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!