week

I know I'm celebrating a good week early, but I want to celebrate it while it's still good. Soren has had, actually, a GREAT week.

After that rough weekend I didn't know what to expect. Well, my fears were set aside because he's been chipper, babbling, alert, kicking, eating well, responding when we talk to him.

On Tuesday he had a great Physical/Occupational Therapy session. And he'd really been giving them hell the past few months.

He'd did so well on Tuesday, I was nervous for Wednesday. Same therapy center, but different therapists and he's REALLY been giving that pair a rough time. When Soren was dropped off from school yesterday, I asked his bus driver how he seemed after therapy. He said Soren was singing going in and singing coming out. So what happened inbetween?

I called his therapist for the update and she was SO HAPPY. Soren had done the best he'd done in months. She said it was like a different boy. He sat on the swing, he didn't complain, and he worked very hard.

So I want to celebrate this success while it's here. Good job Soren!


Monday, January 22, 2007

Living in the Now

Living in the Now is very hard when you have a sick kid.

I was just having an email exchange with my friend Dayla whose son Fyn was diagnosed with cancer last year. He is doing well, thank goodness. But, just like seizures, cancer can come back. And that's what we two moms were discussing.

You worry constantly about what will be. What could happen.

I had a rough night last night. Aaron was gone. Soren had had those bad seizures.

I wondered if I should have Soren sleep with me. I know many parents of kids with seizures who always sleep with their kids. I respect that. But I don't do that. I need to sleep. Soren needs to sleep. And while I could be there for a seizure, I can't stop it. I'm sure some parents think I'm awful. But I need to be there for Soren, Moira, Aaron, and myself in the morning. That won't work with a lack of sleep.

So I let Soren sleep. I slept reasonably well, considering. And in the morning, while I was still tense, Soren was quite well rested and went to school without incident.

I felt like I was on call all day. I feared a call from school. And while this was mildly nerve-wracking, it made me appreciate the day a little more.

I appreciated the now. What I had. I met with a friend. I worked on one of my scripts. I had lunch celebrating a former co-worker's birthday. And I never got a phone call telling me to pick Soren up. My kids got home. We did homework, I bathed them, fed them, put them to bed. It was nice.

It's so hard with a sick child to appreciate when things are going well. A good CAT scan. No seizures for a day. But, as with anyone, you have to because if you focus on the negative--and we all have negative out there that can consume us--you'll go nuts.

My goal each day is not to go nuts. I'm sure it's a goal many of you have as well.

Good luck.


Sunday, January 21, 2007


Soren had a seizure yesterday and just had one today. Today's was a strong tonic-clonic (stiff, jerking) and lasted about 1 minute. Soren is now post-ictal (asleep). And I realized that after he seizes I'm a bit post-ictal as well. I've been walking around in a daze for the past 30 minutes.

I did manage to weigh Soren. We think that he's been having a growth spurt. He seized a bit over a week ago and didn't come down with any illness. We got the okay to increase his Lamictal and he did well until today. So I checked to see if he's any heavier. He's gained about 2 pounds. So then I called the pediatric neurologist on call. I'm waiting for him or her to call me back so I can find out if I can increase his medicine again.

But until then, I'm a bit stunned. I decided to write to at least get some of this out of my system. It's just me, Soren, and Mo right now. Aaron's working.

Soren just woke up. I guess I better come out of my shock as well and get dinner ready.


Saturday, January 20, 2007

Sweet Kids and UCLA

Soren had the most lovely teacher ever at UCLA's Early Intervention Program. Her name is Lisa. And she had a lovely assistant teacher named Ingrid. Since they have both left the program and miss the kids so much, they have set up play dates every two months to see the kids.

We went to one today. It was the second we have gone to out of three. It was so nice to see both Lisa and Ingrid. And to see the wonderful children that Soren went to school with.

I've gotta say, everyone is doing SO well. While Soren was having a rough and fussy day (there was some constipation involved--I'd be fussy too!), everyone else was in top form.

A little girl in Soren's class who was only being fed by feeding tube during school is now being fed orally (thanks to the wonderful feeding therapy at Pasadena Child Development Associates!)

And a little boy who I just love was scooting all over the playground looking for action!

Children are interacting, thriving, and doing so well! It's so exciting to see!

UCLA really provided a fantastic program for Soren and so many other kids. And that is ALL because of Lisa, Ingrid, and the fantastic staff there.

I'm so thankful Soren had his time there. He grew so much. I'm sorry he was being such a fussy budjet today because he grew so much there as well.

But in two months we will meet again. Hopefully he will have done his business BEFORE we go!

Anyhow, it was great to see how amazing these amazing kids are. I love them all!


Monday, January 08, 2007

Moira Kisses

Moira was in a very kissy mood last night. And so she began kissing on Soren, who was sitting in his feeding chair having just finished dinner.

The more she kissed him, the happier he got until he was finally smiling and giggling at the kisses.

I then asked him if he saw his big sister. He had been looking away from her as he got his kisses. I asked him again, "Do you see your big sister standing next to you?"

Soren has the most amazing and expressive eyebrows. He was clearly thinking, trying to get his brain to get the message to his body. And it took him a couple seconds, but he finally turned his head and looked right at Moira.

I asked him if he liked the kisses. And, I kid you not, we all heard him say in a little voice, "Uh hunh." Aaron and my jaws dropped. Moira about passed out.

He looked away again. She gave him more kisses. I asked him again if he knew his sister was there. And, again, after a couple second delay, he moved his head and looked at Moira.

Now those are some powerful kisses!


Thursday, January 04, 2007

Encouraging Words

Everyone knows it's a small world, after all. And once you've entered into whatever subculture your life places you, it gets even smaller. One of our subcultures is epilepsy. Another is stem cell treatments. And now and again, these two collide.

We had to set up a special needs trust--a trust that would make sure any money Soren inherited at our death would be safe and that his services wouldn't be taken away due to this money.

We got the name of a lawyer who does this from our friends George and Azita whose son Clayton used to have seizures and is doing so well with the stem cell treatments.

When we met David (the lawyer) we discovered that his daughter Bella also has a seizure disorder and that they had been to the DR twice for injections. Feeling discouraged that her progress was not what they wanted after these injections, they chose to do a 3rd injection in Tijuana. While it's cheaper and much closer to home, the stem cells are older than 12 weeks, thus they could have less potency. This is why we haven't gone there.

Then, on this trip to the DR, we were boarding the plane to go home and Dr. Rader introduced me a man in a baseball cap who looked very familiar. It was David. I had seen him in a suit previously and in my home, not in a foreign country dressed for travel. I finally met Bella, who is a lovely girl who lives up to her name.

In an email exchange, I found out why David and his wife decided to bring Bella back to Dr. Rader and the DR.

"Her progress has been significant--more behaviorally than anything else, but she has progressed in many different ways. Isabella had some test results in the past that showed she could not break down/digest fats properly, and she also had levels of toxic metals that were off the chart. The first two treatments in Dominican Republic we thought didn'’t do anything because we were only looking for the seizures to stop, but we later found out, from a second round of toxic metals tests done after those 2 treatments, that the cells went to assisting her internally in her digestion and also in the natural elimination of her toxic metals. Her tests showed that she was breaking down fats now, and the metals were well within the normal limits. The doctor had never seen 2 test results so different before, especially when nothing else had been done in the interim to address it.

I think the word that best describes her now is that she is maturing into her age nicely, and steadily. The seizures have definitely decreased too, in number and severity. I am looking forward to the day she has a typical EEG.

If you have not seen much yet, don'’t fret. Believe that the cells know where to go first, where they are needed most. It will, soon after that, be a snowball effect. It will seem like his 4th or 5th treatments did the trick, when in reality, the first 3 were 'prepping' him for healing from the next treatments."

These words were very encouraging to me and Aaron. We're already seeing some subtle changes. Soren is more expressive. But we want the big stuff. Crawling, sitting, walking, talking. All those things typical kids do. But as David said, what needs to be done is being done first. The other stuff will follow when those repairs have been done.

Good to hear. And I'm trying my best not to fret.