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.

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!

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.

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...

Team Page:
http://www.walkforepilepsy.org/goto/SeizureTracker.com


Our individual pages:

http://www.walkforepilepsy.org/goto/Evan_Moss

http://www.walkforepilepsy.org/goto/Aria_Moss

http://www.walkforepilepsy.org/goto/Rob_Moss

http://www.walkforepilepsy.org/goto/Lisa_Moss

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!

SeizureTracker.com has launched!

Rob and I have been working on a passion project for months and it's time for me to take a minute to brag. We launched a website to help people living with epilepsy. The site provides a free, interactive way to log seizures, medication dosages and doctor appointments online. After entering information, a report can be created with a graph to show the number of seizures against the current medication levels. The report can then be printed out or emailed directly from the site. It's really a powerful tool and we are excited to have launched it! The response so far has been positive from both people using the tool and doctors viewing the reports. In the three months since we (very quietly) launched the site, over 200 people have set up accounts, logging close to 5,000 seizures.

www.seizuretracker.com
check out the sample report!

When we learned Evan was having seizures, one of the neurologists we visited gave us a piece of paper with a calendar containing 365 boxes to track a year's worth of seizure activity. With the frequency of our son's seizures, it wasn't long before the sheet of paper was a jumble of numbers, notes and highlighted codes. We started looking for an online tool to organize all this info and when we couldn't find one, we started working out a plan to create one. We quickly realized the application could be helpful to other families as well, so we began thinking of how to satisfy our needs while expanding our thought process to cover a broader spectrum.

Rob has worked tirelessly to build the site and I am very proud of the end result and of him. For the last year I haven't seen much of him once the kids are in bed as he works into the wee hours, making improvements and adding functions to the site. It is his dedication that has really made this happen. I can't help thinking it was Rob's way of finding something positive to direct his energy toward since he couldn't stop Evan from having seizures. I came across a quote that made me think of Rob and his unyielding focus:

"If you don't like something change it; if you can't change it, change the way you think about it." ~Mary Engelbreit

My biggest role in the development of seizuretracker was quality assurance testing. I logged Evan's seizures and looked for bugs in the tool. I was basically the chief complainer, pointing out things that were broken or frustrating from a user perspective. We've had a lot of people who have also helped us make this launch happen. Rob's brothers, Chuck and Rich, have both offered technical guidance, often saving Rob from spinning in circles when he couldn't figure something out. Our friend, Sally, did the design work and really blew us away! We just love the visual ideas she came up with. There have also been quieter helpers: our parents and Rob's sister's, Mary & Becky, who have all helped watch the kids so Rob could steal away to the computer or attend meetings. I have to admit, there are some untapped resources out there among our friends and family who we haven't reached out to yet, but you know who you are. We just hope you don't screen our call when you see the number on your caller ID!

Imagination

One thing we've noticed since Evan's surgery is that his imaginative play has really increased. Our theory is that his brain isn't seizing anymore so he isn't as tired. The areas we've noticed the biggest impact are his imagination, focus and verbal pronunciations.

Evan always had a good imagination and our house has always been filled with characters only he can see, but now we have to open the front door to let them in and interact with invisible birds and monkeys on a daily basis. They all have names and they are all "so cute". Sometimes it's a cartoon character from TV, but often the imaginary friends are animals and a LOT of them are named Thomas, after Thomas the Tank Engine.

Now that Aria is in elementary school, her view of the world is a little more serious and she is starting to dislike playing along with Evan's imaginary world. At dinner the other night Rob and I got a big laugh at their exchange:

Note to people without kids: "Super Why" is a new kids show and the characters (one of them is also called Super Why) are super heroes that help solve problems.

Evan: (on his invisible telephone) Hi...Super Why?...yeah, can you come over?...ok...so you'll fly right over?...great, bye.

Evan: (to the family) Super Why will be right over.

Aria: You know Super Why isn't real though, right?

Evan: Super Why is real!

Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.

Evan: Hold on.
(Evan picks up invisible phone and dials)

Evan: Hi, Super Why?...yeah, are you real?...oh, you are real?...great, thanks.
(Evan pushes invisible button on invisible phone to hang up)

Evan: (to Aria) Super Why is real.

Aria shakes her head...can't really argue with that logic!