“This is the first time he’s been outside that building since July the first.”. Hartley wouldn't have it. REALLY?!?!? Hartley and her husband decided to have another baby four years later, working with geneticists to see their odds of having another child with microcephaly. Happily, Hartley has seen some strides in the girls. She shares her dreams, like a recent one she had where Lola could walk. They told me the warning PS -- The brilliant combo of OT + hours of primping = CHECKMATE, yo. When Claire was born almost 17 years ago, she struggled with her "I love the way our family has changed as a result of having our girls, and from having Cal," she said. When Claire Elise Hartley was born in 2001, doctors told her parents that the baby had only one year to live. She fought with everything in her to stay. Do they make these in my size?! This helps make sure that compression due to delivery through the birth canal has resolved. With fears over the Zika virus causing countries like Colombia and Brazil to advise women to delay pregnancy until they get the virus under control, all of the sudden the Hartleys find themselves the object of people's growing curiosity — and mounting fears — about microcephaly, which causes babies to be born with tiny brains. We bow to you & are so proud of you for being a voice for not only Claire but also for others who are unable to speak and be heard. cannot learn how to coordinate this any longer. How was I supposed to help a 2-and-a-half-year-old understand that?" The DJ was slaying, the videographer was capturing everyone dancing & projecting it onto a huge screen, and the rest of us were gettin' down with our bad selves! and superheroes and badass odds-defiers, every last one of them. on April 28, 2006 after a fairly normal pregnancy and an oh-so-speedy (natural!) Sometimes medications also are needed to treat seizures or other symptoms. There's Gwen and Scott and their kids, Cal, 17, Claire, 14, and Lola, 10, and two Whippets, Romeo and Cash. I watched her like a hawk during feedings. She regularly posts pictures and updates of her three children, careful not to sugar-coat any of the emotions. To this day, I feel like much of our days are spent feeding and preparing fresh blended foods for the girls. But Hartley says her husband—who works nearby as a glassblower—is her other half, and they work seamlessly together, along with a group of therapists and a babysitter, to care for the girls. At 26 weeks along, however, microcephaly was confirmed for Lola, too. We are going to be different people now.". I wanted them to reach their They are fucking warriors "He would wake up and say, 'Mom, is Jesus coming for Claire today? The type of cerebral palsy they have causes a tightness in all their muscles, including the lining of their digestive tracts and their eyes, which often don't track straight. Mosquito expert: Washington downplaying Zika virus threat to US, WHO moves into high gear to combat Zika, microcephaly, expert says, Brazil says Zika-linked microcephaly cases rise to 4,074. CDC recommends that health care providers use the WHO growth charts to monitor growth for infants and children ages 0 to 2 years of age in the U.S. Often, healthcare providers should take the head circumference measurement when the newborn baby is at least 24 hours old. I'm lucky AF, you guys. Waiting in line to be announced for the red carpet! No one You gu... *NOTE:  PLEASE SHARE THIS BLOG POST!!!!! It was hard for the parents to hear but manageable. Tim Tebow Foundation's Night to Shine prom. I would then sit her up, burp her, and watch Some babies have microcephaly because of changes in their genes. "Within our family of five, it’s strengthened us to a point where together, we can accomplish anything. Until recently, Gwen's been quietly blogging about her Claire and Lola's special needs. Gwen and Scott have surrounded themselves with doctors and therapists who support the girls on their journey, and who are willing to think outside of the box for two girls who don’t fit the typical patient mold. No frequently and ill often. These babies will need routine check-ups to monitor their growth and development. Dazu gehört der Widerspruch gegen die Verarbeitung Ihrer Daten durch Partner für deren berechtigte Interessen. see how much she lost, and it was usually 3/4+ of the total amount I fed her. "When she was born I said, 'Gosh you forget how tiny their little heads are,'" Gwen told FoxNews.com. © 1998 - 2020 Nexstar Inc. | All Rights Reserved. She was even tinier than her Gwen described feeling powerless at the time, and having not only to process the diagnosis as parents, but also try to explain it to a toddler anxiously waiting for his sibling at home. urged me to schedule a g-tube placement for her ASAP. For more severe microcephaly, babies will need care and treatment focused on managing their other health problems (mentioned above). Damit Verizon Media und unsere Partner Ihre personenbezogenen Daten verarbeiten können, wählen Sie bitte 'Ich stimme zu.' "They show me what’s important. Lola can touch things with her nose to make choices, and Claire's even begun attempting to crawl. I remember being terrified once she turned 1 that I would soon see the decline ©2020 FOX News Network, LLC.

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