The Wonderful World of Down Syndrome

Goodbye Grandpa

2011-04-25T19:54:00.000-07:00

Today we buried my dad. He was 90 years old and was diagnosed a few years ago with Lewy Body Dementia Syndrome. Over the years he had a few medical procedures performed and could no longer take care of himself. My sister and I both took care of him for the last 3.5 years of his life. He leaves behind my sister and me, 6 grandchildren, 6 great grandchildren and 7 great great grandchildren. He lived a long life. We had services that would make anybody proud. He was a WWII veteran and was in the Navy aboard the USS Ozark. He is now with mom up in Heaven after being apart from her for 18 years. In the picture is my 18 year old who has Down Syndrome and is in the JROTC program at his school. He presented the flag to my sister.

We will miss dad tremendously. RIP Dad.

My son, the Cadet

2010-11-25T10:48:00.000-08:00

Student with Down Syndrome becomes JROTC Cadet

By John Richmeier

GateHouse News Service

When enrolling her son Stephen at Leavenworth High School, Cindy Bartko has noticed a table for the Junior ROTC program. But she never pursued having her son join the program.

Stephen has Down syndrome.

But he was among the many JROTC cadets to appear in Thursday’s Veterans Day parade in downtown Leavenworth.

The high school sophomore began attending JROTC classes earlier this month.
He became involved in the high school program after he was invited to fire a JROTC cannon during an Oct. 22 home football game at the high school.

“He got a real kick out of it,” Cindy said.

Retired Lt. Col. David Black told Cindy JROTC officials would work with her son. Black is the senior Army instructor for JROTC at Leavenworth High School.

“He wanted Stephen to be in the program,” she said.

Stephen’s high school schedule was juggled in order to accommodate JROTC classes. Cindy said Stephen has someone to assist him in class.

“Our mission is to build better citizens,” Black said.

He said the other cadets learn something from having Stephen in the program.

“We as people tend to shy away from people with disabilities,” Black said.

The senior Army instructor said he also learns from having Stephen as a cadet.

Stephen lives in Basehor but attends special education classes at Leavenworth High School.

Cindy said her son feels a sense of pride in the JROTC program, which is visible in the way he carries himself.

“He just feels like he belongs, and you can tell that,” she said.

He began JROTC classes Nov. 1. Thursday’s parade marked the first time he wore a JROTC uniform.

Stephen also has attended Leavenworth High School home football games as part of a fundraiser program called First Downs for Down Syndrome and was named an honorary co-captain of the football team, Cindy said.

Chapter 2: The Long Road Home

2010-09-14T20:47:00.000-07:00

Chapter 2: The long road home

Eric Waksmunski holds both twins, Shane, left and Wyatt, at home for the first time after Wyatt was released from the hospital. (All photos by Bob Ford/Times News)

In March, after a difficult pregnancy, Mary Anne Christo and her husband, Eric Waksmunski, were blessed with twins.

Anticipating the usual complications faced by premature babies, the couple also had to face the unexpected when both Shane and Wyatt were diagnosed with Down syndrome. According to the National Down syndrome Cytogenetic Register in London, it is estimated that of all births, there will be 14 or 15 sets of non-identical twins with Down syndrome in every 1 million births.
Before they could appreciate how rare their situation was, or how much their lives were about to change, the couple had to deal with the reality of their situation. Their babies were seriously ill.
Over the next few months they would face multiple surgeries and numerous infections. They would stop breathing or lose consciousness, and on at least one occasion, required CPR. It seemed for awhile that every day they faced a new challenge and a new danger, but eventually, after four months of hospitalization, with just a brief trip home for Shane, both babies would be well enough to leave the hospital.

Chapter Two of Shane and Wyatt’s story is about that long, hard journey home.

By KAREN CIMMS
kcimms@tnonline.com

When Mary Anne Christo gave birth in March, she and husband Eric Waksmunski were prepared for twins and for an early delivery, but the Mahoning Township couple was devastated to learn both boys had Down syndrome.

Shane and Wyatt faced the usual complications of babies born 10 weeks early. They needed CPAP machines, which forced oxygen into their tiny lungs. They had apnea, which meant they would often stop breathing; and bradycardia, which is a slowing of the heart rate. They also had jaundice — a high level of bilirubin in the blood that causes a yellowish cast to the skin and whites of the eyes.
The babies also had feeding issues. Being premature, they didn’t have a sufficient suck reflex to bottle feed. Both were given nasogastric feeding tubes that went through the nose and into the stomach.
Shane weighed 3.5 pounds at birth, while Wyatt was 3.4 pounds. As most babies do, they lost weight after birth, each dropping to under 3 pounds.

While their early birth and Down syndrome diagnosis were serious, neither was critical. There was even talk of sending them home in a few weeks.

“It was our emotions that were critical,” Waksmunski recalls.
“Yes,” agrees Christo, “it was a bad time.”

Mary feeds Wyatt at home for the first time.

Although Waksmunski and Christo, who are originally from South River, N.J., accept that their lives have changed, it was difficult in the beginning.

“The grief part of it took awhile to get over,” says Waksmunski. “But yet, that same day, March 6, that Saturday night, I was already on the Internet researching Down syndrome and already was thinking that we have to do something. I went into that mode instantly, but yet, I was still bawling my eyes out too.”

Christo remembers that night at St. Luke’s Hospital in Bethlehem well.
“It’s a good example of how men and women deal with grief and situations differently,” she recalls. “Because really, he was a rock to me, but he was still saddened and devastated and had all those feelings of loss, but he was able to quickly turn it and just say, ‘Well, if this is what it’s going to be, then this is how we have to deal with it.’”

As the weeks passed, Christo and Waksmunski dealt with their emotions and prepared to welcome the twins home. Waksmunski returned to his job as a regional loss prevention manager for Urban Outfitters, while Christo, who left her job as a registered nurse at Blue Mountain Health System months earlier due to complications with her pregnancy, cared for their son, Jesse, who was almost 3. They took numerous trips to Bethlehem, waiting for the day the doctors would let them bring their babies home.

By mid-April, it looked like that day was just around the corner. Wyatt was up to 5.13 pounds and Shane weighed 5.6 pounds. Wyatt was scheduled to go home April 30. Shane wasn’t to be too far behind him.

But days later, they learned Wyatt would not be going home, and there was discussion that Shane might need surgery.

The roller coaster ride was just beginning.

In early May, there was talk that Shane would be coming home. Wyatt was diagnosed with aspiration pneumonia (caused by breathing foreign materials into the lungs, in this case — formula), and would need to remain in the hospital awhile longer. Within days, Shane began to have a high number of apnea and bradycardia incidents. Doctors began to link the events to feeding issues, and expressed concerns about the babies aspirating. Discussion of a homecoming for either baby was put on hold.

Jesse sits on the couch with his mother as she holds Shane shortly after he came home from St. Luke's Hospital. At the time Shane was still getting his nutrients from a nasogastric feeding tube.

It became common for the Waksmunskis to hear on one day that either Shane or Wyatt might be sent home, only to learn the next day, that they would not.

The apnea and bradycardia incidents began to increase, with Shane having 14 incidents in just one day. The doctors were concerned both babies had reflux issues, which meant the food they were eating was leaking back into the esophagus. Both boys were being fed during the night via feeding tubes. During the day, they were bottle fed small amounts of formula.
On Mother’s Day, May 9 — the twins’ original due date — there was still no more talk of when they would be going home. As the apnea and bradycardia issues continued to increase, bottle feeding was stopped and both boys remained on a continuous tube feed.
By the middle of May, medical personnel again discussed sending Shane home. One day it was on, the next day it was off.
Finally, almost 11 weeks after he was born, Shane went home, while Wyatt remained at St. Luke’s in the Neonatal Intensive Care Unit.

Home, but not for long
The Waksmunski’s dining room was turned into a nursery, with matching cribs and a changing table. The playful jungle-themed bedding and mobiles stood in stark contrast to a host of medical equipment — from oxygen to heart monitors, as well as overnight nursing care — that welcomed Shane home.
Shane’s first few days at home were uneventful, but that would not last. As his food intake increased, so did the number of reflux incidents.
On the evening of May 30, Shane’s heart monitor went off 10 times. The next day he was rushed to the emergency room.
Doctors at St. Luke’s suspected an infection and recommended he be transferred to a children’s hospital. The decision was made to take him to Janet Weis Children’s Hospital in Danville.
At Janet Weis, doctors discovered a growth near Shane’s testicles. Surgery the following day was deemed to be a success, but the next morning, as they prepared to take him home, Shane went unresponsive. Christo worked on reviving him while Waksmunski ran for help.
Shane had experienced severe reflux, which caused a vasovagal (or fainting) episode.
“I never knew, and I still don’t understand how reflux can trigger so many things,” says Waksmunski. “It can stop your heart; can stop you from breathing; it can put you unconscious, and I never knew all that.”
The Waksmunskis believe that while the babies were in the hospital, the amount of food they received was small enough to keep them from refluxing. When Shane came home and his food intake increased, even a little, he began to reflux more.
After Shane’s vasovagal episode, the doctors ran more tests.
“They said ‘this kid’s in bad shape,’” recalls Waksmunski.
The couple now had two very sick babies, in two different hospitals, over two hours away from each other.

Wyatt takes a ride
Doctors at Janet Weis consulted with doctors at St. Luke’s and determined Wyatt was having the same problems as Shane. It was recommended he be transferred to Janet Weis.
Before he had his first car ride or slept in his own crib, Wyatt took his first helicopter ride, flying 120 miles from Bethlehem to Danville.
In the meantime, surgery was again discussed for Shane. Doctors recommended a procedure called fundoplication, which would create a flap at the bottom of the esophagus, and prevent food in the stomach from refluxing into the esophagus. They also wanted to insert a gastrostomy feeding tube (G-tube), which would be placed through his abdomen into his stomach. Wyatt would likely face the same procedure.

Mary Anne Christo uses her fingers to support Shane's mouth and initiate a sucking motion. Both boys had difficulties with their sucking reflex after they were born, which is common with premature babies.

While Christo’s medical background helped her understand the risks and benefits of such surgery, Waksmunski wanted more information. He posted a message on the Facebook page he created shortly after the babies were born — “Shane and Wyatt’s Journey with Down syndrome” — asking for input from parents whose children had experienced feeding tube placement and fundoplication. The response was overwhelming.
In addition to dozens of public comments on Facebook, he received nearly 100 e-mails from parents, which included telephone numbers so he could call them back to discuss their experiences. That input, coupled with research and an understanding of the needs of his children, helped him also agree to the surgery.
When Wyatt experienced an incident similar to Shane’s, it was decided that he too would have the surgery.
On June 11, Wyatt was wheeled into surgery first, followed by Shane. Afterward the babies were moved to separate rooms on the pediatric floor.
Both surgeries went well, but by late evening it was clear Wyatt was in crisis.
“Wyatt didn’t seem to be doing well after the surgery,” recalls Christo. “It was apparent that he was really struggling — struggling to breathe, struggling to survive.”
She held an oxygen mask to Wyatt’s face and over the course of the evening, his heart rate and oxygen levels continued to drop.
Waksmunski decided to find a nurse and request a nasal cannula, which would secure the oxygen tube to Wyatt’s nose. Almost the moment Waksmunski left the room, Wyatt coded.
“All of a sudden, he literally crashed, and babies can crash very quickly,” explains Christo. “Eric probably got outside the door, and I thought that I (whispered) ‘Rick,’ but instead, I had yelled, and he had heard me. I just started CPR immediately because I wasn’t going to take time to start yelling. I just put the baby down on the bed and started CPR.”
Waksmunski came back into the room and hit the panic button.
Christo continued CPR until the hospital staff took over.
“He was death blue,” says Christo. “I know what a dead baby looks like, and when I put him on the bed to do CPR, I thought he was dead. I truly did.”
Although the stress of the past couple months could have put Christo over the edge, she admits that remaining calm in the face of a crisis is her strongest trait.
“In times of stress, if someone is hurt or sick, I am able to remain calm and not lose focus. That quality saved my son’s life,” says Christo.
“When it comes to health, and I think that’s because I was raised by a mother who was always ill, I’m always calm,” Christo continued. “I’m always able to hold my head, and that’s how I was. When that happened, it just felt like my brain had split into 20 pieces. It was like ‘OK. Remain calm. OK. Start CPR.’ All these little things. I didn’t lose it until after I stepped away and they started working on him.”
“You became a mom again,” recalls Waksmunski.

More rough days ahead
It turned out that Wyatt, and apparently Shane as well, had a reaction to the morphine given to them after surgery, and it suppressed their breathing. They were both moved back into the pediatric intensive care unit.
“There were a number of times they needed advanced care to resuscitate after that,” says Waksmunski. “They were in real critical care for that time period.”
The next day, after a long stressful week, much of it spent at the hospital, the Waksmunskis checked in on their sons before heading home to see Jesse and to sleep in their own bed.
When the phone rang sometime after 8 p.m. that night, it was not good news. Wyatt was being rushed back into surgery. His incision had opened and his bowel was exposed, putting him at high risk for infection. The Waksmunskis set out on the two-hour drive back to the hospital.

Mary Anne Christo looks at Wyatt while in his crib at Janet Weis Children's Hospital in Danville.

During surgery, one of Wyatt’s lungs partially collapsed and he was placed on a ventilator.
Back at home the next night, the surgeon called about Shane. His incision was leaking and there was again concern about infection.
The next morning, they were advised that Wyatt’s condition had worsened and he was being moved into isolation in the PICU as it was suspected he had a virus or an infection. His lung hadn’t improved and he would remain in a drug-induced coma and on a ventilator. Later in the day, another call advised them that Shane may be heading back to surgery.
The following day, Wyatt was improving and plans were made to begin weaning him off the ventilator, but later in the day, he crashed again.
The stress was clearly getting to the Waksmunskis. Almost every day they were faced with life-and-death situations.
And it wasn’t getting any better.
The next evening, after leaving the hospital and heading home, they got a phone call just a mile from their home. Shane was being rushed into the operating room. They emptied their suitcases, filled them with clean clothes, and headed back to the hospital.
Shane came out of surgery around 2:45 a.m. He was put on a ventilator as his left lung wasn’t ventilating.
After a few days with no major incidents, medical personnel again discussed sending the boys home.
But again, things went awry.
On Father’s Day, just after midnight, the phone rang. Wyatt was running a fever and his white blood cell count was very high. After a spinal tap, doctors suspected meningitis or some other type of infection. There was even some concern about leukemia.
Shane was showing similar signs; no fever, but his white blood cell count was rising. The boys were put on antibiotics to fight the infection.
“They really went through a couple-week period where it was really life or death, because they weren’t reacting well,” recalls Waksmunski. “They were having infections. They kept going back into surgery and what had happened was they took a beating on their little bodies, and then that’s when they put them both on ventilators and put them in a drug-induced coma for a few days to rest them, because they said ‘We can’t keep doing this. They’re not going to survive.’”
Near the end of June and after almost four months of hospitalization and weeks of life and death moments, the twins began to have more good days than bad. They were still fighting infections and setbacks, but they were feeding and slowly growing stronger. It also appeared the fundoplication surgery was working.
“They’re feeding, and they’re feeding by bottle,” says Waksmunski, “and they are not having the apnea and heart rate issues. They seem to be doing better.”
Although the twins were still in the seven-pound range a couple weeks after surgery, their ability to keep food down was enabling them to start gaining weight — something they both desperately needed.

A long time coming
After months in the hospital, thousands of miles in the car, tens of thousands of dollars in gas, food and hotel expenses, and over $2 million in medical expenses, the time finally arrived.
Shane and Wyatt were coming home!

The Waksmunski's SUV heads up the driveway on July 5 with Wyatt inside. Wyatt spent the first four months of his life in a hospital.

On Friday, July 2, Waksmunski made the following post on Facebook:
“TODAY!!! We are heading to the hospital soon to get Shane. HEY SHANE, Mama and Papa are coming to bring you home, again … for good! Wyatt, coming back Monday for you so pack your bags and get ready to start life at home. Four months is way too long to stay in the hospital. One day, we are going to Disneyland!!!!”
And true to those words, three days later, Wyatt came home.

Keep reading the TIMES NEWS for future stories on the Waksmunski family and their journey with Down syndrome. You can also log on to the TIMES NEWS website at www.tnonline.com for this and all of the stories in the series, “Down syndrome: A family’s journey.”

Feeding tubes and fundoplication

By AMY MILLER

amiller@tnonline.com

Over the last few months, Shane and Wyatt Waksmunski have experienced numerous treatments to help them take in essential food and nutrients; as well as be able to keep it down. Here is a list of procedures and devices that have been used to help the twins grow stronger.

Big brother Jesse checks out one of his new baby brothers after Shane came home from Janet Weis Children's Hospital.

Fundoplication surgery
Fundoplication surgery is used to help individuals with chronic gastroesophageal disease or GERD.
According to Dr. Ahmed Hasan, chief of gastroenterology at Blue Mountain Health System and a board certified gastroenterologist and internist, GERD occurs when the lower esophageal sphincter (LES) valve, located at the base of the esophagus, does not fully close, resulting in stomach acid and contents backing up into the esophagus, causing excessive heartburn, overall discomfort, and sometimes vomiting.
When GERD or acid reflux cannot be controlled by medications in children, fundoplication surgery may become an option.
Dr. Ronald Scorpio, director of pediatric surgery and surgeon-in-chief at Janet Weis Children’s Hospital, and the surgeon who treated Shane and Wyatt, explained that fundoplication is “an operation to create a valve at the bottom of the esophagus to prevent food from leaving the stomach and going back into the esophagus.”
The procedure, which takes a portion of the upper stomach and wraps it around the base of the esophagus, will usually restore the proper function of the LES without obstructing food intake.
Scorpio noted that excessive acid reflux and GERD in infants is typically more severe and could cause pneumonia or other complications.
There are benefits and risks to the surgery, Scorpio and Hasan both explained.
Benefits to having the fundoplication surgery include the improvement of digestion in the patient, no more reflux, and helps children get the nutrition they need.
Risks include trouble swallowing, not being able to vomit or belch, infections at the surgery site, anesthesia reactions, and the procedure not taking and becoming undone.
Scorpio said that the procedure is usually a long-term fix to a child’s reflux problem, but sometimes it fails. In children with health problems, a higher failure rate has been reported. If the procedure fails and symptoms return, the child is reevaluated to see how severe the reoccurrence of reflux is and if surgery is necessary or if it can be managed through medications.
Feeding tubes
There are four types of feeding tubes that the twins experienced: NG-tube, NJ-tube, G-tube and MIC-KEY button.
The NG- and NJ-tubes are both short-term feeding tubes that allowed the infants to receive the nutrition and medications they needed.
Both tubes are passed through the nasal passage. The NG-tube, or nasogastric-tube, ends in the child’s stomach. It is usually inserted to help the stomach drain or to give the child the food he needs to survive.
The NJ-tube, or nasojejunal-tube, goes one step farther. After being inserted into the nose, it travels through the stomach and into the small bowel or jejunum. The child is then given food and medications without worrying about reflux.
A G-tube, or gastrostomy-tube, is similar to the NG- and NJ-tubes, in that it provides a way for the child to receive necessary nutrition.
The G-tube is inserted directly into the stomach through the child’s belly wall. It is done through a procedure known as esophagogastroduodenoscopy or EGD. During the procedure the doctor cuts a small incision into the left side of the abdomen and inserts a flexible tube with a special tip or balloon into the opening.
Scorpio added that a child who has the fundoplication surgery usually has a G-tube.
The MIC-KEY button functions the same as the G-tube, except instead of a tube extending from the child’s body, a port or button is inserted into the incision and lies flat on the belly.
Scorpio said that when it is time to feed the child, a flexible tube is attached to the button and then functions like a G-tube.

A Family's Journey

2010-07-19T18:48:00.000-07:00

Down syndrome: A family’s journey

Posted on July 19, 2010 by Times News editor

In March, Mary Anne Christo and her husband, Eric Waksmunski, were blessed with twins.

Wyatt Waksmunski, left, sleeps as his twin brother Shane cries during a visit to Wyatt's crib in the hospital. (All photos by Bob Ford, Times News Photographer)

It was a difficult pregnancy and doctors determined the babies had to be delivered early.
Anticipating the usual complications faced by premature babies, the Mahoning Township family was devastated to learn both of their precious little boys have Down syndrome.
The next few months would be filled with countless sleepless nights, hotel stays and hospital vigils. The shock and grief Christo and Waksmunski first experienced is waning and they have accepted that their lives have changed forever.

For Christo, the dreams she had for the twins as she awaited their birth are no more. She has learned she can still dream, but they are different dreams now.

Their priorities have also changed. What was important in the days before the twins were born — in Waksmunski’s case, the ups and downs of his beloved New York Giants or Mets — is no longer important. Time once spent watching a game is now spent online, where he may be learning more about Down syndrome or researching a recommended medical procedure.
After too many nights going to bed, praying their babies would not die as they slept, the couple has learned to take one day at a time.

For as traumatic as this experience has been for the family, it has also opened their eyes and given them passage into a new world, a community of parents of children with special needs.
It is not a life they would have chosen had they been given a choice, but it is one that has embraced and supported them as they struggled to deal with often frightening and stressful days, filled with life-and-death decisions.

Several weeks after the twins were born, Waksmunski created “Shane and Wyatt’s Journey with Down syndrome,” on the social media network Facebook.

While it initially started with family and friends, it quickly grew and has attracted nearly 1,100 supporters from around the world.

Many of those who joined have children with Down syndrome or other disabilities.
To tell their story, and to reach out to other families who may face a similar experience, the Waksmunskis have agreed to open their home and their lives and share this special journey in an ongoing series in the TIMES NEWS.

Chapter 1: A difficult pregnancy

By KAREN CIMMS
kcimms@tnonline.com
It was Sept. 2, her 42nd birthday, when Mary Anne Christo learned she was pregnant. She and her husband, Eric Waksmunski, 46, were looking forward to having another child. Their son, Jesse, was 2.

Eric Waksmunski and his wife Mary check on Wyatt before going to Shane's room during a hospital visit.

Days before Christmas, the Mahoning Township couple received another unexpected gift when they learned they would be having twins, two more boys to be exact. The family was overjoyed.
The babies were due May 9, Mother’s Day.

Almost from the beginning, Christo’s pregnancy was difficult. Within a week of getting the news, she developed hyperemesis, an almost disabling form of morning sickness that lasts all day, every day. As soon as she drank any fluid, she began vomiting, sometimes up to 50 times a day. The illness prevented her from working and required weekly visits to the doctor, and then the hospital, where she received intravenous fluids to keep from becoming dehydrated. She was eventually put on a medication given to cancer patients undergoing chemotherapy to help with the nausea and vomiting. It didn’t.

“It’s just hormonal,” said Christo, a registered nurse, who, like her husband, is originally from South River, N.J. “I have no idea why I got it, and only a percentage of women will get it. I got no relief from the medication. I remember thinking I could go to 38 weeks (a normal pregnancy is 40 weeks), and when I found out I was having twins, I was thinking I could possibly go even earlier.”
After experiencing the same thing when she was pregnant with Jesse, Christo knew delivering the babies would be the only relief she would get from the almost constant vomiting.
“You’re so dizzy constantly, as if you are out on a bad sea. Usually when you vomit, you feel better. But with this, you cannot get a reprieve. Your head is always spinning and you have to lie down all the time,” she said.

She knows of only two other people who have had the same experience.
According to the Hyperemesis Education and Research Foundation, approximately 10 percent of women will terminate a pregnancy due to complications of hyperemesis, and many more consider termination out of desperation. Failure to treat or insufficient treatment can result in metabolic imbalance and organ failure, and termination of the pregnancy could be recommended to save the life of the mother.

Shane locks eyes with his mother during one of the parents' hospital visits.

“Years ago, women would die,” said Christo. “You can’t take any fluids in.”
She was so sick when she was pregnant with Jesse that at six months, she didn’t even look pregnant. That was not the case with the twins.

Although she continued to suffer with the hyperemesis, her uterus was getting quite large — larger than it should be.

Having failed a quad screen test (a maternal blood test given between the 16th and 18th weeks of pregnancy and used to determine the risk of delivering a baby with an abnormality), it was recommended that Christo undergo a level 2 (or high level) ultrasound to give the doctors a better look at what was going on inside her uterus.
After the test, on Dec. 21, the couple learned Christo was carrying twin boys. They were told it was common to fail a quad screen when carrying multiples, and that the test showed no sign of any abnormalities in either baby, other than the amniotic sacs (the membrane that surrounds the baby and is commonly known as the ‘bag of waters’), appearing to be a little large.
It was something the doctors said they would keep an eye on.

“We left elated, thinking ‘Oh my goodness! We’re having twins. It’s the greatest thing. They’re both healthy and no problems!’ And that was probably the best Christmas I had,” said Christo.
But by early January, things started going down hill, and by mid-February, the pregnancy was in jeopardy.

“I was in the hospital probably two weeks before I gave birth to them because I was so ill,” said Christo, who had also developed polyhydramnios, which was causing an excess of amniotic fluid in the sacs. Polyhydramnios could have one or more causes, such as maternal diabetes mellitus (high blood sugar) and Down syndrome. It can also cause cord prolapse, which can result in the death of the fetus. The doctors also determined the placentas for both babies were defective.
As the amount of amniotic fluid continued to build up, Christo said her uterus was becoming “enormous.” One doctor said she was “a walking balloon, like a ticking time bomb.”

“The sacs could have ruptured from contracting,” Christo explained. “The uterus couldn’t handle all the fluid.”

Eric Waksmunski pulls the covers back to get a look at Wyatt during a hospital visit.

The buildup of fluid was causing serious problems for the babies.
“I was having an issue with my cords,” said Christo. “Baby B, who was Wyatt, his cord was closing. They were saying he wasn’t getting (enough) oxygen. They weren’t really sure, and they thought if they tapped me, and pulled fluid out of the sac, maybe that would give the cord some relief.”

The doctors removed a liter of fluid from “Baby B’s” amniotic sac, but the cord was still prolapsed. They could have tried the same procedure on “Baby A,” which was Shane, but did not want to keep poking the placentas.

Hoping to learn what was wrong with her placentas, Christo asked the doctor to send the tapped amniotic fluid out to be tested. She remembers the perinatologist tried to discourage her, saying testing wasn’t necessary as they had no concern about any type of abnormalities with the babies.
It would be a week before the results came back.
In the meantime, an early birth was looking more likely.

“They were monitoring the babies every day,” said Waksmunski. “She was hospitalized at that point and every morning she started with the ultrasound. They were monitoring the babies, the cords, the flow through the cord, and they were just holding off as long as they could.”
In preparation for an early birth, Christo was given betamethasone shots. A steroid, betamethasone is used to further lung development in a fetus when an early delivery is expected.
“It’s a two-shot process,” said Waksmunski. “They have to go a week apart, so once they start that process, you know you’re going to be early.” They gave her that second shot on a Friday. “They told us ‘tomorrow’s the day; get the doctors, we’re going to get the OR ready’.”
Christo was still 10 weeks away from her expected due date, but the risk to the babies was too great. To wait any longer could mean the loss of one or both of the babies.
“They said that Wyatt was probably within a week of passing, because his placenta and his cord were so bad,” said Waksmunski. “Every day they would make the decision, ‘is he better in mama or better outside?’ And then finally, they got to the point where they said, ‘that’s it, we got to go get him’.”

While taking one baby and not the other was not an option, it would only have been a matter of time with Shane, as his placenta was also deteriorating.

“Wyatt was just in more of a critical state,” added Waksmunski.
Doctors were unable to give the couple any answers as to why Christo was having so many problems.

“They said we were actually lucky,” added Waksmunski. “Some people they say, who have defective placentas, go through that process in their 20s (weeks), and deliver in their 25th or 26th week, and we were able to hold off until 30. They said there is a big difference between 30 and even 28 weeks and the development and the problems the babies could have.”
The couple began to prepare themselves for an early delivery. Having a Caesarian section with her first child, Christo expected to have a second one with the twins, just not so soon.
“So we knew the day before, and the only thing you are thinking is, they’re going to be early,” said Waksmunski. “So they might spend some time in the NICU (neonatal intensive care unit), depending on how they develop, and you know, you’re OK.”

“My whole thing was what is a three-pound baby going to look like,” said Christo. The nursing staff secured permission from the mother of a premie for Christo to see her baby.
“I just remember thinking, ‘Oh what a beautiful little baby. That’s fine, three pounds.’”
She knew what to expect, and was prepared, but neither she nor Waksmunski were ready for what happened next.

“When I think of the next day, oh my God, how my life changed,” recalled Christo.
Shane and Wyatt were born on Saturday, March 6. Doctors immediately suspected that Wyatt had Down syndrome, but were not sure about Shane.
On Monday, they received the results from the amniotic fluid Mary had requested be tested — Wyatt had Down syndrome; further tests proved that Shane did as well.
The odds against both boys having Down syndrome, especially being fraternal twins, were astronomical.

The Waksmunskis were devastated.

“All we did was cry for several weeks,” said Christo. “I felt like I lost a baby. I mourned as if I had lost a baby. I lost the children I thought I was going to have. It’s truly like a death, because you envision a life with these children and you anticipate for them, their future, and all the dreams you have, and then when you have them, when you are told they have Down syndrome, all that changes.”

With time, the shock and grief melted into acceptance and an understanding that their lives have changed.

“I truly, truly take life one day at a time,” she said. “People always say, you should just live for today, and I didn’t. I would dream for this in the future or this, or think of this, or 10 years down the road, and I truly only live for today, where I didn’t before.

“I really felt like, in the beginning, when this first happened, like I couldn’t dream, because what I had dreamed, was no longer an option anymore, so I just felt like I couldn’t dream anymore, but now, I’m just dreaming different dreams,” said Christo.
Waksmunski said his priorities have changed.

“What was important on March 5 is no longer as important on March 6 for us, even silly things. I’m a big sports fan, and I have yet to sit down and watch a complete baseball game this year. I find myself doing medical research. I find myself doing things to take care of my kids. I go to the hospital, and there was a time when it was hard to get me away from the TV, and today, is that the most important thing? So the Mets lost, so what? I think you learn how fragile life is.
“We’ve gone to bed many nights, hoping that our kids don’t die overnight. And that changes your perspective on life,” he said.

The first few months of Shane and Wyatt’s journey have been difficult. The boys spent many days fighting for their lives.

As the Waksmunskis faced these challenges, they opened themselves up to a new community where they found not only support, but became part of a new family that has embraced them, shared their stories, their ups and downs, and helped them navigate a new path, not the one they anticipated, but one that promises to have its own joys and special moments.

Next month, read about Shane and Wyatt’s months-long hospital stay and their long-awaited homecoming.

What is Down syndrome?

By AMY ZUBEK
azubek@tnonline.com
According to Dr. Brian Skotko, a physician in the Down syndrome program at Children’s Hospital Boston and a member of the board of directors for the National Down Syndrome Society (NDSS), Down syndrome is “the most common chromosomal condition in humans,” in that one out of every 733 single-baby births will have Down syndrome.
“It’s a condition where the person has extra DNA material,” he said.
According to the NDSS website, which Skotko recommends, the extra DNA material is “usually caused by an error in cell division called ‘nondisjunction.’ Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two.”
There are three types of Down syndrome: Trisomy 21, Translocation, and Mosaicism.
Each type has no known cause or cure and affects people in all races.

Trisomy 21 Down syndrome
Trisomy 21 is the most common form of Down syndrome, affecting 95 percent of all individuals diagnosed with the chromosomal variation.
The DNA error occurs prior to or at conception, when a pair of chromosome 21s in either the sperm or the egg fail to separate properly.
The extra chromosome is then reproduced in every cell that is developed, resulting in 47 chromosomes being present in all cells, rather than the normal 46.

Translocation Down syndrome
Translocation is known to affect 3 to 4 percent of individuals with Down syndrome.
According to the NDSS website, “part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.”
This is the only form of Down syndrome that can be inherited, depending on the parent’s genetic material.
According to the Mayo Clinic website, if one of the parents is a “balanced carrier” of translocation, meaning that their genetic material is rearranged in some way, the odds of a child having Down syndrome can range from 3 to 12 percent, depending on which parent is the carrier.

Mosaicism Down syndrome
Mosaicism is the most rare form of Down syndrome, affecting only 1 to 2 percent of individuals with this condition.
It occurs when three copies of chromosomes are replicated in some of the cells during embryo formation. This means that some cells will have 46 chromosomes, which is needed for proper development; while others will have 47.
Editor’s note: Further investigation into Down syndrome, including causes, symptoms, diagnostic methods and more will be published in future installments.

Parties and Friends

2010-07-17T10:33:00.000-07:00

Stephen's best friend, Billy, had a birthday party this week! Both Stephen and Andrew got to spend the night and go swimming and we all attended a BBQ in Billy's honor, complete with presents! Here are some pics of the wonderful day!

One big hurdle

2010-06-06T14:28:00.000-07:00

We jumped over one big hurdle this past week. We are now Stephen's legal guardians. I don't know about other states, but in the state of Kansas a child approaching the age of 18 needs to have a guardian appointed if they cannot make their own life care and financial decisions due to a developmental disability. It makes it a lot easier later on when the child is in need of certain services, the guardian can argue on his or her behalf. Even though we are his parents and it seems crazy that we have to jump through these hoops, it really does need to be done. June 4, 2010 we became our son's guardian. That was a day I had thought about and worried about since he was born. Would we know what to do? Would we get it done in time? Would we be able to get all the IQ testing done and psychological reports prepared in time? Yes! It all fell into place, but that is because we planned and prepared. I feel sorry for those children who really should have a guardian, but their parents either do not know it needs to be done, or simply do not care. They might miss out on services that really should be available to them and that could affect them the rest of their lives.

A wonderful place in Chicago, IL for our children and loved ones with disabilities

2010-04-17T12:51:00.000-07:00

http://cbs2chicago.com/video/?id=63973@wbbm.dayport.com
This is a story of a place in Chicago that works with people with developmental disabilities. I believe they also can live there as well. It was featured on CBS Evening News with Katie Couric on April 16, 2010. It looks like a great place!

World Down Syndrome Day!

2010-03-21T12:15:00.000-07:00

Let's celebrate!! Down Syndrome is a wonderful thing! We need to get the word out to others that Down Syndrome will bring incredible, WONDERFUL things to your life! Share the link below with your family and friends.
www.worlddownsyndromeday.org

Learning How to Ride a Bike

2010-03-16T22:09:00.000-07:00

Stephen is learning to ride a bike without training wheels this week. A great organization named Lose the Training Wheels has come to town. They are wonderful! Click on this link to go to their page: http://www.losethetrainingwheels.org/

First Downs for Down Syndrome

2010-03-06T11:58:00.000-08:00

Stephen's school raised funds for First Downs for Down Syndrome this past year. There was a presentation on March 5, 2010 at his school. He's the one in the white jersey with red numbers.

Article in People Magazine

2010-02-20T13:26:00.000-08:00

If you are in your store and you see this issue of People Magazine, BUY IT! There is an article about Andrea Roberts, founder of Reece's Rainbow, an organization that helps people adopt children from other countries that have Down Syndrome. If not for this organization, some of these children would be left to die in institutions for the simple fact that they have Down Syndrome and are seen as unacceptable in society, only to be thrown away like common trash. Let's help change people's perceptions about these wonderful angels! Visit Andrea's organization at www.reecesrainbow.com. You won't be sorry you did!

My boys

2010-02-19T15:45:00.000-08:00

Here are some recent pics of the boys... Stephen colored a page with Mr. Krebs on it while I was fixing dinner the other night. Andrew was holding the dogs while waiting for his dad to open his birthday presents! Both of them are great kids!

Wonderful birth story from a wonderful lady

2010-02-05T19:18:00.000-08:00

I found this site posted on another blog. It is a wonderful story that will make you cry. If you have a child with Down Syndrome, it will take you back to the first moments after your child was born. This lady is a very talented writer, and I look forward to reading more posts from her. Click on the link to read the story. enjoyingthesmallthings.blogspot.com

That's God

2010-01-12T15:06:00.001-08:00

Click on the link below to play a new song by Jo Dee Messina. The single is due to be released on January 19, 2010. I can't wait until she releases her next album!

That's God by Jo Dee Messina

More Jo Dee Messina music on iLike

A Great Christmas

2009-12-27T15:15:00.000-08:00

This is Stephen modeling one of his shirts and set of wristbands he got for Christmas. This was by far his most favorite shirt. He's been asking for this shirt for months... Everytime I was on the computer, he would come over and asked to look at it online. Both him and his brother had a wonderful Christmas this year. We were alot better mentally as a family this year, last year we didn't know if my husband would have a job one week after Christmas, but this has been a year of overtime as he works for General Motors and has been one of the lucky ones.

We have been blessed this past year. Their grandpa has had multiple hospitalizations, including two times for pneumonia and once for pacemaker surgery on October 19, 2009. We celebrated my sister's birthday in the waiting room while they were operating on dad. That's a birthday she'll never forget! Grandpa had a stint in rehab so he could strenghten his walking skills after his last hospitalization. Now he is back home with us, back to being mobile the way he was before the surgery, which helps us out tremendously. If he couldn't get around on his own, he wouldn't be able to keep living with us. Thank God for those precious miracles!

Have a blessed and wonderful 2010!

Merry Christmas 2009

2009-12-25T12:19:00.000-08:00

We wish you all a very Merry Christmas and a safe, warm and loving 2010! The pics are of our tree and presents before the boys see them - and during the opening of the presents! Happy Birthday Jesus!

Bowling Fun

2009-12-05T00:04:00.000-08:00

Our local Down Syndrome support group sponsored a bowling party a couple of nights ago for the teens. My son had a blast! Here are some pics of him having a great time! He loves to bowl and bowls on a league with other people with special needs. He doesn't do too bad!

Happy Thanksgiving

2009-11-26T16:54:00.000-08:00

We've already had our wonderful turkey dinner, and now the boys, dad and Grandma are playing cards.

I hope everyone had a wonderful Thanksgiving today!

Imagination and the WWE

2009-11-26T16:49:00.000-08:00

Stephen has quite an imagination, thanks to his younger brother who has introduced him to a whole world of things! One of them is the World Wrestling Entertainment, WWE for short... He has several wrestling rings and figures... This is what I found one day when I walked in his room.

Speech about the Dangerous Myths of Down Syndrome

2009-11-22T20:18:00.000-08:00

The following is a speech prepared by the 14 year old daughter of one of my friends that lives in Texas. Such insight for a 14 year old!

A Dangerous Mythology by Riley Moreno

Webster's Dictionary defines a 'myth' as a popular belief or tradition that has grown up around something or someone; an unfounded or false notion.

Throughout history, people all over the world have made up myths to explain things they didn't understand or that frightened them. When we --modern, civilized Americans-- come across these myths in literature, they strike us as childish and illogical. Yet ironically, we cling to many modern myths without realizing it.

Hello. My name is Riley Moreno, and I would like to thank you for the opportunity to speak to you today. Today I am going to counter three myths about Down syndrome. These myths are: first, that people with Down syndrome cannot form meaningful relationships; second, that people with Down syndrome can't grow and learn; and third, that people with Down syndrome can't contribute to society.

When I say the words "Down syndrome,' what do you think about first? It might be a set of facial features, or a certain way of talking. It might be the words "mental retardation." You might know someone with Downs, and might remember their warm smile and friendly nature.

Most myths are harmless. But myths about Down syndrome are deadly. Each year, 90% of the parents who find out through prenatal testing that their baby will be born with Downs end up believing these myths and choosing abortion.

Think about it: our society condones--even encourages-- the extermination of a whole group of people based on their genetic make-up, due to a genetic variation that is "neither fatal nor contagious, but merely undesirable."* The media calls it a cure. But when Hitler did this, it was called genocide.

If you have heard me speak about Down syndrome before, you've probably heard me talk about my little brother. I've talked to many people about what a blessing he has been to me and our family, and how I've come to realize Down syndrome is just another kind of normal.

But today, I'm going to take a chance. I'm going to get bold. In the past, I've spoken about the 90% abortion rate. Today, I'm going to lay the blame on a society that has decided to take the easy way out.

What does this society find so threatening about Down syndrome? I'll tell you what I think it is: I think it's because we live in a desposable society, where things that are seen as broken are discarded. The world doesn't see people with Downs as different, but as broken, so they throw them away. Just like a broken shovel or pencil. Get rid of the broken one. It is worthless. It is without value.

But these aren't things: they aren't tools or pencils. They are human beings.

We can easily determine the value of a pencil. I can buy a whole box of them at Target for about $2. But how do you determine the value of a person? I'll tell you how the world determines it. the world determines value based on some idea of perfection. The closer you are to that ideal, the more value you have.

My concept of the value of a human being comes from a divine Creator. But realizing that the whole world doesn't agree with me, let me propose some more concrete criteria.

How do we decide the value of a person? Could we base it, in part, on relationships? Women are often told that a child with Downs won't be able to form meaningful relationships. THIS IS THE FIRST MYTH THAT I WOULD LIKE TO CHALLENGE.

Let me tell you the story of a young man named Sterling. He lives at a ranch for people with cognitive disabilities like Down syndrome. He has tons of friends on the ranch, and he loves working with the animals. But Sterling has one special relationship. He's engaged. He met his fiancee shortly after he was born, when she was already a year old. As he tells it, he likes older women! Sterling can't wait until the day that he and the love of his life stand up in church, in front of their families, their friends, an God, to become husband and wife.

NOW FOR MYTH NUMBER 2. How about personal growth? That's certainly something society places a high value on. Can a person with limited intellectual abilities really grow and learn? I wish I could introduce you to Lisa Smith, a young woman with Down syndrome that goes to my church. She wanted more than anything else to sing in the choir, but she knew that her voice wasn't good enough. So Lisa learned American Sign Language, and started participating in the music ministry in that way. That small step led to a career doing sign interpretation for popular Christian singer Sandi Patti on the Women of Faith tour. Lisa has even performed on national television!

So we've established that people with Downs can have meaningful relationships and that they can learn and grow. That's fine, but we live in a "what-have-you-done-for-me-lately" society. Can these individuals contribute anything to the world around them?

I can't tell you how many stories I've heard from people, telling me how their lives were blessed by knowing someone with Downs. At a garage sale my family organized to raise money for Down syndrome awareness, we met a man named Henry. Henry worked for the Mexia State School, and he organized a choir made up of residents. While he was telling us his story, Henry started to cry. He told us that he had started out thinking about what a great thing HE was doing for the residents. But what he came to understand was that THEY had done much more for him. They had taught him lessons about faith and joy, about being who God made you and being your best. I'd call that a contribution.

I hope you will remember the the truths that I have spoken about today: That people with Down syndrome DO have meaningful relationships; that they DO learn and grow; and that they CAN contribute to society.

Until we stand up and declare war on the easy button; until we--and by we, I include myself-- say that a little hardship in life is what built the character of the generations before us, and that it should be embraced and cherished; until we realize that life isn't always about smooth sailing, that sometimes it's wind and waves and rapids, and that's what makes it an adventure; until that time, the myth will grow. It will grow, and continue to destroy lives, and rob the world of a precious, underappreciated resource: people with Down syndrome.

*Archbishop Chaput, Denver

The International Down Syndrome Coalition for Life

2009-11-21T12:10:00.000-08:00

I found about this wonderful site today!

About IDSC

The International Down Syndrome Coalition For Life began after a group of parents and professionals saw a need for a pro life group in the Down syndrome community. We are a resource to those who are new to the world of Down syndrome. We offer support to parents and professionals. We are not here to dispense medical advice. We recommend you find qualified medical care.

Our Mission Statement:
IDSC For Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis. IDSC For Life will accomplish this mission by educating medical staff and families with a prenatal diagnosis as well as offering current and up to date information.
IDSC does not have 501c3 status

Contact us: IDSCoalition-owner@yahoogroups.com

For those in favor of genetic testing

2009-11-07T19:50:00.001-08:00

For those people that are in favor of genetic testing, I say the following:

"I wish genetic testing to reveal birth defects would stop - there are many "normal" kids that lose their lives because of false positives, and many BEAUTIFUL children with Down Syndrome are destroyed. I encourage people that if they get tested, and have a positive test come back, PLEASE run, and not walk, to an organization in your area and get all the information you can. Meet with people who have Down Syndrome. It is NOT the death sentence for you that you think it is. These people have wonderful lives because they ARE wonderful! I have a 17 year old son who can run circles around any "normal" teen his age. He gives lots of love, AND he does so many things to help around the house, it could make your head spin! Everybody that works with him, loves him. You would deny your child that just because he would happen to be born with Down Syndrome? What if your parents aborted you because they knew you would have brown eyes and not blue? Your child does not choose to have Down Syndrome, but that does NOT make him any less of a human being. Matter of fact, it makes them a BETTER human being. Ask anybody that has a child with Down Syndrome, I'm positive they will tell you the same thing!"

Halloween 2009

2009-10-31T17:24:00.001-07:00

Friday Stephen was in a play at school - He was the pirate on the left. Another picture of him is at the reception after the play. The other boy pictured with him is his friend Billy who is in his class. The last picture is of him passing out candy to the trick or treaters! He loves Halloween, and so do I!

SLEEPOVER!!!

2009-10-04T16:34:00.000-07:00

Stephen got invited to his first sleepover where the person was not a relative! His friend from school invited him. Here's some pics! I've also added a few pics of the historic town - Ft. Leavenworth, KS!

It's that time of year again!

2009-09-30T19:51:00.000-07:00

Stephen likes this time of year - he knows when he sees pumpkins, it means he will be seeing ghosts and going trick or treating with his daddy! Here's some random pics we took today!

2009-09-26T12:01:00.001-07:00

I wanted to thank the football coach and the lady that made the First Downs for Down Syndrome poster at my son's school. The coach has made my son and another boy in his class that both have DS honorary captains on the football team and they do the coin toss at all the home games! I ordered some special cookies for them and the boys delivered them during school! The coach and the lady were shocked and happy! The boys got high fives and hugs out of the deal!!! One good turn deserves another, I always say! Here's some pics of the cookies!

I Have A Voice

2009-09-23T15:46:00.000-07:00

What a wonderful video to watch!

Sometimes it's the simple things

2009-09-16T21:05:00.000-07:00

Today we went shopping at Target for a friend's upcoming birthday. After we were done shopping, Stephen wanted to sit in the circle out in front. He's fascinated by that circle. Sometimes it is the little things in life that brings us the most pleasure! You can learn alot from Stephen. You can learn to enjoy the time you are given on Earth. Sometimes I have to slow down so I can remember that lesson. Thank you Stephen. I love you.

Hot off the Press!

2009-09-14T13:26:00.001-07:00

Here's a newspaper article about First Downs for Down Syndrome and my son's high school. It has a great picture of the kids in his class that participated in the event!

First Downs for Down Syndrome

2009-09-05T17:47:00.000-07:00

Stephen's school is participating in First Downs for Down Syndrome this year.

The History of First Downs

For Down Syndrome

The concept of First Downs for Down Syndrome was created by Gene Stallings, best known for his outstanding football coaching career. Gene was assistant coach at Texas A&M, Alabama, and with the NFL’s Dallas Cowboys. He went onto head coaching duties at Texas A&M, the St. Louis and Phoenix Cardinals and finally, concluded his coaching career as head coach at Alabama.

In his book, Another Season: A Coach’s Story of Raising an Exceptional Son, Gene tells a personal story about winning national championships…and about raising and loving a son born with Down Syndrome. Gene started the FDFDS concept to raise funds and awareness.

In the early ‘90s, local parents learned about the First Downs concept of teaming professional football players with fundraising for Down Syndrome organizations, and thought it was a perfect idea for partnering with the Kansas City Chiefs.

The funds raised by FDFDS support two local organizations: the Down Syndrome Guild of Greater Kansas City—which provides education and support to individuals with Down Syndrome and their families; and the Down Syndrome Clinic at Children’s Mercy Hospital, a clinic that addresses the medical and therapeutic needs of children with Down Syndrome from birth through adolescence. FDFDS also provides significant funding for research taking place at Children’s Mercy Hospital that is exploring the link between Down Syndrome and leukemia.

There are hundreds of families in the Greater Kansas City area caring for a loved one with Down Syndrome. Without First Downs for Down Syndrome, these families would not have local access to vital medical, emotional, educational and support services.

FIRST DOWNS FOR DOWN SYNDROME'S MISSION

The mission of First Downs for Down Syndrome is to raise money for the Down Syndrome Guild, the Down Syndrome Clinic at Children’s Mercy Hospital and other Down Syndrome organizations; to raise awareness of Down Syndrome and the services of the Clinic and the Guild; and to create positive images of those with Down Syndrome.

ABOUT DOWN SYNDROME

Down Syndrome is the most commonly occurring genetic condition. One in every 800-1,000 live births, is a child with Down Syndrome, representing approximately 5,000 births per year in the United States. Today, Down Syndrome affects more than 350,000 people in the United States. It is one of the leading clinical causes of intellectual disability in the world.

All people with Down Syndrome have an extra, critical portion of the number 21 chromosome present in all, or some, of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome.

There is a wide variation in the abilities, physical development, behavior and personalities of individuals with Down Syndrome. Each individual has their own unique personality, capabilities and talents.

With appropriate education, therapy, and social support, the majority of individuals with Down Syndrome can lead fulfilling and productive lives.

First Downs for Down Syndrome

2009-08-29T20:56:00.000-07:00

This is a poster my son's school did to promote First Downs for Down Syndrome. It turned out pretty good!

Deanna Rose Children's Farmstead

2009-08-22T21:49:00.000-07:00

I took the boys and grandpa to a place called Deanna Rose Children's Farmstead, named after Deanna Rose, an Overland Park, Kansas police officer killed in the line of duty. It is a huge petting zoo with several play areas for kids and picnic areas! It is an incredible place. It is free to go through, however they exist on donations! If you live in or travel through the Kansas City area, please go there. It is just as fun for adults as it is children! They are located at 138th & Switzer. We even found money while there and turned it in (because, of course, it wasn't ours) and we were afraid someone might not be able to buy snacks to eat or food for the animals.

Traveling Titanic Exhibit

2009-07-25T11:16:00.000-07:00

This past Thursday night, we visited the Traveling Titanic Exhibit at The Legends Shopping Center in Kansas City, Kansas. It was free and it contained approximately 50 artifacts from the sunken vessel. I've visited the museum in Branson twice, and am in awe everytime I visit. My youngest son LOVES the Titanic. He watches the movie everytime it's on tv and he really enjoyed our visit to the museum two years ago. Here's a pic of the trailers the exhibit is touring in.

Happy Birthday to my angel on earth!!!

2009-07-21T20:48:00.000-07:00

Happy 17th Birthday Stephen! We all love you!

Visiting Grandpa

2009-07-16T21:46:00.000-07:00

Here's a picture of Stephen visiting Grandpa at the hospital! Grandpa has double pneumonia (both lungs)...

Need Help with Financial Planning and Special Needs Trusts?

2009-07-11T11:08:00.000-07:00

If you are in the Kansas City are, or Las Vegas area, you are in luck. There is a wonderful organization called Special Needs Planning Center. Here's an excerpt from their website www.specialneedskc.com. They recently put on a seminar at my son's former school, the Lee Ann Britain Infant Development Center located at the Shawnee Mission Medical Center.

Special Needs Planning Center Blog To Distribute Information to Parents

Over the last five years The Special Needs Planning Center has been providing nearly 60 free educational workshops per year for parents of children with special needs. The goal has been to educate parents on the different issues that affect their children with special needs from their first IEP to planning for their care after the parents are gone.

In an effort to add to this and to allow The Center to provide more widespread education we are creating a new Special Needs Planning Center Blog. The new blog will be updated on two Monday's each month and provide parents access to updated regulations, planning tips and other valuable resources.

We'd also like to extend the invitation to parents and other providers to contribute. If you have topics you'd like to post and information you believe other parents will benefit from please submit the information via email to Heath at hburch@specialneedskc.com.

You can visit the blog and check for updates at www.specialneedsplanning.blogspot.com
Please contact us anytime with ideas, tips and resources we can provide to other parents.

Fourth of July Celebration

2009-06-28T14:17:00.000-07:00

Every year, the City of Basehor has an old-fashioned Fourth of July Celebration, complete with parade. Please join us if you don't have anything else planned!

Prayer Warriors

2009-06-23T21:32:00.000-07:00

I'm a prayer warrior, and I'm so excited about it! What is a prayer warrior? It is someone that signs up with www.reecesrainbow.com, who wants to say prayers for adoptive children awaiting homes with their forever families. This is something easy to do when you cannot adopt a child, but want to help out in some way! All you do is sign up and you are matched with a child, and they send you information in the mail, along with a picture of your child. My child happens to be in Eastern Europe, and she has the same name as my deceased mother, Claudia! When I found out the child's name was Claudia, I knew that I was doing this for God's glory! There are no coincidences where God is concerned! Everything happens for a reason. So please join me in saying prayers for this little girl, so she can find her forever home.

Claudia (30)

Girl Born March 5, 2004

SIGNIFICANT RISK, PLEASE ADOPT ME SOON!!

Claudia is a beautiful little girl with long brown hair and brown eyes. She wasn't real keen on saying "cheese" in her photo, but she is well loved and a happy girl. She was born with an oval window, but it may have closed on it's own. Claudia is very active and playful, high functioning, has many words, and is doing very well.

We are hopeful a family will come forward for Miss Claudia!

Contact Andrea directly for more information

I have $50 in my grant fund towards the cost of my adoption!

Help bring Alexander home to a wonderful home

2009-06-14T12:02:00.000-07:00

Click on this link if you are looking to adopt a beautiful boy into your home.

http://presentslove.blogspot.com

Band of Angels

2009-06-11T22:36:00.000-07:00

The following is a site that sells Calendars, t-shirts, jewelry, all benefit children with Special Needs. The calendars highlight children with Down Syndrome. I've bought several things from this company over the years and have never been disappointed. It is wonderful! www.bandofangels.com

Down Syndrome Guild of Greater Kansas City

2009-06-07T11:52:00.001-07:00

If you have a child or know of one with Down Syndrome in the Kansas City area, please check out the following organization:
http://www.kcdsg.org/index.php
We've been a member since 1992, when our oldest son was born. Back in those days, we used to meet at a daycare at 17th & Broadway, Cradles & Crayons. DSG has really come a long way since then! They work closely with the Kansas City Chiefs in a program called First Downs For Down Syndrome and the Chiefs also sponsor the local Buddy Walk, held every year.
http://www.fdfds.org/

Therapies and Treatment for Children with Special Needs

2009-06-07T11:17:00.001-07:00

When Stephen was born in July, 1992, the Director of a very special school came to visit us at the hospital after she received a call from my doctor. Her name was Lee Ann Britain. She came to the hospital and visited with us and told us of a wonderful program and school, the Infant Development Center at Shawnee Mission Medical Center. It was a school that provided therapies and schooling for children from birth through kindergarten. There was a waiting list to be at the school. My doctor's children had been peer models when they were little, so he had first hand experience and he REALLY pushed us into getting Stephen enrolled. We toured the school and was very impressed. We got a call when Stephen was 7 months old that he would be able to start at the school. An opening was created when another child had to have heart surgery, and would not be able to attend the school for a while. He attended IDC until he started kindergarten in 1997. His last day at IDC was full of tears. I cried, my husband cried, the teachers cried. We had become family. I still go over and visit and look at how they have improved the school. If you should ever have the chance to go there, I would encourage it. Lee Ann has since passed on many years ago and the school now is on its second director since Lee Ann died, but the care for our children is still the same. Wonderful and dedicated teachers and volunteers make this school what it is today! https://www.shawneemission.org/health-services/britain-infant-development-center.html

Typical Brothers

2009-06-07T10:26:00.000-07:00

Stephen (left) and Andrew (right) on a typical Saturday morning getting ready to fix breakfast! They get along so well. Stephen is 16 and Andrew is 12, and they both still play together as they have since Andrew was born. Andrew's always looking out for his big brother, helping him figure things out, helping him learn new things. They are so good for each other. If I only have one regret, is that I didn't have one more typical child to help out in later years with Stephen. It's going to be a big job for Andrew once we are gone. Once, when Andrew was four years old, I was driving him over to my sister's house and he made the announcement "When you and dad are gone, I will take care of Stephen." I about wrecked the car. Who would think a FOUR YEAR OLD would be thinking of such a thing? We never wanted him to feel that he had to, we've never told him that he had to take care of Stephen when we're gone. I guess he just wants to, without even being asked. Is he an awesome child or what? I love them both so much, more than my own life.

Do People Really Adopt Children with Down Syndrome?

2009-06-07T10:09:00.000-07:00

YES, they do! There are even waiting lists in some areas, isn't that great!

There is an organization that specializes in adoptions of children with special needs! I've heard that in some areas, there is a waiting list! Isn't that wonderful? There are people out there who will get to experience the love and joy that a child with Down Syndrome can bring!

Here is a link to their site:
www.reecesrainbow.com

If you know of someone wanting to adopt a child, encourage them to adopt one with special needs, they won't be sorry they did!

8th Grade Graduation

2009-05-23T21:00:00.000-07:00

Stephen is moving on to high school - he recently had his 8th grade dinner and school dance - here's a pic of him hanging with his friends at the dance!

Gone Fishing

2009-05-23T20:55:00.000-07:00

During the last week of school, we kept Stephen out of school one day to go fishing with his former teacher and her class from the elementary school. We had a FANTASTIC day! Here's a pic of him fishing.

Happy Mother's Day!

2009-05-10T12:05:00.001-07:00

Happy Mother's Day to all those moms out there, especially to those that have children with Special Needs! They make life challenging at times, but so worthwhile! I thank God for our angels on Earth!

Time for High School

2009-05-06T22:41:00.001-07:00

Stephen's IEP was last week. His current teacher met with Stephen, me and the teachers and therapists he will be working with starting next year in high school! I was apprehensive at first, which is normal anytime a child is going to be starting a new school, but I felt great after talking to the staff and taking a tour of the school. I think Stephen will have a great time and I really believe he will excel, as some of the stuff they teach him, he is already doing! My baby boy is growing up!

Birthday Party

2009-04-26T22:38:00.000-07:00

We went to my great great niece's birthday party (my nephew's granddaughter) and my kids had a blast! Here's a pic of Stephen waiting for them to blow out the candles and cut the cake!

Scary Drive trying to stay ahead of a Tornado

2009-04-25T18:24:00.000-07:00

We visited dad in Topeka at the VA Hospital. Driving home, we just got on I-70, and the sirens were going off. What do we do now? We have no idea where to go, there is nothing around... So we stayed on the highway, driving in horrible rain. We drove to the LeCompton exit, and the toll booth was empty - we got a free trip back to KC, didn't have to pay toll! We went south towards Lawrence, since the radio told us rotation was right over us. We went south, but saw this cloud, so we turned east to stay ahead of it... We went through Lawrence, Eudora, Olathe, then turned north and headed home, right towards the storm. A block from home, it started hailing on us and we pulled into the garage. Six years earlier, a tornado hit close by, and the rain and hail was identical to what we saw today. I've uploaded a pic of what we saw today.

Stephen at Christmas

2009-04-17T19:48:00.000-07:00

I completely forgot about this picture, until I stumbled upon it by accident...

Happy Easter!

2009-04-12T15:35:00.001-07:00

Christ is risen, Hallelujah!!!

WWE Fun

2009-04-04T12:01:00.000-07:00

On March 23, 2009 we went to the Sprint Center in KCMO to see the WWE wrestlers! Both boys love WWE and we try to go everytime there is an event in town. They always have a blast and we have fun watching them enjoy it so much!

Spring Break is Almost Over!

2009-03-21T11:40:00.001-07:00

Spring break is almost over, and it's time for hubby and the boys to go back to work! I never got spring break when I was in school!!!

World Down Syndrome Day!

2009-03-21T11:27:00.000-07:00

What a wonderful time for our children with Down Syndrome to be born. So many advancements in medicine, so many opportunities!

http://www.worlddownsyndromeday.org/

God Chooses a Mom for a Disabled Child

2009-03-15T10:18:00.001-07:00

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen ? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew."

"Forrester, Marjorie; daughter; patron saint, Cecelia."

"Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God ? She's so happy."

"Exactly," smiles God.

"Could I give a handicapped child a mother who does not know laughter ? That would be cruel."

"But has she patience ?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness ? Is that a virtue ?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it ! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint ?" asks the angel, his pen poised in midair.

God smiles. " A mirror will suffice."

My Special Child

2009-03-15T09:54:00.000-07:00

My Special Child

As I look at your face, my special child
I see a gift from God, so meek and so mild.
Your accomplishments may seem few and far between
But happier parents you have never seen.

With every move you make, my heart swells with pride.
My smile beams brightly from side to side.
You'll never know what it feels like to not be loved.
You are truly a gift sent from Heaven above.

As I look at you now I fully understand
That I won't be alone, God is holding my hand.
Life has a funny way of turning things around.
If we let Him take over, His love will abound.

I never knew true faith until you were born.
A special crown I have been given to adorn.
Only a few chosen parents will be able to say
"A special child has been sent to show me the way."

I'm so proud of you wherever we go.
I'll never be afraid to let my love show.
I thank God for you every day that goes by,
I'll never ask, "Why me, God, why?"

March 14, 2009

2009-03-14T20:36:00.000-07:00

Well, two different times today Stephen gave Grandpa Oreos. Stephen thinks Grandpa has to be eating 24/7 I guess!!!

It sure was nice today. Stephen went outside on the deck without his shoes, and of course, got a splinter in his toe! He knows better than to do that. I'm surprised he didn't take the dogs for a walk today, mabe he'll do that tomorrow.

What a helper!

2009-03-10T12:08:00.000-07:00

What a helper Stephen is with Grandpa. He puts his bib on him, gets his paper, coffee, breakfast, takes such good care of Grandpa on the weekends when he is living with us! What a joy my son is, and a tremendous blessing from God! Stephen even loads up the dishwasher, sets the table when it is time for dinner, he even gathers all of the items needed for dinner and brings them upstairs so we will know what he wants! He is such a trip!

A Wonderful Life

2009-01-23T21:41:00.000-08:00

I'm a lucky lady. Why do I say that? God chose me to take care of one of His angels with Down Syndrome.