Wednesday, October 19, 2011

The Waksmunski Family: I am going to Change the World

The Waksmunski Family: I am going to Change the World: I thought that I would share a conversation that I just had with my 4 year old, Jesse. This conversation took place literally minutes ago, ...

I am going to Change the World

I thought that I would share a conversation that I just had with my 4 year old, Jesse.
This conversation took place literally minutes ago, few minutes past midnight.   I thought I heard him still awake in his room and thought I would go in to check on him.  As I walk in he sits up and looks at me.
Me – “hey buddy, are you OK?”
Jesse – “yes, are you OK?”
Me – ‘I am, does your stomach hurt?”
Jesse – “no, does your stomach hurt?”
Me – “No, why are you awake? Can’t you fall asleep?”
Jesse – “No Papa, I can’t fall asleep.  I am having a hard time.”
Me – “Why? What’s wrong?”
Jesse – “I am thinking about how I am going to change the world”
Me – “How do you think you will do that?”
Jesse – “With my super powers and I don’t think it is working”
Me – “Don’t worry buddy, one day you will change the world”
Jesse – “Really?”
With that he put his head down on his pillow as says “Oh good”
“Good Night Papa”
“Good Night Buddy”

Saturday, October 8, 2011

The Waksmunski Family: "Words Do Matter"

The Waksmunski Family: "Words Do Matter": It was almost one year ago when I wrote the blog “I was Tested …. and Failed”. I was on a business trip in Toronto and while engaged in co...

"Words Do Matter"

It was almost one year ago when I wrote the blog “I was Tested …. and Failed”.  I was on a business trip in Toronto and while engaged in conversation with another traveler, I heard him say the word “retard”.  I was disappointed with myself because I didn’t say or do anything.  I promised myself afterwards that I would never allow this to happen again.
Since then, when I hear the R-Word, I speak up.  I have had the opportunity to speak with co-workers, friends, called a radio station after hearing the word on air and even called a MLB Baseball team after hearing a ballplayer use the word.  If you say it and I hear it, I am going to say something.  This vow that I made to eliminate the word also brought me to a one on one meeting with PA House of Representative Doyle Heffley earlier this year.  I believed, and still do, that the langue in PA of MHMR, Mental Health and Mental Retardation, needed to be changed.  I wanted Representative Heffley to know that while we needed and appreciated the services that the state provided for both Shane and Wyatt, I was having a difficult time with the R-Word being included with the services provided.
This morning, I received a letter from Representative Heffley informing me that he was wholeheartedly supporting PA Senate Bill 458, which amends the Public Health and Welfare Act to change the wording of mental retardation to intellectual disability.  This bill unanimously passed in the Human Services Committee meeting on Wednesday, October 5th and is expect to move right along.   I am thrilled that this word will no longer be included in the name of the department that provides services to my boys and to so many others.
I would like to personally thank Senator Dinniman for introducing this bill and Representative Doyle Heffley for not only remembering Shane and Wyatt but for taking the time to meet with me and for supporting this bill. 

Friday, August 12, 2011

The Waksmunski Family: Chapter 4 - Counting on each Other

The Waksmunski Family: Chapter 4 - Counting on each Other: "The Times news has been part of our family since the birth of Shane and Wyatt. In yesterday edition of the paper this story was published, ..."

Chapter 4 - Counting on each Other

The Times news has been part of our family since the birth of Shane and Wyatt.  In yesterday edition of the paper this story was published, Chapter 4 which speaks to Mom and Dad's releationship and how we deal with the stress of raising two kids with special needs.  I hope others find some of the advice offered helpful.  Enjoy!

Monday, July 18, 2011

Work, Play and Milk

Every Monday, I can usually be found at home in my office answering emails, on conference calls or working on project.  I office from home and my wife knows that while I am in the house, I am busy and can’t be disturbed unless there is an emergency.  If I haven’t been seen in awhile she will make me something to eat which I appreciate.
Today, Jesse had one thing on his mind and that was to play with his Papa.  Every opportunity he had, he asked, “Papa, wanna play with me?”  I was so busy today and after I finished with my office day I needed to travel and for a meeting tomorrow in Boston.  It was a crazy day.  Then it happened, in attempted to buy some space and finish, I made a promise to Jesse.  It was just before 3pm and I had a conference call at three that was very important.  I told him that I needed to take a call and when I finished, I would play with him.  His reply was simply “OK Papa.”
My call lasted about an hour.  I remember at one point during the call thinking how quiet it was outside the closed door.  Then the call ended and I said “Good Bye” and at that exact moment, the office door flew open.  There was Jesse.  I said, “Hey buddy, what’s going on?”  He replied, “Papa, I was “considering” you.”  I knew what he meant and thanked him.
“Are we going to play now?”  Well, I made a promise and was not about to break it and proclaimed that it was Playtime.  I told him that I would meet him in his room but first needed to check on Mommy to make sure she was OK.  This is when I found out that Jesse sat outside my office door, listening and waiting to hear the words “Good Bye” signaling the end of my call and the start of our playtime.  He waited and was very “considering” (considerate). 
Playtime was a blast and I bet everyone heard us downstairs.  We were laughing and just having fun.  After awhile, I told him that I had to leave for work.  Jesse asked me, “Do we need money?”  I told him that I work so that we could have money.  I told him that I work so that we could live in our house and so that he could have all the toys he has to play with.  Jesse just sat there looking at me with a real serious look on his face and asked, “Papa, do you work so that I will have milk to drink?”
With a smile and holding back tears, I answered, “Yes Buddy, I work so that you have milk to drink.”
After hearing this, Jesse got up and walked over to me, and gave me a hug and kiss.
Obviously, there are many reasons why I have to work but for Jesse, I guess it means he will have his milk. 

Sunday, July 3, 2011

Shane and Wyatt’s Award Winning Story

The Times News has been with us documenting Shane and Wyatt’s journey from shortly after their birth on March 6, 2010.  A few weeks ago Karen Cimms and Amy Miller, both writers with the Times News won First Place in the Pennsylvania Associated Press Awards; one for Enterprise Reporting and one for Features.  Karen was also awarded Second place for Series Writing by the Pennsylvania Women’s Press Association, Best of the Best Awards in the Daily News Writing Category.  Not to be left out, Bob Ford, Photographer, with the Times News was awarded Second Place from PAPME, Pennsylvania Associated Press Managing Editors Awards in Photo Story.  We are so proud of the work they have done and are thrilled with their awards on this story.  The story, “Down Syndrome – A Family’s Journey” can be viewed at: 
Our relationship with the Times News began shortly after Shane and Wyatt were born when I meet with Karen to explore the idea of sharing our journey.  I think she was interested and took the idea back to her Editor and Publisher. At the time, I only had a few nonnegotiable items and they were, be honest and accurate in reporting the story, educate others about the issues or medical conditions and advocate support for those who were also dealing with stressful medical issues.  I believe we have hit the mark with the chapters already written and will continue to do so in the chapters still to come.
Recently, Shane and Wyatt had the opportunity to visit the Times News in person and as a family we thanked some of the people responsible for helping us document this journey.  I want to again thank Fred Masenheimer, Publisher, and Bob Urban, Editor in Chief for all your support, a few extra papers and for making “Down Syndrome – A Family’s Journey” a permanent link for all those who visit the Times News web page.  Also, thank you to Dave Rowe, Graphic Designer, for making the story look so good in print and Len Alabovitz, Plant Manager, who  manages the press and for making sure the extra papers found their way to us.  Amy Miller had the responsibility for writing about the medical issues and procedures for the story.  Thanks Amy for interviewing the doctors and surgeons, even if when I was late in providing you their names and contact information.   I also hope you learned a thing or two about G-Tubes and Fundoplication Surgery.   
Thanks again to Karen for putting our thoughts and experiences through this journey on paper.  You are a part of our family now and we appreciate all the work you have put into documenting this for us.  I only have one question for you, “Why did your interviews with me last about 15 minutes and your interviews with Mary would run for hours?”  I guess you enjoyed her conversation better than mine?  LOL.  Bob, Thank you again for photographing the journey.  I know most of the photo’s you take will never be seen in print but we appreciate you spending so much time with us either at the hospital, Buddy Walk, Shane & Wyatt’s Christening or just around the house documenting a normal day.  Also, not a day passes without Jesse asking about you, as he says “Bob is MY friend.”
Thank You to the Times News and for being a part of “A Family’s Journey”.

Saturday, June 4, 2011

You can be part of a Miracle

This Monday, June 6th, Shane and Wyatt will turn 15 months old.  (This Monday just happens to be my birthday as well and before you ask…. 47).
I am writing this because I am asking for your help while so many other children NEED your help.  Right now through tomorrow, Sunday June 5th at 6pm, The Janet Weis Children’s Hospital at Geisinger is holding its annual telethon.  I am asking that you please make a donation in honor of my sons, Shane and Wyatt Waksmunski.  My boys, and especially Wyatt, are miracle babies and this is your chance to be part of a miracle as well.
Both boys were born on March 6th, 2010 and were born ten weeks early.  Both have spent so many days, weeks and months in the hospital during the past 15 months.  Both Shane and Wyatt, still today are fed daily by a machine through a feeding tube, both have struggled through surgeries, infections and have had so many setbacks since birth that I have lost count.  Yet, through all the challenges and obstacles, their will to live has been truly inspirational.  However, that will alone isn’t enough and without The Janet Weis Children’s Hospital, they would not be here today.
Today there are currently 81 children in the hospital and Wyatt is one of them. A few months ago we shocked to discover that he was born without a diaphragm on his left side.  Wyatt is currently in PICU (Pediatric Intensive Care Unit) after his third surgery on his diaphragm in the past few months.  His recovery is taking a little longer than we were hoping for but “Super Wy” continues to fight and is improving on his timetable.  As if surgery wasn’t enough, he is also in isolation as he is suspected to have a virus.   
Let me ask you, if your child was sick, wouldn’t you do everything in your power to help them, no matter what?  I have been living everyday of the past 15 months with this exact thought.  I will do anything and everything to provide for my boys.  This also includes raising money for the Janet Weis Children’s Hospital and the Children’s Miracle Network.  I believe in the miracles and I believe in what they have been able to do for my kids. 
Even the smallest donation can make the biggest difference.  Your donation will help Wyatt, my boys, the 80 other children in the hospital and all those who will come after us.  Shane and Wyatt are Miracle Children and with your donation YOU will be part of the miracle as well.
Please make a donation by calling 1-800-322-5437 or by visiting  Please make your donation in honor of Shane and Wyatt Waksmunski, PO Box 214, Lehighton PA  18235.  (The address is so that they will send us a card telling us about your donation). 
Also, if you live in the viewing area of WYOU, central and NE PA, I will be appearing live on the telethon on Sunday, June 5th at 1:30pm to present a check that will represent the donations made during the past year in honor of Shane and Wyatt.  We raised almost $2500.  THANK YOU!!!
Again, thank you for your support and your donation.

Thursday, April 21, 2011

Wyatt is Back in the Hospital

Here we go again.  Back in January, while in surgery, surgeons discovered that Wyatt was missing the left side of his diaphragm.  A new diaphragm was constructed and attached.   We all thought finally that this is could be the last of the major medical issues for Wyatt.  Well, if nothing else, the last year has taught us to take one day at a time and to not look to far ahead.  We have also learned that sometimes we need to take the day hour by hour even when all looks good because with Shane and Wyatt, things can change quickly.
A few weeks ago, we started to see a change in Wyatt again.  Both kids were sick and Shane even spent a week in the hospital with a high fever and a UTI.  Wyatt never really became as sick as Shane but all along we knew he just wasn’t himself.  Then he became constipated and this caused much stress for the poor guy.  After five days we finally got his bowels moving again and finally some relief.  This was short lived as this past weekend Wyatt appeared to be constipated again.  On Wednesday, Wyatt and Shane both came to Geisinger Medical Center to see their GI Doctor.  During this visit, at the request (demanding!?!) of mom an x-ray was ordered for Wyatt.  Mary knew Wyatt wasn’t himself and knew there was something more than a cold or stomach virus making him unhappy.  BINGO!!  Wyatt has bowel up in his chest cavity and it appears that his diaphragm detached and he was immediately admitted into the Janet Weis Children’s Hospital @ Geisinger. 
Wyatt is currently being evaluated and it looks as though he will spend another night here in the hospital again.  His situation is serious but he is doing well and appears to be stable.  Tonight the plan is to see if he can tolerate his regular overnight continuous feeds, remain pain free and not need oxygen beyond his normal overnight requirements.  If he passes all three tests he might be discharged to spend Easter at home with his family.  This would make us all very happy.
Wyatt will be having surgery again next week to reattach his constructed diaphragm, again.  This is a major surgery that will require his chest to be opened again.  We have been through this before and we will get through it again.  Right now, I just want to make sure he is well enough to come home and spend this weekend with us.  I will stress about next week, next week. 
Before I end this, one last thought.  Moms, trust your gut and force the issue if need be.  I have come to realize that no one knows their kids better then a Mother.  If you feel that something isn’t right just done settle for what a doctor or professional tells you.  Wyatt is his own medical journal and doesn’t follow normal behaviors in terms of medical procedures.  Twice Mary had demanded more be done and both times a very serious condition was discovered after it was thought he was clear to go.   
As always, Mary and I thank you for your support and prayers.  You are very important to us and you all give us strength.  Happy Easter and God Bless.

Please feel free to contact us at

Tuesday, April 5, 2011

Shane's Condition

Shane’s condition improved today.  His WBC dropped in half from where it was yesterday which tells me the antibiotic is working.  His tests came back positive for a UTI and for the Rhinovirus.  I am more concerned about the UTI because he has had them before and was hospitalized last summer after an UTI lead to an e-coli infection which made him very sick.  His Urologist will be seeing him tomorrow to evaluate his condition but I suspect that he may have a drainage problem causing urine to escape and thus causing the infections.   It will be very interesting to see how this plays out over the next day or so.  Shane is also requiring O2 to help him breath and I suspect that this is more related to the Rhinovirus and nasal congestion and thus not an issue with his lungs.  Multiple X-rays this week continue to show that his lungs are fine yet the difficulty to breath continues.  He is suctioned multiple times a day and they have taken so much mucus out of this little boy of mine.  They have called in an ENT specialist to evaluate him and he should be seen by him tomorrow as well.  He has had no fever the past 2 days which is good news as it reached 104.6 on Sunday when he was in the ER.
Tomorrow will be a new day and let’s hope that Shane continues to improve.  The doctor said maybe he can come home tomorrow but thought that most likely he would need to spend a few more days in the hospital.  One thing we know about both Shane and Wyatt, they are fighters but they play by their own rules.  They enjoy keeping the doctors guessing as to what will happen next.  As always, Mary and I appreciate all the thoughts and prayers that are being said for our boys.  It means the world to us.  Thanks.

Please feel free to contact me at

Monday, March 7, 2011

Wyatt's Struggle

Here is an article that appears in today's Times News.  This chapter documents Wyatt's most recent struggles and what he has gone through this past December and January.  He is a fighter!!  Thank you again to the Times News for following our family through this journey.  Thank you to Karen Cimms for writing the story, Bob Ford for the pictures and Amy Miller for adding the medical information that brings awareness to the issues.  Also a big thanks to Dr Chris Coppola and to the Janet Weis Children's Hospital. 

I hope you enjoy the story and it made me cry today as I read it.  Please check out the other stories that have appeared in the Times News as they are listed on the right side of the page after you open the link.

Please feel free to contact me at

Friday, January 28, 2011

Wyatt's Condition

Wyatt is doing much better. This morning he didn’t look good and was struggling to breathe. He had a lot of fluid around his lung as his chest tube wasn’t draining properly and that was causing him some problems. Since then they repositioned his chest tube and his 11am x-ray looked better and now his 6pm x-ray even better. His lung fully expanded and he seems to be doing better. He should spend at least one more day in PICU. I am hoping that tomorrow he is back to formula again as he still is only taking only IV Fluids. I was talking with his surgeon today he told me that Wyatt was something else.  He said this birth defect of no left diaphragm is usually seen on ultrasound or discovered immediately after birth and is corrected between weeks 2 to 4 after birth.  He said in many causes the babies need to be on a ventilator.  He has heard no cause where a baby has lived for almost 11 months with this condition and in Wyatt's case, he didn’t even need oxygen until recently and even then it was only at night.  I am trying to do some research on this condition and to validate what I was told but so far I have found next to nothing on this subject.  Any readers of this blog have a baby born missing half a diaphragm?  If so, I would love to hear from you. 

In case you missed what happened with his surgery yesterday, when Wyatt was opened the surgeons were surprised to find that his left diaphragm was missing.  I wish I was there as this was his fifth surgery and the diaphragm, or so they thought, was seen on the previous four.  The surgeons built him a new one and attached it so that now he has the separation of stomach and chest.  Wow, I was stunned to hear that this was the case after surgery.  I suspect that now his breathing should be much improved as well as his eating and hopefully finally put him on tract to spend more time at home and less time in the hospital. 


Sunday, January 23, 2011

"Super Wy" - Wyatt is facing surgery again.

I think one of the most difficult decisions a parent has to make is a decision concerning medical treatment or surgery for a child when he or she is unable to tell you exactly what hurts or how they are feeling.  The decision is easier to make if the situation is dire or that person is in immediate danger or if it involves life or death.  The situation with Wyatt is very complex and involves many issues.  I am trying to process each issue to make the decision that will provide the best care for him not only today but for the rest of his life.  Wyatt is having multiple issues right now from feeding, diaphragm, lung and others.  All or some may need to be surgically repaired.  Wyatt has proven after each operation, even minor, that he struggles to recover and the post op has proven to be a critical time for him.  His diaphragm repair is a major surgery that will require his chest to be completely opened and his recovery will be painful and take days afterwards.  I have requested a surgeon who has operated on him in the past.  Due to the complexity of the issues and the fact multiple concerns may need to be addressed during surgery, at least two pediatric surgeons will be needed.  As all of this is being evaluated with multiple specialists, this process it is taking a few days to complete.  Wyatt may not be fit to go into surgery several times and the load on his body and recovery also need to be considered.  He is in pain from time to time and I feel that the doctors are treating his pain as well as possible.  Unfortunately, pain is present. 
Wyatt has eventration of left Diaphragm.  What this means is that part of his Diaphragm is not working properly and needs to be repaired. 
He has lung disease related to atelectasis and also has moderate pleural effusion around his left lung.
Atelectasis is caused by pressure on the outside of the lung, this pressure on the lung is caused by buildup of fluid between the ribs and the lungs which is Pleural Effusion.  The result of this is difficulty in breathing and chest pain.  Wyatt had pleural effusion a few weeks ago as well had while in the hospital had a chest tube to drain this fluid.
Due to his feeding issues and related GI concerns, the doctors are also considering a J tube to replace his G tube.
Wyatt appears headed for surgery sometime this week.  He is struggling now and at times is real bad.  The nurses and doctors are watching him closely and doing all they can to keep him stable, hydrated, nourished and comfortable.  I am very happy with the care that he is receiving at Janet Weis Children's Hospital @ Geisinger.
Mary and I appreciate all the emails, responses on Twitter and Facebook and prayers that are being said for Wyatt and our family.  This is a difficult time for us and with your support, we will get through this.  I will continue to share our experiences as we go through this journey.  I hope that this experience helps educate some who read about us and helps others who may be dealing with challenges that may seem overwhelming.  Thank you for being part of our journey.

Please feel free to contact us at