What's New?

It's been quite awhile since we've done a full update.  Although we post frequently on Facebook, we don't go into a lot of detail on there.  We have made some big changes, and there has been quite a bit going on over the last 8 months or so.

Since our last full blog post, Sam has faced quite a few challenges.  His cyclic vomiting has been regular, frequent, and debilitating.  We are almost at the end of 2nd grade, and Sam has missed approximately 55 days of school this year.

It's been a rough year.  I would even go so far as to say that it has been the most challenging and stressful year that we have had since Sam was born.  Sam's mom had gone back to work full time when Sam started full days of school. With so many issues going on and with Sam being out of school as often as he has, we had to make the difficult decision to have Deb go back to working part time in the evenings so that she was available to be home with Sam when he was ill and be available to support Sam while he was in school.  His interest level in school has really been a challenge this year.

With school being such a challenge, we have decided to remove Sam from his current school beginning next year.  Both of our boys have attended a dual language immersion program since kindergarten.  With the amount of school Sam has missed he was really struggling with Spanish.  They move so fast with vocabulary that there was just no way he could stay caught up.  This let him feeling lost in Spanish and added to his anxiety and dislike of school.  This was a really difficult decision for us to make as it was such a good opportunity for him.  In the long run though, it will be better for him to be able to focus on learning in English which makes it easier for us to help him with make up work.  His school has been extremely supportive and we will really miss being involved with our districts bilingual program, but we are excited to have Sam hopefully be more successful and happy next year.

Our frequent trips to Boston have also begun to catch up with us as well.  For 8 years we have been making regular trips to Boston for medical care.  They have done a fabulous job of managing Sam's medical care and it is difficult to imagine that we could find another team that is as knowledgeable and as easy to work with.

But there has been a cost to having them manage his care besides the financial cost, the missed days of school and work, and the stress of frequent air travel on Sam and I. Boston has struggled to find a cause or treat Sam's frequent cyclic vomiting.  This is partly because it wasn't like we could just make a quick appointment with another specialty in Boston when needed.  Trying to have them manage his care, but using specialists in Wisconsin was not working the best. as there always seemed to be a break down in communication and we just weren't progressing fast enough.

This was also a challenge when we had other issues in between our regular appointments in Boston as we were relying on our team in Madison.  They weren't as familiar with Sam's care and weren't managing his TPN.  It made for a lot of confusion when we needed to be inpatient and added another layer of stress.

With everything that is going on, we have made the decision to discontinue our trips to Boston and allow our doctors at American Family Children's Hospital in Madison to take over Sam's care.  This was an agonizing decision to make especially because it means moving away from the hospital that saved his life when Children's Hospital of Wisconsin gave us a bleak outlook and mediocre care. There is also the fact that Boston Children's Hospital is providing our Omegaven. That is frustrating as well as it has been three years since we shared our story on NBC and there really has been little to no progress on getting Omegaven approved by the FDA.

So far the transition looks promising.  We are aggressively trying to rule out causes of Sam's vomiting.  Now, instead of just having Gastroenterology make the call and try medications that we hope will help, we  have several teams of specialists helping us.  Neurology, Urology, Neurology, Endocrinology, and Gastroenterology are all running tests and monitoring Sam's labs to try to come up with something that will get him some relief.  We have an awesome new Intestinal Failure team as well that is managing Sam's TPN.

American Family Children's Hospital has committed to bringing Omegaven to Wisconsin for Sam.  We are hopeful that this works out.  This is a little nerve wracking as, once we finish using our supply of Omegaven from Boston, if they aren't ready to provide it for us we will be left with no choice but to have Sam go back on Intralipid.

This sounds scarier than it really is.  Yes, this is the lipid that was killing him  years ago.  Sam is older, bigger, healthier, and stronger now.  If we have to go this route hopefully his liver will tolerate it better now.  This has happened with other kids who went back to Intralipid, so it is more than possible.  It is definitively not what we prefer - but the worse case scenario ends with us being back in Boston.

In other news, Sam had to have a new central line put in this week.  His line that was placed in Boston in late 2015 has been an issue almost since it was placed.  In the past we have dealt with trying to keep the exit site of his line intact and healthy.  Go figure that we finally manage this and Sam throws us a curve ball.

We were inpatient for a few days earlier in the year because there was an area close to Sam's clavicle that began to look puffy.  This was an area where his central line tunneled under the skin.  An ultrasound showed some fluid under the skin but it never really looked infected.  It subsided and they decided we should take a wait and see approach.  We never want to pull a line unless absolutely necessary as there are limited veins that these types of lines can be placed in.  With the multiple replacements we have had to have over the years we are always at risk of losing the ability to reuse those spots.

This area came and went a few times, but last week he developed what looked like a blister over this area which kept getting larger.  Our surgeon was no longer comfortable leaving the line in and we had it replaced on Thursday.

The old line was a mess and the decision to remove it was a good one.  Even though his exit site was healthy, there was infected fluid and granulation tissue throughout the tunnel of his line.  This was most like caused by contamination when the line was placed.

As frustrating as it is to have to replace this line, we did get some good news.  When Sam was an infant he had a line in his right jugular.  When they removed that line due to infection the surgeon tied off the vein.  We didn't find this out until a few years later.  This is a very old school way of thinking and especially not something that should be done on someone who is going to be on TPN long term because it essentially eliminates that vein being used for a line placement ever again.  In Sam's case enough of a "nub" has grown off of the vein that they were actually able to use it for this line placement.  This is a result of our surgeon being super thorough and utilizing Interventional  Radiology to help him identify the best possible location before starting the surgery.

So now you are all up to date.  A lot of good change going on that will hopefully allow Sam to have less stress, feel better, and spend more time being a kid.

"Family" Reunion

Recently our family traveled together to spend a few days in Gloucester, MA ahead of a regularly scheduled appointment in Boston.  We shared a house with four other families made up of some of the most amazing people in the world.

When you look at this group of people, they don't have much in common.  They all have different political views, differing religious beliefs, come from different professions, and have varying heritages. None of them live in the same state as one another, in fact, they don't even all live in the same region of the country.

A stranger walking into our group would have thought we were having  a family reunion or were friends who had known each other since childhood.

All of these families are living with Microvillus Inclusion Disease.

I don't mean that someone in each of these families has a horrible, incurable, life threatening, disease though.  I mean that these families live life to the fullest every single way they can.  They have bucked the conventional thinking that MID is a death sentence or something that you "suffer" from.

We spent that weekend living.  Having fun.  Laughing at each other and ourselves. We may also have consumed copious amounts of food and alcohol - but what happens in Gloucester, stays in Gloucester.

Sometimes the conversations turned serious.  We talked about challenges, disappointments, and frustrations we have experienced.  But these were sidenotes and not what anyone will remember about that weekend.

Many of us have children who we were told would never live to the age of 2, and that we were fooling ourselves by thinking there was an alternative to having a transplant with poor long-tern survival rates.  We were told that you can not have quality of life and live long term on TPN.

We have learned through experience and from each other that this is not the case.  We are not fighting a disease, but fighting to make sure that our children see past  it and know it doesn't control their lives.

We want to thank them all for sharing their lives with us and being the awesome people they are. They truly know how to Dream Big, Live Life!

Long Time, No Post.

It's been awhile since we posted here.  If you don't follow us on facebook, you can view our recent posts to Sam's facebook on the right side of this page.

We have been busy, busy, busy and are getting ready to head back to school next week.

Sam and I just got back from Boston today and we head to Georgia the day after tomorrow to day spend a few days with Oma.  Last week Sam's Opa passed away and we will be celebrating his life this coming Saturday.

http://www.legacy.com/obituaries/augustachronicle/obituary.aspx?pid=172250049

Thanks for checking in on us!  Hopefully once things settle down I can sit down and do a bigger update on everything that is going on with Sam.
 

Wait, how do I get this all home?

I have had a few people ask how we manage to transport our Omegaven home to Wisconsin from Boston.  It can be challenging because it is rather important to get it all back home in one piece.

For some perspective, this is a box of Omegaven.  It contains (10) 100ml bottles of white liquid gold. Did I mention the bottles are glass?  Because they are.  And they break.  When they break they are useless and they don't smell all that great.  Each box weighs about 5 pounds.

If you are starting out using Omegaven with an infant, you will probably be using one of these bottles each day.  That means carrying back home with you about 60 bottles, or 6 boxes.

In Boston they will dispense your Omegaven from the pharmacy.  You will get it in these nice sturdy paper bags, normally double bagged with three boxes in each bag.  So each bag is going to weigh about 15 pounds.  Unfortunately carrying one of these paper bags with 15 pounds in it for more than about 10 minutes will mean that you will lose all circulation in your fingers. 

With this amount of Omegaven you can easily carry it onto a plane and put it under the seat in front of you or in the overhead bin.  Unless your fingers have fallen off by the time you manage to carry these all the way through the airport to your gate.

If this works for you, great! You need read no further. I do have to warn you though, now that your child is using Omegaven the likelihood of them growing and gaining weight is pretty high.  Hopefully your child is using Omegaven short term to give their gut time to adapt and grow and you will be lucky enough to be able to stop using Omegaven before those boxes start multiplying like rabbits.

If you are in for the long haul like us, at some point your child will weigh over 10 kilograms and need a second bottle each day.

Then eventually this will happen and you will be sitting on the curb in front of the hospital with no fingers crying in agony.

Shipping all of this is an option, but you still need to get it all out of the hospital and down the street to the UPS store. With no fingers.  Even when you only have 12 boxes the shipping charge to get it back home is going to be horrendous.  And there is no guarantee that the UPS driver isn't going to play kick ball with your cartons and leave a giant pile of wet cardboard on your front porch that smells like rotting dead fish.  Believe me, it isn't pleasant.

Lucky for you though, you are reading this blog post and we can show you the easiest way we have found to get all of this home.

First, invest in a sturdy folding hand cart.  These can be found at many home improvement stores, I think I recently saw a similar one in Walmart.

 These are lightweight and easy to carry.  They fit under the seat on some planes, but have to go in the overhead on others. Unfolded they are a full size hand cart.  It is also handy to bring along a few bungee cords.

To stay under the checked bag weigh limit you will need 1 container for every 6 boxes of Omegaven you are transporting.  I do not recommend using cardboard boxes as the baggage handlers sometimes have kick ball tournaments with the UPS drivers.  The only thing worse than the front porch scenario from above is when that stinky wet box is on the baggage carousel and you have to haul it back to your car. We found these coolers at a local store for much cheaper than from Coleman directly.  They are the perfect size and relatively inexpensive.  They are also a lot harder to crush than a cardboard box.

http://www.coleman.com/product/48-can-party-stacker-cooler-red/3000000481?contextCategory=8516#.U_y_zfldWSo

We check these on the way to Boston, basically empty except for a bunch of bubble wrap.  When we pick up our Omegaven from the pharmacy we transfer it to these coolers right away to make getting it around the hospital a lot simpler.

Stick three boxes on the bottom of the cooler.

Pack all around all four sides with bubble wrap.

Add a second layer of boxes on top of the first row and pack bubble wrap all around them as well.  You can use the now empty paper bags as extra packing material. 

Put a layer of bubble wrap or paper bags over the top. Place the lid on the cooler and secure the whole thing closed with a heavy duty luggage strap.

You can then stack the coolers on your cart, add a bungee cord if you have one to secure it and wheel to wherever you need to go next.  We check these as baggage and have not had a broken bottle yet this way.  I also still have all 10 of my fingers after 6 years and 36 trips to Boston.

A long week

It's been a long week, we ended up being inpatient a week early due to a bloodstream infection. Sam came home Monday and we headed back into the hospital yesterday.

Sam's gallbladder removal went fine and we have a brand new central line. Sam has been in some pain off and on since surgery, but he is doing OK.  I will post a longer update once we get home.

Upcoming Surgery

Sam will be headed into the hospital next Thursday, the 13th, to have his gallbladder removed and have his central line rewired to a new exit site. If all goes well, we should e home late Friday. If you would like to send a "get well" card, they can be addressed to:

Sam O'Connor
PO Box 7407
Appleton, WI 54912-7407

Sam loves to open mail!!

Looking back at 2013

We had quite the year in 2013, view the video about our year below:

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.

http://www.samoconnor.com/p/hope-is-strength.html
Thank you to everyone who ahs ordered and helped spread the word!

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.

http://www.samoconnor.com/p/hope-is-strength.html

Thank You for supporting Sam!!

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 Change.org 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:

http://www.change.org/petitions/the-fda-change-compassionate-use-guidelines-to-expand-access-for-omegaven-2

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.

Welcome

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 info@samoconnor.com.

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

http://rockcenter.nbcnews.com/_news/2013/06/07/18833434-drug-treatment-omegaven-that-could-save-infants-lives-not-yet-approved-by-fda?lite

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

http://www.samoconnor.com/2013/06/we-need-your-help.html

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.

http://www.fda.gov/drugs/drugsafety/drugshortages/ucm050792.htm

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. 

http://www.washingtonian.com/articles/people/children-are-dying/

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?

http://news.yahoo.com/lyme-disease-drug-shortage-prompts-nationwide-worries-171800552.html

or Cancer?

http://www.onclive.com/conference-coverage/asco-2013/Most-Oncologists-Say-Drug-Shortages-Are-Affecting-Treatment-Decisions-Three-Surveys-Find

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:

http://news.yahoo.com/decades-old-anti-bacterial-soap-safe-163623053.html

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.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm354272.htm

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:

https://www.change.org/petitions/senator-tom-harkin-ia-and-representative-fred-upton-mi-compel-fda-to-end-iv-drug-shortages-now

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.

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:

http://rockcenter.nbcnews.com/_news/2013/06/06/18802911-why-cant-more-babies-get-life-saving-new-drug-treatment-omegaven?lite

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

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!!

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.

Dream Big, Live Life on facebook.