This is a note from Aaron, Soren's Dad...
Amy has done a wonderful job with keeping folks informed with this blog. I’d just like to share a bit of what helps me believe Soren’s life will be better.
In 2004 during a particularly bad patch of seizures, I had a dream. At that point, Amy and I were slightly delusional from the 24/7 seizure assault. But the dream was real. It was dusk. I was standing on our back patio watching a group of children play in the backyard. Soren is standing next to me. He turns and grabs my hand. He grabs my hand just like Moira does. Instantly, I know he is 4 years old. And although I don’t see it, I know that he can walk.
Soren will be 4 in six months. He has a long way to go before he stands, let alone walks. From this blog, you know a bit of the road we’ve traveled. But when things look bleak, I remember Soren standing next to me holding my hand. And I hope.
Aaron
Saturday, March 24, 2007
Thursday, March 22, 2007
The Eyes Have It!
Soren had his 5 week post-surgical check-up today and his doctor was VERY pleased! Not only are Soren's eyes straight, he's actually using both to see!!!
Let me recap a bit. Soren had strabismis surgery to straighten his eyes. He clearly preferred his left and his right would turn in quite a bit. We patched for a while trying to make sure that his right eye had about equal vision to the left before doing the surgery. We did this because, if the vision wasn't close to equal, his brain might not figure out how to work the eyes together even if they were straightened. So, after the surgery, his right eye may have looked straight, but it may not have been doing any actual looking. The trouble is, since Soren can't talk, it's all guesswork. We had the option to wait a few months and continue patching. But we decided to take a chance.
And, for once, that chance has paid off! HOORAH!
His vision isn't just cosmetically straight, it's (hopefully) functionally straight.
Now how does the doctor know this? Well, let me tell you. I had noticed over these past 5 weeks that Soren's right eye would drift OUT a bit now and again (something it had never done). BUT, every time it did this, the eye then came back into alignment. His doctor also witnessed this and said that this indicates that his brain knows that drifting out is not where the eye should be. So then his brain actively pulls it back so he can see properly--WITH BOTH EYES!!!!! Amy
Let me recap a bit. Soren had strabismis surgery to straighten his eyes. He clearly preferred his left and his right would turn in quite a bit. We patched for a while trying to make sure that his right eye had about equal vision to the left before doing the surgery. We did this because, if the vision wasn't close to equal, his brain might not figure out how to work the eyes together even if they were straightened. So, after the surgery, his right eye may have looked straight, but it may not have been doing any actual looking. The trouble is, since Soren can't talk, it's all guesswork. We had the option to wait a few months and continue patching. But we decided to take a chance.
And, for once, that chance has paid off! HOORAH!
His vision isn't just cosmetically straight, it's (hopefully) functionally straight.
Now how does the doctor know this? Well, let me tell you. I had noticed over these past 5 weeks that Soren's right eye would drift OUT a bit now and again (something it had never done). BUT, every time it did this, the eye then came back into alignment. His doctor also witnessed this and said that this indicates that his brain knows that drifting out is not where the eye should be. So then his brain actively pulls it back so he can see properly--WITH BOTH EYES!!!!! Amy
Friday, March 09, 2007
My Little Stinker
On Tuesday I got a call from Soren's PT. No matter what she did, she could not wake him up to do therapy. He was just out. She asked if everything had been going okay, seizure-wise. I told her I sent Soren off that morning without incident. I thought he was being a stinker, yet again.
However, when Soren and I were walking home from picking Moira up from school, he had a seizures. A big one. Tonic-Clonic. 90 seconds.
So my theory changed and I figured that Soren probably had a seizure right before therapy and was then post-ictal during therapy.
At home that afternoon, he had 2 more big seizures. Having finally figured out his pattern of having seizures and then coming down with a cold, I kep him home on Wednesday.
Of course, he had no seizures (which I'm fine with) and he had no real cold symptoms beyond a very mild fever. And he was a delight all day. Kicking, giggling, smiling. We even went out to lunch together.
I swear the seizures take years off my life. But then he's such a sweetheart (and a stinker) that he charms me between those horrible bouts.
Smart boy.
Amy
However, when Soren and I were walking home from picking Moira up from school, he had a seizures. A big one. Tonic-Clonic. 90 seconds.
So my theory changed and I figured that Soren probably had a seizure right before therapy and was then post-ictal during therapy.
At home that afternoon, he had 2 more big seizures. Having finally figured out his pattern of having seizures and then coming down with a cold, I kep him home on Wednesday.
Of course, he had no seizures (which I'm fine with) and he had no real cold symptoms beyond a very mild fever. And he was a delight all day. Kicking, giggling, smiling. We even went out to lunch together.
I swear the seizures take years off my life. But then he's such a sweetheart (and a stinker) that he charms me between those horrible bouts.
Smart boy.
Amy
Friday, March 02, 2007
Genetic Test Result
Well, after getting Soren's blood drawn back in December and waiting these many months for the results, we got a call today saying that Soren DOES NOT have the CDKL5/STK9 gene mutation.
What does this mean? Well, as far as his treatment goes, absolutely nothing. Even if he did have this mutation, we wouldn't be changing anything, it would just answer the question of why Soren has seizures.
Chances are, it's some other gene mutation that they haven't discovered yet. So now we wait around and call the geneticist back in a year to see if they've made any new discoveries.
We're perfectly happy with these results. Always nice to find out your kid doesn't have something with a lousy prognosis. But, in a way we were hoping to have an answer. Then we'd be able to test Moira so she could make an informed choice when having children. But we have many years before that's gonna happen!!!!
And we're bummed we don't get to come out with our new T-shirt line. We were going to make Soren a shirt that said MUTANT: CDKL5. Gotta have a sense of humor about these things. Maybe his actual gene mutation will have an even cooler name.
Amy
What does this mean? Well, as far as his treatment goes, absolutely nothing. Even if he did have this mutation, we wouldn't be changing anything, it would just answer the question of why Soren has seizures.
Chances are, it's some other gene mutation that they haven't discovered yet. So now we wait around and call the geneticist back in a year to see if they've made any new discoveries.
We're perfectly happy with these results. Always nice to find out your kid doesn't have something with a lousy prognosis. But, in a way we were hoping to have an answer. Then we'd be able to test Moira so she could make an informed choice when having children. But we have many years before that's gonna happen!!!!
And we're bummed we don't get to come out with our new T-shirt line. We were going to make Soren a shirt that said MUTANT: CDKL5. Gotta have a sense of humor about these things. Maybe his actual gene mutation will have an even cooler name.
Amy
Thursday, March 01, 2007
Been Awhile
Sorry I haven't posted in a bit. We've been busy!
On Saturday the 24th we went to the Getty with my Dad to see the Icons of Sinai. It was a LONG day at the Getty, but the kids were troopers. Soren ate crab cakes at the fabulous Getty restaurant (that kid has the most adventurous palette). Moira made lovely pieces of art. And the Icons were amazing. We got into the exhibit and Soren started laughing. Who knows why? Maybe he saw some angels. But through that whole, busy day he was alert and happy. Not one complaint.
I don't want to say that the next day was the opposite, but Soren had his opinions about things. He complained and wanted to be held by Aaron so they snuggled. Then he complained some more and wanted to be held by me. When we were watching the Oscars, he was sitting up on the couch with me in his Special Tomato seat. My arm and shoulder were near him and he purposely leaned into me to rest his head. Just a big Mr. Snuggles.
And his eyes are looking FANTASTIC!!! The redness is almost gone. They are SO straight! I can see him working that right eye. It's pretty awesome.
So that's the update! I'll try not to take so long next time!
Amy
On Saturday the 24th we went to the Getty with my Dad to see the Icons of Sinai. It was a LONG day at the Getty, but the kids were troopers. Soren ate crab cakes at the fabulous Getty restaurant (that kid has the most adventurous palette). Moira made lovely pieces of art. And the Icons were amazing. We got into the exhibit and Soren started laughing. Who knows why? Maybe he saw some angels. But through that whole, busy day he was alert and happy. Not one complaint.
I don't want to say that the next day was the opposite, but Soren had his opinions about things. He complained and wanted to be held by Aaron so they snuggled. Then he complained some more and wanted to be held by me. When we were watching the Oscars, he was sitting up on the couch with me in his Special Tomato seat. My arm and shoulder were near him and he purposely leaned into me to rest his head. Just a big Mr. Snuggles.
And his eyes are looking FANTASTIC!!! The redness is almost gone. They are SO straight! I can see him working that right eye. It's pretty awesome.
So that's the update! I'll try not to take so long next time!
Amy
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