Transient dystonia, pulling to stand while Mommy's on the potty, eating junk food with Mommy, and other thoughts...***EDITED with pictures****

Cute girl!

Reading together

Reading

Clapping!

Adorable

Teeth!

Sittting

All done sitting

AS many of you know, EJ was diagnosed with transient dystonia, in his case, low tone in the trunk. Transient dystonia refers to abnormal tone that eventually goes away. It is suppose to go away within a year, although EJ's low tone in his trunk is still present. What I have seen recently though is his increased gross motor ability...the getting on all fours to look at objects at or above eye level, belly crawling, but getting up on knees and moving very quickly as opposed to the inch worm crawl he used to do, and OF COURSE pulling to stand. And today...TAKING STEPS sideways while holding onto the couch to get to me or to a toy on the other side of the couch!
In other words, he is beginning to "cruise!"
Now, he still has a ways to go before he begins to stand unassisted or walk...his tone is still quite floopy in his trunk...he still sits with at least one of his hands propping him up for support. He is wobbily when you hold onto his hands while he is standing. But that determination is painted all over his face and he can concentrate and keep his balance for periods of time. You can physically see him focusing on his balance. It is remarkable how determined he is.
PT is very impressed and believes he truly has transient dystonia and not CP, although I am curious as to why his dystonia is still present as he is now 1 year adjusted age. But I do see his tone improving and she said you wouldn't see these kinds of results within such a short time with a child with CP.
Regardless of what his dx is, I am thrilled at how hard he works and how determined he is.
Determined!



Too much info here, but tonight I HAD to use the bathroom while I was alone with awake S&E...bad combo. I knew Edwin would have a fit if I left the room, even if only for a second to use the bathroom, so I brought him out to the kitchen...of course Beanie followed. He began to scream when I put him down, and over he came crawling across the kitchen floor, into to the bathroom, and pulled to stand on my legs while I sat there! lol...of course Beanie came over to, so I am sitting there with both kids standing, holding onto my legs! I officially have NO privacy! But I'm really not complaining...the fact that they are both pulling to stand is an amazing milestone that we couldn't be sure they'd be able to meet. I am so thankful for everything they do.





It was especially cool to be able to feed them some of my subway sandwich tonight for dinner. They also had some of grammy's french fries with melted cheese from my grandpa's bday dinner, which they LOVED of course. They even had some of my cookie for desert. They just sat out in the living room with me and we all indulged together. There is little these kiddos don't eat, especially table food that mommy is eating. I recognize just how blessed we are in this area.







Beanie PURPOSELY let go while standing today, which was very cool. She is THINKING about taking steps, which you can see in her face every time she stands there and sees something she wants. But instead, she squats down and crawls over. It'll come soon though...then we're all in BIG trouble...haha, especially poor EJ who tries so hard to keep up with his busy sister.
Standing

So I know this is kind of repetitive of last night's post, but there is so much I am thankful for and so much I never want to forget, because this blog is also their baby book.

Oh yeah, Serena said "bye bye" A LOT today (when prompted). VERY EXCITING!

Can you tell I'm super proud of every little thing my kiddos are doing? I can't believe they are growing upo right before our eyes!!! Pictures to come tomorrow...Mommy doesn't work on Fridays!!! :)

One year and one day home

I can't believe I didn't mention yesterday marked one year of having S&E home. Well, maybe I do know why.
Things are going so well with my sweeties, and life seems so "normal" with them, their traumatic birth is not always at the forefront of my mind anymore. Serena's development is taking off like a jet plane. She is copying EVEYTHING we say and do, including this week after us repeating it a couple of times "ma ma" (easy one)"pa pa" "pow pow" "ga ga" "bye bye", blowing a kiss, and clapping like crazy. She is standing for long periods of time unassisted. Today she stood all by herself in the middle of the floor while clapping and bouncing up and down dancing. She is truly a little toddler.
My little guy is soooo attached to Mommy. He is now going through seperation anxiety BIG time, and I can't leave the room without his SCREAMING hysterically. He wants me to hold him all the time and cries when other people try to...so unlike him. It's like Edwin is doing the things Serena did, only 3-5 months later. He is my sweetie, and I can't lie, it feels so good to be the only one he wants :) Edwin's off O2 1 hour twice a day, and he does so well I usually keep him off a little longer....sats are 98 without O2 consistently. He is pulling to stand on EVERYTHING with little effort, and is on his hands and knees a lot, although he still prefers to belly crawl...I'm sure because it's easier and less work for his abs...which is what he NEEDS to be working. We try sitting, but that's getting tough b/c he can get out of sitting so easily.

So we've just been living life like it's typical. Of course it's not because we have O2, monitors, and thearpy, but I really feel like I'm moving forward from the rough first 4 months of their lives. While it will never escape me or them completely, I feel excited about life and our future, and am so pleased with all of the progress they continue to make.

One thing that made me feel good about the future was my day at work.
Today at work I spent a lot of one on one time with a very special young man. I've known him for the past 2 years, but today I felt a deep respect and connection to him. He is 26 years old and was born with a genetic disorder which is the cause of his distinct physical characteristics and significant cognitive impairment. After years in the public school system, which clearly did NOTHING for him, he is now in an adult program which is teaching him to add and subtract and to read simple sentences. He sat with me and read to me today, and I was so moved. As he read "The woman is in the tent" I felt an overwhelming sense of joy for him. He was so proud of himself and was working so hard. He is often teased for his appearance and his cognitive impairment, which infuriates me when I hear about it. He is such an amazing person, and I know I would never have appreciated all he can do if I didn't know about the future S&E could face. Once people open up their minds and hearts, they too can see how amazing he is.
As I worked with him on his subtraction and held up my fingers so he could count them, I imagined helping Serena and Edwin with their homework. I know with the help and guidance of our family Serena and Edwin are going to have amazing lives. I know that there is a place for them, and I know that no developmental chart or IQ test will define them.
What I know for certain is it is a blessing that I get to teach my children things, and my respect and appreciation for life has grown leaps and bounds because of my beautiful children. It's amazing how beings so small have taught me so much.
So one year later I thank you Serena and Edwin, for teaching Mommy so much about life and what truly matters. Thank you for making me smile every day and making me so proud. Thank you for showing me you know how much I love you and for ALWAYS showing me how much I mean to you.
"I love you and I love you..."

Pictures from 1 year adjusted day

Things have been crazy with Edwin and his boxing. Here are some pictures from the kid's one year adjusted day. They were watching Sesame Street and sat still for quite some time.
I'll have a more in depth update later this week.

More Edwin news

Next fight is in Boston on Feb 8th


Rodriguez Prevails In Pro Debut!
* photo: Ed Rosa

In front of a major contingency of hometown fans who made up many of the 1200 fans in attendance this evening, the highly acclaimed, Edwin Rodriguez, of Worcester, MA launched his highly anticipated professional career with a first round technical knockout in a shot heard round the world! The victim, Samuel Ortiz Gomez, of Orlando, Florida, was the first of many to come according to Rodriguez’s excited corner.

From the bells first ring, the six foot tall and lanky 22 year old middleweight Rodriguez towered over Gomez, in height, reach, offense, and skill. Gomez on the hunt for his own first professional win after three tries came out focused and ready to duel. But Rodriguez was all business, focused, shifted into gear, and never stopped the onslaught until his challenger, as if to royalty, bowed and kneeled before him on the canvas in submission at 1:33 of the first round, the second knockdown of the round. The referee waived the fight off, and the crowd went wild!

After the fight, Rodriquez said, “I felt great, I worked hard for it. I believe the last body shot I threw ended the fight. I hit him early, and I didn’t think he had time to recuperate. I want to also thank all my fans for turning out, and thank my corner and management.”

His corner man, Carlos Garcia, a boxing icon in Central Massachusetts who has worked in the trenches of the amateur world for years with fighters from his stable including three time world champion Jose Antonio Rivera (38-6, 24 KOs) and Sean Fitzgerald (29-2, 11 KOs), stated after the fight that, “I thought his fight was beautiful. He was ready for anything. He was ready for the pros before, now he’s really matured. If Edwin stays in that line, there is no doubt in my mind that you witnessed a future world champ tonight!”

Garcia continued by saying, “To me, Edwin is like Jose (Rivera), with a beautiful heart, and he’s going to stay straight and right on. Edwin was sparring with a lot of people, including fighters from Peter Manfredo’s gym, some of the Worcester guys, and Edwin is in top, top shape. And I’ve got a great team, including manager, Larry Army, and Dave Turney, from New York, one of the best cut men in the sport, so I’ve got the team I want. If we do well in our next fight, on February 8th in Boston, we may have an opportunity to fight on the upcoming undercard at Madison Square Garden.”

Jose Antonio Rivera, former WBA light middleweight champ and WBA welterweight champ, who came to witness history, added that “I thought Edwin fought like a fighter who had ten or fifteen fights already. He was patient, kept his composure, didn’t get into a wild fight, paced his shot, and worked the body. You don’t see that from guys that just turned pro!”

Rodriguez achieved an amateur record of (84-9), and won the USA Boxing national championship for 2005, and the Golden Gloves national championship for 2006, both at the 160 pound mark.

1-0 1 TKO

Edwin Rodriguez Scores KO in Pro Debut

Two-time national amateur champion Edwin Rodriguez of Worcester, Mass., made a most successful professional debut Saturday night, stopping Samuel Ortiz Gomez by technical knockout in the first round of a middleweight bout scheduled for four rounds in Mansfield, Mass.

The 22-year-old, 6-foot Rodriguez had little trouble with Gomez, knocking him down twice and halting him at 1:22 of the first.

Rodriguez dropped Gomez, from Orlando, Fla., with a left to the body with but 45 seconds gone in the round. The second and final knockdown administered by Rodriguez came from a right to the head.

“I wanted to take him out,” said Rodriguez, who won the USA Boxing national championship for 2005 and the Golden Gloves national championship for 2006. “Of course, it’s early in my career, but I wanted to make a statement that I’m and up-and- coming prospect.

“I have every confidence I’ll be a world champ,” says Rodriguez, who has lived in Worcester since arriving in the United States from his native Dominican Republic during 1998. “I know every one who turns pro says that, but I believe I have the background and the tools to make it happen.”

Those tools include a large upper body, quick hands, superb technique, deft defense and outstanding power, all of which were on display the brief time Gomez weathered Rodriguez’s onslaught.

Rodriguez weighed 162 pounds while the 25-year-old Gomez, now 0-4, came in at 156.

Rodriguez’s next fight, to take place during February, will be announced soon.

_____________________________________________________________________________________


Sunday, January 27, 2008
Rodriguez scores a TKO in pro debut

22-year-old overpowers first opponent in just 82 seconds

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

MANSFIELD— Flanked as he entered the ring by those who wrote most of Worcester’s earlier boxing history, middleweight Edwin Rodriguez last night took the first step toward what he hopes is a new chapter in that story.

Accompanied on his march into the Mansfield SportsPlex arena by former Worcester standouts José Antonio Rivera, Bobby Harris and Sean Fitzgerald, the 22-year-old Rodriguez went on the attack right away, cutting loose with a flurry of punches to the body and head of Samuel Ortiz Gomez before scoring a lopsided TKO at 1:22 of the first round in his pro debut before a highly partisan crowd of more than 1,000 fans.

With a seven-inch height advantage, not to mention a significant edge in strength and ability, Rodriguez made quick work of the winless Ortiz (0-4), who had to be flown in from Orlando, Fla., and was paid more money because of the difficulty Rodriguez’s handlers already are having finding opponents for the two-time national amateur champion from the Dominican Republic.


“Tonight’s fight won’t help that,” shrugged Larry Army Jr., Rodriguez’s manager. “Right now, there’s not a lot of younger fighters in Massachusetts who will fight us.”

Rodriguez hopes to pick up the championship gauntlet recently thrown down by Rivera, the now-retired three-time world welterweight champion. But first he had to overcome fears about fighting for the first time with 10-ounce gloves and without amateur headgear.

“It was easier (than I thought),” he said, “because as soon as I let one punch go, it was like, ‘Oh, it’s the same thing.’ It’s the same game, just no headgear and smaller gloves, so I was faster. Every time I hit him, I’d feel like I was hitting him, where in amateurs you’d hit somebody and it felt like a little love tap.

“Now I feel the power going through my whole body.”

Imagine how the 25-year-old Ortiz felt. He went down to one knee twice to avoid Rodriguez’s assault, and when referee Mike Marvelle asked him how he felt after the second knockdown, he shook his head no, ending the fight after 82 seconds — which is 39 seconds longer than he lasted in his previous outing.

“We worked on going to the body in the first round, chopping the tree down,” said Rodriguez, who weighed in at 162 pounds, safely under the 163 limit for this bout. It was a distinct change from his amateur days, when he would have to starve himself for a week to make weight, but getting a nutritionist has changed all that.

“It played a big role,” Rodriguez said. “I was energized; I was hyper. I did what I had to do — I took him out early, as expected.”

Rodriguez fights next on Feb. 8 at The Castle in Boston against 22-year-old Fitzgerald Johnson (1-2-0, 1 KO) of Ashboro, N.C. He also has tentative bouts set for Feb. 23 in New York City, March 7 in Philadelphia, and a blueprint for as far down the road as April in California and May in Albuquerque, N.M.

“We’re very happy with the fight and the outcome,” Army said. “I think tonight was the first step toward our goal, and our goal has always been world championship titles — plural. All in all, I would say it’s an A-plus.”

Team Rodriguez sold about 200 tickets for the fight, but Army estimated the Worcester-area contingent at about 450, including a virtual battalion of Worcester police officers.

“I didn’t know I had so many fans,” said Rodriguez, who was greeted by a rousing standing ovation by fans clad in yellow team T-shirts. “I didn’t want to let nobody down. I had my family, my fiancée, everybody here supporting me. … I was under pressure, but I did what I had to do to come out with an impressive win.”

Edwin on film
Good news apparently travels fast. Based entirely on his gaudy amateur credentials, Rodriguez is already the subject of a documentary being prepared by 3 Ring Films of Northampton.

Steve Forman, who heads a six-man crew that was on hand for Rodriguez’s pro debut last night, said the film actually will focus on three amateur fighters — U.S. Olympic favorite Demetrius “Boo Boo” Andrade of Providence, the World Championships gold medalist and four-time national amateur champion at welterweight; Danny O’Connor of Framingham, a junior welterweight standout; and Rodriguez, all of whom are close friends.

“They’re the three best young fighters in this game,” said Forman, who said he chose Rodriguez because of his two national amateur titles and his pro potential.

“I think he’s got tremendous heart, and he’s talented,” Forman added. “I’m particularly interested in his making the transition from the amateur to the pro game.”


The shirts say "Team Rodriguez" on the back, and on the front say "My Daddy is a future world champ!"
Made my Stephanie, Guinn Triplet's mom!

Busy, busy

Oh boy! Tomorrow is Edwin's first professional boxing fight! I am so excited and nervous! I'll post more about that Sunday or Monday.

As for the kids...well we found out Serena is allergic to penicillin. Her rash is TERRIBLE! The red blotches are ALL over her entire body, and it's itchy, and Benadryl isn't helping. I feel so terrible. She broke out on day 10 (her last day) of the amoxicillin. So my poor girl looks like a pink leopard and goes through fits of itchiness and fussiness.
Besides that she is doing great. She says "mama" consistently and appropriately (to me when I pick her up, when she wants me, and when she's upset), and her "language" is really improving. She says "bra bra" and I tie that with "brother." She also mimics sounds like clicking, and has this little conversation noise she makes when "talking to herself." She claps, stacks rings on the cone, and drops things into appropriate places and gets them out again. She also found the toliet, when a busy absent minded Daddy let her follow him into the bathroom while he was shaving. Apparently she was having a blast slaphing her hands in it. Gross...He washed her hands in the sink and boy did she like that. Splash, Splash again.
Tonight she stood unassisted for 30 seconds...her back was turned away from me, so she didn't really "know" she was doing it...hence her not luaghing and falling to her hands and knees like she's been doing. Her not standing unassisted has a lot to do with her being scared of letting go rather than not being able to let go.
Serena also had her EI eval today and still qualifies. We rushed through it, because of our need to make it to the weigh ins for Edwin's fight, and I'll have more specifics next week. Basically she is close to 12 months for most things, but has slight delays with fine motor and something else...I can't even remember.
Edwin has delays in all areas (as expected) but he's making progress...just on his own time.
Speaking of my guy, he is doing well. He got his top right tooth, and has been a little fussy, so I think the other is working its way out. He is doing better picking up food off his tray and successfully getting it into his mouth. He says, "heey/hiii", but not "mama" consistently, although he says "mmmma" when he is whining. He's ready to do the 1 hour twice a day off O2, but this weekend is so busy for us, I will begin that on Sunday. Today my mom left the room to grab a bottle for them, and when she came back in they were both standing holding onto the couch. EJ pulled to stand on the couch...something I have yet to see him do! So exciting!!! He is still unsteady with his low tone in his trunk so we can't leave him alone in a room now that he can pull up on the couch. He could fall and get hurt since he is unsteady and doesn't have catch reflexes. He is banging two blocks together and has appeared to clap his hands together mimicking us, although it is not as defined as Serena. He gets the concept though! He fed himself spaghetti today and did wonderful picking up the noodles and getting them in his mouth!

Edwin and I are staying at a hotel tomorrow after the fight. I'm excited to spend some special alone time with him, but will worry/miss S&E. I hope I actually sleep and not worry all night, because I could really use some sleep.

Anyway, I'll try and get a picture of Beanie's blotchy skin. It is quite incredible how awful it looks. I hope she gets better soon!

Wish Edwin good luck tomorrow. This is the beginning of a whole new chapter in our lives! The media have been covering him closely and it already feels like he is kinda famous! Can't wait to buy our kids a big house! Hopefully we can afford it soon!

Sometimes...

Sometimes, once Serena and Edwin are fast asleep, and Edwin is still not home, I go to YouTube and watch memorial videos of premature babies who didn't make it. Edwin wonders why I do this to myself, as he comes home and the mascara that I had on from work is smeared down my face. But I am moved by the love these parents have for their son/daughter, which is showcased in the creation of something so beautiful to commemorate a life lost.
It reminds me just how lucky we are to have Serena and Edwin in our lives, and reminds me of the pain we all felt when Keiry passed away (sister-in-law's daughter, who was born at 21 weeks.) It reminds me that this happens far too frequently to families. While we get to enjoy our children every day, there are families hurting every day for the time they didn't get to spend, for the memories that will never be.

So when I'm told Edwin, Jr. was evaluated at around a 9 month level today by Early Intervention (I missed it b/c something came up at work), I am not freaking out. We take things in stride, and EJ is thriving. (I'll have more info on Friday when Serena has her evaluation.) I do care about quality of life, but I don't overly stress about things like gross motor skills. My children are alive, happy, and for the most part healthy. Life has been put in perspective, and after all he's been through, developmentally at an average of 9 months is certainly not the end of the world.

Happy "woulda, coulda, shoulda" Day

One year ago today I was due to have my twins. Of course there was a chance they could come earlier, being twins and all, we just didn't expect them to come 4 months early.
Anyway, today is the day we mark for Serena and Edwin's development. Today they are 1 year adjusted age and should be doing things 12 month old kiddos do.
They do a lot of things 12 months do, and there are things they don't do yet. We're working on those things every day.
I am just so thankful to have my little ones in my life, and although prematurity is at the forefront of our lives, I refuse to be sad about today. It would have been great if they made it to 40 weeks, and turned one today, but I am just thankful they were even able to celebrate a first birthday...for that we are very blessed.
So today I offered them cake that had been frozen since their birthday, (Sept 29.), Edwin ate some bites, but had filled up on his lunch and dinner and wasn't really interested. Serena didn't like it. She doesn't like ice cream either...is she related to me?
They have a little Elmo and little Oscar the Grouch, (see previous post's pictures), so today I got them a matching little Zoe, little Cookie Monster, and a little Ernie. I'll be searching for other members of the gang. Even though I see where Daddy's coming from when he said, "January 21st doesn't mean anything to me. My kids were born on September 29th," it was nice to get them a little something for today.
Unfortunately, I'm not able to upload my pictures off of my camera at the moment, but I'll edit this post and put some up when it's working again.


So, babies, you've come such a long way, and we are so blessed, so honored, so lucky to have you in our lives. LOVE YOU NOW AND FOREVER!!!

For all you boxing fans...

(Pictures added by me, they did not appear in the newspaper)


Sunday, January 20, 2008
Edwin to make debut Saturday

BOXING

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

Two-time national amateur champion Edwin Rodriguez of Worcester begins his quest for professional boxing glory and riches on Saturday night when he makes his pro debut against Samuel Ortiz Gomez (0-3-0) of Orlando, Fla., at the Mansfield SportsPlex.

The 22-year-old Rodriguez, the 2005 USA Boxing and 2006 Golden Gloves national middleweight champion, decided to turn pro shortly after a controversial loss in June to Dominic Wade in the second round of the USA Boxing nationals, ending his dream of qualifying for the 2008 Olympics in Beijing. He finished 89-4 as an amateur.

The 4-rounder against Gomez will be Rodriguez’s first fight without amateur headgear and his first fight at the pro middleweight standard of 160 pounds rather than the amateur limit of 165.


Making that 165-pound limit was sometimes a struggle for Rodriguez, but he since has hired a nutritionist and sworn off fast food, which used to make up the bulk of his diet.

“Edwin looks as good as he’s ever looked in his life,” Rodriguez’s manager, Grafton attorney Larry Army, said on Friday. “He’s down to 163 pounds (he was as high as 180 just three weeks ago). He’s in the best shape of his life.

“I think if he had focused on his training and nutrition plan as an amateur the way he has the last month and a half, there’s no doubt in my mind he’d be in Beijing.”

Chosen by Rodriguez’s matchmaker, Frank Rohacik of Auburn, the 25-year-old Gomez is an interesting opponent. Though he also has fought as a junior middleweight, Gomez went the 4-round limit against Tommy Rainone of New York City, who is currently undefeated (10-0-0) with three knockouts. Rainone has since dropped down to welterweight.

In his last outing in May, Gomez suffered a first-round TKO at the hands of Henry Coyle, a former Irish national champion with 250 amateur bouts under his belt. Coyle is now 4-1 with four KOs.

It’s just the start of what should be a busy first year for Rodriguez. He’ll also fight on Feb. 8 at The Castle at Park Plaza, 64 Arlington St. in Boston, against an as-yet unnamed opponent, with the card to be televised by Telefutura and possibly attended by Oscar De La Hoya of Golden Boy Promotions, which is co-promoting the show with Brockton’s Rich Cappiello.

Rodriguez also may fight on Feb. 23 at Madison Square Garden in New York, on the undercard of the heavyweight showdown between IBF champion Wladimir Klitschko and WBO titlist Sultan Ibragimov, and again on March 7 at the New Alhambra in Philadelphia. Those dates, however, are tentative.

The Mansfield card is being co-promoted by Peter Manfredo Sr., who runs Manfredo’s Gym in Pawtucket, R.I. His son is super middleweight Peter Manfredo Jr. (28-5-1, 13 KOs), “The Pride of Providence,” who gained attention on NBC-TV’s “The Contender” reality series.

The main event at the show will be a 10-round women’s bout between 30-year-old Missy “The Fury” Fiorentino (16-1-0, 6) of Cranston, R.I., the former IWBF featherweight and lightweight champion, and 29-year-old Ela Nunez (5-2-0, 1) of Jamestown, N.Y., for the vacant IWBF super featherweight title.

Tickets are $25, $50, $75 (ringside) and $175 (includes bar and food). They are available at the Boys & Girls Club of Worcester on Tainter Street, where Rodriguez is training, or by calling (401) 723-1359, (508) 509-3236, or visiting bashforcashllc.com.

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Did you read that? Philly...which means we might get to visit Hallie, Abby, and Sharon!!! Hope this pans out...it would be SO exciting to meet our fellow 23 week virtual friend!

Simply couldn't resist

The coolest kid EVER!

I found a binki!

EJ and his Oscar





Serena and her "baby" ELMO!


It's so fun to do their hair! And I can FINALLY put pigtails in Beanie girl's hair! :)

Are they not the cutest?!?!

Happy Birthday Grammy

Happy Birthday Grammy!
Thanks for ALWAYS being there for us (and Mommy and Daddy)!
We love you VERY much and can't wait to celebrate your bday and our (adjusted) bday this weekend!!!!
Here are some pictures of us that'll make your day!