Goodby 2008...Hello 2009!!

Happy New Year!!!

I can't believe it's the last day of December -- where did the year go? For our family, this year closes with so much to reflect on and be thankful for. We celebrated the one year anniversary of Evan's brain surgery and our lives are so different and our hopes for Evan's future have significantly changed. Without the burden of daily seizures, he has many more opportunities for independence from our watchful eyes and he can run around and cause havoc without me trailing him quite so closely. He looks like a different child too: no more dark circles under his eyes from poor sleep due to seizures and his visual focus is more in the moment than wandering off somewhere.

Aria continues to amaze and impress us with her natural sense of empathy and consideration for others. I often said I worried more about how Evan's surgery would effect Aria, but she seems to take everything in stride. Her questions are challenging and we just answer everything as honestly as possible. She's looking forward to our next trip to NYU (more than Evan I'm sure) and always loves being in NY and buying things from the street vendors.

Rob and I are happy and proud of our children and the people they are becoming. Every year just gets better than the one before. Although this year was filled with medical challenges as our whole family recovered from Evan's surgery, I feel like we're closer than ever and have overcome so much.

We are looking forward to 2009 and wish everyone a happy and healthy new year!

Dr. Howard Weiner will be on TV!

So if you read this blog you probably already know how much we adore and respect Dr. Weiner. He performed Evan's surgery last year and gave our family the gift of a miracle that will last a lifetime. This is Evan and Dr. Weiner before going into the operating room for the third stage of his surgery...


On Friday, December 19, The Doctors will air a story on TSC featuring the Rolfes family, Dr. Howard Weiner of NYU, and the Hammerquist family. Besides discussing TSC, the segment will focus on the Hammerquist family's son's recent epilepsy surgery. This new show appears at various times across the country, so click here to search local listings. In addition, I heard this will be the show's "holiday giving" episode.

Check out what we did yesterday!!

We took the kids rock climbing and I couldn't help reflect on how amazing it was that we were able to take BOTH kids to experience this. Last year, prior to Evan's surgery he was having way too many seizures to consider rock climbing. On the way home, Rob and I were talking about how far Evan has come since surgery -- just 10 months ago we brought him home from the hospital and he was unable to walk independently and now he's climbing a big cliff fearlessly. His progress has been inspiring to say the least! Here are a few snaps from our day...








What a blast everyone had! They are already asking when they can go back and Aria told us she wants real climbing shoes.

Get Your Shoppin Fix -- For Charity!!

It doesn't get better than this:
--spend $5
--the money benefits the TS Alliance
--Shop at Macy's on Sept. 20 and get 20% off

Who's in? We can meet at Macy's for a mass shopping trip unlike anything that's ever been seen before! All you have to spend is $25 to come out ahead and it's for a good cause!

SHOP FOR A CAUSE

On Saturday, September 20, Macy's stores nationwide will host a Shop For A Cause charity shopping day. Donations will benefit the TS Alliance and other local nonprofit organizations. Make a $5.00 donation and you will receive your exclusive all-day pass in the mail, and on Saturday, September 20, you will be entitled to receive a special savings of:

* 20% off regular, sale and clearance women’s, men’s and kids’ apparel and accessories, fine, bridge and fashion jewelry, bed & bath items, housewares, frames, luggage, china, crystal and silver, all kitchen and personal care electrics and technology items.
* 10% off regular, sale and clearance furniture, mattresses and rugs.

Here is the link to make sure your $5 goes to the TS Alliance:

TS Alliance shop for a cause page

Thanks for shopping! And please let me know if you want to go together!

Evan as Cover Model!

A few months ago the TS Alliance asked us to write an article about Evan's experience with TSC, Epilepsy and brain surgery and how we launched www.seizuretracker.com during this time period. So we sent the article and a few photos to them and here is the PDF of it -- the article is a few pages in...

http://www.tsalliance.org/documents/Perspective-Summer08.pdf

It was pretty amazing to get our copy in the mail and see a big photo of Evan on the cover!

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

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:

www.firstgiving.com/seizuretracker

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!

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!

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.

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.

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!

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!!!

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.

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.

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!

Genetics Panel

A couple days ago we were contacted about being on a panel to talk to 1st year medical students at Georgetown Medical School about Tuberous Sclerosis. The person who was supposed to speak couldn't make it and our names came up. The only hitch was that it was the next day so we had to move quickly to get a speech together. Rob went and gave a 20 minute speech about TSC and our family's experience.

It was such an honor to have been asked and I'm so proud of Rob for doing the speech. I was bummed that I couldn't have been there too to cheer him on though. Rob was one of a handful of people talking about various genetic disorders and it's interesting that when you are dealing with a rare disorder, a parent or patient who has chosen to educate themselves about it knows more than the average general practitioner. I'm not saying this out of conceit, it's just what we've experienced. I am in no means criticizing doctors, I'm sure TSC is briefly discussed in medical school, but what is the likelihood of ever encountering it if you aren't specializing in an area that deals with it. There are about 50,000 cases in the US, but that's still a pretty small percentage.

Being part of a discussion panel of this nature is huge because TSC is a rare disease and every mention of it helps raise awareness in some niche of life. TSC has been mentioned on a few medical TV shows and every now and then a newspaper will do an article about a child with TSC who has brain surgery, but it is still virtually unknown. One day when I say that Evan has Tuberous Sclerosis I won't be met with a puzzled look, and that's when I'll know real progress is being made in terms of awareness -- and I know that day will come.

Poke, Prick, Prod

Today was dedicated to running around with Evan to various doctor's offices. Unfortunately, they all involved poking and prodding so it was a rough day and Evan was less than happy by the time we were through with everything.

Evan is still wearing AFOs (short braces) on both feet and will continue to wear them for a while to make sure his bones in his feet form properly. We saw a lot of improvement physically in this area after surgery but not enough of a miracle to toss the braces yet. He does a lot of bad habit compensations and is really good at it. Half of the cute sitting styles he has are compensations for balance issues. Thank goodness he has great physical therapists! Since he is growing quickly, it was time to be fitted for new braces. This sounds simple enough, but it involves casting both feet. In previous visits this has culminated in wails that rock the building, so I wasn't looking forward to this appointment. He surprised us all with how well he handled the casting. He was visibly stressed about it but didn't even shed a tear. Whew!

That went well, but the next stop was a lab to get blood work done. We think Evan's Trileptal level may still be too high, so Dr. LaJoie wanted to get that checked as soon as possible. Evan has been to too many labs, remembers being in them and will slip into hysterics when we walk in the door, so this is a bit tricky. Our new theory is to never use the same lab twice. We're going to be driving to Maryland for blood tests soon! He really did well with the blood draw but was crying quite a bit and of course I had to hold him firmly so he didn't move him while they did it.

The final appointment was a well child visit with Evan's pediatrician. At this age well child equals immunizations and I had completely forgotten about that. Aria had her well child visit today too, but she won't need shots for a few years. This one was by far the hardest appointment of the day. I was holding Evan as he begged the nurse, through tears, not to give him shots. I looked at Aria and she was cowering from the experience of watching her brother. I asked her if she wanted to step out of the exam room which of course she did -- I wanted to too. I held Evan in a restrained position again as he sobbed and the nurse poked him as quickly as she could.

We left the office with stickers, lollipops and a toy for each of them. Dr. Hoang felt so bad for Evan that she came out and gave him a hug and a toy before we left. Not being one to shy away from a reward based system, we also had an outing that resulted in a new train for Evan and a ladybug habitat for Aria. It didn't make me feel any better though. I was definitely the bad guy today -- luckily the kids don't seem to see it that way. Not yet at least, it'll surface in therapy years from now!

$4 Million for TSC Research in 2008

Our contribution to a congressional lobbying effort paid off! Last year Rob and I were part of a group lobbying Congress to raise funding for Tuberous Sclerosis Complex (TSC) research for 2008.

We visited several Congressional offices and told our story while trying to impress upon the staffers (it's rare to actually get an appointment with a Congress Representative, but the staffers have their ear) how important TSC research funding is. This is a little tricky because you have to begin with a definition since most people have never heard of it. About 50,000 people in this country have been diagnosed with TSC so it is relatively rare. Interestingly, that's about the same number of people diagnosed with Lou Gehrig's Disease.

It was a long haul, but in the end, $4 million was provided to the Department of Defense Tuberous Sclerosis Complex Research Program. The money will be used to promote innovative research focused on lessening the impact of TSC. This program is administered by the US Army Medical Research and Materiel Command through the Office of the Congressionally Directed Medical Research Programs. It's so interesting to see where funding originates.

I am so happy to know that there are strides being made and am proud that Rob and I were able to take a stab at being lobbyists. There was no funding approved for 2007, so $4 million for 2008 is a huge step in the right direction. Nobody should have to live with this debilitating condition.

Genetic Testing

Evan is now a card carrying member of an exclusive club, the TSC1 Gene Mutation club. It is VERY exclusive but not necessarily one you'd want to join.

When Evan was in the hospital last month he had a genetic test done and although we've known for a while that Evan has Tuberous Sclerosis Complex (TSC), we didn't know, until now, which gene is involved. There are two genes that have been isolated as causing TSC when a mutation occurs, TSC1 & TSC2. The main function of these genes is to suppress tumor growth, so if one of them isn't working properly, all sorts of issues can arise. The gene mutation is dominant and can be inherited or random. We think Evan's is random because for it to be inherited, Rob or I would have to have TSC, and neither of us have any symptoms. This also means Evan has a 50% chance (remember your High School Biology section on genes?) of having a child with TSC if he decides to have kids -- a long time from now.

The gene mutation happens in utero, so people are born with it and symptoms occur at different times in life, depending on what areas of the body are affected. The most common areas for tumors to form are: brain, kidney, heart, skin & eyes. Evan had three in his brain, all of which were removed and a small tumor on one kidney. As horrible as that sounds, he really got lucky that this is the extent of the involvement. Along with the tumors often comes autism and epilepsy and Evan only has the epilepsy. We are hoping Evan's epilepsy will continue to be inactive after Dr. Weiner worked his magic in the OR!

So I guess the genetic results are informative, but it really doesn't change anything in terms of his treatment. Not yet at least. It's a huge scientific step to have isolated the genes, so maybe one day something can be done to find a cure and/or keep people from getting TSC at all.

Back to School

Evan is officially back to school. Before the winter break he started going one day a week at a Fairfax County preschool where he'll get PT and yesterday he went back to his other school. His teacher made a sign that said "Welcome Back Evan" and said it was as if Evan was never gone. He did really well in the class and had a great time.

Evan is doing really well overall and is back to driving his sister crazy, so I'd say all is well. It's really fun to watch the two of them together and they really do share a strong connection.

Happy New Year!

It's been a crazy year and although I can't say 2007 was horrible, we don't want a repeat of it. We had a lot of great things happen throughout the year but all of it was peppered with seizures, lots of seizures. Ending the year with a seizure-free Evan is absolutely fantastic and a trend we are all looking forward to continuing!

Evan is doing really well and is continuing to improve every week. He's starting to give us a run for our money and if he decides to take off, we actually have to pick up the pace to catch him. He's a really funny kid and has us laughing all the time with his antics. It's amazing to see how much more verbal and focused he is after the surgeries.

Aria continues to impress us with her ability to take everything in stride. She is a really great big sister to Evan. She seems much older than she is when we sit back and just watch her interact with him.

As for Rob and I, we are just happy to have two healthy kids. We are all battling colds, but I'd take that over seizures any day!