Sunday, May 4, 2008

Feeling a little better

(Read previous post first to understand this one)
I didn't sleep well last night ans woke up super early which is now resulting in a pounding headache. But I'm feeling better because I realize that it's not "too late" and am very thankful for all moms who blog because now I know what to ask for/ what can help Edwin.
I wanted to clarify that he CAN sit up, and recently began sitting without his hands propped. What happens is, he, like I'm sure most hypotonic kids, avoids using his trunk if possible, therefore, since he can get from sitting to crawling, when you put him in sitting he gets right out and plays on his belly. So I can't just put him in the bathtub in sitting because he'll hit his head in an effort to get out of the sitting position. Sometimes he does just fall over because it's really hard work for him to sit up on his bum. He is now resorting to sitting on his heels, which if not corrected, will lilkely expand to him solely "w" sitting.
This is a major reason I believe a reverse walker would be great for him. He wants to be up and walking around/standing, and using the reverse walker would force him to use these muscles he's been trying to avoid using. I am going to post video about his hypotonia so you can see first hand, but to an experienced eye I think you can notice it in pictures (a lot of leaning when standing) and in the videos I have posted in the past. Additionally, he's ankles really need support...they are weak and he stands like he's in a ballet class in "first position." I know giving him DAFOs and using the reverse walker will do wonders for him as he has already accomplished so much 'on his own.'
It was good to talk to my mom and Edwin about this because they made me feel better. There is nothing we can do about PT not addressing this in these past months, but at least I found this out and now we know where to go. Of course my mind races immediately to the families who don't have the resources or the knowledge of blogs and wonder how they navigate through things like this. Thank goodness for blogging!
I am going to take video today of Edwin so you can visualize what I am talking about. And please, I know my blog is private but if you find others who sound similar to EJ pass on my email to them. Thank you!!!


So for all interested here is the article from today's paper re Daddy's win.

Sunday, May 4, 2008
Rodriguez gets quick knockout

BOXING

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


Worcester middleweight Edwin Rodriguez continued his inexorable march toward a major title fight, knocking down Michael Birthmark of Billings, Mont., just 70 seconds after the opening bell, bloodying his nose and cutting him over the right eye before stopping the 24-year-old novice at 2:46 of the first round last night at Coeur d’Alene Casino in Worley, Idaho.

It was the fourth knockout in five fights for Rodriguez (5-0-0), who celebrates his 23rd birthday tomorrow. For Birthmark (1-3), a former Montana state champion in Tough Man Competition who took up boxing only last November, it was the first time he had been stopped.

“He was fast, faster than I’ve ever met in the ring,” Birthmark said by phone after the TKO. “He didn’t have that much power, but the snap in his punches, that did enough damage. It was the speed and the angle of his punches that really bothered me.”


Rodriguez knocked Birthmark down with a pair of left hooks to the body at 1:10. Then he trapped his opponent in the corner and unleashed a barrage that culminated in a “standard five-punch combination” and a decisive uppercut that caused the referee to step in, according to Rodriguez’s manager, Larry Army Jr.

“There was blood coming out his nose, a cut over the right eye,” Army said. “During the combination, (Birthmark) was (caught) in the corner for about 30 seconds. A straight right busted the nose, and an overhand right cut him over the eye.

“It was a dominating performance against a kid who’s never been knocked out.”

Rodriguez, who returns to Worcester today and fights again in two weeks when he faces his first six-round bout at Freeport Hall in Dorchester, was pleased with his showing.

“He was a strong kid, actually, but I caught him early with a couple of body shots,” Rodriguez said. “I went to the body early and finished it up to the head.

“I’m 5-0 with four knockouts, and it could have been five and five, but I can’t go back in time. I’ve just got to learn from past experiences.”

It was Rodriguez’s first fight using Reyes gloves, which are lighter and considered puncher’s gloves. He had used Everlast before that.

“It couldn’t have gone better,” said Rodriguez, who weighed 165 for the bout to Birthmark’s 167-1/2. “I’m really happy with my performance. It’s just another step toward me becoming a world champion.”

Army said Rodriguez’s opponent for his May 17 bout in Dorchester will be named on Tuesday. It will also be Rodriguez’s first six-round fight; his first five were scheduled four-rounders, although Rodriguez went into the fourth round only twice.

“Oh, he’s ready for the six rounds,” Army said.

“I’m telling you, he’s one helluva fighter,” Birthmark added. “He whipped my (butt). But I would like a rematch somewhere down the road.”

_________________________________________________________________________________
My commentary: you don't think he has power, yet he knocked you down 90 seconds into the fight with shots to the body, cut you above the eye, gave you a bloodly nose, and stopped you all in the first round? He's got power sweetie.


Next fight poster...come out and show your support!

5 comments:

Emily said...

Edwin reminds me a lot of Dakota in terms of his hypotonia although from what I've seen/you've said his hypotonia is more trunk related and Dakota's is more general.

We saw huge improvement once we got the reverse walker. She struggles a lot with her legs and didn't pull up until she was 19mos old. She had absolutely no desire to cruise/walk because it was just too hard for her and it wore her out.

The reverse walker totally changed that and within 3mos of her learning to really use the reverse walker she was starting to walk independently just before her 2nd birthday. It seemed to give her the support she needed to finally realize that walking was a good thing and it helped strengthen those muscles to allow the process to happen. Even now we still have the reverse walker and she uses it I'd say 25% of the time, especially when we're walking longer distances.

23wktwinsmommy said...

Yes, Emily. I think I would have linked Dakota and Edwin more if I had read your past entries. As of late Dakota has been doing amazing, and I just assumed she was not as comparable to Edwin, although she probably was when she was his age.
And now look at her!!! She gives me so much hope for Edwin, and with the reverse walker option he will be able to explore his world more in an upright position (where he wants to be.) I plan to show PT, Dakota's videos, and the other kiddos who have reverse walkers and demand we try it. If not, then I'm leaving the agency and going elsewhere. I have been waiting to hear back from the rehab center, (something I called about/arranged 2 weeks ago without PT's suggestion all on my own thank you very much.) Perhaps he can try the reverse walker there as well.
This gives me even more desire to start a local extreme preemie support group in my area. This PT works with 4 families I know. I had to search for a rehab center on my own and that idea came from reading from Adam and Andrew's mom...not from any local resources!
And Abby if you read in this comment section, it must be soo hard for you guys as well. You have been searching desperately for answers with regard to Hallie, and the thought that her eating is related to her food allergies must really upset you, just as I feel Edwin has missed out on motor opportunities and it has adversely effected him!
Thank goodness for all your support ladies...I couldn't be the parent I am without you!!!!

Emily said...

We had a really hard time with EI when we first came home. Dakota was 4mos adjusted and still had trouble holding her head up. Our EI didn't even offer PT as they didn't have any available and all they were able to give her was once a month OT services. The best thing I did for her was search on my own for a better therapist and take her out of EI in favor of private therapy.

Even though she started sitting up on her own around 13mos, when she had her evaluation for private PT at 17mos she couldn't get into or out of a sitting position on her own, maintain a sitting position for longer than a few minutes, roll properly and she wasn't mobile in any way. It was extremely discouraging for me to see the utter lack of progress we were making and to feel the drastic difference between Dakota's "sack of potatoes" type body compared to her micropreemie counterparts who supported their weight and had good tone.

With a good PT and therapy twice a week she finally learned to move (scooted on her butt using her arms to move her) at 17.5mos, get into a sitting position on her own and crawl on all fours at 18.5mos, get OUT of a sitting position and pull up at 19mos and at 20mos she was at the very beginning stages of cruising. It was unbelievable the difference a good PT who worked with micro preemies made for us!

We've yet to go the DAFO route but it's been a consideration for a long time and we actually see our orthopedist this coming Wednesday. More than anything Dakota's low tone has really impacted her spine and she has progressively worsening kyphosis (hump back) and scoliosis.

Sarah said...

I've been meaning to come by here and reply to what you left on my blog, and now I'm so sad for you. I so totally understand your frustration (obivously, hellow just read my blog lol!) As far as the bracing goes, though, our therapists wait as a last resort. Edwin is 3 months older than Emery so he might be getting to an age that he would need them. Emery's low tone is in his trunk and you really notice it around other children or when he stands (his belly sticks out) but he's cruising and sitting well so it's only mild. A walker isn't even an option for us.

I think you could get private therapy since the twins are on Medicaid. We don't qualify for private therapy until we have exhausted EI's resources (which blows) and is why I'm so frustrated about his obvious cognitive issues, especially when I see at what level other kids (like yours) are acting.

I get very upset when I hear about other people getting treatments that I can't seem to get. For instance, I want to start the Willbarger protocol on Emery but our OT is hesitant because of his age, yet half of the mom's over at PBM have kiddos who were getting it in the NICU and now at home.

You're right. I am so glad that we have the internet as a resource. It just makes me fight that much harder for E, but obviously we get tired. I have complete trust you will get answers and help for EJ, though. You've been advocating all of his life. This is just a bump. It's not like you haven't experienced a few speed bumps before.

Oh, and congrats to Edwin, Sr.! So exciting to watch how he's doing.

Lindsey: Mama of Andrew, Adam, and Ally said...

Edwin Jr is blessed to have such a proactive mommy that is being such a good advocate. Andrew has low trunk tone also and has made a lot of progress lately, thanks to the rehab center. Andrew does aquatics there once a week and this seems to of really awakened a lot of his muscles and he's finally stopped belly crawling/dragging for the most part. We are borrowing a reverse walker and he's making progress with it, though he prefers to push it because it goes slower that way and he can keep up better. We are also looking into dafo's.