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
Friday, February 27, 2009
Sunday, February 22, 2009
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!
Thursday, February 19, 2009
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!
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!
Monday, February 16, 2009
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!
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!
Sunday, February 8, 2009
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!
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!
Sunday, February 1, 2009
Update on my darlings
Who needs all these toys when we can watch the Backyardigans?
Over the past couple of weeks Edwin has been doing MUCH better with his walker. I have also not written much about his DAFOs, but he is finally used to these and does much better with his walker and with independent standing for a few seconds with them. He needs them for support and balance, and it's almost like their weight give him more body awareness...if that makes any sense.
Saturday was the twin's cousin's 2nd birthday (the one born at 29 weeks...came up to the NICU the week we were finally taking our twins home..She is developing typically and does not have health issues either...thank goodness.) Her birthday was at McDonalds. I was nervous about this because of germs, and because I didn't want Edwin crawling on the dirty floor, but also didn't want him to be held the entire time and feel left out. I decided we were definitely bringing his walker and he was going to use it. Edwin said no at first, I'm not really sure why, but sometimes I wonder how he feels about Edwin's motor issues...I don't know maybe I'm looking into this too much. Maybe he just felt it would be inconvient. I didn't give him time to explain, I told him we were bringing it.
It was AMAZING. Edwin did sooo well. He walked in his walker the ENTIRE time, and only tried to crawl 2-3 times and we were able to encourage him to stand back up and continue walking is his walker. He steered completely on his own, and even went quickly when excited. He was smiling ear to ear and was so proud. I'm so mad at myself for forgetting the camera (we were running late since Serena was napping.)
He was afraid of the play place and went into a tunnel with me once, but gripped me around my neck tightly and didn't want to go unless I held him, which was pretty impossible...plus I was a little freaked out by the tunnel..lol. But he was perfectly content whipping around in his walker. I was so proud I nearly cried.
Many people stared, especially other kids. Some kids tried to grab the walker away from him, but I was there to tell them it was his and he needed it. Some of Edwin's family was confused as to why he had it and asked me. Edwin has never explained to his family why Edwin doesn't walk or talk for that matter, and didn't share what we were told by the neurologist. He says he doesn't know how to translate or explain it to them. Again, I'm not really sure why he hasn't told them. I just said, "he needs it to walk." I figure it's his responsibility to explain it to them, and I wish he would. They probably think he can't walk because I hold him too much or something ridiculous because they literally didn't make the connection even seeing him in his walker with his precious legs going all over the place.
On that note, I don't know how I feel about adults staring at my son in his walker. I like when people look and smile or make an encouraging comment to him, but staring and then walking away kind of irratates me even though I completely understand that they're curious and not doing anything malicious. I guess it's something to get used to.
Anyway, my little guy is doing so well with his walker and he is voluntarily going for it now and wants to be upright most of the time. I feel so much better about taking the walker out in public (nervous before because he'd get down and crawl every few steps and the ground is dirty in public.) But he is staying upright and WALKING to his desired destination!
His language and social skills are also taking off with being upright. He is asking for his bottle consistently and calling for me appropriately...not just babbling. He is giggling ALL the time, and smiling much more. He is maturing leaps and bounds with his increased ability to move about.
As for my baby girl, Serena is the funniest, cutest, most lovable little girl in the world! She is sooo amazingly funny, curious, and sassy...I just love her to pieces. At the party she was very shy at first and then warmed up and played with the other kids, gave them hugs, and patted them on the back and said "it's ok" when one cried. She also climbed all through the play place and came down the slide. She was so tired by the time she came home that after her tubby and jammies she said "up" snuggled her head into my neck and said "nuh night." It was adorable! She also says "Wah Woooh" which means "Love you!" She is talking in 2-3 words phrases now, and breaks out in song at times. Today she was in her highchair eating and started doing (song and motions)the "swish swish swish" from wheels on the bus! She calls Edwin "Aunee" and it's soo funny. She will name everyone in a picture or when pointing to them, but won't say herself...it's pretty funny. We went to Papa Ginos and she had her own plate of pizza and was taking bites of big pieces and saying "mmmmmm it's good." I swear if we had a video on her 24/7 it would make great reality TV. I haven't tried the potty recently because she cried and got nervous last time. I think I'm going to get a potty for the big potty and she'll probably like that better.
Serena is also OBSESSED with her blankie, whom she calls "Kee Kee." She wants it at breakfast, when she's tired, in the car, and of course at night. She totes it around like Lynus. It's adorable. (I still sleep with mine so she gets that from me....ssshhhh!)
Today we went to the indoor zoo and Edwin forgot my camera!!!! I stayed in the car with the kids and he was suppose to run up and get it while putting the groceries away, and he ended up forgetting it.
Anyway, they went on some rides. Serena was terrified and cried, but Edwin loved it and was steering his wheel on the car as they went round and round. I was surprised because he's usually my sensitive guy and Serena's a toughie. It was fun to watch them. They are growing up so fast!
Over the past couple of weeks Edwin has been doing MUCH better with his walker. I have also not written much about his DAFOs, but he is finally used to these and does much better with his walker and with independent standing for a few seconds with them. He needs them for support and balance, and it's almost like their weight give him more body awareness...if that makes any sense.
Saturday was the twin's cousin's 2nd birthday (the one born at 29 weeks...came up to the NICU the week we were finally taking our twins home..She is developing typically and does not have health issues either...thank goodness.) Her birthday was at McDonalds. I was nervous about this because of germs, and because I didn't want Edwin crawling on the dirty floor, but also didn't want him to be held the entire time and feel left out. I decided we were definitely bringing his walker and he was going to use it. Edwin said no at first, I'm not really sure why, but sometimes I wonder how he feels about Edwin's motor issues...I don't know maybe I'm looking into this too much. Maybe he just felt it would be inconvient. I didn't give him time to explain, I told him we were bringing it.
It was AMAZING. Edwin did sooo well. He walked in his walker the ENTIRE time, and only tried to crawl 2-3 times and we were able to encourage him to stand back up and continue walking is his walker. He steered completely on his own, and even went quickly when excited. He was smiling ear to ear and was so proud. I'm so mad at myself for forgetting the camera (we were running late since Serena was napping.)
He was afraid of the play place and went into a tunnel with me once, but gripped me around my neck tightly and didn't want to go unless I held him, which was pretty impossible...plus I was a little freaked out by the tunnel..lol. But he was perfectly content whipping around in his walker. I was so proud I nearly cried.
Many people stared, especially other kids. Some kids tried to grab the walker away from him, but I was there to tell them it was his and he needed it. Some of Edwin's family was confused as to why he had it and asked me. Edwin has never explained to his family why Edwin doesn't walk or talk for that matter, and didn't share what we were told by the neurologist. He says he doesn't know how to translate or explain it to them. Again, I'm not really sure why he hasn't told them. I just said, "he needs it to walk." I figure it's his responsibility to explain it to them, and I wish he would. They probably think he can't walk because I hold him too much or something ridiculous because they literally didn't make the connection even seeing him in his walker with his precious legs going all over the place.
On that note, I don't know how I feel about adults staring at my son in his walker. I like when people look and smile or make an encouraging comment to him, but staring and then walking away kind of irratates me even though I completely understand that they're curious and not doing anything malicious. I guess it's something to get used to.
Anyway, my little guy is doing so well with his walker and he is voluntarily going for it now and wants to be upright most of the time. I feel so much better about taking the walker out in public (nervous before because he'd get down and crawl every few steps and the ground is dirty in public.) But he is staying upright and WALKING to his desired destination!
His language and social skills are also taking off with being upright. He is asking for his bottle consistently and calling for me appropriately...not just babbling. He is giggling ALL the time, and smiling much more. He is maturing leaps and bounds with his increased ability to move about.
As for my baby girl, Serena is the funniest, cutest, most lovable little girl in the world! She is sooo amazingly funny, curious, and sassy...I just love her to pieces. At the party she was very shy at first and then warmed up and played with the other kids, gave them hugs, and patted them on the back and said "it's ok" when one cried. She also climbed all through the play place and came down the slide. She was so tired by the time she came home that after her tubby and jammies she said "up" snuggled her head into my neck and said "nuh night." It was adorable! She also says "Wah Woooh" which means "Love you!" She is talking in 2-3 words phrases now, and breaks out in song at times. Today she was in her highchair eating and started doing (song and motions)the "swish swish swish" from wheels on the bus! She calls Edwin "Aunee" and it's soo funny. She will name everyone in a picture or when pointing to them, but won't say herself...it's pretty funny. We went to Papa Ginos and she had her own plate of pizza and was taking bites of big pieces and saying "mmmmmm it's good." I swear if we had a video on her 24/7 it would make great reality TV. I haven't tried the potty recently because she cried and got nervous last time. I think I'm going to get a potty for the big potty and she'll probably like that better.
Serena is also OBSESSED with her blankie, whom she calls "Kee Kee." She wants it at breakfast, when she's tired, in the car, and of course at night. She totes it around like Lynus. It's adorable. (I still sleep with mine so she gets that from me....ssshhhh!)
Today we went to the indoor zoo and Edwin forgot my camera!!!! I stayed in the car with the kids and he was suppose to run up and get it while putting the groceries away, and he ended up forgetting it.
Anyway, they went on some rides. Serena was terrified and cried, but Edwin loved it and was steering his wheel on the car as they went round and round. I was surprised because he's usually my sensitive guy and Serena's a toughie. It was fun to watch them. They are growing up so fast!
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