{"id":225,"date":"2020-08-14T19:26:54","date_gmt":"2020-08-14T19:26:54","guid":{"rendered":"http:\/\/usc2020.nextgenradio.org\/?p=225"},"modified":"2020-08-14T21:27:06","modified_gmt":"2020-08-14T21:27:06","slug":"a-young-mother-copes-with-the-challenges-of-caring-for-a-special-needs-child-during-a-pandemic","status":"publish","type":"post","link":"https:\/\/usc2020.nextgenradio.org\/a-young-mother-copes-with-the-challenges-of-caring-for-a-special-needs-child-during-a-pandemic\/","title":{"rendered":"A young mother copes with the challenges of caring for a special-needs child during a pandemic"},"content":{"rendered":"\n<figure class=\"wp-block-audio alignleft\"><audio controls src=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_mixdown_done.mp3\"><\/audio><figcaption>Two-year-old Gabriel Posadas has a rare genetic disorder &#8211; Larsen Syndrome.&nbsp;For his single mother, Covid-19 has created extraordinary challenges: the shortage of medical supplies and practicing social distancing. Yet through it all she stands ready to address the future challenges that will keep her son happy and healthy.<br><\/figcaption><\/figure>\n\n\n\n<p class=\"has-drop-cap\">Gabriel Posadas loves making shadow figures with his moon night light.&nbsp;<\/p>\n\n\n\n<p>\u201cHe wants us to close the curtain, so we have to close the curtains and close the door,\u201d Sabrina Renteria, the 2-year-old\u2019s mother, said with a laugh.&nbsp;<\/p>\n\n\n\n<p>The 24-year-old said her son is a happy toddler with a \u201cstrong personality,\u201d who loves watching the movie &#8220;Despicable Me&#8221; as many as three times a day.&nbsp;<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" src=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01-1024x1024.jpg\" alt=\"\" class=\"wp-image-173\" srcset=\"https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01-1024x1024.jpg 1024w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01-300x300.jpg 300w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01-150x150.jpg 150w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01-768x768.jpg 768w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01-1200x1200.jpg 1200w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_01.jpg 1500w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><figcaption>Sabrina Renteria holds her son, Gabriel Posadas, outside of their home. Posadas has a rare genetic disorder called Larsen syndrome that requires him to be on a ventilator. (Photo courtesy of Sabrina Renteria)<\/figcaption><\/figure><\/div>\n\n\n\n<div class=\"wp-block-group has-accent-background-color has-background alignright infobox\"><div class=\"wp-block-group__inner-container is-layout-flow wp-block-group-is-layout-flow\">\n<h4 class=\"wp-block-heading\">What is Larsen Syndrome?<\/h4>\n\n\n\n<p>Larsen Syndrome affects the development of bones throughout the body. Babies like Gabriel Posadas are usually born with dislocations of the hips, knees, or elbows. The condition also caused Posadas\u2019 lungs to develop smaller than the lungs of a normal full-term baby. <\/p>\n<\/div><\/div>\n\n\n\n<p>But the young mother has worried about her son since the day he was born.&nbsp;<\/p>\n\n\n\n<p>Posadas has a rare musculoskeletal genetic disorder called <a href=\"https:\/\/rarediseases.info.nih.gov\/diseases\/6860\/larsen-syndrome\" target=\"_blank\" rel=\"noreferrer noopener\">Larsen syndrome<\/a>, which affects only about 1 in 100,000 babies per year. &nbsp;<\/p>\n\n\n\n<p>\u201cHe got all the symptoms associated with it,\u201d Renteria said of her son\u2019s condition, though she said it took doctors six weeks to diagnose him. Sadly, Posadas\u2019 case was severe.\u00a0<\/p>\n\n\n\n<p>Now, Renteria and her son are facing another crisis: COVID-19.&nbsp;<\/p>\n\n\n\n<p>Posadas hasn\u2019t caught the virus yet, but he\u2019s at-risk. Due to his genetic disorder, Posadas is unable to bend, crawl, roll around, and walk.&nbsp;<\/p>\n\n\n\n<p>\u201cWhen he was born, his knees were backwards and that\u2019s what affected him the most,\u201d Renteria said of her son\u2019s condition.&nbsp; He\u2019s also hard of hearing, and is learning sign language.<\/p>\n\n\n\n<p>In order to help with Posadas\u2019 breathing and eating, he is on a ventilator 24\/7 and he eats through a gastrostomy tube (also called a G-tube.)&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-video alignwide\"><video controls poster=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_Video_Cover.jpg\" src=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae02.mp4\"><\/video><figcaption>Gabriel Posadas\u2019 nurse, Lisa Duran, feeds him frequently throughout the day. Posadas requires 24-hour home care and has a team of nurses. (Video courtesy of Sabrina Renteria)<\/figcaption><\/figure>\n\n\n\n<p>Lisa Duran, one of Posadas\u2019 two home nurses, has been looking after him for a year. She describes Posadas as a \u201cstrong little guy.\u201d But when COVID-19 started to spread, her employer instituted strict precautions to keep the toddler safe during a global pandemic.&nbsp;<\/p>\n\n\n\n<p>\u201cIf I go to Costco, they do my temperature. [They] ask questions like, have I had a cough? Have I had any chills any [lack of] sense of smell?\u201d Duran said.&nbsp;<\/p>\n\n\n\n<p>Renteria said when COVID-19 started to spread, she considered having the nurses not work.<\/p>\n\n\n\n<div class=\"wp-block-columns alignwide is-layout-flex wp-container-core-columns-is-layout-1 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-pullquote\"><blockquote><p>I had to make a big decision. But in reality, I just really needed that help. There was no way I would be able to stay up, and be awake 24 hours all the time.<\/p><p>That\u2019s really how it is &#8211; even in the nighttime, you have to keep eyes on him.<\/p><cite>Sabrina Renteria<\/cite><\/blockquote><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" src=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_03-768x1024.jpg\" alt=\"\" class=\"wp-image-176\" srcset=\"https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_03-768x1024.jpg 768w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_03-225x300.jpg 225w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_03.jpg 1125w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><figcaption>Gabriel Posadas enjoying the holiday season with his nurse, Lisa Duran. (Photo courtesy of Sabrina Renteria)<\/figcaption><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>The family is also struggling to get critical medical supplies as COVID-19 eats up resources.<\/p>\n\n\n\n<p>Gabriel&#8217;s medical supply company <a href=\"https:\/\/supercarehealth.com\/\" target=\"_blank\" rel=\"noreferrer noopener\">SuperCare Health<\/a> is facing a shortage of respiratory equipment, including ventilator circuits &#8211; the plastic tubes that connect to Posadas\u2019s at-home ventilator and help him breathe.&nbsp;<\/p>\n\n\n\n<p>In March, Renteria said she received a letter from SuperCare Health that stated they were running out of ventilator circuits. The family went from receiving four ventilator circuits to just one. Usually, Renteria replaces the ventilator circuits once a week. But now, she will have to replace them once a month.&nbsp;<\/p>\n\n\n\n<p>That\u2019s a problem because Renteria said the circuits have to be clean, since they\u2019re pushing air inside Gabriel&#8217;s lungs. She\u2019s worried they\u2019ll get too dirty if they\u2019re not replaced quickly enough.&nbsp;<\/p>\n\n\n\n<div class=\"wp-block-image medium\"><figure class=\"aligncenter size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" src=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae05-1024x768.jpg\" alt=\"\" class=\"wp-image-219\" srcset=\"https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae05-1024x768.jpg 1024w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae05-300x225.jpg 300w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae05-768x576.jpg 768w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae05-1200x900.jpg 1200w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae05.jpg 1500w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><figcaption>Sabrina says due to the pandemic, Gabriel&#8217;s regular supply of ventilator circuits has decreased. (Photo courtesy of Sabrina Renteria)<\/figcaption><\/figure><\/div>\n\n\n\n<p>In an April <a href=\"https:\/\/supercarehealth.com\/2020\/04\/03\/medical-supplies-under-increasing-backorder\/\">statement<\/a>, SuperCare Health blamed interruptions in manufacturing due to COVID-19 for the product delays.&nbsp;<\/p>\n\n\n\n<p>Renteria said she doesn\u2019t know when they\u2019ll be going back to normal shipments. She\u2019s been forced to use hospital tape to keep some of his ventilator circuits together when they break.&nbsp;<\/p>\n\n\n\n<p>\u201cWe literally have to wrap it around where the tears are,\u201d she said.&nbsp;<\/p>\n\n\n\n<p>Posadas\u2019s ventilator humidification filters are also backordered. Renteria said they normally get 30 of them a month, so they can replace them once a day. But she\u2019s been reusing old ones for the past three weeks. That\u2019s not ideal, because it increases the likelihood that contaminants can build up.&nbsp;<\/p>\n\n\n\n<p>\u201cThey\u2019re trying to find replacements for him, but those are also out,\u201d Renteria said.<\/p>\n\n\n\n<p>However, Renteria said some things have improved since COVID-19. She\u2019s able to do Posadas\u2019 online therapy sessions now via FaceTime.&nbsp;<\/p>\n\n\n\n<p>\u201cThe less people that are around Gabriel, the better,\u201d she said.<\/p>\n\n\n\n<p>But she said going to doctor&#8217;s appointments in person are still necessary. That\u2019s a challenge when the hospital only allows one person to come with a patient.<\/p>\n\n\n\n<p>\u201cIt\u2019s very overwhelming,\u201d she said. \u201cIt\u2019s just a lot of bags and it&#8217;s a lot of stuff that I have to carry.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" src=\"http:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_04-768x1024.jpg\" alt=\"\" class=\"wp-image-177\" srcset=\"https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_04-768x1024.jpg 768w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_04-225x300.jpg 225w, https:\/\/usc2020.nextgenradio.org\/wp-content\/uploads\/sites\/37\/2020\/08\/Denae_04.jpg 1125w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><figcaption>Gabriel Posadas enjoys being outside. He uses a special ventilator humidifier outdoors that his mother says is now back-ordered due to COVID-19. (Photo courtesy of Sabrina Renteria)<\/figcaption><\/figure>\n\n\n\n<p>Despite everything, Renteria and her son remain healthy and happy.&nbsp;<\/p>\n\n\n\n<p>\u201cEven with all everything that&#8217;s going on, I think there&#8217;s still a lot of good moments with Gabriel,\u201d she said. \u201cI mean, [it] doesn&#8217;t seem to bother him that we&#8217;re not going out, I can&#8217;t take him out to the park, or anything like that.\u201d<\/p>\n\n\n\n<p>Renteria said she and her 2-year-old are getting used to the changes.&nbsp;<\/p>\n\n\n\n<p>\u201cBeing with Gabriel, I feel like he\u2019s my stress relief. So as long as he\u2019s OK, I think I can suffer a couple months.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>COVID-19 has caused supply shortages and added extra stresses for a toddler whose rare genetic disorder requires round-the-clock care. &#8220;Even in the nighttime, you have to keep eyes on him.&#8221;<\/p>\n","protected":false},"author":383,"featured_media":262,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"coauthors":[6],"_links":{"self":[{"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/posts\/225"}],"collection":[{"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/users\/383"}],"replies":[{"embeddable":true,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/comments?post=225"}],"version-history":[{"count":0,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/posts\/225\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/media\/262"}],"wp:attachment":[{"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/media?parent=225"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/categories?post=225"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/tags?post=225"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/usc2020.nextgenradio.org\/wp-json\/wp\/v2\/coauthors?post=225"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}