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.
June 25, 2008
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!!!
March 27, 2008
Aria's Thoughts
Occasionally, people ask us how Aria is effected by everything going on with Evan. She seems to handle everything in stride and frequently impresses us with her ability process all the information and respond with insightful comments and questions.
Although Aria loves reading, writing is challenging for her. Each week she has a writing assignment due on Friday and this week, much like every other week, she kept putting off doing it. At dinner tonight we talked a lot about the epilepsy walk and she decided this would be her topic. She sat down and wrote until it was finished even though she was tired. This is what she wrote:
We're doing a epilepsy walk. Here's how it works, first we get a lot of people to walk with us, second we ask people to sponsor us, next we do the walk. We're doing the walk to stop seizures all over the world. I don't think seizures are very good. My brother used to have seizures, he had surgery to stop his seizures and now they're all gone! I hope some day there is no such thing as seizures.
Although Aria loves reading, writing is challenging for her. Each week she has a writing assignment due on Friday and this week, much like every other week, she kept putting off doing it. At dinner tonight we talked a lot about the epilepsy walk and she decided this would be her topic. She sat down and wrote until it was finished even though she was tired. This is what she wrote:
We're doing a epilepsy walk. Here's how it works, first we get a lot of people to walk with us, second we ask people to sponsor us, next we do the walk. We're doing the walk to stop seizures all over the world. I don't think seizures are very good. My brother used to have seizures, he had surgery to stop his seizures and now they're all gone! I hope some day there is no such thing as seizures.
March 22, 2008
We're Home!
We're home and very happy to be back! Unfortunately Evan came home from the hospital not feeling up to snuff. Hospitals are such germy places! Yesterday we went to the doctor and had a low-key day at the house and he seems to be feeling a little better this morning. Today we are going to get out of the house so Aria can use up some of her saved up energy!
Now that we're home and I've had some time to reflect on our stay at the Ronald McDonald House I have two stories I want to share...
All the Ronald McDonald Houses are privately owned and run, so they are all different. The one in Manhattan, where we stayed on this trip, is reserved for kids with cancer. Although Evan doesn't have cancer, we were able to stay there because they weren't full. A lot of the kids are going through chemotherapy and radiation and it's amazing to see them all running around with big smiles. I remember when my dad had cancer and went through treatment and how horrible he felt -- you just can't keep kids down! What interested me in my own kids is that they seemed completely oblivious to the differences in all the kids staying there -- some were bald, some wore masks to protect them from germs, some had tubing in their hands to be connected to an IV when they went for outpatient therapy. I was waiting for questions from Aria and Evan, but they never came. That's the amazing thing about kids, they can look at people for who they are with a purity adults lack.
There is playroom downstairs and it's huge. There are craft areas and several play areas set up to offer something for everyone. In one corner there is an arcade room with several stand-up video games, driving video games you sit in and PS2 set-ups. Evan was checking everything out and was interested in a driving game that someone was playing. The older boy saw Evan and offered up his seat in the middle of a game to let Evan try. It was very nice of the boy, but offered a challenge too. The boy was in a wheel chair and had gotten out of the chair to play the game and was now supporting the weight of his body with his arms as he helped Evan play the game. I watched as he and Evan played together and was interested to watch both boys work together. When the game was over, Evan hopped down and watched his new friend play. I was struck by the thought that the interaction was probably good for both kids. We all need help sometimes, but what feels best is to be able to help someone else.
Now that we're home and I've had some time to reflect on our stay at the Ronald McDonald House I have two stories I want to share...
All the Ronald McDonald Houses are privately owned and run, so they are all different. The one in Manhattan, where we stayed on this trip, is reserved for kids with cancer. Although Evan doesn't have cancer, we were able to stay there because they weren't full. A lot of the kids are going through chemotherapy and radiation and it's amazing to see them all running around with big smiles. I remember when my dad had cancer and went through treatment and how horrible he felt -- you just can't keep kids down! What interested me in my own kids is that they seemed completely oblivious to the differences in all the kids staying there -- some were bald, some wore masks to protect them from germs, some had tubing in their hands to be connected to an IV when they went for outpatient therapy. I was waiting for questions from Aria and Evan, but they never came. That's the amazing thing about kids, they can look at people for who they are with a purity adults lack.
There is playroom downstairs and it's huge. There are craft areas and several play areas set up to offer something for everyone. In one corner there is an arcade room with several stand-up video games, driving video games you sit in and PS2 set-ups. Evan was checking everything out and was interested in a driving game that someone was playing. The older boy saw Evan and offered up his seat in the middle of a game to let Evan try. It was very nice of the boy, but offered a challenge too. The boy was in a wheel chair and had gotten out of the chair to play the game and was now supporting the weight of his body with his arms as he helped Evan play the game. I watched as he and Evan played together and was interested to watch both boys work together. When the game was over, Evan hopped down and watched his new friend play. I was struck by the thought that the interaction was probably good for both kids. We all need help sometimes, but what feels best is to be able to help someone else.
March 20, 2008
Lots of Fun at the Ronald McDonald House
Yesterday was a BIG day full of excitement! First of all we got to check Evan out of the hospital which was huge, but when we got back to the Ronald McDonald House, it was party central. We started with an art project to make decorated paper Easter eggs and after that there was a celebrity visit followed by egg dying, dinner, Easter egg rolling and an egg hunt! Whew, I’m still tired just thinking about it! The kids all had a blast and it was fun watching them all have such a good time. 
Aria, Root the Sprite, Johnny & Evan
At one point Johnny played a few rounds of Simon Says with the kids, only they substituted in all the kids' names for Simon. When it was Aria’s turn she said, “Aria says hop on one foot” so of course everyone began to hop. Then she said, “Stop hopping” so everyone continued hopping. We were all laughing so hard and Aria was getting out of breath hopping and never gave a third command so Johnny had to step in for a round of Johnny Says!
The celebrity visit was the high point for me, but if you don’t watch a lot of the Disney channel, his celebrity status may be lost on you. Johnny of Johnny and the Sprites came for a visit. He was really cool and sang songs and played games with the kids. Everyone had a great time with Johnny and Root, the Sprite. Evan had a lot to tell Johnny and was not shy about asking questions.
Aria, Root the Sprite, Johnny & EvanAt one point Johnny played a few rounds of Simon Says with the kids, only they substituted in all the kids' names for Simon. When it was Aria’s turn she said, “Aria says hop on one foot” so of course everyone began to hop. Then she said, “Stop hopping” so everyone continued hopping. We were all laughing so hard and Aria was getting out of breath hopping and never gave a third command so Johnny had to step in for a round of Johnny Says!
Don't stop hopping Johnny!
After Johnny and Root left, we moved right into Easter celebrations. All of the Easter festivities were fun too and it looked like every kid staying here had a blast. Most nights at the Ronald McDonald House are a little quieter, but the staff here sure does a great job at making this a fun place where everyone feels welcome.
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