No, you haven't stumbled onto a blog about the ABC show "Lost," though I am a huge fan. I'm writing about the many people who have found me through Soren who sound so lost.
In the past two weeks I've been contacted by 6 different people I've never met before who have either found this blog by searching for information on Infantile Spasms or stem cells, found me through friends of friends, or approached me personally upon seeing Soren.
1) A family in Dallas whose daughter was recently diagnosed with Infantile Spasms.
2) The daughter of a co-worker of a mom from Mo's school.
3) A mom who saw Soren when we were out to lunch and was interested in his cool seating system.
4) A parent from Wisconsin whose son also has IS.
5) A "stranger" at Soren's horse therapy.
Now this last one was a doozy. The woman I met yesterday is the step-daughter of a man we met almost a year ago when we were up in Ventura for Mo's birthday. He approached me when he saw Soren and told me about his granddaughter with special needs. We had a few email exchanges. Then yesterday, Soren and I were at horse therapy and a new mom was there with her daughter. She heard Soren's name and then asked me, knowing that this sounded strange, if we'd met a man a year ago while we at the Pierpont Inn! Amazing!
And all these people have two things in common--a child with special needs and the feeling that they are the only ones in this situation. With each person that contacts me, I'm sad that we are all in this situation but I'm glad I'm there to talk or write to them.
There are so many families out there whose children are getting diagnosed with seizures or some other sort of ailment that will profoundly affect their ability to learn. Every state system is different. Systems are different within each state. It's all confusing. You don't know what to ask for for your child. You don't know what's too much or too little. As with any other big system, different people tell you different things. For those of us with little options, we're willing to try anything but don't know what works, what doesn't, and when to take a chance.
But thankfully, because of the internet, we can all chat with each other, share information, and assure one another that we're not alone. Aaron calls them our fellow travelers.
Well, fellow travelers, please continue to contact me and approach me and will tell you what I can about our journey with the Captain of our ship, Soren.
Amy
Friday, February 29, 2008
Monday, February 18, 2008
February Soren Update
Hello all,
Because I've been so busy with the fundraising stuff, I've been a bit neglect in giving actual updates on Soren. So here's the update!
Soren is doing well. The past couple weeks he's been smiling, "chatting," loving school, and enjoying the great outdoors (our backyard).
As I noted, the year started out rough with some bad days of seizures. But then he actually went 22 days without from January 11th to February 3rd! And I think he would have gone longer if he hadn't woken on the 3rd with a nasty cold and eye infection. Poor fella! Even still, he only had one tonic-clonic and one absence with a bit of jerking that day. All things considered, that's not bad for being sick.
So now we are on day 14 without seizures. Let's hope I'm not jinxing this by writing about it.
Oh, funny thing while Soren had his eye infection (well, funny to me, probably not to him). I had to put drops into his eyes every four hours. Well, if you try and pry Soren's eye open, he will clamp his eye down tight. So I started doing the sneak attack. He'd be innocently looking up and WHAM! I'd put a drop in his eye. The first couple times I did this he was just stunned. Then he started complaining about it saying, "Ma-MA!" completely offended. Finally, he just didn't trust me anymore and would close his eyes when I came near with the bottle. Smart kid.
Soren saw his neurologist earlier this month and we had two major questions--could Soren be in the Clobazam study and should we consider implanting the VNS. The first answer was No. Soren is not a candidate because he does not have what are known as drop seizures. From what I understand, drop seizures are when you seize and then lose muscle control, thus dropping you to the ground. In Soren's seizures (generalized tonic-clonic) he stiffens up and jerks.
However, his doctor did think that Clobazam was a good drug to try next. The trouble is, it's not currently FDA approved in the U.S. (thus the studies). The reason for this is that Clobazam is, to put it simply, a modified version of Valium, which is a controlled substance. However, there are still ways to get it, your insurance just doesn't pay for it. There's, of course, the internet. The other way is there is one pharmacy approved to sell it in New York. They get it from another country who then ships it to New York, the pharmacy (upon receiving a proper prescription) sends it to UCLA, UCLA sends it to the patient.
Currently we're pausing on starting this because, 1) Soren would then be on 3 AEDs, which we are not excited about, and 2) Soren may actually be doing well on his current levels of Lamictal and Zonegran. We increased the Zonegran on Jan. 1st. He had bad days on 1/9 and 1/11, but the new dosage might not have fully been in effect. And, as I noted above, he did quite well through the cold on this current dosage.
So, we wait for a "bad day." If he has one with no other extenuating circumstances having caused the seizures (illness, heat) then we will probably start the Clobazam. Then we would wait to see it's efficacy before removing one of the other drugs.
Ooh! In other big news. Our van is safely in Canoga Park! Why isn't it here at our house? Well, let me tell you. In preparation for the new van, wheelchair ramp, making our lives more accessible overhaul, we ordered Soren a new wheelchair. He is currently growing out of his wheelchair/stroller which has served us well for over 2 years. So we ordered the chair, a potty seat (how's that for optimism?), and a lift (to help me get him in and out of bed, up from the floor, and in and out of the tub). However, things have gone less than smoothly as far as billing insurance so we still do not have the chair.
The problem with getting the van when we don't have the chair is that the chair has to be fitted with a special bracket so it can be easily locked into the van when driving. We could have the bracket put on his current chair, but the chances of it fitting his new one are rather slim. Then outfitting the new chair with a bracket would cost an additional $500-$800!
So we are waiting. The van is safe and ours. The chair will be here soon. We're very appreciative for all this equipment, so we will just be patient. By March we are hoping to have both the new chair, the new van, and a far more accessible life!
But this week my Uncle Mike will finish building Soren's ramp at the front of our house! He started it last week and it's looking awesome. He'll be back tomorrow to finish it up over the next couple days! Sweet!
Amy
Because I've been so busy with the fundraising stuff, I've been a bit neglect in giving actual updates on Soren. So here's the update!
Soren is doing well. The past couple weeks he's been smiling, "chatting," loving school, and enjoying the great outdoors (our backyard).
As I noted, the year started out rough with some bad days of seizures. But then he actually went 22 days without from January 11th to February 3rd! And I think he would have gone longer if he hadn't woken on the 3rd with a nasty cold and eye infection. Poor fella! Even still, he only had one tonic-clonic and one absence with a bit of jerking that day. All things considered, that's not bad for being sick.
So now we are on day 14 without seizures. Let's hope I'm not jinxing this by writing about it.
Oh, funny thing while Soren had his eye infection (well, funny to me, probably not to him). I had to put drops into his eyes every four hours. Well, if you try and pry Soren's eye open, he will clamp his eye down tight. So I started doing the sneak attack. He'd be innocently looking up and WHAM! I'd put a drop in his eye. The first couple times I did this he was just stunned. Then he started complaining about it saying, "Ma-MA!" completely offended. Finally, he just didn't trust me anymore and would close his eyes when I came near with the bottle. Smart kid.
Soren saw his neurologist earlier this month and we had two major questions--could Soren be in the Clobazam study and should we consider implanting the VNS. The first answer was No. Soren is not a candidate because he does not have what are known as drop seizures. From what I understand, drop seizures are when you seize and then lose muscle control, thus dropping you to the ground. In Soren's seizures (generalized tonic-clonic) he stiffens up and jerks.
However, his doctor did think that Clobazam was a good drug to try next. The trouble is, it's not currently FDA approved in the U.S. (thus the studies). The reason for this is that Clobazam is, to put it simply, a modified version of Valium, which is a controlled substance. However, there are still ways to get it, your insurance just doesn't pay for it. There's, of course, the internet. The other way is there is one pharmacy approved to sell it in New York. They get it from another country who then ships it to New York, the pharmacy (upon receiving a proper prescription) sends it to UCLA, UCLA sends it to the patient.
Currently we're pausing on starting this because, 1) Soren would then be on 3 AEDs, which we are not excited about, and 2) Soren may actually be doing well on his current levels of Lamictal and Zonegran. We increased the Zonegran on Jan. 1st. He had bad days on 1/9 and 1/11, but the new dosage might not have fully been in effect. And, as I noted above, he did quite well through the cold on this current dosage.
So, we wait for a "bad day." If he has one with no other extenuating circumstances having caused the seizures (illness, heat) then we will probably start the Clobazam. Then we would wait to see it's efficacy before removing one of the other drugs.
Ooh! In other big news. Our van is safely in Canoga Park! Why isn't it here at our house? Well, let me tell you. In preparation for the new van, wheelchair ramp, making our lives more accessible overhaul, we ordered Soren a new wheelchair. He is currently growing out of his wheelchair/stroller which has served us well for over 2 years. So we ordered the chair, a potty seat (how's that for optimism?), and a lift (to help me get him in and out of bed, up from the floor, and in and out of the tub). However, things have gone less than smoothly as far as billing insurance so we still do not have the chair.
The problem with getting the van when we don't have the chair is that the chair has to be fitted with a special bracket so it can be easily locked into the van when driving. We could have the bracket put on his current chair, but the chances of it fitting his new one are rather slim. Then outfitting the new chair with a bracket would cost an additional $500-$800!
So we are waiting. The van is safe and ours. The chair will be here soon. We're very appreciative for all this equipment, so we will just be patient. By March we are hoping to have both the new chair, the new van, and a far more accessible life!
But this week my Uncle Mike will finish building Soren's ramp at the front of our house! He started it last week and it's looking awesome. He'll be back tomorrow to finish it up over the next couple days! Sweet!
Amy
Monday, February 11, 2008
Still Want Some Art?
I've got lots! It's in my garage! All the stuff leftover from the Monkeyhouse show is with me and I'm (slowly) putting it up on eBay for sale. Slowly, slowly, slowly. I'm just learning and I clearly have a very poor learning curve.
BUT, if you want some art, just go to eBay and type in "4 Soren" (without the quotes) and all of his listings will come up. Currently, there are only 10 listings. But I'm working on getting the rest up this week (or in the coming weeks).
Currently, I'm not shipping because that's even more for me to learn and, as I mentioned above, I'm having issues with the whole "teaching an old dog new tricks" thing. So right now it's for pick up at Monkeyhouse. But if you REALLY want something and you sweet talk me, I may ship it to you.
And finally, as usual, all the money goes to the Talbert Family Foundation which in turn then comes to Soren--they don't take a cut. It all comes to him! And then it all goes to the VAN!!!
So, check out the art, see if you want something, and bid on it! There's a lot of cool stuff!
Amy
BUT, if you want some art, just go to eBay and type in "4 Soren" (without the quotes) and all of his listings will come up. Currently, there are only 10 listings. But I'm working on getting the rest up this week (or in the coming weeks).
Currently, I'm not shipping because that's even more for me to learn and, as I mentioned above, I'm having issues with the whole "teaching an old dog new tricks" thing. So right now it's for pick up at Monkeyhouse. But if you REALLY want something and you sweet talk me, I may ship it to you.
And finally, as usual, all the money goes to the Talbert Family Foundation which in turn then comes to Soren--they don't take a cut. It all comes to him! And then it all goes to the VAN!!!
So, check out the art, see if you want something, and bid on it! There's a lot of cool stuff!
Amy
Tuesday, February 05, 2008
The Skinny on the Mini
The Mini Van, that is.
This is a big story, so get ready. But I'll spoil the ending by telling you now that it ends quite happily!
I'm not sure where to begin, so I'll begin at the beginning. In October of 2004, the lease on our old mini van was up. We decided that rather than go into another lease, we would buy a new 2005 Toyota Sienna. At this time, Soren was just over a year and we fully expected (hoped, prayed) that he would be walking in the next couple years.
Well, 2005 came and went and there was no walking. Same with 2006 and 2007. So as 2007 neared its end, we decided that we needed to convert our Sienna to make it wheelchair accessible. I had spoken to a variety of parents and been told that the state would only cover $10,000 of this. I was also told that this could cost between $20,000-$28,000.
When Mayra at Monkeyhouse contacted me in October about a fundraiser in January, we figured the timing was perfect. We would have a fundraiser to convert the van!
In January, just as the fundraiser was about to start, I contacted the Regional Center (the state agency for people with special needs) that Soren is with to begin the process to see how much they would cover. I was asked by them to get 3 bids from 3 vendors who specialize in converting vans and in selling already converted vans.
When I called these vendors, I told them that I needed to get a bid on converting my 2005 Sienna. And they told me it was too old!
I was stunned and bummed. Too old! But...but that's our NEW car! Aaron's still driving his 11 year old truck and we were hoping it would hold on a few more years. Suddenly we were in the market for a new or slightly used, already converted van, which was very much not in our plans.
So I got three quotes for vans that were already converted. 1) A 2006 Toyota Sienna with 7,000 miles, 2) A new 2007 Honda Odyssey, and 3) A 2008 Toyota Sienna. The Regional Center looked at all these quotes. They weren't looking at the price of the car--that would be our problem. Their concern was the price of the conversion. The first two came in within $300 of each other. So they asked which we would prefer. Well, the new 2007 was actually $600 less than the used Toyota, so that seemed like a sweeter deal.
Now, mind you, while all this was going on, I was flipping out. I got quotes on these cars, but these cars are VERY desirable. Depending on how long the approval process went, the vans could be gone. There was only this one used 2006 on the one lot. And the 2007s on the other lot were going fast. Plus their good price was only going to last until January 31st! I was also flipping out because WE WEREN'T REALLY IN THE MARKET FOR A NEW CAR!!!
So I'm sweating bullets hoping to get the answer soon and hoping that the fundraiser goes INCREDIBLY WELL to off-set the amount we had to pay. And amazingly, the Regional Center approved the ENTIRE COST of the conversion for the Honda Odyssey, which came to over $18,700! Woof!
I totally wasn't expecting this. It was not what I'd ever heard from any other parent. And I'd spoken to quite a few.
But the good news about the Regional Center covering the conversion was that the fundraising money could go to the cost of the van. And now, to date with our fundraising, we've raised over $13,000! Everyone was remarkably and wonderfully generous. Family. Friends. Strangers. People just gave and gave! That money has made it so we can do our part with the purchase of the Odyssey, which will be delivered to us by the end of the week!
This has been a serious whirlwind. I made the first call to the Regional Center in early January. And once that train started down the track, it didn't stop between getting bids, having the fundraiser, getting approval, securing the van, getting the money, and paying for the van.
I cannot thank you all enough or express how much this will help our lives. Every time I load Soren into his car seat, it's getting more challenging. I end up having to toss him in like a sack of potatoes, which is hardly pleasant for him. I've clocked his head against his chin, giving us both headaches. And loading his full wheelchair stroller into the back of my van has wrenched my back one too many times.
Soon we will have this van and a new wheelchair for Soren (though his wheelchair stroller is approved for car travel until then). My Mom's brother is building a ramp at the front of our house next week, which is also being paid for by the Regional Center! So I'll be able to just roll him down from the house and straight into the van.
And what of the "old" van? Well, we were going to sell it to help pay for the rest of the new van. But since Aaron's truck is going to start costing us more money than it's saving us, and since we own the "old" van, which is newer and safer than the truck, we will become a 2 mini van family. In the end, this will be good in the event of an emergency with Soren--if I'm driving the converted van and unreachable, Aaron can still pick up Soren in a pinch.
So that is the Skinny on the Mini. Thank you all so very, very much!
Oh! And art is still available monkeyhousetoys.com. Just go to Original Art on the left and that will lead you to an icon for the 4 Soren art show. The money will continue to go to this unexpected, but amazing, life-changing purchase!
Thanks!
Amy
This is a big story, so get ready. But I'll spoil the ending by telling you now that it ends quite happily!
I'm not sure where to begin, so I'll begin at the beginning. In October of 2004, the lease on our old mini van was up. We decided that rather than go into another lease, we would buy a new 2005 Toyota Sienna. At this time, Soren was just over a year and we fully expected (hoped, prayed) that he would be walking in the next couple years.
Well, 2005 came and went and there was no walking. Same with 2006 and 2007. So as 2007 neared its end, we decided that we needed to convert our Sienna to make it wheelchair accessible. I had spoken to a variety of parents and been told that the state would only cover $10,000 of this. I was also told that this could cost between $20,000-$28,000.
When Mayra at Monkeyhouse contacted me in October about a fundraiser in January, we figured the timing was perfect. We would have a fundraiser to convert the van!
In January, just as the fundraiser was about to start, I contacted the Regional Center (the state agency for people with special needs) that Soren is with to begin the process to see how much they would cover. I was asked by them to get 3 bids from 3 vendors who specialize in converting vans and in selling already converted vans.
When I called these vendors, I told them that I needed to get a bid on converting my 2005 Sienna. And they told me it was too old!
I was stunned and bummed. Too old! But...but that's our NEW car! Aaron's still driving his 11 year old truck and we were hoping it would hold on a few more years. Suddenly we were in the market for a new or slightly used, already converted van, which was very much not in our plans.
So I got three quotes for vans that were already converted. 1) A 2006 Toyota Sienna with 7,000 miles, 2) A new 2007 Honda Odyssey, and 3) A 2008 Toyota Sienna. The Regional Center looked at all these quotes. They weren't looking at the price of the car--that would be our problem. Their concern was the price of the conversion. The first two came in within $300 of each other. So they asked which we would prefer. Well, the new 2007 was actually $600 less than the used Toyota, so that seemed like a sweeter deal.
Now, mind you, while all this was going on, I was flipping out. I got quotes on these cars, but these cars are VERY desirable. Depending on how long the approval process went, the vans could be gone. There was only this one used 2006 on the one lot. And the 2007s on the other lot were going fast. Plus their good price was only going to last until January 31st! I was also flipping out because WE WEREN'T REALLY IN THE MARKET FOR A NEW CAR!!!
So I'm sweating bullets hoping to get the answer soon and hoping that the fundraiser goes INCREDIBLY WELL to off-set the amount we had to pay. And amazingly, the Regional Center approved the ENTIRE COST of the conversion for the Honda Odyssey, which came to over $18,700! Woof!
I totally wasn't expecting this. It was not what I'd ever heard from any other parent. And I'd spoken to quite a few.
But the good news about the Regional Center covering the conversion was that the fundraising money could go to the cost of the van. And now, to date with our fundraising, we've raised over $13,000! Everyone was remarkably and wonderfully generous. Family. Friends. Strangers. People just gave and gave! That money has made it so we can do our part with the purchase of the Odyssey, which will be delivered to us by the end of the week!
This has been a serious whirlwind. I made the first call to the Regional Center in early January. And once that train started down the track, it didn't stop between getting bids, having the fundraiser, getting approval, securing the van, getting the money, and paying for the van.
I cannot thank you all enough or express how much this will help our lives. Every time I load Soren into his car seat, it's getting more challenging. I end up having to toss him in like a sack of potatoes, which is hardly pleasant for him. I've clocked his head against his chin, giving us both headaches. And loading his full wheelchair stroller into the back of my van has wrenched my back one too many times.
Soon we will have this van and a new wheelchair for Soren (though his wheelchair stroller is approved for car travel until then). My Mom's brother is building a ramp at the front of our house next week, which is also being paid for by the Regional Center! So I'll be able to just roll him down from the house and straight into the van.
And what of the "old" van? Well, we were going to sell it to help pay for the rest of the new van. But since Aaron's truck is going to start costing us more money than it's saving us, and since we own the "old" van, which is newer and safer than the truck, we will become a 2 mini van family. In the end, this will be good in the event of an emergency with Soren--if I'm driving the converted van and unreachable, Aaron can still pick up Soren in a pinch.
So that is the Skinny on the Mini. Thank you all so very, very much!
Oh! And art is still available monkeyhousetoys.com. Just go to Original Art on the left and that will lead you to an icon for the 4 Soren art show. The money will continue to go to this unexpected, but amazing, life-changing purchase!
Thanks!
Amy
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