Happy 2nd Birthday to our miracles!

I really have no words to describe the range of emotions I feel around the twin's bday. All I know is yesterday was a blast and we are so grateful for having so many people who love Serena and Edwin, and who came out to celebrate their special day.
Here are a ton of pictures from their 2nd birthday party, and couple from the days before!

Reflections on our visit to the NICU

We went to visit the NICU on Saturday. It was great to see our nurses, respiratory therapists, and the neonatologist who was in charge the first 3 weeks of the kid's lives. The one who felt we hadn't exhausted all efforts with Edwin and that there was more we could do before we gave up.
It is strange to go back there. There are many mixed emotions. There were so many ups and downs there. There were also so many questions. What would the future hold for these 23 weekers? I know some of the medical team asked, "are we doing the right thing by continuing to treat these kids?" I know I asked myself that so many times...
I remember one day a specific nurse who was caring for Edwin. I always asked a lot of questions, especially when I felt people were hinting that ending support would be the best thing for him.
This nurse told me about a young couple who had twins born around 23-24 weeks who opted to end support for both children. Supposedly they then went on to finish college, got married, and went on to have a healthy full term baby. I couldn't help but wonder if she was hinting at something. Edwin and I were young, unmarried, and everyone knew I had been accepted to law school and was suppose to have gone but had deferred for a year because of the pregnancy. Edwin was trying to make the Olympic Team and had a really decent shot. I couldn't help but think, this women must really think life would be so much easier if we took these babies off life support and went on with life as planned...like the young college couple before us. Those words some spoke, "you can always go on to have more children. Most people go on to have full term babies..."
I know this nurse wasn't trying to be judgmental or hurtful and was probably helping me understand my options, but I could not wrap my head around going on to live happily ever after if we made that choice. If we thought about ourselves and all WE had to lose.
There certainly was a time where I felt it was selfish to hold on. It was the time I gave Edwin permission to stop fighting if it was getting too hard...too painful. That was the most selfLESS thing I've ever done, and I do understand and grieve for parents who have to make decisions like that for their child.
I just felt that giving up solely because life was going to be damn hard with children who could potentially be severely disabled was not a rationale for me. I was going to accept Serena and Edwin however they came because that is what I feel a parent should do. I never wanted children because I needed them to be something I imagined. I wanted children to love and nurture them. Sure, life would have looked "easier" if I had gone onto law school and Edwin focused on his sport without parenting two children with needs; but at what cost? A cost way to precious to pay in my opinion.
I look at Serena and Edwin and every decision we made was clearly the right one. They have their issues, but in no way would those issues justify not giving them a chance at life. I hope to see Edwin walk one day, independently of his walker, but even if he doesn't, his life is worth so much. It will never change how I feel about resuscitation and continuing to treat.
There are no easy answers and I know we are extremely lucky that S&E are as healthy as they are. I know there are families struggling with children who are severely disabled and feel maybe there is too much suffering in their child's life. I feel deeply for these families. It is truly too large an ethical dilemma for me to wrap my head around.
All I can do is hope that families going through what we went through know that there are families out here who have happy, thriving, loving children who have parents who honor, cherish, and love them unconditionally. I know I was searching for these families two years ago and it was because of them that I was able to make it through the difficult statistics and stories that were thrown our way. It was the nurses who helped keep us positive, who told of the kids who were so sick and came back running down the NICU halls that got us through the rough days. It was the stories I read on these blogs and the pictures and videos of all the amazing former preemies and their families that helped us visualize what we had to look forward to. It was these people who helped me believe that everything was going to be okay, even if okay didn't mean "typical." And boy were you right!
So after our visit, I hope the nurses and the NICU team remember Serena and Edwin, once tiny 23 weekers whose prognosis was so uncertain. I hope you keep them banked in your memories so the next time a family comes in as scared, uncertain, and in search of hope as we were, you can tell them about the joy we get to feel every day because of our children. I hope you tell them that a disability does not define a person and that there is so much children can overcome. I hope they know that this doesn't have to be the end of their life as they hoped for, but rather it's life taking another turn that can be even more amazing than imagined. And I hope you'll refer new parents to this site via my email so that we can provide some glimmer of hope to others. That just maybe Serena and Edwin's smiles can bring a little light into their lives during the frightening NICU time.
For some of those smiles please refer to previous post :)

Beautiful Weekend!

Playing on our swing set!




At Davis Farm Land before the hay ride!

Apple picking!





Video

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Worcester Magazine article

EDWIN "LA BOMBA" RODRIGUEZ GETS READY TO EXPLODE
Written by Scott Zoback
Wednesday, 17 September 2008
BOOM!

By Scott Zoback

The man heralded as Worcester’s Next Great Hope is tired. His legs are sore from training, his family is at home sick, and he just got out of church. He rests his head on his hands like a bored teenager waiting for class to end, and listens to the conversation going on around him.

But then the talk turns to boxing and everything changes. The Next Great Hope’s shoulders lift, his eyes focus and glow, and his entire body looks like he’s ready to go ten rounds.

Middleweight Edwin “La Bomba” Rodriguez is at last comfortable.


Stories about boxers, whether they’re up-and-comers or fighters on the tail end of their career, are generally hyperbolic affairs, filled with winding roads, drama, and a lot of talk about overcoming the odds. Boxing, more than any other sport, attracts characters of all kinds; a P.T. Barnum level of exaggeration is a natural extension.

So you can be forgiven if you think the story of Edwin Rodriguez sounds, at least on the surface, a bit familiar. Image

Let’s review: Young guy immigrates to Worcester from the Dominican Republic when he’s just a kid. Boxes with his brothers in the basement, maybe scuffles on the street a few times. Finds his way to a Boys & Girls Club gym where a coach, himself a product of the streets, sees some serious promise. Coach convinces the kid’s father that boxing will keep him off the street. Kid boxes his way through the next few years, and ends up winning two national championships, winning nearly 90 amateur fights. He goes pro, runs his record to 8-0 with five knockouts within a year, and is heralded by those close to him as the next world champion.

And so on.

Except this story isn’t generic and Rodriguez isn’t the same character checking off the same clichéd plot points. There’s his late start by boxing standards — he was already 16. And there are his young twins, born prematurely, one who undergoes serious physical therapy on a near daily basis to compensate for cerebral palsy. There’s his dedication to them and to their mother, his fiancé, to the point where he misses the Olympic Trials, his dream, in order to take care of them right after they’re born. There’s his love of chess and his return to college so he can study to be a math teacher.

But, above all that, there’s Rodriguez’s love of boxing.

The man who would be king

In conversation, Rodriguez has a confident humbleness. He hits all the right speaking points; “I just gotta work hard,” is a favorite phrase. A good deal of that attitude has clearly been beaten into him by his manager Larry Army Jr., a fact they both joke about. It’s a cocksure attitude with a heavy dose of an “aw-shucks” mentality.

If not cocky, there’s a clear self-assurance that gushes from Rodriguez. He’s good at what he does — really good — and he knows it. He wants to be world champion, but half-jokes his other long-term goal is to be featured in “Fight Night,” the popular boxing video game series. But not the next edition, he is sure to point out, that would be too soon, too arrogant. The edition after that, however would be perfectly ok. This is a boxer who told Charter TV 3 earlier this year that one of his goals was to be “one of the greatest fighters of all time,” and tells us it’s to be “one of the greatest middleweights of all time.” For a weight class that has featured Sugar Ray Robinson, Marvin Hagler, Tommy Hearns, Bernard Hopkins, Roberto Duran, Roy Jones Jr., Jake LaMotta, and Oscar De La Hoya, that’s a lofty goal.

Rodriguez and his team aren’t phased.

As a fighter, Rodriguez is universally described as a boxer-puncher. He’s a lanky 6’1, with good movement, good reflexes, and fast hands. “He has the frame to move around ... also has what it takes to stand in there and punch,” says local matchmaker Frank Rohacik, who has arranged fights for Rodriguez among many others. That said, “he’s not a guy who’s going to take you out in one shot ... [he] wears you down.”

Rodriguez loves boxing, but he is clear about why he’s able to make a career out of it: he’s got a flair for showmanship.

“You got to make it fun for the people. They want to see a fight, I’ll give them one.”

Rodriguez has done that in all eight professional fights so far, winning five by knockout. He’s only been truly challenged in his past two fights, one against Hector Hernandez, and one against Marcus Upshaw. Rodriguez calls the Hernandez fight his toughest test yet, and Army allows that it exposed some weaknesses for Rodriguez to work on. Of course, Army also says that’s why they set up the fight in the first place.

Rohacik says that those fights were good tests to see what Rodriguez is made of. For the first time as a pro, he says, Rodriguez faced competition that came in needing a win, and thinking they were going to win.

And he came out on top.

How good is he?

In a sport built on embellishment and exaggeration, it’s notoriously hard to get an honest assessment of a fighter at Rodriguez’s level, as everyone has an ulterior motive — either promoting the hell out of him, or trying to push their own guy. It’s why young fighters routinely pad their records against clearly inferior competition, racking up undefeated records before facing anyone of note. And, at first glance, Rodriguez fits the mold, having fought to 8-0 at a blistering speed. His first six opponents had a combined record of 18-44-4.

Rohacik acknowledges that “you’re never going to put him in at this point in his career if he doesn’t have the edge.”

On the other hand, manager Larry Army Jr. points out, Rodriguez’s team, including chief trainer Peter Manfredo Sr. would hardly be involved if they didn’t think the boxer had the talent to go far. And by all accounts, the majority of Rodriguez’s opponents — even those with losing records — have hardly been chumps.

Rodriguez’s other trainer, Carlos Garcia, is clear in his assessment. After shepherding Rodriguez to this point from the time he was a teen, Garcia says without hesitation, “He’s one of the best.”

Garcia, who has trained three-time World Champion Jose Antonio Rivera, 4-time amateur champion Bobby Harris, and seen more “promising” young boxers walk through his doors than anyone else in the area, says it was quickly apparent to him that Rodriguez was a talent, before Rodriguez himself even had a clue. “After a year, I knew he was going to go places.”

Rodriguez says it took him a bit longer. “I think I had talent, and I was winning my fights ... by the time I realized it, I was on the national team and one of the best in the country.”

What makes him special? It’s not just his talent, says Garcia; there are plenty of talented kids who come to his gym and either burn out, lose focus, or fade away. It was Rodriguez’s attitude that pushed him apart from his peers, despite his late start.

“He never said no to a fight, even if he was sick,” says Garcia. Actually, that’s a bit of an understatement. Rodriguez never even told Garcia if he was sick, knowing Garcia would pull him out of a fight.

Rohacik voices a similar opinion. “[He has a] great work ethic ... he loves nothing more than getting in the ring and fighting. His mindset is the type it takes to go a long way. He has a good mind for the game.”

It’s hard to describe that mindset, but Rodriguez tries.



For one, there’s his love of fighting, of being in the ring. “That’s where I feel safe,” he says.

Garcia says he’s always been that way, that as a teen, he had to be convinced to work out instead of just sparring. And when he did spar, he constantly tried to go without head gear in the ring because he was too used to boxing without it on the streets.

Then, there’s the work he’s willing to put in. Rodriguez’s training regimen would make Ivan Drago shudder.

Rodriguez does cardio work virtually every morning; running sub-3-minute half-mile circuits up to four times, Garcia reports. A sub-six minute mile? Cakewalk.

Then there’s the afternoon drive to the boxing gym in Pawtucket six days a week, followed Monday, Wednesday and Friday by a grueling session with strength coach Graeme Prue.

Yet, training for boxing is an easy game for Rodriguez. “I just show up,” he says, to do what he is told.

It’s a similar attitude on fight day.

Rodriguez displays an unnatural calmness before his fights. Like any boxer, he loves to talk about how the training is the real work, how once he’s in the ring it’s all easy and just calling on weeks and months of preparation. But for a young fighter with the pressures of raising a family on his shoulders, Rodriguez seems almost totally at ease. He admits the most difficult part of fighting is the long day between the weigh-in and the first bell; aside from that, he’s in his comfort zone.

Garcia is so confident in his fighter’s physical and mental capacities, he repeatedly declares that Rodriguez will be a world champion within two years. That’s heady stuff for a guy whose initial plans included fighting in the Beijing Olympics over the summer, and going pro sometime this fall.

Rodriguez acknowledges the pain of missing the Olympics, but views it as an opportunity. “If I had just come up out of the Olympics right now ... I wouldn’t be starting 8-0. They have to play catch up with me. I do wish I was an Olympian, but I’m happy where I’m at right now,” he says.

The game plan

Two or three years until a world championship may seem ambitious, but Army says it’s all part of the pre-set road map.

Part one of the plan is how Rodriguez is being prepared. He has two boxing coaches, a manager, a nutritionist, and a strength and conditioning coach making up the core of his team. “No one who is 6 or 7 and 0 has that kind of information,” brags Army. In truth, it’s a huge team that is requires a huge investment on Army’s part, and is usually only seen for more established contenders.

On the fight side, Army’s plan is to have Rodriguez fight again twice in the next three months, including a shot at a junior championship by the end of the year.

Rohacik says it’s that plan that may make the goal a reality.

“I really think everything has been done by the people around him. They’ve done everything the right way [by] bringing him along with the right type of fights he needs at this point in his career,” he says.

Compared to the other amateurs around the country who went pro at the same time, says Rohacik, Rodriguez is “stepping up more.”

“He could be fighting easier guys,” he notes. “In fact, most people would probably have him on an easier course. He’s getting more experience against better people at an early part of his career, and that’s a positive, as long as he’s winning every fight.”

Army agrees. “He’s ahead of schedule. The last two fights especially were fights most 6-0 guys don’t take. We’ve fought very tough kids...the only way we’re going to uncover weaknesses is to get rounds.”

Still, Rodriguez is on an unconventional road by not agreeing to sign on with a promoter early in his career. Army says it’s all been part of the plan, even if it has reportedly made it harder to get Rodriguez bouts at times. After all, no one goes into a fight hoping to lose, and Rodriguez makes a tough opponent. Without a contracted promoter to help out, it can make it tough to find fights, thus forcing Rodriguez’s team to look outside the region.

“We knew we wouldn’t have people banging down the door,” says Army. “We’re trying to break the mold here.”

Rodriguez choosing Army over established managers such as Don King’s son Carl was clear evidence of that.

As Rodriguez’s stature explodes, so do the calls from the top promoters, including Top Rank, Warrior, Golden Boy, and Irish Ropes.

Not that anything is a guarantee. As much as Rohacik thinks Rodriguez has a legitimate chance to be a champion, he knows there’s a huge element of luck involved.

“That’s a goal they should have ... [but ] it’s too early to say. It’s looking very promising, but it’s still early in his career.”


Locally known

Like Rivera before him, Rodriguez tries to pay his respects to his roots as much as possible. He still trains occasionally at the Boys & Girls Club, and says on cue, “I have a good connection to Worcester, and stay close to where I came from.”

But as much as Rodriguez gives props to the local scene and his local roots, the truth is, at some point, to make the jump to the level he wants, he’ll have to look at the bigger picture.

For Rodriguez, that transition has come sooner than some expected, and has meant some growing pains.

Earlier this year, a minor controversy erupted when Rodriguez committed to then backed off fighting on the undercard of Rivera’s one-time comeback fight, the first fight Rivera promoted under his new company. It caused a stir in the local boxing scene, and Army admits it wasn’t a popular decision. “You try to balance your goal of becoming a champion, with making people happy. And the opportunity presented itself that night,” says Army, citing the bigger crowd and the national press Rodriguez got fighting in Boston.

Rodriguez acknowledges the transition has been a “little tough.”

Down the road Image

There’s nothing worse than watching a boxer who should have quit long ago trying to slug it out for one more shot of glory. And with such a short active lifespan in the ring, you almost have to know when you want to quit before you start.

“My goal is to get my family comfortable, then [box] for the hell of it. I hope I know when to quit,” says Rodriguez. “This is who I am, what I love.

“I don’t want to be 40 [and fighting] ... but maybe 38.”

But Rodriguez isn’t looking ahead that far. Yet. As he’s walking away from an interview, he’s sure to point out his e-mail address: “thenextchamp.” It’s hard to tell if he wants a quick “hi” down the road or just wants to point out one more time, in that slightly subtle manner that his goal is clear.

“It’s the power of self-persuasion,” quips Army.

Or maybe it’s just confidence.

Are you still checking in?

Life is busy and crazy. I have increased my hours at work. I now work 10am-6pm Mon-Thursday, which is a great schedule for me. I get to get up with the kids in the am, feed them breakfast, pick out their clothes, head to work and am home in time for dinner, tubby, pjs, play and a story. And I still have my Fridays off for aquatic therapy and our new addition Parent/Child swim classes. Edwin and I take the kids to the pool for 9:45am. Edwin does PT with Peter which consists of him in a vertical position being held under his armpits while he's encouraged to "kick" or "run" in the pool. He has recently began moving his arms as well, which is great. The "carrots" are floating pool toys that are placed just out of his reach and he'll "run" and reach to try and get them. This works his trunk muscles and it's a great workout and he loves it. I usually have Serena during this time and we mimic what Edwin does on a less "therapuetic" scale. She finally enjoys the water and doesn't cling to me anymore. This last 30 minutes.
Then the swim class begins. There is a range of ages and we have the youngest, I believe one of the boys is younger, but he is walking and seems more cognitively advanced than Edwin. Either way, it's lots of fun and there is singing, toys, and some basic skills. Currently we are working on getting Edwin to climb out of the pool...he can almost do it...he needs a little support on his rear, and gets the concept of putting one knee up. We are working on blowing bubbles in the water with both kids. They like to laugh while we do it but have yet to do it themselves. The swim class is also for 1/2 hour, so they last over an hour in the pool and do wonderfully. It's a super fun part of our Fridays.
Saturdays are hippotherapy and everything was going well until this past week. They tried Edwin on a new horse who is much bigger than his usual, Pedro (unfortunately, Dutchess who was his first horse fell ill and passed away a few weeks ago.) Well, this bigger horse is named Prince and he is much wider, which meant Edwin's legs were really spread apart. Also, Prince didn't have the horse-shoe shaped hand bar on his sadle and Edwin didn't really know what he could hold onto for support. He got very tired and frightened and began crying (a first) and was reaching down to the therapist to get him off. He was so upset that even when they switched him to Pedro, he didn't want to do it anymore. So we didn't push it and they promised to keep Pedro as Edwin's horse and he wouldn't have to ride Prince until he is bigger. Hopefully this week we will get back to tear-free hippotherapy.
The AFOs are going ok. He's tolerating them better and will take steps in the walker with them on. He is much better with the walker without the AFOs, although he still has not figured steering out and of course his feet turn out quite a bit without the AFOs. He wants to be upright even more, and cruises wherever he can. His weakness in his trunk is still very evident, but we are slowing making progress. It seems like it will be forever until he is walking, or even standing unassisted, but again, I have to keep everything in perspective.
Both kids still drink only milk, and only from a bottle. Trying to get Serena off of the bottle is going to be extremely challenging, and frankly, it soothes them and makes them happy and I'm not that worried about it. They get their teeth brushed and have been to the dentist and I am not totally freaking about them still being on the bottle. We'll try sippy cups again in a few weeks.
Serena is repeating words like crazy and is now answering questions. Her answer is almost always "no" but sometimes she'll say "yeah." She said "ten" yesterday and I am trying to get her to count. She can point to her hair, nose, belly, and I'm working on cheeks. She will give Edwin his bottle for me when she follows me out to the kitchen, and she will pat his head and hug him if he cries. She is a big help sometimes! She is starting to really pick up after herself and likes to "clean" the floor and try to use the vacuum. Her voice is still very hoarse and "duck" sounding at times and I'd be lying if I said I wasn't worried about starting pre school next year. I really worry about her being teased and hope with maturity comes an awareness of controlling her voice.
As far as speech we haven't had any luck with finding a speech therapist who helps much with either child. Edwin is still non verbal and Serena could use ST as well. Edwin would probably benefit from signing, but to be honest no one has been very consistent with it, including myself, and I don't know how to make it a part of his day when we have 3 different nurses and an EI team that doesn't seem to push it. I guess I should lead the way and really do sign with him. We have all the videos, it's just a matter of implementing it. Edwin won't pick it up like Serena would, or our friend Hallie, but I think he could do it with a lot of practice and guidance. Truth be told, I am really worried about him cognitively, but I try to push fears out of my mind for now and do everything I can to teach him and help him grow and develop. Time will tell how much impact his early birth and traumatic first 4 months of life have effected him. I want so badly to see him walk and hear him talk. I try to be strong but sometimes it does cause me to break down to think of how delayed he is and wonder what his life will be like. I hope I can make it the very best life.

Anyway, things are going well and we have so much fun with the kids. They are such a joy to be around. Their birthday is coming up and we are doing a Curious George theme! I can't believe they will be two. They have come such a long way and I am so unbelievably grateful to have them in my life. I can't even fathom things going another way, whether speaking about our choices or things out of our control. It is an honor to parent these children. I still think about their birth on an almost daily basis and it is still painful for me. I wonder if it will ever feel less painful, less traumatic? I know I will always treat Serena and Edwin special because of all they've been through and I know they will be spoiled to some degree and I'm ok with that. I think they deserve it!
I've also been thinking about when we could ever think about having another baby. I have decided that I am going to go to law school part time nights next fall. It will take me 4 years to get my degree, and of course I have to pass the bar. That means realistically we are talking 5 years from now, which would make me 30-31. I really want to have more children but it's scary and it has to be at a time that I can commit to potentially months of bedrest since we really have no idea why I went into PTL and we don't know if I'd have twins again because they were spontaneous. It's a lot to think about, but I figure things will happen as they should and 30 or 31 isn't too late, and it will give us a good sense of S & E's needs since they'd be 7 years old. WOW! I wonder what they will be like at 7? I can hardly believe they'll be 2 in a 2 short weeks!!!!

Our day at the Spencer Fair..***Edited with new pics***

Our day at the Spencer Fair. (More pictures to come.) We had a blast!!!
See how hard it is to get a decent pic? They are way too interested in everything around them!












More pics