It's Movember

Movember, that time of year when the days grow shorter, the weather grows colder and the family gathers today for the holidays.  Of course in my family the kids are looking at me and laughing, and I am getting 'that' look from Gretchen my wife.

Yes I am growing in a mustache in an effort to change the face of men's health.  To quote my team lead (I am a part of Team Fat Cyclist).

"Movember is the month formerly known as November. During this month, men — manly men — grow mos as a way to call attention to themselves (hey, I’m just being honest here). 

Then, when people ask you “Why are you growing a moustache?” — and they will ask you this question — you tell them about the cancers affecting men, and ask them to donate to your Mo donation page (the money will be channeled to the Prostate Cancer Foundation and to LiveStrong). 

So really, a mo is kinda like wearing a pink ribbon for breast cancer awareness. But a lot more personal. And harder to remove. And it’s displayed a lot higher."

-The Fat Cyclist (Elden Nelson)

I hope you will be willing to support me and my team.

Our Summer Vacation Day 1

Tuesday morning and we are ready to go.  Bags are packed, car is ready, the kids are psyched...  A few last minute discussions and we are off to the airport.  


The folks at Children's have asked us to document the trip, so we have vowed to take lots of pictures.  When we arrive at the airport, we meet up with Jennifer Johnson from the Children's Hospitals and Clinics of Minnesota Foundation.  Better get a picture.

Jennifer is awesome, she set up the trip and took care of all our arrangements.  In addition, she has worked with the local media to get coverage of our trip including:

• KARE 11 News
• Star Tribune
• Lakeshore Weekly News

In addition to meeting Jennifer, we met the representative from Gilette Children's Specialty Health Care Nick Nelson.  Nick is a truly amazing kid with an amazing family.  Nick was traveling with his mom Greta and his sister, Naomi.  Naomi, a cancer survivor, has her own story.  Have a look at Nick's blog for the account of his adventure.

Fortunately, the flight was short and uneventful.  I am wondering how parents traveled with children before DS?

I look at these pictures and wonder where my little kids have gone and who are these big kids?  

Once we made it into Washington it was a short cab ride to the hotel.  For the kids, seeing all of the sites that we have been talking about was really exciting.  

Look there is the Washington Monument.  There is the Jefferson memorial.  Then you cross the mall and see the Lincoln Memorial and the Capital.  

We had concerns that perhaps the kids were a bit young for DC, but it seems clear that they are READY.

Once we made it to the hotel we had a little time for sight seeing round 1.  The first order of business was to make sure that the cameras were working and ready for action.  Both Sam and Louise have their own inexpensive digital cameras.

It is so great that they can take as many pictures and videos as they want and we don't have to pay development costs.

The amazing thing is how quickly the kids have become good at taking pictures.  Many of the the pictures you see in these posts were taken by the kids.

Sam really dove into his role as the official photographer for the trip.  As we walked around, he kept running out in front of the group taking pictures.  Our own little paparazzi.

We decided to tour the Spy Museum.  We thought that Sam would love this museum, but the entrance was a bit dark and scary.  When he begged to go to the portrait gallery we knew that we had to go with Plan B.  So while Gretchen and Louise learned about spies, Sam and I set off on foot.

What I love about DC is that once you are down on the mall, it is only five minutes to something interesting.  We decided to try out the sculpture gardens.  The National Gallery sculpture garden was awesome.  Giant spiders, cool fountains and Calder's Cheval Rouge.

We loved it.

We then met up with Gretchen and Louise had a quick dinner and it was time for bed.  We needed to be ready for an even bigger day tomorrow.

Wild About Children's Video

As I was getting fired up to post about our trip to Washington, I came across this post that never got published.   This is from last winter (2007-2008) but it is a nice video.  This was shown on the screen at the Wild game when they presented a large check to Dr. Frost and Dr. Dunn.

Pipebaum's Big Summer Trip (Part 1)

Gretchen and I have traveled to Washington DC many times as both children (thanks Moms and Dads) and adults.  We love our nation's capital, the monuments, the history, the parks, and all the people making things happen combine to make for a truly unique and wonderful city.

When Children's Hospitals and Clinics of Minnesota asked us to go the National Association of Children's Hospitals and Related Institutes (NACHRI) Advocacy Days with Sam and Louise there was no hesitation, we said YES in an instant.  Little things like work, home projects, and summer camp would all have to take a back seat to this adventure.

This was not going to be any old family trip to DC, we were going to work.  The folks at NACHRI and Children's of Minneapolis set up meetings with our congressional delegation, Senator Amy Klobuchar and Representative Erik Paulsen.  We were off to lobby congress.

Telling the whole tale or our visit in one post would make for a long post...   So Gretchen and I will work together to tell the tale in four installments, once for each day of the trip.  Before we get into the details, I do feel that a quick update is in order.

Life has been delightfully normal in the Pipebaum home.  Both Sam and Louise spent the year at the Highcroft campus of The Blake School.  Louise was in the first grade with Zambi Franchot.  Sam was in Pre-K with Dennis Gilsdorf.  They both had a great year.

Louise is working on her math and reading skills and enjoys writing stories, singing, acting, recess and hanging around.

Best of all, she has been seizure free since the surgery two years ago!

Sam loved the building blocks, legos, and all the adventures in the Pre-K room.  In particular, the inauguration and resulting discussion about the White House struck a spark.

Sam and several of his friends worked to create their own version of the White House using blocks.

In other news, we decided that the time had come to fix our leaky roof.  Rather than just do the roof, we decided to take on a couple of additional projects.  Shortly after our spring break trip, the contractors started work on the house.  Over the last eight weeks they have given us a new rough, a new front entry, new siding, and a new kennel for Cupcake.

Just to keep things interesting, Gretchen decided to return to work and has taken a consulting position with the hospital foundation.  She has been very busy helping the Abbott Foundation to continue to do their good work.

Finally, I have been busy with work. Fortunately, we have been able to keep busy even though things have slowed down a little bit.

Tomorrow we will begin our story about the trip.

Sam and I created a little stop motion movie this weekend.  Sam was in charge of choreography, story, motion, and modeling.  Dad was in charge of technology.

Happy Holidays

Each and every year we get all of our friends awesome family photos and we vow to do a better job next year coming up with a great shot for next year. Last year in May we had a pro come out to the house to get some pictures. She did a wonderful job and took a lot of great pictures. At the end of the session we decided to try for that great family shot one more time.

Now we know, the Pipebaums are the least photogenic family on the planet. I am not going to post all of the pictures here, but I did put them all in a web album.

Click here to flip through all thirty-nine of the photos and realize its true, the Pipebaums are the least photogenic family in the world.















So what have we been up to? Things are going really well. Since leaving the hospital, Louise has been seizure free for six months. Sometime over the last couple of weeks she seems to have crossed a threshold where her stamina seems to have really improved. We can now go a couple of days without a nap, and everyone stays on an even keel.

Sam is going to school three half days at Wayzata Community Church. He really enjoys it and has made a couple of great new friends. Gretchen and Sam have also been going to a music class once a week. Sam continues to be an avid outdoorsman. Today I found him sitting on the stairs in his 'deer blind'. Twenty minutes later he was at the top of the stairs, fishing. Before dinner he was outside working on his snow fort, it was about 15 degrees and dark. He did have a flashlight and all his winter gear. Here he is showing how to eat something bigger than your head.

The kid cracks me up.

Louise is a kindergardener at Blake. She has been taking violin lessons and has decided that she wants to be an astronaut when she grows up. Gretchen and I tried to use this new interest to help fuel an interest in science and math. Now Louise spends a lot of her play time doing 'science experiments', normally this consists of making a big mess. For Halloween she was a "pink astronaut princess flower girl".

Yeah, Louise cracks me up too.


Very serious about this Halloween mission

No year is complete without a trip to see the jolly old elf. We were all set to go to the Woodhill Christmas brunch, where Santa always makes a visit. The day before we got a nice little dump of snow. POWDER DAY ! We decided to blow off brunch and go get some turns in. Sam and Louise had a great time, but we wanted to keep it short. We realized that we just had enough time to go still see Santa, but there was no way to change out of our ski clothes. So here are Sam and Louise visiting Santa in their long underwear.


Santa loves camouflage long underwear.

For Gretchen and me one of the highlights of the last couple of months was an event put on by our local NHL hockey team, the Minnesota Wild. Each year the Wild do a "Wild About Children's" event where the players work with a local restaurant to raise money for Children's Hospital and Clinics. The players trade in their jerseys for aprons and work as the waiters and bartenders for all the attendees.

This year, the Wild decided to focus on raising money for the Epilepsy unit. Children's asked us if Louise would be interested in helping out with the program, we said that we would try. As part of this process and to help raise money for building the new Minneapolis and St. Paul Children's Hospitals, Louise was asked to help make a video about Children's mission. Gretchen and Louise went over to St. Paul expecting a quiet room with a camera and an interviewer. When they got there they found a room packed with about 40 people and all their gear. Gretchen said that it was really intimidating and was pretty worried about how Louise would respond.

Louise was a star...

I am going to try and get a copy of the video up here, but lets just say she was really comfortable in front of the camera. Oh, and Gretchen did really well too. It is really amazing to sit and listen to them tell you about her brain surgeries.

So the video was done Papa T sponsored a table at the event and we gathered a group to go over on a Monday in early December. Sam, Louise, Gretchen and I showed up a little bit early and there was the entire team. Every one of the wild team made it out for the event. Sam, Louise and I all got our jerseys signed by all of the players. Louise also got two very special signatures from her team, Dr. Dunn and Dr. Frost both signed her jersey too. (there signatures are easy to pick out, they are the really messy ones)

You hear stories about professional athletes, but every single one of the Wild players were unbelievably nice. To see Sam, perched on my shoulders high fiving Kurtis Foster, with a great big old shiner on Kurtis' eye, priceless.

Here we are with Aaron Voros the Wild's new tough guy scorer.

Two nights later we went to a game and Aaron was in his first fight five seconds after the first face off. Later on he got a goal. Two-thirds of a Gordie Howe hat trick.

Derek Boogaard is really nice guy, and he really is that big.

As part of the program, they showed Louise's video and then Dr. Frost got up to say a few words. Gretchen and I talked a little about our experience and then they got busy raising money. The event was a huge success, raising $180,000 which will all go to the Epilepsy unit. Hooray! A great start on the $7.8 million required to build the new pediatric epilepsy unit when St. Paul Children's is expanded and remodeled. They already run the largest inpatient peds epilepsy unit in the country, this will be a great improvement on the facilities.

Last night, the Wild invited us to a game in the Gaborik box where they presented a big check to Dr. Frost.

That many zeros and a Wild win? Smiles all around.

Both of Louise's doctors were at the event, as you can see they are both Wild fans.

Louise's Team After a Wild Victory

It took fifteen minutes lining up by height, and then Dr. Dunn closed her eyes.

Gretchen and I would like to thank Amy (from the Wild) and Julie (from Children's) for including us in this wonderful event that they put together. You did an awesome job. Next time you do this, sign us up!



As Louise continues to recover and get stronger, both Gretchen and I are so happy that we were able to find the Minnesota Epilepsy Group and work with these truly awesome doctors. When your child has epilepsy, you have to be careful to focus on today. When you start to look into the future, at all the things that might happen, it is too scary. We don't know what Louise's future is, the seizures could return or she may go on to become an astronaut - princess - flower girl. But with the Minnesota Epilepsy Groups help, Louise's future looks much more promising, we can dream again.

Last week, we had a big weekend. Skiing, sledding, skating, decorating the tree, birthday parties, and church school. Non-stop action all weekend. No major blow ups, happy kids all around. A year ago, a day like this was not possible. If we didn't stay on routine, and keep things mellow, Louise had seizures.

Thanks to the surgery, Louise is getting the opportunity to be a kid again. It really is wonderful. On Sunday, I was thinking about what would have happened if we had not found the Minnesota Epilepsy Group. The odds are very high that we would:
- have continued to work with our previous neurology group
- Louise would have continued to have frequent sub-clinical seizures
- the visible break-through seizures would have continued (break through the anti-epilepsy meds)
- Louise would have continued to damage brain tissue with each seizure

It isn't a happy picture. Two thirds of all children with epilepsy that do not achieve seizure control by the time they are adolescent never lead a 'normal' life. Depression, substance abuse, inability to hold a job, drive a car, maintain relationships, the odds would have been against Louise.

On the other hand, for children with epilepsy that do achieve seizure control the odds are exactly reversed. Two thirds of them will go on to lead normal lives. Effective epilepsy treatment is absolutely critical, and the earlier it can be controlled the better.

The simple truth is that epilepsy is a wildly complicated disease that is much more common than you could possibly imagine. 1 in 200 children have epilepsy. There are 125,000 new epilepsy cases in children every year. Epilepsy affects more people than cystic fibrosis, multiple sclerosis, muscular dystrophy and tuberculosis combined. The amazing thing is that more than 75% of the cases, they can not find a cause.

Dedicated epilepsy centers with video EEG like the Minnesota Epilepsy Group are the most effective way to diagnose and treat epilepsy. Unfortunately, many (most) children don't get the chance that Louise has been given. There aren't enough facilities. Non-specialists don't feel the need to refer their patients to the specialists. Parents can't afford to get the care their children need. Finally, in far too many cases even the experts have not figured out the answer, yet.

When people ask us how we got through this all we can do is smile and say we consider ourselves to be very lucky. We have been blessed with great doctors. A great support network (thank you all, you are wonderful). And blessed to live in a time where the doctors have so many options available.

Gretchen and I will be working to help St. Paul Children's Hospital and the Minnesota Epilepsy Group continue to expand the level of care that they can provide. We will also be working to help expand the awareness of the disease, support those seeking a cure, and to spread the word about the good epilepsy centers that ARE available. If you know anyone that is struggling with epilepsy that is looking for help, please feel free to have them get in contact. We would be honored to do what we can to help. If you are interested in helping out, let us know.


Well that was a bit heavy. I better end on a lighter note, how about one more picture. You see, even though we are the least photogenic family in the world, we keep trying. After a day of skiing, tree decorating, and birthday parties, but full of the holiday cheer that only comes once a year (and the dread of picking out the family photo) we gave it another shot.

What do you know? Even a blind pig finds an acorn once in a while.


Happy Holidays

Gretchen's Update

This is a message from Gretchen that I am posting on her behalf. Did I hear something about teaching a person to fish? Nah - I really like fishing and I am not so found of teaching.


Children's Integrative Medicine is hosting an educational event featuring Louise's story on Thurs Oct 11 at the Marsh. We'll have some tickets to share with friends, let us know if you are interested we would love to have you there.

I'm holding my breath as I think this... but things are really great. Louise seems to be seizure free right now and thriving in kindergarten. Sam just turned 4 and is opinionated and loving as ever. We just celebrated our 14th year of wedded bliss (is that a groan I hear from the crowd, okay Scott says "13 1/2 great years" not bad for a couple of hot-heads, many seizures and a couple brain surgeries). Sure, we have the same mundane garbage as any family (and I can have a horrible potty mouth), but the thing is that we often can get through it and back to seeing what a crazy, amazing trip this all is.

Sadly, we have watched many of our 7940 (ed. 7940 is the name of the Epilepsy unit) friends and extended family fall further into the seizure monster's grasp. We pray for our friends and their little ones. Thank you for supporting us and constantly reminding us of the fragility and unpredictability of life. You've helped us focus on the good stuff when there's alot of bad stuff we could see. The prayers and support from these amazing kids and their families is unbelievable. Wow, these families are good "pray-ers". Please keep them in your thoughts and prayers, they have sure helped us and they can use all the prayers we can muster.

Many thanks to Zoey (caringbridge.com/visit/zoeybemis)
Ryan E (caringbridge.org/visit/ryanerickson)
Ryan M (caringbridge.org/ne/ryanm)
Katelyn (www.caringbridge.com/visit/katelynw)
Super C (caringbridge.org/visit/carolineruby),
Reese (caringbridge.org/visit/reesejohnson),
Kylie (caringbridge.org/mn/kylie/)
Mary (caringbridge.org/mn/maryhable)
And of course Jess (caringbridge.org/nd/jessmarie) and McKenna and Drew (caringbridge.org/mn/drewolson/)


We will always be involved with epilepsy, with Louise and with our friends and supporting organizations that help improve treatments and find cures (efmn.org, cureepilepsy.org). We will be involved with efforts to improve local care for epilepsy as a new Pediatric Epilepsy unit is built at St. Paul Children's as part of the big Children's improvements

Madeline Island

We all took a week off and went to Madeline Island this week. Aunt Ginny and Uncle Henry have a cabin up here on the shore, and they were kind enough to let us use it for the week. Since Louise has been doing well*, we decided that a vacation was just the ticket.


I have loaded a bunch of pictures up to my picassa site. Rather than port them all over to the blog, which is a bit of a pain, I am just going to link to the picassa web album. Okay, I have to put one picture in of Louise. This is Louise in her Rasta phase.

If you click on the picture it will take you to the web album.

Thanks a lot to Ginny and Henry for letting us use your cabin, it is perfect. Also thanks to Debra Frasier for taking the family photo on pirates island.


*How well? seizure free since 7/3/2007. Today she and her brother were tubing in Lake Superior, without any parents on board at about 20 mph. They were on the tube for almost 2 miles and just had a blast. There is one picture in the photo album, but that was just during the warm up phase. Once we really got cooking, Gretchen was not in much of a mood to take pictures. I guess we will have to try again tomorrow.

We couldn't be happier with the way things are going right now.


scott