The Waksmunski Family: Eastern PA Down Syndrome Holiday Party

The Waksmunski Family: Eastern PA Down Syndrome Holiday Party: "Thank you to the Times News for traveling with us to the Eastern PA Down Syndrome Christmas Party. Here is the article that appeared i..."

Eastern PA Down Syndrome Holiday Party

Thank you to the Times News for traveling with us to the Eastern PA Down Syndrome Christmas Party.  Here is the article that appeared in today's edition.  Also feel free to read the other articles that appeared in the Times News by selecting the chapter or article on the right side of the page. 

http://tnlife.wordpress.com/epdsc-hosts-annual-holiday-party/

Spend a Week with Shane and Wyatt

I have decided that I would write about this past week in hopes of sharing with you what we do on a weekly basis.  Granted, not every week is exactly like this but this has become more normal and not unexpected.  I realize that many have it far worse than we do and I am in no way trying to minimize what others are going through but only opening up my family to those who are interested in reading about our Journey. 

The week started on Monday morning when my wife, Mary, took the two hour drive out to The Geisinger Medical Center (http://www.geisinger.org/) in Danville PA.  Both Shane and Wyatt had regular doctor appointments with their Pediatric Gastroenterologist and to complete some routine lab work.  As Mary went out to the medical center with the twins and one nurse, I worked from home to stay with Jesse.  Monday was a long day and some ten hours later Mary returned to a starving husband and child.  I guess a box of Girl Scout cookies and bag of potato chips only held us for so long.  It was a long day for everyone and I know we were all exhausted when we all went to bed. 

Tuesday started just like any other day, well the waking up and taking a shower part anyway.  It was shortly after 8am, I was getting ready to leave the house for work when the phone rang.  When the phone rings first thing, rarely is this good news.  Wyatt’s lab results had come back and his White Blood Cell (WBC) count was very high.  The doctor requested that we see our pediatrician immediately and that he was already faxing to them the results of the blood tests.  So now at 9am instead of heading to work, I was with Wyatt and his nurse heading back to the doctor.  The doctor was very concerned as his platelet counts were off as well and we were sent to the hospital for additional tests and lab work.  It was at this time we again discussed the fact that he might have Leukemia.  For Wyatt, this would now be the third time in his short life that Leukemia has been discussed.  The first time was right after birth and then again a few months after that.  Both times because his WBC counts were so high.  Both times he was treated in the hospital with medication and one blood transfusion and both times it was determined that he did not have Leukemia.  Here we go again, strike three???  Later that afternoon, the call came that we have survived another scare and that Wyatt did not have Leukemia.  The cause of his high WBC count was still unknown.  We would have to wait until all the lab results were in.  Here is an article for additional reading on Down Syndrome Leukemia.  http://www.disabled-world.com/health/cancer/leukemia/down-leukemia-cancer.php. 

Tuesday evening I made the drive to Allentown PA to Walters Pharmacy to pick up some prescriptions for both Shane and Wyatt.  There were thirteen in total.  I wish I could just stop by the local pharmacy but some of the medications they take are compounded meds that need to be made or mixed or something that the local pharmacy cannot make.  I was ready for bed when I returned home that evening.

Is it Friday yet?

Wednesday morning and we were back to normal with no doctor’s appointments and everyone seemed healthy.  We were still waiting on Wyatt’s lab results and this would be the day that both Shane and Wyatt would be introduced to rice cereal.  Up to this point the twins have only had formula.  They both have G-Tubes and take bottles during the day with continuous feeds overnight.  Both boys have also had Fundoplication Surgery as eating and reflux has been problems for them since birth.  Here is some additional information about Fundoplication; http://www.medicinenet.com/fundoplication/article.htm.  But today was rice cereal day.  Around dinner time, Shane and Wyatt ate some cereal and both seemed to enjoy it.  They were given a small amount and ate it up.  As the nurses were getting them ready for bed Shane started to have some problems.  It was now 9pm.

I was on the road Wednesday as I left in the morning on a business trip that would take me to Boston for a few days.  I spent the day traveling and made stops in Westport CT and South Windsor CT.  It was 7pm when I arrived in Boston and checked into my hotel room.  I had dinner and just after 9:00pm, my wife called and my three day visit would turn into a three hour visit. Shane was in trouble.  He was trying to vomit, which he can’t do because of the fundoplication.  He was wretching, gagging and in respiratory distress.  Shane was becoming very lethargic and nearly unresponsive.  He was having a very difficult time.  Mary called Stacy, one of the nurses who had just left and she returned to assist.  They suctioned him, tried to relax him and called 911.  There was also fear of aspiration, a situation that we experienced before with Wyatt.  My wife gave me an update and then went with the paramedics to the hospital.  I called Nana, my mom to come and watch Jesse and Stacy the Nurse stayed to watch Wyatt.  It was now close to 10pm and my three hour trip was now over as I began the five hour drive to Allentown and Lehigh Valley Hospital.

My wife called me just prior to my arrival and told me that Shane was doing better and that he was being discharged.  It was around 3:15am when I arrived to find a very tired mama and a sleeping boy.  We gathered our things and went home arriving about an hour later.  Was it still Wednesday night or is it now Thursday morning?  Sometimes the days just seem to run together and this was one of those days.

Thursday morning started with a call to the Pediatric Gastroenterologist at Geisinger to provide him an update on what had happened.  The doctor was concerned about a possible intestinal blockage because bile was backing up and coming out his G-Tube.  He also suspected that Shane’s reaction could have been a reaction to the rice or simply just a stomach virus.  The plan for Shane was quite simple; he would be feed only pedialyte for his first feeding.  If he held it down or had no reaction he would receive the same three hours later.  If he was OK for both feedings, his third feeding would be formula.  If at any time he struggled with the feeds he was to be brought immediately to the Janet Weis Children’s Hospital at Geisinger for admission. http://www.geisinger.org/services/jwch/  Shane’s feeding went well and he remained home.  Both boys were taken off rice cereal until they could be further evaluated by the feeding clinic.  Thursday night, we all slept well.

Friday was a good day for all of us.  Everyone got a few hours of much needed sleep.  The pediatrician called Friday morning and said that Wyatt’s lab results were back.  They confirmed that he had a Urinary Tract infection (UTI).  This infection would be treated with an antibiotic for ten days and a return doctor’s visit in two weeks.  This was a welcome outcome considering what we were thinking earlier in the week but still an issue that we will need a follow up with his Urologist.  Shane had a UTI a short time ago that developed into an e-coli infection that landed him in the hospital for a week.  I wonder if we can get a two for one discount.

I did make another trip to Walter’s Pharmacy Friday evening due to the fact the local pharmacy did not have the antibiotic that the doctor wanted Wyatt to take. 

We also managed to have both physical and occupational therapy for the twins during the week.  I never mentioned my son Jesse, except for when Nana came to babysit for him.  He is in pre-school and attends twice a week and we managed to get him there and to spend time with him as well.  We had a full and busy week, but this is what we do.  It was now Friday evening, the week was over and the weekend had finally arrived.

On Saturday morning we packed the car and went to breakfast with the Eastern PA Down Syndrome Center.  This was the center’s annual Christmas Party and was hosted by the Allentown Brew Works (http://www.thebrewworks.com/allentown-brewworks/). There were 171 people that attended plus one Santa.  It was a great morning and a great ending to a crazy week.  The people that belong to this center have welcomed my family with open arms and welcomed us into their family.  It was great seeing people that we meet at the Buddy Walk and I love meeting new people too.  I just wish that I had more time as I wanted to sit and talk with everyone that was there.  I will post an additional link about the party later this week. 

Now as I prepare for a new week and the challenges ahead, I pray to God to give me strength to carry on.  I thank God for making Mary my partner in this Journey and I thank him every day for the people that are now part of my new family.  Well, I have to go as I need to get ready for a new week, a new journey with new challenges and opportunities. 

Please feel free to contact me at ericwaxy@ptd.net

Please write Gov Beebe of Arkansas

I am encouraging everyone to write Governor Beebe at http://governor.arkansas.gov/contact/index.php. Please include in your letter that this baby boy is in Arkansas Children’s Hospital.  Also include that fact there is a DNR that was placed by the adoption agency and that a DS adoption network has already identified multiple families that are willing to adopt this child.  In the interim while adoption issues are worked out, this child needs a guardian ad litem appointed to protect him.

Any letter to the governor should also be cc'd to the hospital personnel below. This should get the hospital's attention immediately that a full scale blitz may be coming their way so the baby will receive ULTIMATE great care at that point, right?  The hospital main line and they said to send emails to info@archildrens.org but list out the recipient’s names in body of email.

Jonathan R. (Jon) Bates
President, CEO, and Director
Arkansas Children's Hospital

Dan McFadden
Director of Communications
Arkansas Children's Hospital

http://definitions.uslegal.com/g/guardian-ad-litem/

“Please, don’t Let me die” - Baby Doe

Last Night, Friday night, I am home after a week of traveling.  On TV is the Boise State vs Fresno football game.  My three boys are sleeping and my wife decides she better turn in as we both know at anytime Shane or Wyatt (or both) will wake up again.  A friend sends me a message as she is traveling with her family and is having a problem at the hotel where they are staying.  I am the worldly traveler after all. I feel good, relaxed and nearly ready for bed myself.  I am having a pretty good evening. 

Then something happened on my way to bed.  I turned on the computer and read a post about twins that were born.  Born at 37 weeks, one baby was apparently healthy and had just gone home with his new parents.  The other, born with Down syndrome has serious medical complications and is fighting for his/her life. This baby is not going home and has no home. This child was left behind, not wanted and with a Do Not Resuscitate (DNR) order. Guess what?  Going to bed would be delayed as I spent the next hour or so trying to find out more about this baby.  I, along with others, began posting this story on line, on web sites of Down Syndrome Associations and The Children’s Hospital.  This poor baby needed help and it was life or death.  The hope was to get this information posted ASAP in hopes of finding a family that may be able to help and advocate for this baby.  Before I finally fell asleep, I received a reply from a family that might be able to help.  By morning, The Down Syndrome Community was responding in force.  The word was getting out and many were talking about this situation and spreading the news in hopes of saving this baby.  I also know other families have expressed an interest in advocating and even adopting this child.  This story will not end today as this process can take time and can’t be resolved with one phone call.  As I write this today, we all need to continue to pray that this child continues to receive the medical treatments necessary for life.  We need to pray that a family may become involved in the medical decisions that will be required and adoption happens quickly.

Personally, I know how devastating it can be to have a child that is sick, in need of medical care and advance treatments that deal with life threatening conditions.  I have two boys that are still going through some of this.  I get it.  I know the shock associated with this and my wife and I cried long and hard after Shane and Wyatt were born.  We needed to process what happened and the impact this would have on our lives.  Our story has been told so I won’t retell it, but this is what I do know.  Life isn’t fair and sometimes life throws you a curve ball when you are expecting a fast ball.  I also know that people deal with issues differently but death for a baby doesn’t have to be a first and only option.  I also know the fight for life that both my boys had in them from even before they were born.  They wanted to live!!  I do realize that babies sometimes die or difficult decisions at times need to be made concerning life or death but to simply allow a baby to die as the first and only option is just very sad to me.  This child, like Shane and Wyatt and so many others deserve a chance at life.  Maybe, just maybe if we asked this baby what should be done the response might be “Please, don’t let me die”.

50 Shirts from 50 States - UPDATE

I am writing my next blog about the Mile High Down Syndrome Association but before I post it I have decided to provide an update on the Shirts that I have received.  Often emails are sent to me asking if I have one from this state or that or about an organization and a particular walk.  As of today, November 19, 2010, I have shirts from eleven different states representing thirteen different associations. 

Here is the list:

States; Kansas, Massachusetts, Pennsylvania, Ohio, Wisconsin, Indiana, New York, Delaware, Arkansas, Colorado and Michigan.

Associations; Down Syndrome Guild of Greater Kansas City, Massachusetts Down Syndrome Congress, Eastern PA Down Syndrome Center, Down Syndrome Association of Central Ohio, Down Syndrome Association of Wisconsin, Down Syndrome Family Connection, Down Syndrome Aim High Resource Center, Down Syndrome Association of Greater Cincinnati, Down Syndrome Association of Pittsburgh, Down Syndrome Association of Delaware, Down Syndrome Connection of Northwest Arkansas, Mile High Down Syndrome Association and Michiana Down Syndrome.

Again, thank you to everyone who has sent a shirt.  I wear them often and can’t wait to write about the all the great Down Syndrome Associations.

I have received a number of emails asking if I will also accept shirts from outside the USA.  The answer is YES!!  Also, I am interested in shirts from any event, walk, team or fundraiser.  Please include some information about the event and I will write it up.  If it would be easier, send me a contact number and I will call you before writing about your event.  I find this fascinating and I am so interested in what is happening to drive awareness.  I think we can learn from others and share ideas.  Most important, we can continue to advocate for Down syndrome and special needs. I really believe that as more people read about what you’re doing the better off we will all be.  I recently mentioned the Buddy Walk to a friend and they thought that maybe this had something to do with dog walking event.  There are so many people that still need to hear from us.  Please let me know if you are finding this beneficial or share with me your thoughts and suggestions.

My goal in 2011 is to collect at least one shirt from all 50 states.  I also want to collect a shirt from every walk and from every Down Syndrome Association.  I then want to walk a walk in all 50 states; I know this may take a few years to complete.  Please invite me, I AM ON A MISSION!!

Please feel free to contact me at ericwaxy@ptd.net

Eastern PA Down Syndrome Center

http://www.epdsc.net/

A few weeks ago I had the opportunity to walk in my very first Buddy Walk.  This weekend I proudly wore the shirt from this walk, although I admit that I have worn this shirt often.  It was also this shirt that inspired my 50 shirts from 50 states campaign.  In today’s blog I will introduce you to the Eastern PA Down Syndrome Center (EPDSC) as well as sharing some personal thoughts about the people we have met from the center.

The EPDSC is located in Trexlertown, PA.  This Lehigh Valley based organization’s mission is to equip families and individuals with Down syndrome with the latest medical advancements, social, emotional and educational support in order to maximize each individual potential.  The Center’s medical tram is lead by Medical Director, Don Levick, M.D., MBA.  Dr Levick has been caring for children with Down syndrome and their families since 1982.  Dr Levick along with Dr Renee Marrow-Connelly, Dr Scott Rice and Occupational Therapist Anita Ellsberry provide comprehensive medical evaluations for individuals with Down syndrome.  This staff of physicians will provide both patient and primary care physicians expert recommendations regarding medical requirements and their therapeutic and development needs.

In addition to the medical evaluations, the EPDSC also serves as a community resource for families, service agencies, practitioners and to the general public.  Please contact the Eastern PA Down Syndrome Center at www.epdsc.net or (610) 402-0184.  If you have just received confirmation that your child has Down syndrome and would like to speak with someone, please contact their HOTLINE at (610) 432-3776.  This 501(c)3 non-profit organization with their medical services, advocacy resources, consultation services and social activities will continue to service Eastern PA and beyond for years to come. 

While navigating the web site, make sure to check out LOSE THE TRAINING WHEELS PROGRAM.  This 5 day camp was organized by EPDSC along with Dr Richard Klein, inventor of the bike used in this camp, was designed for Special Needs students to teach them to ride two wheel bikes.

Also check out the 2010 Holiday Party and if you will be in the Allentown, PA area on Saturday, December 11, 2010, stop in and visit with us.  All the details for this party, including date, time, place, cost and RSVP details are on line.  A special thanks to the Allentown Brew Works.  http://www.thebrewworks.com/.  Yes, Shane and Wyatt will be attending (health permitting) but more importantly, Santa will be there too. 

OK, now about the Lehigh Valley Buddy Walk.  What a great experience except next time I will wear sneakers instead of sandals.  The people we met are so special and really made us feel welcome.  My wife and I really enjoyed the interaction with the other parents and so many came over to us just to say HI.  We quickly realized that we are now part of a very special community.  I also want to say thanks to Karen Cimms and Bob Ford of the Times News who helped document our first walk.  Please check out the article; http://tnlife.wordpress.com/walking-a-mile-to-raise-millions/.   Yes, I am currently recruiting team members to walk with us next year so contact me if interested, LOL. 

In ending, Mary and I would like to say thank you to Bobby and Michele.  They were the first folks we met from the center shortly after our sons were born.  They made themselves available to us and often called to just say hi and to make sure we were OK.  This was a difficult time for us and thanks again for caring. 

Please feel free to contract me at ericwaxy@ptd.net

The next shirt that I will wear is from Mile High Down Syndrome Association.



The Waksmunski Family: I was tested.... and FAILED

The Waksmunski Family: I was tested.... and FAILED: "I was tested ……. And FAILEDLast week while on a business trip, I was sitting at the bar eating dinner and talking with this guy sitting next..."

I was tested.... and FAILED

I was tested ……. And FAILED

Last week while on a business trip, I was sitting at the bar eating dinner and talking with this guy sitting next to me.  We discussed our jobs, travel and sports and in particular the World Series.  There were a number of us, travel warriors, settling in for Game 1 of the Series.  Then it happened, out of the blue and totally unexpected, I was tested.

There we were, talking away, getting ready for the game and I hear this gentleman say “I will show you what a retard I am” as he continued to ask me a baseball related question.  The test…..  Here was a moment that I knew I would face someday.  Since the birth of Shane and Wyatt, after reading the blogs from other parents and after reading and hearing how truly offensive this word can be, I now feel differently about it and it was now my moment to react.  I admit, prior to my twins, I didn’t use the word (often) but had no reaction when others did. The test. 

This guy probably said this word before and this time was referring to him and did not use it to call out someone else.  It is the word; the R-word used anyway IS offensive.  It was now up to me to educate him on what this means to others.  It was my moment to talk about awareness and special needs, Down syndrome and maybe even what my boys have been through.  The ball was in my court, the test.  Maybe, this was my opportunity to eliminate this word from being used by one more person for ever.  Well, I said nothing.  I failed the test.  Yes, I felt my blood boil, yes it upset me and yes, shortly afterwards I left.  I said nothing.

I have pledged my life to being a force and someday a leader in driving awareness.  I have pledged to be a voice and to speak to the issues, educate and advocate for special needs and Down syndrome.  I realized this day that although I have come a long way since March there is still so much that I have to learn.  I also realize that many of you reading this would have reacted differently and would have said something.  This was my first opportunity and I didn’t handle it well and as I went to bed that night I felt as though I let Shane and Wyatt down, I let some of you down and I could not help but wonder what would Rosa Marcellino have said?    I will never fail this test again.

A few weeks ago my wife heard someone use the R-word and recently one of our nurses used it as well.  Both times, my wife politely said something to them.  She has always told me that she has never used the R-word and she will not let anyone say it without saying something to them.  She feels that we will always have to the spokesperson for our sons and what is right.  This can start with one word or in this case by eliminating one word.

One by one, person by person we can spread this message of awareness.  We will have good days and bad and some days we will wish we could have said something or did something differently.   OK, maybe I know that I didn’t fail the final test and possibly this was just one quiz in a series of quizzes.  I know my final grade will come long after I have left this earth but I do know the next time I will not let you down.

Massachusetts Down Syndrome Congress

http://mdsc.org/

This weekend, I had the privilege of wearing the Buddy Walk shirt from the Massachusetts Down Syndrome Congress.  I first would like to that my friend Suzette who sent me my shirt.  Thanks Suzette!!  This is my son Jesse in the photo with me.

This is the second blog in my 50 Shirts from 50 States campaign and already I am realizing some things that I didn’t know before.  I already knew that there were so many great people involved in each organization.  I already knew that the Down syndrome community was a close knit family.  What I didn’t know is that each organization, while based in a city or state, has the ability to touch people and families all around the globe.  While the base or core resources are designed for a particular region, there is information that everyone can find beneficial.  I hope that as you continue to read each week, bookmark the organization that you find particularly interesting to you.  Please share the information with friends, family and colleagues as we continue to drive Down syndrome awareness nationally.  I also have come to realize that although there are in fact 50 states (this fact I did know) there are so many walks and organizations that I expect someday we will go well beyond 50 shirts.  That is a good thing.  I will strive to receive a shirt from all 50 states; I will also blog about all organizations that send me a shirt.  This week I received shirts from Colorado, Ohio, Pennsylvania, Wisconsin and Indiana.  How exciting and your week is coming soon.

In 1983, a group of parents were sitting in a living room chatting about their children with Down syndrome.  They wanted to know how they could connect and educate families, schools and communities, they did just that.  Today, with over 1600 members, The Massachusetts Down Syndrome Congress (MDSC) is recognized in Massachusetts and beyond as a preeminent organization for information, networking and advocacy for and about Down syndrome.  While there is no way I can write about all the great things that MDSC are doing, I will mention a few and strongly suggest that you visit their website to read about all their services and programs. 

In addition to the Buddy walk which took place on October 10^th, MDSC is holding its 7^th annual Educators Forum on November 18^th at the College of Holy Cross.  This year’s topic Innovative Teaching Strategies; Building Bridges to Inclusive Education for Students with Down syndrome is designed for educators across Massachusetts  to learn about best practices for educating students with Down syndrome in an inclusive classroom.  This year’s keynote speaker will be Michael F. Giangreco, Ph.D., Professor at the University of Vermont in the Department of education and at the Center on Disability and Community Inclusion. 

On November 21^st, MDSC All Stars will face off against the Boston Bruins Alumni team.  This is a benefit hockey game to raise awareness and funds for the MDSC.  If you are in the area, Please come out and support this great event, meet some great Bruin players, get some autographs and watch a charity hockey game.  In addition to the game, there will be a silent auction and raffle with fantastic items to win and bid on such as tickets to Red Sox games, Bruins games and autographed sports memorabilia.  If you cannot attend, you can sponsor a player or just make a donation on line at http://mdsc.kintera.org/hockeygame2010.  This event, with $5 admission and free tickets to kids under 12, this is a great family outing. 

The MDSC Legislative Task Force is a group that has been working hard to pass MDSC’s priority bill H.1780, An Act to Require National Background Checks for Staff Who Work with Individuals served by the Department of Developmental Services.

Also, Advocates in Motion (AIM) seeks to provide fun, inclusive, interactive events each month for young people with Down syndrome.  Now is time to sign up for the 2010 – 2011 AIM.

MDSC is an official charity program of the Boston Marathon.  They are currently seeking both unqualified and qualified runners to participate in the 115^th Boston Marathon on Monday, April 18, 2011. 

In addition to the programs listed, MDSC has a wide range of programs and services form new parent support, promoting inclusion, educating the public and educators to addressing social policy issues with state and local officials. 

This is an organization that is well run and highly organized under the leadership of Maureen Gallagher, Executive Director, and The Board of Directors along with a dedicated staff and hardworking members.  Please visit MDSC at http://mdsc.org/ or (800) 664-MDSC.  Please read about the programs and services and use their services or refer them to those who may benefit from what they have to offer.  Also check out the MDSC update, their summer newsletter and sign up to receive the monthly e-newsletter.

I would also like to introduce you to Brian Skotko, MD, MPP.  I realize that many (most) of you may already know Dr. Brian Skotko.  When my twins, Shane and Wyatt, were born and a local newspaper, Times News, was writing an article on Down syndrome they turned to Dr. Skotko.  Thank you!  Dr Brian Skotko is Chair of the Board of Directors to MDSC and a clinical fellow in genetics at Children’s Hospital Boston, Massachusetts General Hospital and Brigham and Women’s Hospital, specialist in the Down Syndrome Program at Children’s Hospital Boston and brother of a person with Down syndrome.  In addition to MDSC, Dr Skotko also services on the Board of Directors for National Down Syndrome Society, Band of Angels Foundation and Lettercase and also serves on the Professional Advisory Council to the National Down Syndrome Congress.  Please visit Dr. Brian Skotko at http://www.brianskotko.com/ to learn more about him, books he has written, workshops, Testimony before congress and TV appearances. 

The next shirt I wear is from the Lehigh Valley Buddy Walk and the Eastern PA Down Syndrome Center.

Please feel free to contact me at ericwaxy@ptd.net.

Kansas - Down Syndrome Guild of Greater Kansas City

http://www.kcdsg.org/

This weekend I had the privilege of wearing a Step Up for Down syndrome shirt form this year’s walk in Kansas City which was sponsored by The Down Syndrome Guild of Greater Kansas City (DSG).  I would like to start by saying “Thank You” to everyone from Kansas City who wanted to make sure that a shirt was sent my way.  I want to especially say thanks to Amy Allison, Executive Director, of DSG who not only sent the shirt but also sent me information about the DSG.  It is clear to me the folks there know exactly what they are doing and are doing it well. 

Now, I would like to introduce you to this fantastic organization and tell you a little about what they do.  The DSG of Greater Kansas City, a nonprofit 501c3 organization, provides programs and services to improve the quality of life for individuals and families.  DSG currently serves over 1100 families and partners with 45 school districts and 22 hospitals to provide current and accurate information regarding best practices in supporting individuals with Down syndrome.

DSG offers resources including the DSG Center, website, resource library, Connections Newsletter, expectant parent supports, New Parent Magazine and Sharing the News Brochure.

DSG also offers education programs and services, including an annual educational conference, conference scholarships, seminars and workshops, Smart Start Program, inclusion solutions along with Down Syndrome Specialists.

DSG offers outreach programs like parent to parent network, support breakfasts, Hospital meal voucher program, peer presentations, changing lives presentations, birthday club program and community groups.

Some of the Social Opportunities offered by DSG include All Guild events, infant/preschool group, elementary age group, STARS teen program, adult group and of course, The Step Up for Down Syndrome Walk which is one of the largest in the country with over 7,000 participants.  WOW!!

I think they have thought of everything.  I am so impressed with what DSG is doing to help families and to promote awareness.  Thank you Amy for introducing me to this great organization and to everyone who is involved with DSG for all that you do.  I personally want to come and visit you and see firsthand your center and to meet the people of Kansas City. 

Please visit the Down Syndrome Guild of Greater Kansas City at www.kcdsg.org or (913) 384-4848.  There is something there for everyone no matter where you live.  Also consider helping them by volunteering or sending a donation.  I know they would appreciate it.

Also visit First Downs for Down Syndrome (FDFDS).  FDFDS partners with the Kansas City Chiefs offensive line to promote greater awareness of individuals with Down syndrome.  FDFDS provides significant financial support to the Down Syndrome Guild of Great Kansas City and to the Down syndrome clinic at Children’s Mercy Hospital and other Down syndrome organizations.  Please visit First Down for Down syndrome at www.fdfds.org or (913) 722-2499.  This has turned me into a Chiefs Fan, after the NY Giants.

The next shirt that I will wear was sent to me from the Massachusetts Down Syndrome Congress Buddy Walk. 

Please feel free to contact me at ericwaxy@ptd.net.

50 States

A few weeks ago I posted on FaceBook that I would like to have a Buddy Walk shirt from all 50 states.  At the time I didn’t give it much thought except for the fact that I just completed my first Buddy Walk in Allentown, PA.  The Lehigh Valley Buddy Walk was sponsored by The Eastern PA Down Syndrome Center and I found myself wanting to wear my new Buddy Walk tee shirt every day.  I also found that when I wore the shirt people would ask me about the walk and this allowed me to not only mention my twin boys, Shane and Wyatt, who both have Down syndrome but more importantly allowed me to talk about Down syndrome awareness.  I find this to be very exciting.  Since then, a number of people have contacted me and the shirts started arriving.

So now what do I do?  Well, I will proudly wear each shirt as often as possible.   I will also write and tell you a little about the organization or the family that sent me the shirt.  All that I ask in return is that, hopefully, you read the blog and visit the sites of the organizations that I write about to learn more about them.  If you can assist them in anyway, please do so.  More importantly, if you or anyone you know can benefit from them, please contact them and use their services. 

I would also like to stress the fact I am not a professional writer (that may be obvious by my writing) but a dad of 3 kids, including twin boys with Down syndrome.  My goal is to say thanks to those who have helped me or prayed for our family and to spread awareness for Down syndrome related issues.  I also want to help as many other families who are seeking help and don’t know where to go.  If you are reading this and have never spent time in a Children’s Hospital or don’t have experience with special needs kids, please take a moment and learn more about it.  I never knew what families had to go through until my twins were born and my life will never be the same.  This IS a good thing. 

Shane and Wyatt's first Buddy Walk

http://tnlife.wordpress.com/walking-a-mile-to-raise-millions/

We enjoyed a great day at the Lehigh Valley Buddy Walk.  This was our first of many walks and it was great meeting so many families.  Thanks to the Times News, Karin Cimms and Bob Ford for covering this event. 

Chapter 1 - Pregnancy and Chapter 2 - The Journey Home

http://tnlife.wordpress.com/

The Waksmunski Family: Here we go!!

The Waksmunski Family: Here we go!!: "Good Afternoon, Well, we have finally entered the world of blogging. I am not sure what this will look like but I am excited to share my th..."