FRONT PAGE ARTCLE on our family :)

Thursday, March 19, 2009
Boxer fights two battles

PREMATURE TWINS STILL A CONCERN

By Bud Barth Telegram & Gazette Staff
hbarth@telegram.com

WORCESTER — As if Edwin Rodriguez, Worcester's undefeated middleweight prospect, doesn't have enough on his mind already. Exercising, jabbing, bobbing, weaving, punching, ducking, winning.

And worrying.

That's a burden that the 23-year-old fighter carries with him 24/7, whether he's in the ring or not. Ever since his fiancee, Stephanie Rapa, gave birth in September 2006 to fragile 19-ounce "micro-preemie" twins, who were a full four months premature, Rodriguez has been fighting a war on two fronts.


There's his fledgling quest for the world middleweight championship, which resumes tonight with the aptly named "Homecoming" show that he's headlining at Mechanics Hall. He'll fight veteran Patrick Thompson of Lincoln, Neb., in the main event. And then there's the psychological ordeal of handling the ongoing health issues of his 2-1/2-year-old miracle babies, Edwin Jr. and Serena Lynn Rodriguez.

"Basically, they were born at the brink of viability," said Rapa, a 26-year-old College of the Holy Cross graduate who will enroll this fall at Western New England College School of Law, which has awarded her a partial academic scholarship. "It's still a very hot ethical debate about whether or not we should be resuscitating kids that are born in the 23rd week of gestation, and that's exactly when my kids were born."

The twins, who Rapa later found out were given less than a 30 percent chance at survival, remained in the neonatal intensive care unit at UMass Memorial Medical Center - Memorial Campus for four months after their birth, aided by incubators and respirators. Edwin Jr. came "very close" to dying more than once, and Serena's weight dropped to less than a pound during her darkest days.

"There were several times that we had family meetings with the neonatologists about whether we would continue to keep them on the ventilator or whether we wanted to withdraw life support - especially for little Edwin," Rapa said. "I'll never forget, one of them sat us down and said that (Edwin Jr.) had close to a zero percent chance of survival."

Since coming home the first time, the twins have been in and out of the hospital about a dozen times. Both had heart surgery and pneumonia, and both continue to have lung and breathing problems - particularly Serena, who was hospitalized in intensive care for seven days just three months ago with a respiratory virus. The twins also have vision problems and issues with balance and walking.

Serena also has a vocal cord that was paralyzed during her heart surgery. It affected her ability to swallow before surgery last summer repositioned it. It's still paralyzed, but the effect is barely noticeable in her speech, Rapa said.

But the biggest blow came Jan. 30 when the couple was informed that Edwin Jr. has hypotonic cerebral palsy, a relatively rare form of the brain injury that affects muscle tone, which is why he still can't stand up alone or walk.

That news, in particular, was a huge jolt to Rodriguez, a strapping, 6-foot, 165-pound specimen in perfect health.

"We knew that there was something going on," he said. "He wasn't walking, so we kind of were expecting it, but we didn't want to actually listen to the doctors tell us. Stephanie cried, I cried - it was not a good time. After being through so much, to hear that.

"But, you know, he's a happy kid and he's always got a smile on his face. I love Edwin and I'm happy he's here with us. We made the right decision (to maintain life support)."

Amazingly, just 2-1/2 weeks after getting that devastating diagnosis, Rodriguez went out and scored a third-round, four-knockdown TKO of Brad Austin in Biloxi, Miss., in what his manager, Larry Army Jr., said was the best performance of his career.

"I try to put (my worries) to the side a little bit and focus on the boxing, because that's how I'm going to be able to provide a better life for them," said Rodriguez, now 9-0 with six knockouts. "But they get sick a lot and they get pretty serious when they get sick, so you can't really put it aside. You have to deal with it and you have take care of them."

Both children are undergoing physical therapy. Edwin Jr. also requires occupational and speech therapy, and Serena will have speech therapy when she turns 3. Obviously, the twins need lots of care, which is handled primarily by Rapa with the help of her mother, Jamie Herrick, who lives nearby in Worcester.

On top of all that, Rapa and Rodriguez have taken in a foster daughter, 17-year-old Theresa Pickens, whom Rapa befriended while doing counseling work at the Boys & Girls Club of Worcester for the Massachusetts Society for Prevention of Cruelty to Children.

Pickens, who had a troubled upbringing, was in danger of ending up in the foster care system, possibly outside Worcester. That would have made it impossible for her to complete her senior year at Claremont Academy, where she also is a bona fide basketball star for Main South, a co-op team that draws from Claremont and University Park Campus School.

Rapa and Rodriguez, despite living in a cramped two-bedroom apartment, decided to take in Pickens.

"At first," Rapa recalled, "Edwin said, `Are you crazy?' I said, `No, I just have this feeling we're supposed to do this.' ... I just couldn't bear the thought of knowing that I could do something to help and then not doing it.

"She needs a roof over her head, she needs people that are going to care about her, and I knew that we could do both of those things. I just trusted that it's what we were supposed to do, and it's worked out well."

The roof over their head will get a little bigger very soon. This week, Rapa and Rodriguez expect to close on the purchase of their first house - a 3-bedroom, 2-1/2-bath, single-family home on Burncoat Street, which will provide more room for the five-member clan and lots of open floor space for Edwin Jr., who requires a walker.

Rodriguez said he doesn't even think any more about missing his chance at the Olympics because of the untimely birth of the babies. He and Rapa were scheduled to get on a plane for Oxford, Calif., and the Police Athletic League championships on the day the twins decided to show up.

Three days before they were to leave, Rapa had a routine doctor's appointment, where it was discovered that she was dilated and in preterm labor without even knowing it. Doctors tried to stave off the labor with bed rest and medication, but when Rapa felt her first pain, it turned out to be Serena's tiny foot stuck in the birth canal - she was a breach - so doctors rushed Rapa in for an emergency C-section.

After that, with the babies' lives hanging by a thread, Rodriguez's amateur career spun its wheels. Already a two-time national amateur champion, Rodriguez was upset in the USA Boxing championships and the National Golden Gloves, events he had won in the past, and his dreams of competing in the 2008 Olympics vanished.

"It messed up my whole rhythm," he said. "I didn't even think my kids were going to make it. They told us Edwin Jr. had a zero chance of survival and if he did survive, it would be nothing short of a miracle. Someone tells you that, it kills you. I don't even like to talk about it."

Does he ever feel cheated by the situation?

"Not at all," he said. "I feel remorse at not being able to have my kids be born healthy, but not about me not making the Olympics. My kids come first. The Olympics was only a one-time thing, but I would never choose them in the world in front of my family.

"I wanted to be an Olympian, but if I had to do it again, I'd choose my kids over that a hundred times - a billion times."

So, he turned pro instead and now has his eyes on a world title and a hefty bankroll.

"I'm going to make it as a boxer and retire, invest money in something good," he said when the subject of a post-boxing career was brought up. "A happy ending - the American dream."

After his terrible nightmare, it's only fair.

Boxing at the Hall
When: Tonight

Time: 7 p.m. (doors open at 6:30)

Tickets: $25-$50 (balcony), $75 (first row balcony), $60-$100 (floor), and $150 (ringside)

Live updates: www.telegram.com/sports

Main event: Middleweights (8 rounds) - Edwin Rodriguez (9-0, 6 KOs) of Worcester vs. Patrick Thompson (15-13-1, 5 KOs) of Lincoln, Neb.

Co-feature: Super bantamweights (8 rounds) - Dat Nguyen (14-1, 6 KOs) of Vero Beach, Fla., vs. Alex Baba (26-14-1, 19 KOs) of Doraville, Ga.

Undercard: Light heavyweights (4 rounds) - Valar Boise (pro debut) of Providence vs. Houston Crayton (0-3) of Brockton; Middleweights (4 rounds) - Philip Jackson Benson (2-0, 0 KOs) of Brooklyn, N.Y., vs. Dameon Mitchell (0-1) of New York; Welterweights (4 rounds) - Justin Reinhold (pro debut) of Fall River vs. Valdrin Muriqi (pro debut) of New York; Light welterweights (4 rounds) - Steven Ormond (2-0, 0 KOs) of Dublin, Ireland, vs. Jonathan Ocasio (0-3) of Philadelphia; Lightweights (4 rounds) - Ryan Kielczewski (3-0, 0 KOs) of Quincy vs. Aaron Chavez (2-1, 0 KOs) of Vero Beach, Fla.

Reader Comments
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I want to personally thank Bud Barth for writing this article. In a recent piece, Bud mentioned the twins, and without knowing, mentioned how they were born premature and now are healthy 2 1/2 year olds. Bud didn't know the continued struggles we, and most other, parents of 'micro preemies' face, and I felt it was important to share this with the public.
As a volunteer with the March of Dimes, I am committed to raising prematurity awareness, and, along with so many other, work to raise money to help find a 'cure' to preterm birth. I emailed Bud about wanting to get the word out about extreme prematurity and help the public understand just how much preterm birth effects the lives of the survivors and their families, and of course the families of those who do not survive. Like myself, more than half of women who give birth prematurely don't know why. Many are healthy women who 'did everything right.'
My hope is that families going through similar situations know they are not alone, and hopefully will join the cause to help fund research into prematurity prevention. It's so important that babies get their full 40 weeks!
I also wanted to reach out to families who have children with special needs. Disability awareness, equal rights, and inclusion are things we are very passionate about. We are extremely proud of our children!

Any families who may be going through similar situations can email me at rapa.stephanie@yahoo.com. Over the past two and a half years I have gathered a lot of information and support networks that I'd be happy to share!

So thank you again Bud Barth!
-Stephanie Rapa

Edwin Fights for his Family

March 17, 2009
EDWIN RODRIGUEZ FIGHTS FOR HIS FAMILY
By KIRK LANG

Middleweight Edwin “La Bomba” Rodriguez - billed by his handlers in press releases with the ambitious tag “The Future of the Middleweight Division” - knows becoming the next big thing at 160 pounds will not happen overnight, in a week, or even a year from now. “One day at a time, one step at a time, keep working hard and I’ll be able to reach the expectations,” said Rodriguez, who recently signed a promotional contract with promoter Lou DiBella.
Rodriguez’ next step is a main event fight against Patrick Thompson in his hometown of Worcester, Massachusetts. Thompson only has a couple of more wins than losses but don’t let the poor record fool you. He’s fought a who’s who of quality opponents and stuck around for the final bell against, among others, John Duddy, Giovanni Lorenzo, Joe Greene, Vanes Martirosyan, Sechew Powell and Ishe Smith.


Even though Thompson has a habit of hanging in there, Rodriguez (9-0, 6 KOs) wants to impress. In other words, he’s planning on scoring a knockout. While stopping Thompson would be an accomplishment in and of itself, Rodriguez also feels he owes the ticket-buyers an exciting fight, or at least an exciting finish. “They want to see knockouts and that’s what I’m going to give them, especially at this time, when the economy is so bad,” said Rodriguez. “They’re paying their hard-earned money to go see a fight and it’s my duty to give it to them.”

Rodriguez also knows he’s going to have some rabid hometown supporters cheering on his every move, his every punch. He’s fighting at Mechanics Hall, a few minutes away from his dad’s old convenience store. A native of the Dominican Republic, the 23-year-old Rodriguez relocated to Worcester, MA with his four brothers 11 years ago. He turned pro in January of last year after a 93-bout amateur career that included taking gold at the 2005 USA Boxing National Championships and becoming a national Golden Gloves champion in 2006.


Rodriguez, under the guidance of trainer Peter Manfredo, Sr., has slowly been getting rid of bad habits from his amateur days, such as leaning back from punches. “I learned to stay in there, duck and weave and sit on my punches more,” said Rodriguez. “I feel like I’m doing that a lot more and I feel like I’m hitting harder.” Manfredo has been with Rodriguez since his third fight.


“Fight by fight I’ve just been seeing improvement with what I’ve been doing in the ring. I just improved so much in the year I’ve been with Peter,” said Rodriguez.

Rodriguez isn’t just a guy who fights for himself or for shiny belts. His longtime girlfriend Stephanie and their two-year-old twins keep him motivated to put his heart and soul into this boxing game and not cut any corners.


Rodriguez can also draw inspiration from his children. They know what it’s like to fight as well. They were born very prematurely, just 23 weeks after concepcion (full term is 40 weeks). Each twin only weighed one pound and three ounces. The chances of survival were slim but they beat the odds. However, his son was recently diagnosed with Cerebral Palsy.


“[It’s] not good but he’s happy and I love him and we’re just working on strength and conditioning to get him walking,” said Rodriguez. “But he’s a good kid and I’m happy with the decisions that I made and I’m happy he’s here with us.”

Rodriguez said he probably works even harder in the gym because of his son’s disorder. “Yes, because I want to give him a good life and I want to be able to make enough so he could be all set, even after I retire, and after I’m not here anymore,” he said. “I want to make sure that my son and my daughter are going to be OK ,that they’re going to be living comfortable, so that’s what I fight for and that’s what I strive for.”

Every time Rodriguez steps in the ring he sees an opponent that is trying to take food off of his family’s plate. Any loss would set his career back and lessen his prize money. Every win, on the other hand, only makes the next check that much bigger.

Rodriguez doesn’t plan on letting Thompson put a blemish on the unbeaten record he has built up so far. He knows Thompson will come to fight and try to take him eight rounds “but I don’t think it’s going to happen,” said Rodriguez.


Whether Thompson goes the distance or not, Rodriguez knows his opponent won’t bow out easily. “He’s not one of those fighters that doesn’t put up a fight,” said Rodriguez, “And I need somebody that going to put up a fight because that’s what’s going to help me keep learning and be a better fighter. Like I said, one step at a time.”


Tickets are on sale at the Mechanics Hall box office, www.mechanicshall.org, Manfredo’s Gym in Pawtucket (RI), and the Boys & Girls Club of Worcester. Doors open at 6:30 PM/ET, first bout at 7:00 PM/ET.

UPDATE!!!

LOOOVED the school I went to see yesterday morning, and best news, it's our neighborhood school for the new house! (We should be in by April 1st.)
It is a 10 years young building...all handicap accessible. Integrated Pre-K...no life skills for Pre-K. At kindergarten they reevaluate for the best fit for the child.
Full time nurse and entire medical suite because many medically involved children attend this school. No worries about the kids having respiratory issues...there will always be a nurse there to attend to them if needed.
Many children with various special needs, so it is integrated and accepting.
Just a beautiful facility with a staff that is both comfortable and supportive of children with various abilities.
I am so relieved now! Plus, Edwin would be able to use his walker because everwhere outside of his classroom is very close, minus the library, but he would take the elevator with his aide to get there.
Great news! So happy we decided to buy our house in this neighborhood!!!!!

Wheelchair and Life skills?

What a day....What a reality check..What a crash of emotions.
Today I went to visit the 3rd preschool on my list. This preK is not close to the home we are buying but it is a completely handicap accesible school and many children with CP attend. The other schools I went to were neighborhood schools, and worth looking at, but not a realistic school for Edwin...simply not accessible for him.
But this school didn't start off with a good impression. The principal didn't rememeber speaking to me, nor did he remember our appointment. He was prety rude about it, acusing me of making a mistake...if it's in my planner I DO NOT mess it up! I am pretty organized like that. Kinda have to be when you have as many appointments as these former 23 weekers have!!!
Anyway, after a bunch of questions that didn't seem necessary, he asked if Edwin would be in life skills or integrated classroom. I was hit hard...we haven't spoken with EI about this. Life skills for a three year old??? I said I would assume integrated. He said,"well is he cognitively normal?" Well, not exactly. He is globally delayed, but is coming along well with new words weekly and more signs coming quickly now. "Does he know his colors?" Ummm....NO!!!!!! Neither does his twin who isn't cognitively delayed. She knows red and blue and that's about it.

Anyway, he took me down to the pre-K.
The life skills preschool consisted of a carpet, some toys, and an aide for each other the three students. There were Rifton chairs stacked up at the back of the room, but were not being used. The 2 children who were not walking, were being held in chairs by their aides, the boy who could walk was walking around on the carpet. This area was separated by bookshelves and other "stuff" to physically distinguish this area from the integrated program. In the integrated classrooom students were in chairs coloring and doing "work", playing in the sandbox, playing with the kitchen, and having fun. It was a stark contrast to the life skills area. The more the principal and I spoke the more he seemd to be insinuating that based on Edwin's CP, mobility issues, and language delay, he might be in life skills. He said, "the kids with physical disabilities and no language usually are in life skills."

I'm sorry, but at 3 years old, how can you tell a child would be best suited for life skills? There may be children where you could make that case, but 3 is so young and there is so much time to learn and develop skills they may not have at 3.
But it got me thinking, given Edwin's physical limitations and his global developmental delay, they might try to put him in life skills! This both broke my heart and got the advocate in me going. I called his EI coordinator and made sure we were on the same page of pushing for integration for Edwin. Thankfully she was. I also called a fellow Sped PAC mom who I knew had pushed for her child not to be put in life skills. She told me many principals want to put students with cognitive delays in life skills because they want their MCAS scores to be as high as possible, and students in life skills don't take MCAS. (MCAS is standardized testing through no Child Left Behind.) Because school are under so much pressure to have high scores, they try to "weed out" the highly involved special needs kids from potentially "bringing down" their school's scores. I was outraged, but can see that happening.
But one thing's for sure...It WON'T happen with my son. He does not need life skills in my opinion. He needs to be challenged and given an enviornment where he can flourish and be with peers in an interactive enviornment. We might have to fight for this, but hopefully everyone on the team will be on the same page.

Tomorrow, we will be seeing the school he is likely to attend, and I am very anxious about this after today's visit.

So I was a little emotional after realizing we might have people try to force him into a program I don't think is appropriate, but things got even more emotionally tough during his PT.

PT brought up getting Edwin a wheelchair. I started to cry. She felt bad. It wasn't anything I haven't thought about, but it was tough to hear someone tell you your child would likely need a wheelchair. After being told for 2 years that our son does not have CP and repeatedly being told he will be walking soon...few more months, by Christmas, by Spring, etc. it was tough to hear, even though I was always cautious and unsure of their predictions about him "catching up."

Anyway, Edwin is doing very well with his walker. The issue PT is worried about is that Edwin will have difficulty with long distances. If there is a school performance in the gym, Edwin will have to use his walker to get to the gym, and what happens if he gets tired? We don't want him carried around. If we take him places now we use a stroller, but a stroller isn't the appropriate option for school. So PT wants us to have a wheelchair for school in case they have to go long distances. His primary way of getting around will be his walker, but we will have his wheelchair if he needs it. I understand her point, and I want Edwin to have what he needs, but I just had so much hope he would use his walker and then transition our of it and walk independently at some point in the not so distant future. I really don't know now...
Anyway, we'll have our meeting with the equipment specialist in mid-April once we are in our new house, and they will make decisions about what equipment to order. He needs a walker, a Rifton chair, and possibly the wheelchair.

FINALLY Serena had her PT eval. I have been asking for this forever, and she was given one about 7 months ago and PT said she was fine. I disagreed and have brought up her issues with balance, not walking up or down stairs, and her inability to jump for months. Today they watched her on the stairs and stepping up and off a phonebook. They realized she has no idea where her body is in space when trying to walk down stairs and she is very unsafe. So Serena will be getting PT on a regular basis as well. The worst part of EI is they always try to see both children at the same time, and it doesn't work. I can't take off work for every single session so it makes it harder for me to advocate. It's another reason Serena needs to attend school and get services through the school system for PT and ST. I don't think we will have a problem getting her in based on her gross motor delays.

So it was a pretty crazy day. A reality check for how "involved" Edwin is and will be in school. He will have PT probably 3 days out of the 5, he will almost certainly have an aide, and all his equipment.
I hope I like the preschool tomorrow, and let's hope the principal is better than the one I met today....

And here are pictures of the kids at a dance show we went to with a coworker and her kids. They are so cute!!!

Our foster daughter :)

I haven't talked much about Theresa because things were really volitile with her aunt at first. And even though this blog was private, I didn't want to cause any issues...jsut in case. But two months ago her aunt gave up all rights, and in court, in front of Theresa, she said she wanted nothing to do with her. It broke my heart.
Theresa is an amazing person and has been through so much.
Last week I emailed the newspaper, told them a little about her "story" and asked if it were possible if her picture made the paper. Afterall, she has been the leading scorer in Central Mass all season. Well, they called me, I told more of her story and they wanted to do a full out article on her! She was so excited.
Here it is:

Sunday, March 1, 2009
Net gain

Pickens picks up her game, on and off court

Paul Jarvey

Main South’s Theresa Pickens can make things look easy on the basketball court … (T&G Staff Photos/TOM RETTIG)

WORCESTER — There were January games of 35 and 40 points, and when the regular season ended, 17-year-old Theresa Pickens was the top girls’ basketball scorer in Central Mass.

But her story isn’t about how she averaged nearly 23 points a game for Main South with a lightning-quick release and a shot she can unleash with either hand. No, her story is about emotional growth, about trying to deal with everything that has been thrown at her, about the central role basketball has played in her life and about how the caring foster parents who decided to take her in last August have kept her on track.

Pickens has learned to become a better teammate and deal with the frustration that she says has always been the most difficult part of her game. But she’s not all the way there yet. She’ll be the first to tell you that.


Still, the positive steps are undeniable.

The day before the Cougars’ Central Mass. Tournament opener against Bay Path last week, Main South coach Chad Malone got on her in practice about not having a positive attitude and not embracing her role as a team leader.

“We left on kind of an uneasy note,” Malone said. “The next day, I saw a woman come back and respond in the right way. Against Bay Path, she was a team leader. She kept the entire team going. To me, that was a significant moment for everything we’ve been working toward in the classroom and on the basketball court.”

The 11th-seeded Cougars upset the fourth-seeded Minutemen, 62-41, in Charlton. It was the first tournament victory in history for Main South, a co-op team drawing players from Worcester’s two smallest public high schools, Claremont Academy and University Park Campus School.

“I cried, I was so happy,” said Pickens, who scored 26 points despite fighting double-team attention the entire game.

Even though the victory might not have resonated much beyond the Clark University neighborhood, it was a significant yes-we-can moment given that Main South had lost a game, 90-6, four years ago, the season before Malone took over, and was clobbered in the first round of the tournament last winter.

“A lot of these kids are so used to losing that when it happens on the basketball court, they think, ‘Oh well, that’s what’s expected to happen to us,’ ” said Malone, who teaches English at Claremont. “That’s a mind-set in the classroom and on the basketball court you have to do a lot to break.”

He has successfully been able to chip away at that attitude in what has been a breakout season for the Cougars, who advanced to the Division 3 semifinals with a 49-42 win over Parker last night.

Pickens, who led her team to victory yesterday with a game-high 29 points, has been a major part of the success, which is amazing given how her life was again turned upside down in August when she wasn’t sure if she would be able to come back for her senior year at Claremont.

Her parents abused drugs and alcohol and were incapable of caring for her, sending her into foster care when she was an infant. She was in and out of foster homes until her aunt adopted her when she was 5.

By the time she was 10, she was exhibiting some serious behavioral issues, and that’s when Ike McBride of the Boys & Girls Club steered her into basketball, hoping to turn all that negative energy into something positive.

Pickens isn’t sure if it’s the competition or what, but the game has become everything to her. It’s the one thing she has been able to rely on. Always.

“I don’t know what I would do without basketball,” Pickens said. “I feel like basketball has always been there for me.”

People have sometimes been another matter.

Pickens continued to butt heads with her aunt until things finally fell apart last summer. One month before her 17th birthday, Pickens was headed to foster care again, and who knew how that would work out, where she would end up.

Stephanie Rapa, who knew Pickens from the Boys & Girls Club, where Theresa was the Massachusetts Youth of the Year in 2007, decided she was well worth taking a chance on. Rapa and her fiancé, boxer Edwin Rodriguez, became her foster parents, a move that allowed Pickens to continue her education — and basketball career — at Claremont.

The stability has been good.

Malone believes this has been Pickens’ biggest year of growth. She admits that she has trust issues, but her coach said she has begun to figure out that she can’t do it alone and can rely on her teammates.

“There were times last year when she wasn’t willing to take the risk, to put herself out there,” Malone said. “That’s the change. She’s willing to put herself out there in a public way and risk failure. I think in risking failure she has met with tremendous success.”

Pickens is intent on continuing that success by playing in college.

She knows that going from a small school to the next level will be a huge adjustment, but the game means too much to her not to keep going.

“I know it’s going to be a big step, but I’m willing to do whatever I have to do to take that step because I love it,” she said.

And don’t doubt that she will successfully make the transition. Basketball isn’t nearly as hard with all that she’s had to deal with in life.

Paul Jarvey can be reached at pjarvey@telegram.com.

March of Dimes...April 19th!!!!

So, I have put this off long enough now. I kept going back and forth about this for awhile now. Basically, I'll put it out there...advertising for the MOD sucks. It makes me really mad. There is always a beautiful fat, healthy looking babies on their brochures and flyers. If not, there are babies who were once on oxygen but who are "fine." It sends the message prematurity hit, MOD's research stepped in, saved the day, and now this child is healthy, and "normal." I really wish thei were the case...but we know it's not.

I also hate when they use the word "normal." In the latest news article from our city's paper about this years Ambassador family it was the same deal.
Here is a direct quote from the paper:

"She was just starting to enjoy being pregnant when her whole world changed. At 3 a.m. on a cold January night in 2006, she went into labor 12 weeks early. The following couple of months spent in the hospital, and all of the exhaustive, nerve-racking medical attention, were huge challenges for Mrs. McLennan and her family.


Andrew is now a normal, healthy little boy, but after such a traumatic experience, some people would just try to move on and forget it."

This family is not just forgetting about it, as they are reaching out and working with the MOD and helping to bring awareness, but I guess the point is, they are not dealing with any effects of prematurity, or at least are not talking about it.

Don't get me wrong, I'm happy for them...but that's not the reality of premature birth that I personally see in my own situation and in the situation of our fellow micro preemies whom I've grown to love. How can you understand the urgency of this epidemic if you don't recognize how much prematurity DOES effect the former preemie and their family? Why would you want to contribute your hard earned money if you think after a year or two everything is fine???

I just feel like after all these years, the public at large still has little to know idea about prematurity, and it leads me to wonder if the MOD is really doing their job.

I also shared here over a year ago what upset me when I got invited to the prematurity summit. To my dismay everything discussed in the Summit was around maternal healthcare...everything from smoking, drinking, oral health, obesity, to domestic violence as causes of prematurity. COME ON!!! I'm all for educating moms about prenatal care and healthy choices and lifestyles while pregnant, but what about me? A healthy woman who sought prenatal care from 5 weeks on? Where are my answers? Can we go on to have another baby, or would I risk having another preemie? Does the MOD do more than just talk about how unhealthy women have preemie babies?

After, much thought and reflection, I know that the MOD does a great job with research. All you have to do is go to their page and look into the current research projects being funded. Ignore the cute smiling babies that are helping to fuel the "everything is normal" advertising flaw, and check out what they are actually doing with this money. There is a lot of great things going on with research! I only wish they would make this more public!

Additionally, the MOD is the only organization that I am aware of that raises money for research into prevention of premature bith as well as ways to help medically support preemies babies in the NICU. Therefore, it is the only organization that I know of that has the potential to one day "cure" premature birth.

I know economic times are incredibly tough, and I know I have been asking friends and family to come out and buy tickets to Edwin's fight to help support his career, so admittedly I feel guilty about asking people to reach into their wallets and support Team Serena and Edwin, Jr. We always planned to walk, the debate was whether or not to raise money. So I'm leaving it up to you. I know things are tight now and I know I've asked for your support at Edwin's fights, and of course tickets aren't cheap, so I totally understand if you can't make much of, or any, financial contribution. But if you can, rest assured, I've looked into it and your money is going to a great cause.

More importantly, if you are interested in joining our team and walking with us, that would mean so much. The walk to me is about the pride I feel in Serena and Edwin, and an honor to their sturggle and survival. It is also in loving memory of our neice who lost her life to prematurity, and the many others who were born too soon. This walk is a way to pay tribute to prematurity awareness. And maybe someday soon our city will chose an Ambassador family who is still feeling the effects of prematurity 2 years out...Then, and only then, will the public really understand the gravity of extreme prematurity and feel compelled to do MORE about it.

4/19/2009 10:00:00 AM

City Hall in Worcester
Corner of Franklin Street and Main St
Worcester, MA 01608
Walk Distance:3miles
Registration Time: 9:00AM
Start Time:10:00 AM
Chapter:Central Mass Division
Phone #: (508) 366-9066

Daddy's a Star!

Sunday, February 22, 2009
Rodriguez’s future in DiBella’s hands

Bud Barth Boxing
hbarth@telegram.com

Edwin Rodriguez talks with his new promoter, Lou DiBella, during Thursday’s press conference at Mechanics Hall. (T&G Staff/TOM RETTIG)
Promoter Lou DiBella knows a little something about champions, having paraded several of them under his DiBella Entertainment banner, including Jermaine Taylor, Ike Quartey, Andre Berto, Kermit Cintron and Paulie Malignaggi.

His latest protégé, Worcester middleweight Edwin Rodriguez, isn’t quite in that class yet, but DiBella says to be patient.

“Give me 18 months,” DiBella said on Thursday, “and I think this kid will be ready for anybody in the world.”

Flowery praise and hyperbole were as abundant as cauliflower ears at Thursday’s press conference, where more than 100 people — including fighters from all eras — crowded into Mechanics Hall’s historic Washburn Hall for the announcement that DiBella had signed a promotional deal with Rodriguez.

It also was announced that the New York promoter will put on a March 19 event at Mechanics Hall, where Rodriguez will make his pro hometown debut, hence the show’s headline, “Homecoming.”

Rodriguez (10-0, 6 knockouts) didn’t actually sign the contract until a few days ago, but the deal was sealed in January when the 23-year-old Dominican native bounced mismatched super middleweight Brad Austin up and down off the canvas four times on his way to a third-round TKO at a DiBella show in Biloxi, Miss.

Next up is next month’s eight-rounder at Mechanics Hall. Rodriguez’s opponent, and the rest of the card, should be announced sometime this week, DiBella said.

As for details of the deal, they’re being guarded pretty tightly, especially the financial terms. Rodriguez manager Larry Army Jr. of Grafton said a confidentiality clause prevents him from disclosing figures, except to say that “a substantial signing bonus” was part of the three-year deal, which also includes a one-year option for DiBella.

“I don’t want to get into figures,” DiBella said when pressed about the size of the signing bonus. “It’s not the bonus that the contract’s about; what the contract’s about is fairness of the purses and the frequency that he fights. He got a bonus, but that’s his business.

“I consider him to be one of the very best prospects in the country — like I said, on a par (with) or better than the (2008) Olympians. He’s going to be treated very fairly and paid very fairly.”

Rodriguez’s dream of making the 2008 Olympics fizzled when he lost at the 2007 USA Boxing Championships and the National Golden Gloves, where he had won national titles in 2005 and ’06, respectively. Those were his last two tickets to the Olympic Trials.

The previous October, Rodriguez skipped the Police Athletic League nationals — the first Olympic Trials qualifier — when his fiancée, Stephanie Rapa, unexpectedly gave birth four months prematurely to 19-ounce twins. Edwin Jr. and Serena, now healthy and almost 2-1/2, were born the day Rodriguez was to leave for the PAL championships in Oxnard, Calif.

As for TV, DiBella said not to expect Rodriguez on ESPN fights very often because “they don’t pay their fighters very well,” but Rodriguez might be on undercards of HBO and Showtime telecasts. DiBella also said fans can expect to see Rodriguez on “ShoBox,” the Showtime vehicle for up-and-coming fighters, “within four to six fights.”

DiBella said the problem is pitting the right fighters against Rodriguez. Like Goldilocks’ bed, they can’t be too soft or too hard. He said a match between Rodriguez and Buddy McGirt Jr. is “certainly possible.”

“You have to be careful (matchmaking),” admitted DiBella, saying Rodriguez may need some “elective surgery” down the line, but nothing major.

“He’s beaten quality opposition already, but you don’t want to get carried away and escalate his career too quickly. Boxing’s a very unforgiving business. The wrong move is … potentially irreversible. Thank God, I tend to have a good sense about how to develop a kid.”

As for the three-year contract, here are some details gleaned from official and unofficial sources:

•A minimum of seven fights the first year (the Biloxi fight was the first), five fights the second year, and four fights the third year. Minimum bouts don’t apply if Rodriguez becomes a world champion.

•There are minimum purses for six-, eight- and 10-round fights, which increase for TV fights on a scale with ESPN at the bottom and Showtime/HBO at the top. Minimums also increase if Rodriguez is a world champion, or fighting for a championship, or if he’s ranked in the top 10 by the WBA, WBC, WBO, IBF or Ring magazine.

•Training expenses are paid for all world championship fights.

•There is no weekly or monthly stipend for Rodriguez, but his signing bonus reportedly fell just short of a six-figure windfall.
END


And my email to the author:

Hi Bud,

This is Edwin Rodriguez's fiance, Stephanie Rapa. I want to thank you for all the coverage you have been doing for Edwin over the years, and particularly recently as he moves up the ranks as a pro. It means a lot for family, friends, and the community to read up on how Edwin is doing. We all really appreciate it.

I just wanted to mention something that you probably aren't aware of because Edwin doesn't always tell people about it. In your article you mentioned the twin's premature birth, but how they are now healthy 2 1/2 year olds. While this is somewhat true, the reality is their premature birth has continued effects on their health. Serena was in the Intensive Care Unit for a week in December with a respiratory cold that had her back on oxygen and a lot of medications. Because of his premature birth, Edwin, Jr. has cerebral palsy and cannot walk or stand independently. He wears braces on his legs and is learning to walk with a walker. He is also developmentally delayed, just learning a few words recently, and he does use sign language to communicate as well. They have weekly physical, occupational, speech, and early intervention, as well as continued appointments with the pulmonologist (lung doctor), neurologist for Edwin (brain doctor), developmental team, eye doctor (Edwin and Serena will likely need glasses soon, a side effect of their Retinopathy of Prematurity...what made Stevie Wonder blind..he was a preemie), and Serena sees an ENT (ear, nose, and throat doctor) in Boston for her paralyzed vocal cord (a side effect of necessary heart surgery she had when she weighed only a pound..they snipped her vocal cord nerve during the surgery.) She can talk but had issues with aspiration and had surgery for it last summer.

I could go on and on.

There are two reasons for me sharing this. One is I have made a commitment to educate the public on the realities of extremely premature birth. The media (not you, but nationally) tend to paint preemies as "small babies" who go on be "normal." The ultimate "miracle story." While I certainly see Edwin and Serena as miracles, they, and almost all their micro preemie peers do not walk away from extreme prematurity (23 weeks-26 weeks) unscathed. In fact, Edwin and Serena statistically were guaranteed to have medical and developmental needs based on their gestational age, which is why Edwin and I were consulted and had to decide whether to seek treatment (resuscitation) or allow them to pass away in our arms. I want the public to understand the truth about extreme prematurity; even within our close family and friends, some do not understand why Edwin, Jr isn't walking or talking, and if the public had more awareness of what it means to be born so premature they would understand that the twins were at risk for much more. Many children are blind, deaf, cannot eat by mouth, have severe cerebral palsy and use a wheelchair, severe cognitive impairment, sensory issues, autism, etc.

Other than my mission of spreading prematurity awareness, I also think it's important to highlight just how much Edwin was dealing with during the Olympic Qualifiers, and what he continues to face as a professional fighter. He has to balance being a committed fighter, training many hours a day, with being there for his children. He comes with me every Friday to do aquatic therapy with our son at the Greendale Y with a wonderful physical therapist, Peter Cornetta. He makes sure that everyone knows that he can't train at that time because he's committed to helping Edwin, Jr gain as much muscle as possible, so that hopefully some day he will walk. I could go on about how challenging it is for Edwin to be there for the kids and also dedicate his life to his sport.

I hope this gives you a little insight (or a lot! lol) into our lives. One of my greatest wishes would be to find a "cure" for preterm birth (we still have no idea why I went into preterm labor), and that all babies would be born healthy and at term. I don't want to continue to spread the myth that babies are born early and then go on to be "healthy." We are extremely proud of Serena and Edwin, Jr and I don't want to deny the struggles they faced and continue to face. Their perseverance and courage is truly amazing and I want to acknowledge that.

Thanks Bud. As you can see, I'm a little passionate about this!
END

And just because they are the cutest..here they are!

Daddy's in the paper again! Our Daddy is famous! :)

Thursday, February 19, 2009
DiBella inks ‘La Bomba’

By Bud Barth TELEGRAM & GAZETTE STAFF
hbarth@telegram.com

WORCESTER — The handlers of Edwin “La Bomba” Rodriguez will hold a press conference at 1 p.m. today at historic Mechanics Hall to announce that the undefeated Worcester middleweight has signed a three-year promotional deal with powerful DiBella Entertainment of New York.

The other big announcement on tap is that the 23-year-old Rodriguez (9-0-0, 6 knockouts) will make his long-awaited hometown pro debut on Thursday, March 19, at Mechanics Hall, which hasn’t hosted professional boxing since 1967.

The press conference, which is open to the public, will be held in Washburn Hall at the refurbished 157-year-old concert facility, located at 321 Main St. Doors will open at 12:30 p.m.


Lou DiBella, CEO and founder of DiBella Entertainment, will attend, along with Rodriguez and his manager, Larry Army Jr.

The promotional sweepstakes boiled down to DiBella and Jimmy Burchfield’s Classic Entertainment & Sports of Providence. Reportedly, Burchfield’s offer originally included more upfront money, but DiBella closed the gap by kicking in what Army called “a substantial signing bonus” for Rodriguez.

The contract also includes a one-year option for DiBella, whose superior name recognition and powerful sway with cable TV finally sealed the deal.

“Lou was pretty much one of the pioneers of HBO Championship Boxing,” Army said. “If you look at how many shows he gets compared to other promoters, the difference is dramatic. He’s also one of the few guys who works intimately with both HBO and Showtime.”

DiBella’s stable of stars includes WBC welterweight champion Andre Berto, former middleweight champion Jermain Taylor, IBF junior welterweight champion Paul Malignaggi, former WBA welterweight champion Ike Quartey, middleweight prospects Ronald Hearns and Carlos DeLeon Jr., heavyweight contender Chazz Witherspoon and former IBF welterweight champ Kermit Cintron.

The March 19 card here will be promoted by DiBella in association with Manfredo Gym, the Providence facility owned by Rodriguez trainer Peter Manfredo Sr. No opponent has been named for Rodriguez, whose bout will be an eight-rounder.

The 6-foot-4, 250-pound Witherspoon (24-1, 16) also is expected to be on the card.

In his last fight on Jan. 17, Rodriguez knocked down Brad Austin four times in seven minutes and scored a third-round TKO in Biloxi, Miss. Army said Rodriguez “looked the best he’s ever looked” in that bout.

Mechanics Hall, which underwent a $5 million restoration in 1977, is considered one of the finest acoustical concert halls in the country. It’s a cozy spot for boxing, seating about 1,200, and was the site of more than 350 pro bouts from 1920 to 1967.

Among the better-known Worcester fighters who did battle there were welterweight Don Williams, who put together a 60-16-2 record with 33 KOs from 1947-56, welterweights Harry Devine (39-17-4, 6, 1928-41), Johnny Potenti (26-2-0, 15, 1943-50) and Tiger Flowers (63-43-5, 30, 1945-51), middleweight Johnny Rossi (60-24-6, 23, 1932-43) and heavyweight Johnny Melko (37-18-4, 11, 1944-50).
END



THe kids will be attending the press conference with us today and I will post pictures later to this post!

Lecture on ethics of neonatal intensive care and puking...a lot

Sorry for the delay in posting. Edwin and Serena (and myself and Daddy) got the stomach bug and it was a nasty weekend to say the least. Serena has been hit the hardest and she can't eat anything and all she wants is her milk, which is BAD news on the way back up, so it's been a lot of cuddling, napping, and tv these past 4 days.

Anyway, I wanted to update you all on the very interesting lecture I attended Thursday night. The neonatologist did an excellent job of presenting the history of neonatology, talking about the Miller case (23 weeker whom the parents opted NOT to be resuscitated, was resuscitated by the fellow who was on the night she went into all out labor. Parents went on to sue 7 years later as their child was severely disabled...check it out it's a very interesting case), and other ethical dilemmas in neonatal care, specifically extreme prematurity...basically 23 weekers, which clearly is right up our alley.
Anyway, he talked about the numerous health and long term disabilities associated with extreme prematurity and the lack of adequate laws to point parents or neonatologists in any "real" direction when making these ethically complicated decisions.
I also answered questions that he threw out that others didn't respond to. Like, did we agree that the OB should have allowed a mother to have her twin boys at 33 weeks because she had 3 little ones at home with no child care? Well of course I said "hell no." But they did just that week at our local hospital, and as the neo reported they were breahting on their own and feeding well. Really? Well what happens when they catch RSV and end up in the PICU on an oscialltor and lose the ability to swallow (just happened to a coworker with 32 week twin boys three weeks after NICU discharge...2 months in the PICU for one...1 month for the other.) Anyway, I DO NOT agree with elective c-sections of preemies for convienence...absolutely unethical IMO.
He also asked if we should we pass laws stating that all babies above 500 grams be resuscitated...my answer "no." Why not, you may ask? Simply because I believe in parental choice. I KNOW there are parents not suited, or who don't desire to parent children with numerous special and medical needs. Why would you "force" this type of parenthood on people who do not or cannot provide the very best care for this child? At only 500 grams and 23 weeks, the national survival rate is well below 50% and the long term outcomes...well they SUCK. It is basically guaranteed your 500 gram 23 weeker will have needs. If you know you can't deal with that, then I think you have a right not to take extraordinary all-out resuscitation measures. This is just my opinion by the way.
He also asked what option a parent of a 27 weeker would have if they did not want resuscitation. He said that most every hospital resuscitates at this gestation and the only option would be to have the baby at home. Which poses its own HUGE ethical dilemmas in my opinion because what if this baby is born breathing? Don't you have an ethical and legal responsibility to seek medical support for this child. How long do you let this child breathe at home without warmth or nutritian? DO you simply let the 27 weeker tire out after a few hours and die at home? I don't know...I can't agree with that decision.

At the end, I shared my story (most of the listeners were pre-med Holy Cross students and a couple of professors.) The kids were actually there, being entertained by my mom and the HC ballroom dancers, and came in just as I was telling the group about them. Quite powerful as I'm sure you can imagine.
I found it very easy to talk about our decisions and our experiences with extreme prematurity. I talked about what the neo told us as I layed in the hospital bed, doing everything possible to stay pregnant, about trying to understand what resuscitation would mean for our tiny 550 gram babies, and things like making Edwin a DNR and why, and issues like PDA ligations, ROP laser eye surgery, and chest compressions on my 2 pound son when he would stop breathing while feeding. I also talked about paralyzed vocal cords, cerebral palsy, and special ed. Basically I held little back, and I think that was an obligation. I don't wish prematurity on anyone, but I think understanding prematurity, and thinking about what they would potentially do is important.

As for resuscitating, we made the decision with as much knowledge as we had at the time (and of course I am sooo thankful we did.) But let's be serious here, did I really understand everything micro preemie parenthood entailed? No way. Not until I lived it, read about others living it, did I really understand. Thankfully we are capable and have the amazing support of our family to do what's best for S&E, but so many don't have this. Knowing what we know now, we are not even sure we will have more children for the fear we would have another preemie, and we don't want to put a child through that, and frankly don't want to go through that again ourselves; not to mention what it would mean to S&E to have a micro preemie brother or sister. But that whole decision will be made MUCH later...thankfully we have youth on our side and can afford to wait and seek medical advise about this. Anyway...painful subject to think about....

My SpedPac meeting was great and I had a good time having a glass of wine and appetizers with the fellow moms after our meeting, none of which have preemies (I think we will see this changing over the next several years as these micro preemies who are routinely surviving enter the school system.) I feel so thankful I've found this group of moms who have a huge impact on special education in our city. Every month we have direct access to the Director of Special Ed in these meetings. This past meeting we met with the school committee to discuss budget cuts and to advocate for limited to no cuts in special eduation.
And related to this, before Serena puked all over the place on Friday, EI came and we talked about her assessment. Serena is scoring within normal range on the Michigan test, but in some areas is closer to the 24 month than her actual age. She is entitled to stay in EI because of her paralyzed vocal cord, even though she doesn't get ST because the focus is always on her brother. She also has balance issues, but again, PT only comes to see Edwin. In fact, no one really works with Serena, which is another reason I want her in school so she receives her OWN therapy where the focus is on her and she is not being compared to her brother who is clearly so much more delayed than she. So I presented my case and the OT agreed, and felt they had enough info to advocate for her getting into preschool this September. She said that even if Serena doesn't need special ed, she could have a 504 plan for speech to have her work on her voice because of her paralyzed cord. Serena has very good language, and talks as clear as day to us, she would just need to work on using her vocal cords as correctly as possible to maximize the volume. This will take place more at age 4, but for now they should be able to get her in school at 3, which I think she needs socially and developmentally. They didn't get to score her completely because when she awoke from her nap she puked everywhere, and EI quickly left, and that began our weekend from hell.

In exciting news, things are progressing with the house we are buying. We had the home inspection and appraisal last week. Those went well. We are now awaiting the financing, and should be able to close in about 40 days! This house will mean a lot for us and especially the kids, who will have MUCH more space, a bigger yard, an above ground pool that we will be getting this summer, and so much more! With Edwin using his walker more and more, I'm excited to see how well he does maneuvering around the 1500 sq foot home versus our tiny apartment we have now.
More details on the house as we find out!!!

p.s. Edwin is saying and signing "book," is pointing to Edwin and saying "Dad," and waving and saying "bye." We are thrilled with his increased verbal language and use of sign to support his verbal language and desires! His receptive language has also improved quite a bit lately. He has "remembered" how to identify his nose and his hair and correctly, and points to Elmo and Dora in books. I guess he didn't "lose" these skills afterall! He now seems ready and excited about Signing Times, and we have been using these to help with the language (verbal and sign) and I think FINALLY this is helping him! Hurray for milestones!!! Oh and I almost forgot, although he is not yet signing "train" he understands when I sign it WITHOUT saying the word. We tested this tonight. We put a couple of his favorite toys in front of him and I said "Edwin look at Mommy" (which he did on command!!! :) ) and I said, "Where's the.." and did the sign for train without saying it. Immediately he picked up the train and handed it to me. It was amazing! He is amazing...They are both amazing! And not to be outdone, Serena is answering back and having semi-conversations with us. It's so much fun. Tonight she said, "Daddy it's stuck" (talking about the cap on a water bottle." Hands bottle to Daddy. Daddy takes off the cap. "Thank you Daddy" and off she runs. Or, she'll say, "What's "Aunie" (Edwin) doing?" She'll run to his bed and say, "Oh, he's sleeping...sshhhh" as she puts her finger to her lips. It's hilarious!

Hair cut, runny noses, and a controversial post to come

The shopping cart (note my boy's out of control hair!)

After his second-ever hair cut


Edwin didn't cry or whine ONCE during his haircut...he was entertained by a comb, looking at himself in the mirroe, and the oversized blush-brush thing. This is his second haircut and he did just as well the first time.

In other not so good news, the kids have runny noses and congestion. Nothing earth shattering, and hopefully won't go that route. E was up most of the night coughing and threw up a little...he can't handle post nasal drip. It's 10:30am and he's still asleep! Fingers crossed this doesn't amount to anything that requires oral steroids or oxygen.

On Thursday I will be attending a lecture at my alma mater, College of the Holy Cross, on the Ethics of Neonatal Intensive Care. The speaker was one of the neos who cared for our twins in their 4 month stay, is a fellow alum of the college, and was one of my mom's students the first year she taught the Organic Chemistry Lab. The posters advertising the talk say things like "Tiny Babies, Huge Dilemma," and "Do No Harm...But Who Decides?" Let's just say it will be interesting to say the least.
I will do a post on that as well as on my second SpedPac meeting which is with the school board and is on Wednesday night.
Speaking of Special Ed, as of EI scoring last week, Serena is not delayed in any area...which would be great, but I beg to differ. She is doing great, but I don't want some of her delays overlooked because E is so much more delayed. I came on my lunch break and didn't have much time to look closely at the testing, but they are coming this Friday and I will make my case then.
Basically, I really feel Serena would benefit from Preschool in the public school this fall (when she turns 3) and I want her to be given a chance to catch up to her peers. She has had very little peer interaction, she needs to work on balance issues, and she will need more in-depth speech therapy to help with her voice due to the vocal cord paralysis. Even if she doesn't "need" special education, she is still 4 months behind her peers (the testing coupled 24 months-29 months and Serena scored closer to 24 months in several areas.) I think getting her in school will help with all these things. Additionally, I want S&E together as much as possible. They are now so close and look for each other and interact constantly.

So look forward to a jammed packed post laster in the week!