Wednesday, October 29, 2008

A Quiet Week

Actually, it has been almost two weeks since Sam's benefit, but who's counting days or weeks?

We wanted to thank everyone who made it out to Sam's benefit on the 18th. We all had a great time being able to be out and about, Sam and Ryan both had a terrific time.

Sam is doing well. We have been working with Physical Therapy on trying to get him to keep making progress with his development. This week he has really gotten the hang of rolling over, which can be a little frustrating when we are trying to get him to have some tummy time. All in all, considering his adjusted age and the amount of time he spent in the hospital he is doing very well developmentally.

Sam's weight gain has slowed to a crawl, actually stopped, but we are told that this is normal after such big gains previously and not to be concerned yet.

We are preparing for our clinic visit in Boston on November 13th. It is a little scary to go back. Our biggest fear is that he will get sick or something will go wrong while we are out there and then we will be stuck there until he is discharged. At least we know he will be well taken care of in the event anything does go wrong while in Boston.

The last few weeks have also been a little sad as Ally, one of the stories we have been following, passed away unexpectedly on October 13th. Her funeral was the same day as Sam's Benefit. Ally had many struggles in her life and she was a very strong little girl.

Another little girl, Emerson, has been in very rough shape over the last few weeks. We keep checking her website everyday hoping for good news. If you have a spare moment, please visit her site and leave a guestbook message. Her family is struggling and the guestbook messages mean a great deal, we know from experience.

Sam's good health is starting to scare us. We hope that there is not some "health bank" that we are building up interest in. We are always expecting the dreaded hospital stays and when they don't come we worry that we may be building up for something big...

Sunday, October 19, 2008

A Message To Our Families and Friends

Sam’s Benefit on Saturday was a huge success and so much fun, we will post details and our thoughts on the benefit later this week. For today we just wanted to share with the world a message that we sent to our family and friends:

Dear Family and Friends:

E-mail may not be the most personal way to convey this message, but it was important to us that we get this message to you without delay and we can not always predict from day to day where we will be or what will be going on…

In the past seven months we have experienced something that no parent ever expects to experience. Having a child with serious medical issues is something that happens to someone else, a friend of a friend, someone who knows someone. We have had so many highs and lows since Sam was born that it is hard now to try to go back and even think about the range of emotions we have experienced. Many of our plans for the future have been altered, but we can not say that our lives have changed for the worse.

When Sam was diagnosed with Microvillus Inclusion Disease in May we were given several “facts”. We were told that our only option was to visit transplant centers and to get Sam on a transplant list, If we didn’t do this Sam’s TPN nutrition would continue to destroy his liver and we would need a new liver anyway. Sam’s liver disease was progressing at a rate that would have required a transplant within 6 to 9 months in order for him to survive. We were also told that the likelihood of finding a donor was slim. It is hard to locate a donor of Sam’s size with healthy organs. Then we were given the statistics regarding transplant survival. The mean lifespan after transplant is two years. Two long, agonizing years filled with worry about rejection, long recovery periods, suppressed immune systems, and many unknowns. As we prepared to take Sam home, we were also preparing to watch our son slowly get to a point where his body would no longer be able to sustain him. We lied to our families. We could not bear to tell our parents that their grandson most likely would not survive to the age of one. We had grieved for Sam weeks ago, before he was diagnosed, convinced that he was not ever going to leave the hospital and were just happy to be able to take him home, even if it was for a very challenging and very abbreviated life. At least we finally had an answer about what was wrong with Sam.

With our decision to go to Boston we have also faced many challenges. At every roadblock we just fought harder and the challenges and strain on our family has been worth it. Omegaven has done for Sam what it has done for so many other children and essentially changed the entire outlook for his life. Currently Sam’s prognosis is very good. Barring any unforeseen complications Sam will be able to live a very full, normal life. He will most likely have to carry his TPN pack with him for 18 to 20 hours a day, but he will be otherwise healthy, happy, able to attend school, be able to play with his brother, make friends, graduate from high school, go to college, become rich and famous. Our hope is that someday medical technology will be able to offer him an alternative to carrying his pack. Transplants are becoming more commonplace and in ten or fifteen years the prognosis for these patients could improve dramatically. Just 5 years ago the prognosis post transplant was much worse than it is today. Our goal is to keep Sam healthy long enough for him to be part of a decision someday to continue to live on TPN or try for a transplant when the time is right for him. Whatever his decision may be at that point in his life we will support him even if we are too afraid of losing him to agree with him.

We could not do what we are doing for Sam without the support of our friends and families.

When Sam was born we were in the middle of buying our house. We had so much work to do before we could move in. Some of you spent hours and days in Appleton with us helping to clean, paint, rip out carpet, etc… We never could have had the house ready to move into in time without your help.

When we were ready to move many of your came to Appleton to help us. We were overwhelmed by the number of people that showed up to help and moved everything we own in a matter of just a few hours. It would have taken us days without your help.

Many times over the last seven and a half months we simply could not have Ryan with us. He spent so much time with Grandma and Gramps that we think he started to think he was never coming home. At times Grandma and Gramps could not watch him and there was always someone willing to step up and take him for a few hours. He never could have made it through this experience as well as he did without your help.

Since the day Sam became ill we have received many emails and messages in our guest book. Most days we could not even respond to most of the messages that we received because the volume was simply too high. We have read and saved every one of these. Many times they were the only thing that got us through the day. We have also had a wealth of moral support through phone calls and visitors. We could not have kept our sanity without your help.

Sam’s benefit was amazing and overwhelming. Over $30,000 was raised so that we can continue to provide Omegaven to Sam. This will allow us to pay for all of the expenses that we incurred for his initial trip and there will be money left to use for future trips. So many of you put in hours and hours of work into making the benefit such a success. We had so much fun on Saturday that even if we hadn’t raised a single cent we still would have called the day a success. We could not have saved Sam’s life without your help.

We want to let each and every one of you know that no matter what your role has been in the past months, big or small, that we appreciate every one of you and the effort you have put in to help us out when it was needed. Your acts have been selfless and we will never be able to say Thank You enough. There are no words that can accurately express our gratitude for everything that has been done to help Sam and our family through some very difficult times.

Earlier in this rather long winded message we mentioned that “Many of our plans for the future have been altered, but we can not say that our lives have changed for the worse”. How can we say that our lives have not changed for the worse? Don’t we realize the immense challenges and struggles that we may still face? Did we forget that the amount of care Sam still needs is tremendous? Did we overlook the fact that many things we took for granted before now require detailed preparation - even for something as simple as leaving the house to go grocery shopping?

There are challenges and stresses in our life everyday that most people will never have to deal with. We have come into contact with so many families that have it much worse than we do. Their challenges are greater, or their support structure is not as good, or they are just closed minded and not willing to explore options that don’t come from their physician. Our hearts ache for all of those families, yet we follow their stories because it reminds us everyday that no matter how bad things seem, they could be worse.

We have also experienced the good that Sam has brought into our lives. Our family is stronger. We cherish our time with our children more. We cherish the time we get to spend with our families more. We tend to let little things bother us less than we used too. We have gotten to see family members that we normally only see at holidays, weddings, and funerals for no reason other than to visit. Ryan has gotten to know many of Jason’s cousins children better than he ever would have been able to before and loves to spend time with all of them. We have watched our families and friends come together to do something great. We have gotten closer to those family members as well and without Sam we most likely would have missed that opportunity.

So something good has come out of our struggles. We appreciate what Sam has brought to our lives we appreciate all of you. We are so happy to have all of you in our lives. Don’t let anger or petty squabbles keep you from enjoying your family or end friendships, you never know when you will need that person in your life. Life is far too short to be stay angry. Make an effort to make amends with someone you are angry with and make an effort to spend more time with your family in honor of Sam and the good he has brought to our family.

Thank you again to each and every one of you for everything you have done for us and helping to give Sam a brighter future.

With Love,

Jason & Deb

Sunday, October 12, 2008

Sam Becomes Big News

Sam was featured on the front page of the local newspaper in Fond du Lac, WI this morning. Here is a link to the article:

I think the article is available online for only a few days, but I will get a copy posted onto Sam's site as soon as I get a chance.

Not much else new over the last week. We have developed a plan to get rid of our current double diapering and are testing right now. Hopefully in another week we can cut our diaper usage in half.

Sam is becoming more mobile and scoots himself around to reach toys that he wants. He has also taken a great interest in the line between his port and his TPN bag so we are trying to be very careful to keep it out of his reach.

Deb returned to work this week on a very part time basis. She is hoping to work back up to about 30 hours a week eventually. We are still working through how to make this work but we will manage somehow.

We are also preparing for a visit from Oma and Opa who are traveling to Wisconsin this week to attend Sam's Benefit. Preparations for the benefit are in full swing. Putting this together has been a lot of work for everyone involved and we are looking forward to spending the day celebrating all that Sam has accomplished.

Monday, October 6, 2008

Sam's weekly labs today show that his direct bilirubin has dropped to <0.1 (which means pretty close to zero)! The normal range for this would be 0 to 0.4. When we first arrived in Boston Sam’s direct bilirubin was just below 8. Overall the rest of his labs continue to look good as well, we still want to see his liver enzymes come down a little more.

There is not much else to share as our lives have been simple and excitement free for the last several days. Sam continues to be happy and healthy. We're still tired, Sam still requires a great deal of energy and attention, but it is nice to go to sleep at the end of each day with our whole family sleeping peacefully under one roof.

Thursday, October 2, 2008

A Surreal Experience

Today I took Ryan to the doctor for his 4 year check up and a flu shot. Every time they asked me a question about Ryan I would have to stop and think about my answer because my Sam answers are so hard wired into my brain. It was the strangest feeling to be talking to a doctor and not be having a conversation about Sam.

Sam hit 12 pounds today! He is doing well on the antibiotic and we have not experienced the drastic increase in his output that we were expecting.

We attended the NICU monthly pizza part tonight. It was good to see familiar faces again and it is always nice to see a wide range of kids who were in the NICU for one reason or another doing so well. It will most likely be the last one we will be attending until spring due to RSV season being right around the corner. That is the last thing we need right now.

I know that there are people from all over who read Sam's journal. If anyone out there is in the Shakopee, MN area we encourage you to attend a benefit for the family of Sydney Markie. Sydney was also diagnosed with Microvillus Inclusion Disease and lost her battle on July 22, 2008 after receiving a multi visceral transplant in Miami. More information on the benefit for her family can be found at:

Our friend Carter is still continuing to struggle in Boston. Please continue to keep your thoughts and prayers with Carter and his family:

If you don't see a post here far awhile, don't panic. No news is good news and we are hoping for a few days of no news.