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) 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.

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.

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.

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 & 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!

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.

March 19, 2008

Good News is Good News!

Get ready to hoot and holler because the word from all the testing is that Evan is NOT having seizures! We didn't think he was, but we were noticing an odd muscle twitch when he falls asleep and as he wakes up. It was easily diagnosed as Myoclonis, which is basically just involuntary twitching caused by muscle contractions. Dr. LaJoie said anyone can have this, but it is even more common to occur in people with epilepsy. Sounds good to us! His EEG was clear of all unusual spiking and everyone was thrilled to see that. Dr. LaJoie also remarked on how different this EEG was compared to the one before surgery. Looks like a completely different kid -- in fact, he is a different kid. After the surgery we were told that Evan would be evaluated and treated as if he were a new patient because his brain has changed so dramatically.

We have finally gotten the go-ahead to take Evan off a drug he's been on since before the surgery. It sometimes gives him insomnia so we are happy to get rid of it! Dr. LaJoie didn't want to take him off of it until now because she wanted to have a chance to evaluate him for a few months post-surgery.

So good news all around!

March 17, 2008

Post-Surgical Testing - NYU Hospital

We are back in New York and have had a big medical day. This is a routine trip to follow up on the level of surgical success. We planned the trip to coincide with Aria's spring break so we could do this trip as a family. Today we met with Dr. Weiner, Evan's surgeon, and it was great to see him. He was happy to hear how well Evan is doing and was very pleased by the MRI results. I think he's almost as interested as we are to see the results of this week's Video EEG.

From Dr. Weiner's office, we crossed the street to begin the process of checking into the hospital. It's a strange thing to have your child in the hospital because everything about your normal life is left behind as you walk in the door. The environment is surreal and if I didn't wear a watch I'd have no idea of the time of day. You order food to be delivered because it's time to eat and not because you're hungry.

Evan is a bit of a rock star at the hospital and has a way of endearing himself to everyone who meets him. We visited the nurses in Intensive Care and they were all excited to see him again and remarked on how tall he had gotten in just a few months. They had hugs and kisses for him and threw him in the air as he laughed. He also got a lot of special treatment from the Child Life Specialists who organize all the daily activities for the kids on the floor.

After all the socializing, it was time to get down to business and get Evan hooked up to the EEG leads. This is never a pleasant process and although it doesn't hurt, Evan cried through the entire process of gluing the leads on his head. That was the hardest part of today, but it wasn't a big surprise because Evan has always hated that part. Now he is being monitored through the EEG leads while being video taped and he'll be the the hospital for a few days. We are all hoping to hear good news over the next few days. We don't think he's having seizures and hopefully that will be confirmed this week.

This evening, there was a St. Patrick's Day party on the floor, complete with Irish dancers. Evan was allowed to unhook for an hour so he could attend and he ended up being the hit of the party. At one point during a break between dancers he showed off his own dance moves and then before they did their last dance he raised his hand and asked if he could dance too. They had him join the dancers and Aria and another little girl did too. It was a riot watching them all weave in and out as they did "the snake dance" (think Congo line with Irish clogging) . Everyone got a laugh at the scene of dancers and I'd say the party was a success! Evan is definitely not shy, but I'm not sure if it comes from confidence or a sense of indifference to what other people think. Either way, it'll serve him well.

March 08, 2008

National Epilepsy Walk, March 29, 2008

I can't believe it's been a year since the epilepsy walk! So much has happened in such a short time. We are, of course, participating in the walk again this year. So much of what we are thankful for is due to the advances funded by organizations like the Epilepsy Foundation, so to say they are near to our heart is an understatement. We are assembling our team and would love to add members to our crazy crew! Please consider sponsoring this great cause in whatever way you can...

March 04, 2008

Welcome to Lake Weiner

Today we spent the morning at Children's Hospital in DC. We were there so Evan could get an MRI done prior to his next set of appointments with the team at NYU Hospital. We'll be up there in a couple weeks for appointments and some extensive testing, but NYU didn't have an MRI opening until May so we had it done locally.

One of the pretty cool advances in medicine comes in the form of digital photography. While Evan was sleeping off the heavy dose of drugs they gave him for the MRI, the nurse called the digital lab to request a copy of the scans for us. We walked to the lab on our way out and the CD was waiting for us!

Of course, we came home and popped the CD in a computer to look through all the images of Evan's brain. It's amazing to see. In November, Dr. Weiner told us that the opening left from the abnormal tissue he removed would fill with brain fluid and the brain may even spread out a little to fill the space. If a lot is removed, there will still be extra fluid and we lovingly refer that that part of Evan as Lake Weiner. Although after looking at the MRI images, it may be more like a river or stream, check it out...
You can clearly see the horizontal-ish white area where Dr. Weiner removed all the nasty bits. Evan also has metal plates on his head and I think one of them can be seen in the uneven area on the outer surface at about 8:00. Again, this is Rob's and my MRI report, so take all of this with a grain of salt!

If you are geeky like me and want to compare to the MRI done right after surgery, you can see it at this old blog entry:

Medical Maze: Brain Invasion

Overall, Evan did really well today, although he had some anxiety about being at the hospital. He was afraid he was going to have another surgery and even Aria was concerned that we wouldn't be home tonight. Clearly, we have to do a better job with our explanations. Evan seemed much better once he was convinced this trip didn't involve surgery and started noticing that he was hungry. We told him he could have a popsicle after he woke up from the sedation and the boy never forgets anything -- as soon as he opened his eyes he said, "Can I have a popsicle now?" What a trooper!