Here we are in our Seizure Tracker shirts before the walk.
There was a sign thanking each team that walked.
It was a beautful day and there were around 400 people walking in Duluth.
The stroller brigade rules!
Team SeizureTracker.comAugust 27, 2008
2008 Minnesota Epilepsy Stroll - Duluth
What's a vacation without taking a break to participate in an Epilepsy Stroll! We have so much family in Minnesota that it seemed like the obvious thing to do when we found out the Stroll was happening while we were in town. We raised money for the Minnesota Epilepsy Foundation and also spread the word about SeizureTracker.com.
Here we are in our Seizure Tracker shirts before the walk.
There was a sign thanking each team that walked.
It was a beautful day and there were around 400 people walking in Duluth.
The stroller brigade rules!
Team SeizureTracker.com
Here we are in our Seizure Tracker shirts before the walk.There was a sign thanking each team that walked.It was a beautful day and there were around 400 people walking in Duluth.The stroller brigade rules!Team SeizureTracker.com
August 12, 2008
Minnesota Vacation
I haven't posted here often because quite frankly, I haven't had much to say. Evan is doing really well and after follow-up visits with his docs in NY, he continues to have a clean bill of health. Of course we couldn't be happier!!! This is how each of the doctor visits went...
Dr.: So how's Evan been doing?
Us: Great!!
Dr.: And what's been going on the last few months with him?
Us: Nothing!!
Dr.: Great!!
Then we chat about how wonderful Evan's progress has been and everyone smiles in agreement and we chat some more. We really should have had tea and crumpets because the appointments felt more like social calls with friends than doctor visits. This feels like a much better way to continue these appointments!
At the moment, we are in Minnesota visiting my folks, and because we have a somewhat warped sense of vacation, we are doing an Epilepsy Stroll while we're here. We just happened to find out it was going on a couple weeks before our trip and we're looking forward to it. We have so much family here that we actually have a pretty big team - about 20 people all together. Here is our page for the walk:
Check out the photo on the page. It is of Evan 2 weeks after surgery and he is still chubby from how much he ate while he was on steroids. The scar is still healing and you can see it on the right side of his head if you look really close. I decided to use this photo for the walk page and when Evan saw it he didn't know who the boy was! I have to agree though, Evan looks nothing like this now!
Dr.: So how's Evan been doing?
Us: Great!!
Dr.: And what's been going on the last few months with him?
Us: Nothing!!
Dr.: Great!!
Then we chat about how wonderful Evan's progress has been and everyone smiles in agreement and we chat some more. We really should have had tea and crumpets because the appointments felt more like social calls with friends than doctor visits. This feels like a much better way to continue these appointments!
At the moment, we are in Minnesota visiting my folks, and because we have a somewhat warped sense of vacation, we are doing an Epilepsy Stroll while we're here. We just happened to find out it was going on a couple weeks before our trip and we're looking forward to it. We have so much family here that we actually have a pretty big team - about 20 people all together. Here is our page for the walk:
Check out the photo on the page. It is of Evan 2 weeks after surgery and he is still chubby from how much he ate while he was on steroids. The scar is still healing and you can see it on the right side of his head if you look really close. I decided to use this photo for the walk page and when Evan saw it he didn't know who the boy was! I have to agree though, Evan looks nothing like this now!
July 10, 2008
Seizure Tracker on Facebook
Well, I have entered this millennium and I have to admit, I feel a little old. I have embraced Facebook and it's actually pretty cool. I'm a latecomer, but better late than never I guess! I set up a profile for myself and also set up a profile and Fan Page for SeizureTracker.com. My thought is that the Fan Page can act as an online community for anyone using Seizure Tracker, and where better to do that than on Facebook? If you want to check out our Fan Page, follow this link...
SeizureTracker on Facebook
Let me know what you think!
SeizureTracker on Facebook
Let me know what you think!
June 25, 2008
Still Smiling
If you want to see me smile...beam really...just ask me how Evan is doing! He's doing great! Have I mentioned how lucky and blessed we are as a family? It has been just over seven months since Evan's surgery and we aren't seeing any seizures. This is thrilling, but on top of that, he seems to be doing better in other areas since Dr. Weiner worked his magic.
He was always verbal but his vocabulary is really taking off, in addition to the nonstop verbal commentary on anything and everything. Last week I took Evan to PT and asked his therapist, Kim, what she thought about his progress. Evan has always had some weakness on his left side, particularly his leg and foot and immediately after surgery we saw a greater range of movement in his ability to bend his toes. This improvement has revealed itself in his recovery. Kim said although you do expect some improvement due to being older, Evan has improved too quickly for the surgery not to have played a major role in where he is now physically. Evan is starting to lead with his left foot more even when doing something hard and he is able to jump higher and even has better endurance. We've been taking him to swimming lessons and have pulled out his bike now that the weather is warmer and both activities offer really good PT for him. He puts on his "super boy" cape, blasts off down the sidewalk and doesn't stop running until he gets to the end of the street. It's quite a sight to see!
So go ahead and ask me how Evan is doing. I used to hate that question because I never knew how much or what to say, but not anymore. He's doing amazingly well and I'm even smiling as I type.
He was always verbal but his vocabulary is really taking off, in addition to the nonstop verbal commentary on anything and everything. Last week I took Evan to PT and asked his therapist, Kim, what she thought about his progress. Evan has always had some weakness on his left side, particularly his leg and foot and immediately after surgery we saw a greater range of movement in his ability to bend his toes. This improvement has revealed itself in his recovery. Kim said although you do expect some improvement due to being older, Evan has improved too quickly for the surgery not to have played a major role in where he is now physically. Evan is starting to lead with his left foot more even when doing something hard and he is able to jump higher and even has better endurance. We've been taking him to swimming lessons and have pulled out his bike now that the weather is warmer and both activities offer really good PT for him. He puts on his "super boy" cape, blasts off down the sidewalk and doesn't stop running until he gets to the end of the street. It's quite a sight to see!
So go ahead and ask me how Evan is doing. I used to hate that question because I never knew how much or what to say, but not anymore. He's doing amazingly well and I'm even smiling as I type.
May 26, 2008
Pharmaceutical Nightmare
Have you ever seen someone's head actually explode? Mine came as close as possible last week and for those of you who have never seen me really mad, you missed a rare opportunity.
We picked up Evan's Epilepsy medication from the pharmacy and the next morning when we opened the bottle, we noticed the pills were a different color. Rob and I started studying the pills. Pink? They are supposed to be yellow. And aren't these a little bigger too? The label is correct, but these don't look right. I remember a lot of hoopla a couple months ago about an anti-epileptic med changing color but I thought it was one of Evan's old meds, surely I'd have remembered if it was the current one.
It was early, the pharmacy wasn't open, so we fired up the computer. Our suspicion was confirmed. The pharmacy gave us the WRONG medication, more specifically the wrong dosage. Instead of 300 mg Trileptal they gave us 600 mg Trileptal. If we had given this to Evan he would have had twice the dosage he's supposed to have and would very likely have ended up in the hospital with a toxic level of the medication is his system.
Back in December, when we were trying to get his medication levels straightened out after surgery, he had a toxic reaction to 450 mg of Trileptal that caused some pretty scary seizures followed by several days in the hospital. Last week we were poised to give him 600 mg. I don't even want to think about what would have happened "if".
The scariest part is that there are three different steps at the pharmacy to ensure something like this never happens. So three items were ignored in dispensing Evan's meds. The level of irresponsibility is astounding to say the least.
We picked up Evan's Epilepsy medication from the pharmacy and the next morning when we opened the bottle, we noticed the pills were a different color. Rob and I started studying the pills. Pink? They are supposed to be yellow. And aren't these a little bigger too? The label is correct, but these don't look right. I remember a lot of hoopla a couple months ago about an anti-epileptic med changing color but I thought it was one of Evan's old meds, surely I'd have remembered if it was the current one.
It was early, the pharmacy wasn't open, so we fired up the computer. Our suspicion was confirmed. The pharmacy gave us the WRONG medication, more specifically the wrong dosage. Instead of 300 mg Trileptal they gave us 600 mg Trileptal. If we had given this to Evan he would have had twice the dosage he's supposed to have and would very likely have ended up in the hospital with a toxic level of the medication is his system.
Back in December, when we were trying to get his medication levels straightened out after surgery, he had a toxic reaction to 450 mg of Trileptal that caused some pretty scary seizures followed by several days in the hospital. Last week we were poised to give him 600 mg. I don't even want to think about what would have happened "if".
The scariest part is that there are three different steps at the pharmacy to ensure something like this never happens. So three items were ignored in dispensing Evan's meds. The level of irresponsibility is astounding to say the least.
April 15, 2008
SeizureTracker.com in Top 10% for Fund Raising!
So, I think our team, SeizureTracker.com, is entitled to some bragging rights...I was just looking at the Epilepsy Foundation 2008 Walk page and I saw that our team is listed as one of the top fund raising teams! We ranked 38 out of 424 teams -- woo hoo!
2008 National Walk for Epilepsy Top Teams
Not that it's a competition, but let's be honest, isn't everything a competition? I'm just so proud of everyone who helped make this happen! Thanks!
March 30, 2008
Thank You for Your Support!
We had a blast at the Epilepsy Walk and had a pretty big group of walkers...
We are all bundled up on a brisk Saturday morning. We were really hoping for a warm day but were glad there wasn't rain!
We want to thank everyone who donated to our team -- we raised almost $3700! I can't thank everyone enough for that support. The 2008 walk overall raised $1.1 million -- not too shabby!
We also want to thank everyone who walked with us and raised money: Chuck, Mary, James, Steve, Nora, Beth, Marcus, Josh, Debbie, Ken, Madison, Alexandra, Grant, Maria, Michael, Jackson, Jane, Sharon, Susan, Corrine, Robin, Keith, Chris, Laura, Luke, Rob, Lisa, Aria & of course, Evan.
Also, a special shout out to Billy at (Warning : Don't click this link if you are easily offended) www.tshirtsthatsuck.com who donated the silk screening of the T-shirts! This is the second year he printed the shirts for us and the second year that we were the best looking AND best dressed team at the Walk!!!
We are all bundled up on a brisk Saturday morning. We were really hoping for a warm day but were glad there wasn't rain!
We want to thank everyone who donated to our team -- we raised almost $3700! I can't thank everyone enough for that support. The 2008 walk overall raised $1.1 million -- not too shabby!
We also want to thank everyone who walked with us and raised money: Chuck, Mary, James, Steve, Nora, Beth, Marcus, Josh, Debbie, Ken, Madison, Alexandra, Grant, Maria, Michael, Jackson, Jane, Sharon, Susan, Corrine, Robin, Keith, Chris, Laura, Luke, Rob, Lisa, Aria & of course, Evan.
Also, a special shout out to Billy at (Warning : Don't click this link if you are easily offended) www.tshirtsthatsuck.com who donated the silk screening of the T-shirts! This is the second year he printed the shirts for us and the second year that we were the best looking AND best dressed team at the Walk!!!
Subscribe to:
Comments (Atom)
