Sunday, December 29, 2013

Last few days of the T-shirt fundraiser.

Help Sam continue his trips to Boston for Omegaven, the drug that has saved his life.  Only a few more days to order.
Thank you to everyone who ahs ordered and helped spread the word!

Wednesday, December 11, 2013

T-Shirt Sale

We have been working on putting this together for quite awhile now and everything is finally ready.

We are excited to announce that our "Hope Is Strength" shirts and stickers are now available to order through January 3rd.

Proceeds from the sale will help fund Sam's trips to Boston.

Click the link on the right side of the page or below for ordering information.

Thank You for supporting Sam!!

Tuesday, July 30, 2013

The Roller Coaster

The last few months have been a roller coaster ride for us.  Summer is always a busy time, but this year has been unusually hectic and crazy.

The filming and the airing of Sam's story in June on NBC was a pure adrenaline rush. We were excited to see the story air to a national audience, but were relieved when it was over.  After the story aired it felt like something was missing, we need to think of new ways to help spread the word about Omegaven.

Another parent has started a petition to the FDA to change the compassionate use guidelines for Omegaven.  Please help by visiting and adding your name to the petition and then sharing the link with your friends and family asking them to do the same:

Just over a week after the NBC story ran we were packing up to head to Boston for the third time in three months, the second month in a row that our entire family traveled out there.  This time we were headed to the 28th annual Oley Foundation Conference after our regular clinic visit at Children's.

We had never had the opportunity to attend one of these conferences, but have wanted to for a few years.  It was an awesome experience to meet so many people that we have connected with online over the years and to reconnect with families that we had met briefly before.


 We got to spend a fair amount of time with three other families who have children with Microvillus Inclusion Disease.  It was so relaxing to spend time with all of them and hear the laughter as we shared experiences and stories (and too much beer), compared notes, and spent time with people who truly know exactly what we go through on a daily basis.  We also got to have lunch with part of one of our favorite MID families Anna and Mike Cyr.

Bradley, Sam, Declan, and Bo.  Pure craziness having 4 boys hooked all hooked up to TPN together in one living room along with 3 siblings.

I also had the honor of shaking the hand of Dr. Stanley Dudrick, who invented TPN, and hear him speak about his experiences during the creation and trialing of TPN.  It was a little scary to hear how many similarities there are between his experiences with being shunned by his peers and the political issues he dealt with the in 60's and what Dr. Puder has experienced with trying to get Omegaven approved for use in the U.S. by the FDA.  Very little has changed in over 50 years.

 We also got to spend a fair amount of time chatting with our team from Boston as well as Dr. Puder who were all in attendance at the conference.

All in all a very positive, although exhausting, experience that I would highly recommend to anyone who is dependent on TPN or tube feedings.

We got to spend the 4th of July with my old friend Ryan and his family who we haven't seen in a few years.  It is always nice to know there are people out there that you can not see for a few years and pick up right where you left off like no time has passed.

On the 6th Deb and I got a much needed break from the boys and headed to the first concert we have seen together in over 10 years.  Thanks to our friends Mel and Marc for spending the day with us and driving us all around the state.

On the 8th we spent the day at Silver Lake with Ryan's family.  Our son Ryan got in some scuba diving and both boys enjoyed time on the boat and just hanging out in the water.  It was very hard to say goodbye again to our good friends.


With heavy, but happy, hearts we headed home to what was supposed to be a few weeks of being back to our normal routine.

Fate had other plans.

It was a long day and we were all exhausted.  We looked forward to sleeping in the air conditioned house and waking up to start a new day.  That night when we went to bed we had no idea that we were about to have an experience that would make us appreciate our lives and experiences so much more.

At 2:30 AM our doorbell rang. I sat up in bed, as did Deb, and my reaction was to ask who in the heck was ringing our doorbell at 2:30 AM.  Then the bell rang again, then it started ringing nonstop, then the pounding on the door started.  I jumped out of bed and instantly knew that something was wrong.  It was too bright in our room, the Sun shouldn't be hitting the window in our room at that time of the morning.  When I got to the door I was told by a very shaken police officer in an urgent tone that the house next to us was on fire and we needed to get out of our house as fast as we could. Between switching TPN from the pole to the bag, getting clothes on everyone and getting a leash on the dog I think we made it in two minutes.  If we had realized how serious our situation was we might have moved faster.

I remember being told to run as soon as we got out of the house, which was right about the time that the last Oxygen tank in our neighbors house exploded.  I remember being relieved to see our neighbor sitting in her wheelchair in the driveway a few houses away.  Then they started evacuating more houses and moving us further away. Everything happened so fast that it is mostly a blur.

We sat waiting in fear and had no idea if the fire had spread to our house or if our house suffered any damage.  Eventually we were allowed to go back to our house.  We were very lucky, but we wouldn't find out until later that morning just how lucky we were. The fire department saved our house.  We have a large tree to be taken down and  a portion of our yard will need to be excavated to remove all of the glass from the windows exploding next door. The siding on that side of our house and both of the bedroom windows on that side will need to be replaced.

Our elderly neighbor was not as fortunate.  Her house and almost everything in it are a total loss.  The fire and explosions knocked the front and side of the house off of the foundation.  Nobody was hurt, that is the important thing.  Everything else is just stuff.  She barely made it out of the house in time, and was only able to do so because the police officer who arrived on the scene before the fire department went into her burning house, found her, and carried her out of the front door just moments before the first oxygen tank exploded.

Later I would learn that our gas meter, which is on the side of our house between our bedroom windows, was a major concern for the fire department and the reason for the evacuations of several houses in each direction.  The heat from the fire was so intense that a seal could have failed on the meter and we would have lost our entire home.  Luckily there is a 6 foot wooden fence between the houses that deflected a good amount of heat.

All of this was caused by a faulty wire in a ceiling light fixture.

The boys have mostly recovered, but Sam is having nightmares and wants to have fire drills to prepare for another emergency.  Ryan got to tour a firetruck and be interviewed for the local news.

While we wait for insurance to work out details so that our house and yard can be repaired and her house can be torn down we are reminded every day of that night and how much worse it could have been.

In the short time since then, Sam has lost his first two teeth and has two new ones coming in.  By the looks of the new teeth, we may have a visit to the orthodontist in our future as they are pretty crowded.

Last week we spent the week in our favorite campground located in the Chequamegon-Nicolet National Forest.  It was a fun filled week spent with family although it was unseasonably cold and a little wetter than we would have liked.  We spent a few days at the beach and the kids played for hours with their cousins.  It is so much work to camp with the kids, but the memories that are made spending time with the extended family in the campground are well worth it.

Our family had a near disaster while camping when a large limb from a tree fell on my cousins tent when everyone was sleeping.  It was a close call for them as the branch narrowly missed where my cousins oldest daughter was sleeping.

In between all of this we have somehow found a few minutes here and there to spend time with the neighbor kids and spend some time in the pool.

In just a few weeks the boys will return to school and when they are asked what they did on Summer vacation, they should be able to have plenty to tell. I hope their teachers are prepared for their story.

Friday, June 7, 2013


There is a lot of traffic on the website due to the news coverage.  A lot of first time visitors.

The two videos on the right side bar will give you an idea of what our Omegaven Journey was like (Sam's Journey - the lower video), or what our one day trips to Boston are like (19 Hours - the top video).

There are also archives available of our blog going back to March of 2008.

Please feel free to contact us with questions at

In case you missed the Rock Center Episode here is a link to the full story:

Make sure to check out the post right below this one, and help out by signing the petition!!

We need your help!

There is a huge issue facing this country that many of you reading this probably haven't heard about.  There is a shortage of many IV nutrients and medications in this country.

The problem doesn't just lie with IV medications either, just look at the list of medications that the FDA currently has listed on their drug shortages page.  Some drugs have been on this page for over a year.

These shortages of IV medications affect a tremendous number of people who depend on TPN nutrition like Sam does.  Without these vital components of Sam's TPN he would not be able to thrive and be healthy.  In many cases there are no substitutions for these vital pieces of nutrition.

You may think that you are not affected by these shortages, but in the blink of an eye some medication that you do need could not be available when you need it.

What if you were diagnosed with Lyme Disease?

or Cancer?

There are multiple factors that are contributing to these shortages.  From bad policies and corporate greed, to an agency that is so broken it spends over 30 years trying to decide if a checmical that it is allowing in handsoap is safe or not:

Yes, this is the same agency that can't approve Omegaven (which is just refined fish oil) for use in the US without a double blind study (But absorbing triclosan through your skin is apparently fine).

It is time for a comprehensive and meaningful overhaul of the system that allows these shortages to occur.

The FDA continues to take action that is too little and often times doesn't help enough.

Help us tell Senator Tom Harkin (D-IA) and the Representative Upton (R-MI), the Chairs of the Congressional committees that oversee the FDA that they should do all they can to compel the FDA to immediately work together with the drug manufacturers to protect the lives of all Americans by:
1. Immediately resolving current IV drug shortages, by incentive, import, and expediting drug approvals.
2. Developing clear plans to prevent future IV drug shortages by the end of 2013.

Protecting the lives of infants, children and seniors from a clear threat is not a partisan issue. Solutions are clear and Congress should do all it can before another child dies.

Please take a moment (it literally just takes a few seconds) to sign the petition below:

Once you have signed it, please help spread the word to people you know.  With enough signatures we can hopefully bring some much needed attention to this issue.

Thursday, June 6, 2013

Preview of Omegaven Story.

A link to a quick preview of Dr. Nancy Snyderman's story that will air Friday on Rock Center, featuring quite possibly our favorite person in the world:

Full story airs 6/7/2013 at 10E/9C on NBC.

Wednesday, June 5, 2013

Omegaven story to run on NBC - updated date.

Just a quick note to let everyone know that the Omegaven story that Sam is part of on Rock Center with Brian Williams on NBC will air Friday June 7th at 10E/9C.  Please help spread the word that the date moved up from the 14th!!

Tuesday, May 14, 2013

A busy few weeks and more to come.

The past two weeks have been crazy busy for our family.  We had Sabrina, an associate producer for NBC news at our house for a day and a half.  Sam was ready to be taped and made a new friend.

 Deb and I got to go out for dinner and drinks with friends thanks to Uncle Todd and Aunt Tanya watching the boys.  A much needed break.  The next day we all headed to the zoo for some more fun.

On Tuesday we flew to Boston.  We were not due to be back in Boston until June but NBC wanted to get some footage of us in Boston and they were already in town interviewing Dr. Puder.  We spent some time at the hospital with the camera crew and had our monthly labs drawn. It was a long day for everyone as Sam ended up in the ER in Boston Tuesday night with an ear infection.

It was an interesting experience to watch all of the production that goes into this type of news story. Hours and hours of tape and work just to put together less than 10 minutes of television.

Deb and I were interviewed at length about Sam's entire life and our experiences over the past 5 years. Then the boys headed out to Boston Common for their own interview.

Thursday we had a free day in Boston and spent some time at the harbor.

We also spent a few hours at the New England Aquarium.

Unfortunately Sam was not feeling well on Thursday and was very fatigued.  We still managed to head out for dinner to meet up with Mallory Cyr and her boyfriend Owen.  Mallory also has MID and we have been trying to meet up with her for awhile.  She thanked us for not being weird. Apparently we are better actors than we thought.  Maybe all of this time in front of the cameras is paying off.

On the way home Ryan got to visit the cock pit and meet the the people who were going to get us home safely.  Sam looked at Ryan like he was crazy.  Airplanes are no big deal for him.

We were back home in time for mothers day.  It was nice for all 5 1/2 of the grandsons to spend the day with Grandma.  Amazing that we could get them to all be still at the same time for a picture.

Unfortunately, Sam was still not feeling well on Sunday.  He was very fatigued and was just not himself.  By Sunday night we were really starting to worry. Labs from Monday were all normal and blood cultures are still clean.  He started to perk up a little on Monday and was almost back to normal today, his first day back to school in a week.

Next weekend we will hopefully find a few minutes to rest and recharge.  I think we are booked every weekend after that until sometime at the end of summer. We are excited to get our camper out and spend some time in the woods. We are also excited to be attending the annual Oley Conference for the first time this year.  It will be a great opportunity to spend sometime with other families who deal with some of the same issues we do on a daily basis.

The Omegaven news story will air on Rock Center with Brian Williams on NBC on June 14th at 10:00E/9:00C.  Make sure to tune in and check it out.

We have also added a new facebook page to go along with this website.  We are much better at posting updates on facebook so we are hoping that will continue with the new page.

Thursday, May 2, 2013

Swimming with a central line

It's that time of year where I start to see parents of young children with central lines ask the same question over and over again on the online support groups that I participate in. "How do you swim with a central line?"

Like other parents, we were told several things that Sam could never do when he had his central line placed at just a few months old.  Two of those were swimming and taking a bath.

We struggled with both of these things.  We wanted Sam to live as normal of a life as possible.  We like to be outside in the summer.  Family trips to the pool and camping trips on the river or lake were a huge part of our life and we weren't willing do give up those things.  

Our attitude has always been that no matter what we are told Sam can't do (like live past the age of two, survive without a transplant, etc...) we find a way to do it.  We will research and try things on our own, sometimes against the advice of a physician or two, because we didn't go through everything we have in the past five years to have Sam live in a bubble.  Living life itself means taking some calculated risks.  Jumping out of an airplane may seem crazy to some people, a parachute can fail.  You could get injured or even die.  But some people are willing to take that risk to have that experience.

Swimming with a central line is similar.  For some people it is worth the risk to have that experience of being able to swim.  There are ways to minimize the risk and safeguard a central line from becoming contaminated. 

Now, with that being said, I am not a doctor and I will never tell you that it is a good idea to go against your doctors advice.  Sam's medical team does not endorse swimming with a central line.  You need to do what is comfortable to you.  Have an honest and straightforward conversation with your medical team about what you want to do. Take things slowly and try a few methods to protect the central line if swimming is something you want to try to do.  Over the last several years we have become more comfortable with this as we have had more and more success with keeping both his line and site bone dry even after swimming for several hours.

For us it started with baths.  Then the baths got deeper.  Then Sam played in a sprinkler and with a water table.  Three years ago we added a four foot deep "pop up" pool to our backyard that we could chlorinate, filter and maintain.  Once we realized that we were able to consistently keep his line and site dry we have let him go into the river where we camp for short period of time and he has also spent a few days at the beach with us. He isn't into things that don't look clean, so he really doesn't enjoy a lake or river as much as a pool. This helps because he doesn't really submerge past his waist much if he is not in a pool.  While in our pool we do not keep as close an eye on the dressing for leaks, but outside of that we check frequently and pull Sam out of the water for a replacement guard if any leaking is detected.

We tried a few different ways to cover Sam's line and this is what we have found works best for us.  We use a similar method for taking baths which allows Sam to take a LONG bath once a week.

First a bit about Sam's dressing. Sam's normal dressing is gauze and  cloth tape.  We have been through many types  of dressings in the last five years and so far this has kept Sam's site the healthiest.
At night we cover his gauze dressing with Tegaderm to keep it dry and stool free.  We use a cut down piece of the paper backing from the Tegaderm on top of the gauze so that the Tegaderm can be removed without wrecking his dressing. This is our first layer for swimming as well.  Most people use this type of dressing to cover a central line and would skip this step.  
Supplies needed for keeping a line and site dry.  We use cloth (3M Durapore) tape and Tegaderm.  We have used large (15cm X 20cm) Tegaderm but sometimes it is hard to get it stuck down with no wrinkles and using multiple smaller Tegaderm pieces is easier.  We use 2 medium (10cm X 12cm) Pieces.  You could use three or more if needed.
We take a piece of paper backing from a Tegaderm and place it on top of the first Tegaderm dressing.  This prevents the outer layer from sticking to the first Tegaderm dressing. The colored writing on this paper also bleeds really easily if it gets wet so it is a good indicator of a leak.  This is taped down to hold it in place.
We then arrange and tape down his line on top of the paper.  Using the tape to cover any "sharp" edges such as the clamp or cap will prevent it from tearing the Tegaderm and causing leaks..
We then apply the outer layer of  Tegaderm one piece at a time making sure that there are no wrinkles in the outside edges.  If there are wrinkles we remove the Tegaderm and try again.  Wrinkles on the edges will leak. We also have smaller pieces of Tegaderm that we can use on any edges that we are not 100% sure about.
The finished product.  All ready for swimming.  We have had these last all day at the water park with no leaks.  If the outer layer does start to leak we can see it right away and it can be replaced prior to the line or dressing getting wet.

If there is any moisture under the tegaderm after swimming we change the clave on the Broviac as well as the dressing.  With all of the practice we have had we very rarely even have a small leak.

Recently this abstract was shared with me which talks about how swimming with a central line affects infection rates:

Saturday, April 6, 2013

Big News And a New Video

Sam and I were in Boston this past Thursday for a regularly scheduled check up.  The appointment was uneventful and Sam and I had a pretty good day.  We also got to meet up briefly with Scott and Brad Shutka (Brad also has MID) after our appointment for a little while.

Sam's labs continue to look good each month.  He gained almost two pounds since our visit at the beginning of February.

Our next visit to Boston, in June, will include a Dexa Scan so we can check his bone density and get a bone age for him.  We have not had any issues, but it is not uncommon for kids on TPN to have bone issues.  It's standard for Boston to check this at about 5 years old.

We will also be attending the annual Oley conference in Massachusetts during the same week in June as our appointment in Boston.  We are looking forward to getting together with several other MID families and many other families with similar issues to share stories and advice.

Today I posted a new video.  This one is titled "19 hours" and follows us on one of our one day trips to Boston.

We also have some BIG NEWS to share.  Sam is potentially going to be featured on the prime time news program Rock Center with Brian Williams.  They are planning a story about Omegaven and our family was chosen to be one of the families featured.  A film crew will be in Wisconsin in the near future to interview us and the story should run on television in the next several months.  We will post the air date as soon as we find out for sure.

Saturday, March 9, 2013

What we've been up to.

Besides turning 5, we have had a busy few months.  I always think of winter as our down time, a time to catch up on rest while we hide in the house from the cold and snow.  I'm not sure why I think that though, because I don't think that has happened the last few years.

Sam and I are still traveling to Boston every eight weeks.  For about the last year we have been making these trips all in one day.

Our morning normally starts sometime between 3:30 and 4 am with a drive from Appleton to Milwaukee.  With more and more airlines pulling out of our local airport since the beginning of the recession it is just not practical or cost effective to fly direct from Appleton.  The drive takes us just over two hours.  We fly from Milwaukee to Boston and usually arrive right before lunch time.

We have our appointment at the hospital around 1, pick up a two month supply of Omegaven from the pharmacy, and then head back to the airport.  Occasionally we have a few hours to kill in the afternoon and we spend that time hanging out in the hospital lobby or the airport.

We land back in Milwaukee late in the evening and make the drive back home, normally arriving about 10:30 PM.

It's an exhausting day, but getting everything out of the way in one day has several advantages.  It is actually easier; instead of being exhausted for three days (travel day to Boston, day in Boston, travel day home) we are both wiped out for one day but then get to sleep in our own beds.  It is much less expensive; we are not staying in a hotel or checking luggage on the way to Boston.  In general it is just less disruptive to life; less days of work missed for me and less days of school missed for Sam.

At the end of February, however, I had the opportunity to combine a business trip with Sam's appointment travel.  This gave us a few extra days in the Northeast.  Our trip started out with snowstorm which prevented us from traveling when we were supposed to and shifted all of our plans to include a weekend stay.  It did give us the opportunity to meet up with some of our friends.

We were staying in Nashua, NH (about 45 minutes north of Boston) where my employer has an office.  We drove down to Mystic, CT on the weekend and met up with Scott Shutka from New York at Mystic Aquarium.  Scott's son Brad also has Microvillus Inclusion Disease and our families stay in close contact to share ideas and offer support to each other.

Brad and Sam, along with Brad's brother Jackson, had a blast at the aquarium together.

Sammy had a close encounter with a Beluga whale and for days only talked about the "Booger Whale" to everyone who would listen. 
Jackson and Sam really hit it off, which was a relief because the last time we spent some time with the Shutka family I think Sam terrorized Jackson. 
You would have thought these two are professional comedians they way they were hamming it up after dinner. 

The next day Sam and I make a quick trip up to Maine to meet Anna Cyr. Anna's adult daughters are both affected by Microvillus Inclusion Disease.  Mallory is currently living and going to school in Boston and Maisy is studying abroad in London.  What an inspiration their family has been for us over the last few years!
Sam also got to spend some time at the office with me and made everyone at our New Hampshire location fall in love with him.

So, besides traveling, what else have we been up to that has prevented us from updating regularly?  Well the holidays were a busy time.  Four Christmas celebrations were enough for me.  Of course the holidays always makes us reflect on how lucky we are to have Sam home with us. We have been so fortunate to have spent so little time in the hospital this last year.

 Our elf had a naughty streak in him this year and even pooped on Sam's pillow one night...

Ryan's school held a fundraiser for Sam and raised $500 selling candy canes for $0.25 each!!

 Speaking of fundraisers, the Kaukauna High School Civic Engagement group had another fundraiser for Sam at Halloween.

 Sam went to the school to deliver a thank you card personally thank them for all of the hard work they putting into raising money to help him contine to travel to Boston.

 We have spent a few snowy days this winter at the Building For Kids in Appleton.  Sam never tires of the firetruck.

We also had cousins Everett and Harrison spend a few days with us, and everyone enjoyed camping out on the floor.

Uncle Todd and Aunt Tanya treated us to a trip to the Shrine Circus when we returned their children unscathed.  This was the first trip to the circus for both Sam and Ryan.

Sam REALLY loved the motorcycle stunts.  I literally have never seen him so excited in his entire life.  He tends to have an attraction to danger, so I am pretty sure we are headed for trouble there.

Sam also got to see, and was amazed by, his first 3D movie

I could go on for hours, but really you get the picture.  There is never a dull moment and we are just busy enjoying time as a family.  One last thing though is this...

 Sam and Ryan have started taking Jiu Jitsu.  Ryan started first and I was a little hesitant to let Sam because of his central line, but he really seems to enjoy himself and hopefully it will help teach him some discipline.

Our little warrior.