ب الافضل

Translate

الأحد، 22 أبريل 2018

ankees call up Gleyber Torres | Scout tells us what he's seen, what to expect

اقرأ المزيد

الجمعة، 6 أبريل 2018

Simone’s daughter was born with “the worst disease you’ve never heard of”


Warning: Graphic images.
I was introduced to the world of EB in 2000 when my daughter Eliza was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
My husband and I started the journey of being first time parents in a state of sadness, desperation, frustration and a sense of being constantly overwhelmed.  In the years to come we welcomed our second child into the family, and along with the support of DEBRA Australia, family and friends, and support services we have lead a very fulfilling but restricted life which tragically came crashing down around us two weeks before Christmas last year, on December 12, 2017.
EB takes the utmost love, dedication and determination (and a sense of humour doesn’t go astray) just to name a few attributes to deal with new challenges that EB presents on a daily basis.
Everyone meets challenges in life – some things we have little or no control over – but it is how you deal with the challenges that counts.  When living with EB, it’s important to make each day count!
Imagine being given a gift… A gift of life, you are so excited to become a first time mother and all you can wish for is that your child arrives safely and as that time gets closer you can’t wait to hold them.
Who would have thought a mother’s touch would cause their baby pain? This was the reality I was hit with when our beautiful baby Eliza arrived on January 28, 2000. As soon as I held her in my arms it was very apparent that there was something wrong. She was born with large raw areas extending over her feet, right leg & knee, her hands and her mouth. She was born at a local private hospital and was immediately transferred to the Royal Children’s Hospital and after a terrifying and long 2 weeks, she was diagnosed RDEB. I still remember the empty feeling that took over my whole body.
Eliza was going to be affected from a debilitating medical condition that became worse with life. It was one of the more severe types of EB and referred to as ‘the worst disease you’ve never heard
Doctors advised Eliza would be in constant pain, she required morning & evening dressing changes including salt & bleach baths which took approximately three hours, three times a week. Her fingers and toes would web and form strictures, the skin in her throat would become so tight from scar tissue that she wouldn’t be able to eat normal food, or at desperate times even be able to swallow her own saliva. Eliza would suffer from corneal abrasions which means her eyes would be closed for 3-5 days at a time, in a darkened room due to a tear on her cornea. Her mobility would be affected, she would require bandages and dressings all over her body every day of her life and she wouldn’t be able to wear normal clothes or undergarments because even the seams on the inside of the clothes would blister her skin. It was going to change our lives forever and it did.
Eliza screamed for her first 6 months, she failed to thrive due to blisters in her mouth and throat, she required various medications, up to 24 each day, and she required help throughout the night. She totally turned our lives upside down.
Severe EB requires many hospitalisations for various related complications. Eliza had over 100 general anesthetics and day admissions, and 60 admissions requiring lengthy stays.
One of many reflections of living with severe EB was on Eliza’s 15th Birthday, when she woke with a corneal abrasion. She was crying in pain, eyes were swollen & tearing, she couldn’t open them.
After she had some pain relief she settled down & sat in bed feeling her wrapped birthday presents, trying to guess what they were?
I watched & thought to myself how could life be so cruel? EB had taken away her independence, her mobility, she couldn’t eat or enjoy her birthday cake & if that’s wasn’t bad enough, it also took away the joy of opening her presents.
EB is ruthless, unforgiving, it has no boundaries and it’s sad to see how it robs individuals, especially children of a fair go in life.
It was times like this that we were so thankful for our family & friends but especially thankful for the support DEBRA Australia offered. To have the support of an organisation who are with you 100% of the way, and pick up the pieces for families who fall through the cracks of the health system is an enormous comfort in itself. DEBRA is a small community that connects you to likeminded families who are going through the same journey.
Eliza was not your average adolescent in more ways than one. She was truly in a league of her own. The depth of her pain and suffering was surpassed only by her polite and gentle charm, attention to data and detail, thorough knowledge of her own medical history, humility, a cheeky smile and sharp wit, and her sheer grit and determination in everything she set her mind to. Eliza didn't see her EB as a burden - it was part of her, but did not define her.
On 17th August 2017, Eliza became unwell and was admitted to the Royal Children’s hospital with what was first diagnosed as a chest infection. Soon after it became obvious that Eliza had kidney impairment and over the next four months she spent majority of her life in hospital for renal treatment which consisted of being hooked up for many infusions lasting up to 10 hours each day. Eliza continued to deteriorate and sadly passed away on 12th December 2017, just 6 weeks short of her 18th birthday. We lay with her as she took her final breath and wished she didn’t have to suffer from this hideous disease.

Warning: Graphic images.
I was introduced to the world of EB in 2000 when my daughter Eliza was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
My husband and I started the journey of being first time parents in a state of sadness, desperation, frustration and a sense of being constantly overwhelmed.  In the years to come we welcomed our second child into the family, and along with the support of DEBRA Australia, family and friends, and support services we have lead a very fulfilling but restricted life which tragically came crashing down around us two weeks before Christmas last year, on December 12, 2017.
EB takes the utmost love, dedication and determination (and a sense of humour doesn’t go astray) just to name a few attributes to deal with new challenges that EB presents on a daily basis.
Everyone meets challenges in life – some things we have little or no control over – but it is how you deal with the challenges that counts.  When living with EB, it’s important to make each day count!
Imagine being given a gift… A gift of life, you are so excited to become a first time mother and all you can wish for is that your child arrives safely and as that time gets closer you can’t wait to hold them.
Who would have thought a mother’s touch would cause their baby pain? This was the reality I was hit with when our beautiful baby Eliza arrived on January 28, 2000. As soon as I held her in my arms it was very apparent that there was something wrong. She was born with large raw areas extending over her feet, right leg & knee, her hands and her mouth. She was born at a local private hospital and was immediately transferred to the Royal Children’s Hospital and after a terrifying and long 2 weeks, she was diagnosed RDEB. I still remember the empty feeling that took over my whole body.
Eliza was going to be affected from a debilitating medical condition that became worse with life. It was one of the more severe types of EB and referred to as ‘the worst disease you’ve never heard of’.
Epidermolysis Bullosa personal story
Image supplied.
Doctors advised Eliza would be in constant pain, she required morning & evening dressing changes including salt & bleach baths which took approximately three hours, three times a week. Her fingers and toes would web and form strictures, the skin in her throat would become so tight from scar tissue that she wouldn’t be able to eat normal food, or at desperate times even be able to swallow her own saliva. Eliza would suffer from corneal abrasions which means her eyes would be closed for 3-5 days at a time, in a darkened room due to a tear on her cornea. Her mobility would be affected, she would require bandages and dressings all over her body every day of her life and she wouldn’t be able to wear normal clothes or undergarments because even the seams on the inside of the clothes would blister her skin. It was going to change our lives forever and it did.
Eliza screamed for her first 6 months, she failed to thrive due to blisters in her mouth and throat, she required various medications, up to 24 each day, and she required help throughout the night. She totally turned our lives upside down.
Severe EB requires many hospitalisations for various related complications. Eliza had over 100 general anesthetics and day admissions, and 60 admissions requiring lengthy stays.
One of many reflections of living with severe EB was on Eliza’s 15th Birthday, when she woke with a corneal abrasion. She was crying in pain, eyes were swollen & tearing, she couldn’t open them.
After she had some pain relief she settled down & sat in bed feeling her wrapped birthday presents, trying to guess what they were?
I watched & thought to myself how could life be so cruel? EB had taken away her independence, her mobility, she couldn’t eat or enjoy her birthday cake & if that’s wasn’t bad enough, it also took away the joy of opening her presents.
EB is ruthless, unforgiving, it has no boundaries and it’s sad to see how it robs individuals, especially children of a fair go in life.
Epidermolysis Bullosa personal story
Images supplied.
It was times like this that we were so thankful for our family & friends but especially thankful for the support DEBRA Australia offered. To have the support of an organisation who are with you 100% of the way, and pick up the pieces for families who fall through the cracks of the health system is an enormous comfort in itself. DEBRA is a small community that connects you to likeminded families who are going through the same journey.
Eliza was not your average adolescent in more ways than one. She was truly in a league of her own. The depth of her pain and suffering was surpassed only by her polite and gentle charm, attention to data and detail, thorough knowledge of her own medical history, humility, a cheeky smile and sharp wit, and her sheer grit and determination in everything she set her mind to. Eliza didn't see her EB as a burden - it was part of her, but did not define her.
On 17th August 2017, Eliza became unwell and was admitted to the Royal Children’s hospital with what was first diagnosed as a chest infection. Soon after it became obvious that Eliza had kidney impairment and over the next four months she spent majority of her life in hospital for renal treatment which consisted of being hooked up for many infusions lasting up to 10 hours each day. Eliza continued to deteriorate and sadly passed away on 12th December 2017, just 6 weeks short of her 18th birthday. We lay with her as she took her final breath and wished she didn’t have to suffer from this hideous disease.
MORE FROM HEALTH
As the Family Support Coordinator for DEBRA Australia, the battle with EB continues for many families across Australia. Especially for three new families, all from different states - three new babies, all equally as severe as Eliza and one copped a double blow, with also being diagnosed with not one but two serious illnesses.
These families are faced with the hourly torment of high medical needs. For one family there’s constant suctioning to clear mucus and saliva secretions, constant persistence of feeding, because their baby’s throat is severely damaged by torn lining and ripped skin. The sleep deprivation of attending to their crying child every 2-3 hours during the night, and to administer more pain relief, is exhausting.
Although Eliza has been the face of many DEBRA Australia campaigns, for me personally nothing changes. I continue to work on the front line with these families, with DEBRA Australia, and with help from the community we will continue to support them through their living hell.
With generous donations, we are able to place nursing support within their home, for daily dressings and wound care that lasts up to 3 hours.
We are able to link them in with our newly set up psychology program in Melbourne and Sydney, along with all the other support pathways we already have in place.
Our programs are expanding, and we will continue to provide support for EB families who at times feel as though all hope is lost.
I personally see the relief donations provide, and I can’t begin to tell you just how much of a difference they make.
It gives families hope, in a sometimes and all too often hopeless situation.  It lightens the load at times that seem almost impossible.
It’s vitally important to keep all our programs running for EB children, adults and their families and I hope the broader community get on board to support our PB4EB campaign which I personally will be a part of in tribute to my beautiful Eliza who lost her battle with EB.
Here’s how you can help: www.debra.org.au/how-to-help/
LISTEN: Don’t kiss the baby, and other things that people should know (post continues)...
MORE FROM HEALTH
اقرأ المزيد

When Does 'The Boss Baby: Back in Business' Season 2 Premiere? This New Series Is Perfect For Parents & Kids

Fans of the Oscar-nominated film, The Boss Baby, couldn't be more excited for the new Dreamworks' TV series, The Boss Baby: Back in Business. But since the series is on Netflix, the entire first season is available for streaming starting on Friday, April 6, which means you'll probably get through it pretty quickly. So many of you may be wondering: when does The Boss Baby: Back in Business Season 2 premiere?
Unfortunately, the series hasn't been renewed for a second season yet, but that doesn't mean it won't be in the near future. If the series is as popular as the film, it'll surely bringing in high numbers for the streaming platform. Netflix has a longterm relationship with Dreamworks, the production company behind The Boss Baby, so it wouldn't be surprising to see the series continue, especially because a sequel to the film is already slated for spring 2021.
It's clear The Boss Baby is popular and definitely has franchise potential, like other big film franchises of Dreamworks, such as How to Train Your Dragon, which has spawned the TV series, Dragons: Race to the Edge, which is now on its sixth season, as well as another series and a short film. Thus, if The Boss Baby: Back in Business is a big hit, as many expect it to be, this could just be the beginning of a lot more Boss Baby productions.
For now though there's just The Boss Baby and The Boss Baby: Back in Business. If you haven't seen the movie yet, it's currently streaming on Netflix. Then you can jump right into the TV series which picks up right where the movie left off. Boss Baby, along with his older brother and partner-in-crime, Tim, will continue to navigate the "cutthroat corporate jungle gym of Baby Corp," according to Variety. Boss Baby will also be trying to balance his work-life with his home life as well. The new series is executive produced by Emmy-winner Brandon Sawyer.
Although the show follows the same characters, the actors in the TV series will be different from those in the film. In the movie, Alec Baldwin provided the voice for Boss Baby, Jimmy Kimmel was Dad, Tobey Maguire was the narrator and Adult Tim, and Miles Bakshi was the kid version of Tim. In the show, renowned voice actor JP Karliak takes over as Boss Baby, David W. Collins plays the dad, and Twin Peaks star Pierce Gagnon plays Tim. Eric Bell Jr., who provided the voice for the triplets, will reprise his role in the TV series. It's unclear if there will also be a narrator for this particular iteration.
Netflix on YouTube
Still, despite these cast changes, the show seems to be no different than the film in terms of its hilarity and heartwarming familial moments and scenes of friendship. Plus, it's doubtful your kids will even notice the difference in the characters' voices. That being said it does look like the original cast will return for the film, so if you prefer to only hear the Boss Baby voiced by Baldwin, then you can expect him to return to the role in 2021.
Until then, definitely make sure to give The Boss Baby: Back in Business a try. It'll be a fun series to watch with your kids, and the Boss Baby's struggle to balance his work and home life is way too relatable. Honestly, The Boss Baby: Back in Businesswill most likely be just as good, if not better, than the movie that proceeded it. You can start streaming The Boss Baby: Back in Business on Netflix beginning on Friday, April 6.
Check out Romper's new video series, Romper's Doula Diaries:
اقرأ المزيد

Stripes New Limited-Edition Selena Commemorative Cups Go On Sale Saturday

Stripes convenience stores is releasing two new limited-edition Selena commemorative collectible cups that will be sold across Stripes stores in Texas and Louisiana on Saturday, April 7, 2018, starting at 9 a.m. 
Customers and Selena fans may begin to line up at Stripes for their chance to purchase a cup at 8 a.m. on Saturday prior to the release time. The cups, priced at $2.99 and will be available while supplies last. A portion of the sales will benefit the Selena Foundation.
Company officials worked with Selena’s sister, Suzette Quintanilla, to create the cups designs.
“I am excited to work with Stripes again on these beautiful commemorative cups of my sister featuring Selena’s image. One of the designs this year is a watercolor painting created by New York artist Santi Siguenza, and it’s also our official logo for the 2018 Fiesta de La Flor event,” said Quintanilla, CEO of Q-Productions.
Stripes is encouraging its customer to visit the Stripes Facebook page for updates and information on the sale of the cups. 
How to buy the Selena commemorative collectible cups:
When: Saturday, April 7, 2018.
Time: 9 a.m. customers may begin to line up at Stripes for their chance to purchase a cup at 8 a.m.
Price: $2.99 each. There is a limit of four cups per customer.
Where: Stripes. To find the nearest Stripes stores around Houston click HERE.
اقرأ المزيد

Brooke Burke and David Charvet Divorcing After Nearly 7 Years of Marriage

NATALIE STONE and MELODY CHIU 
April 06, 2018 03:18 PM
After nearly seven years of marriage, Brooke Burke and David Charvetare divorcing, PEOPLE confirms.
Burke, 46, filed for divorce from Charvet, 45, on Friday in Los Angeles County citing irreconcilable differences in court documents obtained by PEOPLE. The two separated in January.
The actress is seeking joint legal and physical custody of their two children: son Shaya, 10, and daughter Rain, 11. Burke is also mom to daughters Sierra, 16, and Neriah, 18, from her previous marriage to Garth Fisher.
“They’ve been separated for a couple of months and tried as hard as they could to make their marriage work, but at the end of the day they have to do what’s right for them and their family,” a source tells PEOPLE.
Chad Hurst/Getty
The former Dancing with the Stars host and Melrose Place alum “met in Mexico, and it was the perfect example of right guy, wrong time because we had this beautiful affair, came back to L.A. and just stayed friends,” Burke told Health for its April 2014 cover story.
“If we had gotten together then, we wouldn’t have made it,” she said of meeting two decades ago. “We had to grow up and then we found each other much later in life, and it was the right time.”
Following a five-year engagement, the couple tied the knot in a secret St. Barts wedding in August 2011. “It is not often that you get to plan a very special occasion, and have it play out just as you imagined in your mind,” Burke wrote in a blog post for her parenting website, Modern Mom. “Even the weather was perfect.”
Describing the wedding as a “secret mission,” she added, “We told no one – no friends, not even our mothers. We broke the news to our children just days before our departure.”
Burke and Charvet were married on a sailboat anchored off of a private beach, while music they had handpicked played in the background. “I felt incredibly peaceful, certain, and blissfully happy,” she wrote. “In my soul, I was already married. Making the spiritual commitment to exchange vows in our favorite place, in front of our four children, with my soulmate seemed like a real life fairytale.”
Of keeping their connection alive, Burke told Health in 2014, “We believe in romance. We hold hands. We cook together. We still make out.”
“We’re very fiery passionate people, so when we fight, it’s like the 4th of July!” she added.
TMZ first reported the news.
اقرأ المزيد

Scandal-hit Republican congressman Farenthold steps down

AUSTIN, Texas (Reuters) - Republican U.S. Representative Blake Farenthold of Texas, accused by a female former aide of sexual harassment, abruptly resigned from Congress on Friday after admitting to allowing an unprofessional culture to flourish in his Capitol Hill office.
FILE PHOTO: Rep. Blake Farenthold arrives at the House Judiciary Committee hearing on oversight of the Justice Department on Capitol Hill in Washington, DC, U.S., December 13, 2017. REUTERS/Joshua Roberts/File Photo
“While I planned on serving out the remainder of my term in Congress, I know in my heart it’s time for me to move along and look for new ways to serve,” the 56-year-old congressman who represented Corpus Christi in the U.S. House of Representatives said in a social media video statement.
While Farenthold has denied the sexual harassment accusation, the former conservative radio show host said in December he would not seek re-election. He made that announcement a week after the House ethics committee said it was investigating him over allegations of sexual harassment, discrimination and retaliation involving a female former staff member.
“I had no idea how to run a congressional office, and as a result, I allowed a workplace culture to take root in my office that was too permissive and decidedly unprofessional,” Farenthold said in December.


The ethics committee said it was also looking into whether Farenthold had made inappropriate statements to other members of his staff.
His resignation took effect on Friday afternoon. Farenthold, who began serving in Congress in 2011, is the latest of several U.S. lawmakers who have stepped down or not sought re-election after being accused of sexual harassment.
Politico reported in December that the congressional Office of Compliance had paid $84,000 from a public fund on behalf of Farenthold for a sexual harassment claim.
In 2014, his former communications director, Lauren Greene, filed a lawsuit accusing him of creating a hostile work environment, gender discrimination and retaliation, court documents showed. The two reached a confidential mediated agreement in 2015, according to a statement from Farenthold’s office that denied any wrongdoing by him.
Reuters has been unable to verify the allegations against Farenthold.
Reporting by Jon Herskovitz; Editing by Daniel Wallis and Will Dunham

اقرأ المزيد