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Goodnight, Soon?

Posted by on 10:55 am in Uncategorized | 0 comments

Navigating bedtime and establishing healthy sleep habits for your children can be tricky. But if your child is not getting enough sleep, there can be negative outcomes. According to a report done by the Centers for Disease Control and Prevention (CDC), children and adolescents who do not get the recommended amount of sleep for their age are at increased risk for chronic conditions such as diabetes, obesity, and poor mental health, as well as injuries, attention and behavioral problems, and poor academic performance. Bedtime basics are key to ensuring your child gets the right amount and best sleep for their overall health. How much sleep does my child need? As children grow, their sleep patterns and sleep needs will probably change. Each child will have individual factors that determine the average time they sleep. By observing your child’s sleep patterns, you can better ensure they are getting the good quality sleep they need. Here are a few guidelines to consider*: Age Recommended sleep time 4 – 12 months 12 to 16 hours (including naps) 1-2 years 11 to 14 hours (including naps) 3-5 years 10 to 13 hours (including naps) 6-12 years 9 to 12 hours 13-18 years 8 to 10 hours *The American Academy of Pediatrics (AAP) has issued a State of Endorsement supporting these guidelines from the American Academy of Sleep Medicine (AASM). How do I know if my child is getting enough sleep? Healthy sleep is vital to your child’s growth and development. Without proper rest, children are more susceptible to physical, mental and emotional problems including: • Hyperactivity • Drowsiness during the day • Struggling in school • Night terrors/sleepwalking • Anxiety about being separated from you at night • Mood swings • Irritability and confusion As your child gets older, be aware that the signs and symptoms of lack of sleep may change. Talk to your child’s doctor if you suspect some of these changes may be linked to their lack of sleep. What can I do to help my child go to sleep and stay asleep? If your child is struggling with their sleep, some simple life adjustments can make a world of difference including: • Follow a consistent daily and bedtime routine. • Spend one-on-one time with your child before bed doing quiet activities to help calm and reassure them such as reading. • Monitor screen time throughout the day and limit/remove screens before bedtime. • Avoid giving foods and drinks with stimulants, such as caffeine or sugar, to your child. What are other reasons why my child can’t sleep? Sleep can be affected by emotional, mental or physical issues. Diagnosing and treating sleep problems in children can be a complex and long process. Conditions such as bedwetting, restless leg syndrome, night terrors and even sleep apnea can wreak havoc on your child’s sleep, so it is important to identify how to overcome them. If you find that your child is having trouble sleeping beyond practical solutions, discuss your child’s sleep problems and habits with their pediatrician. Most sleep problems are easily treated and can be improved with close monitoring. University Health System Children’s Health offers comprehensive pediatric services, from primary care to advanced specialized care. The Pediatric Sleep Lab provides a variety of services and treatment options to children suffering from...

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TIME Magazine Names Morgan’s Inspiration Island to World’s Greatest Places List

Posted by on 8:37 pm in Uncategorized | 0 comments

Aug. 23, 2018 SAN ANTONIO – Morgan’s Inspiration Island, the world’s first ultra-accessible™ splash park, has been named to TIME Magazine’s first annual World’s Greatest Places list that’s now online at www.time.com/greatestplaces and also scheduled to appear in print on newsstands Aug. 24. “We’re truly gratified to receive this international recognition from such a well-known publication as TIME,” said Ron Morander, general manager of Morgan’s Inspiration Island and unique Morgan’s Wonderland theme park.  “It’s wonderful that TIME understands our emphasis on inclusion, bringing together those with and without special needs in a safe, colorful, barrier-free environment to have fun and, in so doing, to gain a better understand of each other.” To create the list, TIME solicited nominations across a variety of categories – including museums, parks, restaurants and hotels – from TIME editors and correspondents around the world, as well as dozens of industry experts.  TIME evaluated each one based on key factors such as quality, originality, innovation, sustainability and influence.  The result is a list spanning six continents and 48 countries. Morgan’s Inspiration Island and its revolutionary waterproof wheelchairs also won the 2017 Leading Edge Award from the World Waterpark Association.  Earlier this year, Morgan’s Inspiration Island and Morgan’s Wonderland jointly received the Paralyzed Veterans of America Barrier-Free America Award.  And, for the seventh consecutive year, Morgan’s Wonderland has earned a Certificate of Excellence from TripAdvisor, the world’s largest travel website, for “earning exceptional traveler ratings.” Morander noted that both non-profit Morgan’s Inspiration Island and Morgan’s Wonderland were designed with special-needs individuals in mind and built for everyone’s enjoyment, and every person with a physical or cognitive special need is admitted free of charge. Morgan’s Wonderland, offering more than 25 wheelchair-accessible rides, playscapes and other attractions, will be open primarily on Fridays, Saturdays and Sundays through the end of the year.  Meanwhile, Morgan’s Inspiration Island will operate on weekends through Sept. 16, then reopen next spring when warm weather returns.  For the latest information on operating schedules, admissions and special events, visit www.MorgansWonderland.com. Tropically-themed Morgan’s Inspiration Island offers five major splash pads, the River Boat Adventure ride and support facilities such as the Wheelchair Valet, where guests can transfer out of their personal wheelchairs into waterproof wheelchairs for maximum aquatic fun. Morgan’s Wonderland and Morgan’s Inspiration Island are located at 5223 David Edwards Drive in Northeast San Antonio a half-mile west of IH 35 at the intersection of Wurzbach Parkway and Thousand Oaks. For More Information: Bob McCullough, APR, (210) 637-3418 or...

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Sharing in Decision-Making Exceptional Kids

Posted by on 6:00 pm in Uncategorized | 0 comments

Ruchi Kaushik, MD, MPH July 14, 2018   Have you gone to see your child’s doctor with one plan in your head and left with a completely different one–a care plan that was created without an opportunity for you to voice your ideas, concerns or goals?  Pediatricians believe they are scientists who are most knowledgeable in the care of a child (and, indeed, they are), and parents believe they are loving, nurturing caregivers who are most knowledgeable in the care of THEIR child (and, indeed, they are).  In my opinion, this is a win-win.  Working as a team, parents (and many older, more cognitively able children) and pediatricians can create an effective, realistic, and evidence-based care plan to benefit a child using a process known as shared decision-making.   According to the American Academy of Pediatrics (AAP) is a process in which: at least two parties are involved, information is exchanged in both directions, all parties are aware of treatment options and what they are, and all bring their knowledge and values-related priorities equally into the decision-making process.   The collaborated effort should fall somewhere between your pediatrician developing a plan on her own (“paternalism”) and your pediatrician giving in to your plan (“consumerism”).  Following are a few things you should look out for during your visit.   Time:  Decisions that involve caring for children with disabilities and complexity are challenging and should not be rushed.  You should feel that the discussion is being given the appropriate amount of time.   What is the issue and who is involved:  Someone (preferably your pediatrician) should point out the fact that you have come to a point where a decision needs to be made.  And all parties involved should feel they have the opportunity to share their views and concerns–parents/caregivers, adolescents who are capable, and your pediatrician and pediatric subspecialists;  however, this may ALSO include family members whose opinions the parents/caregivers value, private duty nurses and home health therapists who can contribute constructively to the converstion, and religious leaders.  Because of the long list of individuals, at times a care conference may need to be held to entertain all ideas in a single discussion.   Needs, Wants, and Goals:  Take advantage of open-ended questions such as, “Tell me more…” “What do you understand about…?”, and “Why would you prefer this option?”  These are not meant to question you, but, rather, for your pediatrician to understand what you value.  You may prefer to have therapists provide care in your home instead of in an outpatient setting because your work hours don’t allow the latter (needs); or you may prefer that most tube feeding calories are administered through the night so you can focus on (and enjoy) oral feeding during the day (wants); or you may want to find the sweet spot of seizure medication dosing so that your child isn’t seizing often and is also alert enough to participate in physical therapy aimed at weight-bearing and standing independently (goals).  Don’t hesitate to share these, because we truly need and want to know.   Options:  Once your needs, wants, and goals are heard, you should be given evidence-based options to move forward (occasionally, there may be only one realistic option).  The risks and benefits of each option should be shared with you, and...

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April 2nd – World Autism Day

Posted by on 4:54 pm in Uncategorized | 0 comments

The eleventh annual World Autism Awareness Day is April 2, 2018. Joined by the international community, hundreds of thousands of landmarks, buildings, homes and communities around the world, light blue in recognition of people living with autism. Autism-friendly events and educational activities take place all month to increase understanding and acceptance and foster worldwide support. A new government survey of parents suggests that 1 in 45 children, ages 3 through 17, have been diagnosed with autism spectrum disorder (ASD). This is notably higher than the official government estimate of 1 in 68 American children with autism, by the Centers for Disease Control and Prevention (CDC). However, the CDC has acknowledged that its estimate has significant limitations. It’s based on an analysis of the medical and school records of 8-year-old children at monitoring sites across the country. As such, it can miss children who are not receiving medical or special education services related to autism. “The 1 in 45 estimate is not surprising and is likely a more accurate representation of autism prevalence in the United States,” comments epidemiologist Michael Rosanoff, Autism Speaks director for public health research. “This means that 2 percent of children in the U.S. are living with autism. The earlier they have access to care, services and treatment, the more likely they are to progress.” There are many organizations and services who offer access to care, services and treatment, for those looking for services like The Autism Treatment Center  https://www.atcoftexas.org/, Bloom Behavioral & Education Solutions, https://www.bloom-aba.net/, Empower Behavioral Health http://www.empowerbh.com/, The Shape of Behavior,  http://www.shapeofbehavior.com/ and so many more organizations in our area. So wear your light blue and join many walks, organizations and events who will be celebrating Autism Awareness Month....

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MEET JOSHUA

Posted by on 7:13 pm in Uncategorized | 0 comments

MEET JOSHUA As far as we knew, Joshua was a healthy, active child up until he was 8 and a half, when he suddenly had a respiratory failure, ended up in the hospital and on a ventilator.  It took months for doctors to diagnose his extremely rare condition now known as ROHHAD which stands for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation.  He was the 23rd person in the world known with this condition.  It meant, for some unknown reason, his brain stopped getting messages telling him he needed to breathe or produce hormones, regulate his body temperature or hydration – all things most of us do without giving them a single thought.  There is no known cure. So, 3 days before he turned 9, Joshua got a tracheostomy, and he came home from the hospital a few weeks later with a home ventilator and other medical equipment and supplies. We didn’t know how to get Medicaid for him and had no money to pay for nursing so I got quite an education taking care of him and researching his disorder. Oh, and Joshua was also featured in a Discovery Channel Documentary when he was 10 years old. Joshua has since been approved for a Medicaid Waiver program, had nurses help take care of him.   He had surgery to implant a breathing pacemaker when he was 12.  He uses his pacers to breathe while he is awake – as long as he is not too sick.  He also got swine flu and double pneumonia when he was 13.  He came home after that using an IPV machine to help him clear secretions.  It has worked well for the last 8 years. He is now 21 years old, graduated high school and  even has a part-time job. I went back to school and became a Registered Respiratory Therapist and worked for a while at University Hospital in San Antonio before learning of Apple Homecare Medical Supply, where I now work and get to be my son’s RT.  I am so glad we have such a great DME company providing for Joshua’s needs.   Thank you Vanessa for sharing your Joshua’s story. Mom-Vanessa is a Registered Respiratory Therapist with Apple Homecare Medical Supply, Inc 866-332-7753 / www.applehms.com      ...

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“Meet the Team” at San Rafael HealthCare

Posted by on 7:39 pm in Parenting | 0 comments

 Meet the Team   San Rafael Healthcare is a pediatric home health agency that is focused on special needs children. We understand it’s important for you to know who is working with you to provide the best care to your children. You invite us into your home; let us now invite you into ours! Here is a sneak peak at the team working behind the scene to take care of your family. John Farias – Administrator John and his cousin, Natalia, started San Rafael. John drew from 16 years of experience working at his family’s home health agency to build an ethical company focused on quality care. Home health is the family business, and he has worked hard to make sure that the culture at San Rafael reflects these family values. Natalia Farias, FNP-BC – Director of Nursing Natalia is the head and heart behind our clinical department. She is a board certified Family Nurse Practitioner with 15 years of clinical experience.  Her passion for health promotion and education has been the driving force behind our clinical quality. Wendy Renteria – Financial Director Wendy has a Masters in Business Administration. She has worked in home health for 14 years, and helps make sure everything is running smoothly in the back office. Susan Phillips, RN– Assistant Director of Nursing / Case Manager Susan found her career path after her youngest daughter was born with multiple medical disabilities. She has now been a pediatric nurse for 20 years and her daughter is thriving! “As the parent of a special needs child, I bring an understanding that I could not if it weren’t for my own experiences. Raising a special needs child is a lifestyle – from hospital stays, surgeries, and ordering medications, to doctor appointments and having nurses in my home 24/7.  At times it can be challenging, however, all of these things are essential to her survival and growth”. Ruben Carranco – Medical Biller / Therapy Supervisor Ruben has worked in the healthcare industry for 9 years.  His passion for working with special needs children comes from his own experience caring for his brother who is total care special needs.  He believes in the importance of treating every patient like family. Cynthia Hernandez, RN– Case Manager Cynthia has worked with children with complex medical needs and terminal illness for 10 years. She was called to nursing after watching her mother battle with pancreatic cancer. “It was the comfort, compassion, and exceptional care provided to both my mother and family that made me decide to become a nurse”. Terry Parker, LVN – Programs Coordinator Terry started working in pediatric home health 16 years ago with a special child that he still cares for from time to time. Before that, he spent over 22 years as a military nurse with duties that included combat tours to Bosnia and Iraq.  He is a competent and compassionate nurse who can be counted on to keep a cool head in every situation. Pete Tercero – Human Resources Coordinator Pete is the latest addition to our staff. He is hardworking and meticulous; a jack-of-all-trades that keeps us organized and always makes sure the office is stocked with delicious homemade treats. Adrian – Happiness Officer Born an ambassador for San Rafael after our own NICU experience, Adrian’s...

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The Ezell Twins

Posted by on 8:09 pm in Uncategorized | 0 comments

The Ezell Twins

The Ezell Twins   As a company that provides private duty nursing (PDN) for high acuity medically fragile children, Pediatric Home Healthcare understands that each child has very special needs regarding their care. Having someone who is initially a “stranger” in your home is often difficult for families who are unaccustomed to home health nursing. As families begin to open up and learn to trust, they often find that their nurses become a part of their family.   Emmett and Owen Ezell were born conjoined from the bottom of their breastbone to their hipbone. They also shared a liver and intestines. When they were just 6 weeks old, doctors were able to separate them during a marathon-long 9-hour surgery. After nine months in the hospital, they experienced fresh air and sunlight for the first time! They then went to a rehabilitation center before finally heading home, for good.   Pediatric Home Healthcare has had the privilege to be with the Ezell family for years. The Ezells researched for a long time before choosing an agency.  They wanted a company that clearly made the patient and family a top priority. Dave, Emmett and Owen’s dad, believes that, “Our family would be at a standstill without the nurses from Pediatric Home Healthcare.  Having two special needs children in one family increases our struggles exponentially.  Were it not for the help of the well-trained nurses that work with our boys, I can say without a hint of hyperbole, we wouldn’t be able to get through a day.”   The twins came home with a tracheostomy after 9 months in the hospital. Regarding working with PHH, Dave said, “I think they understand the struggle of managing a family with special needs children who need PDN and they try to make the process as headache-free as possible.” As they grew, they relied less and less on equipment to breathe and are both currently trach-free. They have begun talking, as well! Mom, Jenny, is a speech therapist and admits that it is difficult to separate being a mom from being a therapist. However, knowing where it all started, she is able to put it all into perspective. The twins are now over 3.5 years old. They are running, jumping, falling, driving their toy cars, learning to talk, and rough-housing like most boys their age. When asked about what sets their nurses apart, Dave responded, “By sending the boys cards and presents at holidays and birthdays, they demonstrate their real affection for the boys.  By making themselves easily available for contact anytime of the day or night, they demonstrate their  commitment to the care of their patients, and patient’s families.  When we had struggles with the school district who didn’t want to allow the boys’ nurses to attend school with them, PHH advocated for us with the district. The list goes on and on.”   The Ezells know that they the hardest days are behind them. Their boys continue to grow strong. Dave said, “At every new hurdle, we’ve been able to rest easy knowing that we’d be able to rely on the commitment and experience of PHH.” One of the best days as a nursing company comes when patients no longer need them. PHH looks forward to having a graduation ceremony with Emmett and Owen soon!...

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Should I add my Child to Interest Waiting Lists?

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Should I add my Child to Interest Waiting Lists?   This is a question many parents ask themselves when their child is first diagnosed with physical and mental health care needs or a disability. Many of the waiver programs have a very long waiting list. As of the writing of this article some of the programs have a list up to 10+ years.   The waiver list is just that, a list that you put your child on in case they ever need the services. When they get to the top of the waiver interest list, eligibility will be determined. Many families feel like their child will not qualify due to their income, keep in mind when your child reaches 18 they are an adult. Once they are out of school and continue to need some time in a day program it will cost money.  Even if you feel like your child will be able to live and work independently you should put them on the waiting lists.   Below is a list of the Texas Medicaid Waivers and a brief description. You will find their phone numbers in the Resource Directory of Exceptional Kids, listed under Medicaid Waiver Programs:   Community Living Assistance and Support Services (CLASS): gives home and community-based supports to people with related conditions.   Deaf Blind with Multiple Disabilities (DBMD): gives services for people who are deaf-blind or have a related condition that leads to deaf-blindness, and who have another disability.   Home and Community-based Services (HSC): gives services and supports to people with intellectual disability (ID) or a related condition who live with their families, in their own homes, or in small group homes with no more than 4 beds.   Medically Dependent Children Program (MDCP): gives services to families caring for children and young adults as an alternative to receiving services in a nursing facility.   Texas Home Living (TxHmL): gives services to people with an intellectual disability (ID) or a related condition who live in their home or their family’s home.   Youth Empowerment Services (YES): gives home and community-based services to children who otherwise would need psychiatric inpatient care or whose parents would turn to state custody for care.   Also, here are a couple of resources that have been very helpful, I pulled some of the information for this article from  www.navigatelifetexas.org.  The ARC of San Antonio (210) 490-4300, who provided a list of these resources have been wonderful in helping parents understand the benefits and services these programs provide. Once you add your child to these list, request a letter or email confirmation.   Kameron Chicoine, Publisher of Exceptional Kids Magazine            ...

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Along Came Alyssa

Posted by on 12:22 pm in Uncategorized | 0 comments

Along came Alyssa As a pediatric home health agency, we believe that all kids are truly exceptional. This is especially true of the children we are lucky enough to work with on a daily basis. Alyssa is one of these amazing kids. Alyssa was born with a rare genetic disorder that causes tumors to grow all over her body. She was not expected to live past the age of two, and it has not been an easy road for her. A few years ago, she developed a large inoperable brain tumor. The only treatment at the time was chemotherapy, but doctors had to end those treatments after discovering that the tumor had grown instead of shrunk. Her family did not give up. They visited many doctors until coming across one who suggested an experimental treatment using lasers to destroy the tumor cells. This treatment had never before been done, and there was only a fifty percent chance that she would make it off the table. Thankfully, the surgery worked. It has now been two and a half years since the procedure, and regular check-ups haven’t shown any signs of the tumor re-growing. Thanks to Alyssa and her bravery, that treatment is now approved for all patients. Even after the successful treatment, Alyssa requires around the clock, highly skilled nursing care. For a while, her family had a difficult time finding a home health agency that could accommodate those needs. However, we are happy to report that Alyssa has thrived in the time she has been with our agency. Last year she graduated from high school. This year she turns 21. We are honored to have Alyssa as part of our family at San Rafael Healthcare and are excited to see what the future has in store for her. Even though she is technically an adult now, she will always be one of our exceptional kids! To learn more about San Rafael Healthcare and the services we provide, please call us at (210) 255-1466 or visit our website at...

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Brody’s Corner

Posted by on 12:20 pm in Parenting | 0 comments

In November of 2009, 7 months into my pregnancy, I learned that something was wrong with our baby boy. We were told that our son was in heart failure and we needed to “prepare for a stillbirth”. At thirty-seven weeks, Brody came into this world and our lives forever changed. We jumped headfirst into the proverbial “deep end” of the swimming pool that is “special needs parenting”. After five months in the neonatal intensive care unit, we loaded our baby boy into an ambulance and brought him home. Our living room became his room. Fast forward six years, and here we are. I’m still navigating murky waters, but somethings have become very clear over the years. It is clear that we MUST take life day by day and be thankful for every moment that we have together. It became clear that I am not only Brody’s mom, but I am his voice. I’ve learned that doctors don’t always have all the answers and that if I don’t look for answers, no one will. I realized that his sisters are his biggest fans and I am always amazed at what kind and compassionate human beings they are becoming because of their brother. Additionally, I have witnessed the power of prayer and I believe in miracles. I made a decision very early on that even if my son never walks or talks and developmentally plateaus without meeting any milestones, he WILL know one thing. He will know what it feels like to be loved. And I have accomplished that. If you have love, you have everything. It is a language that is felt and does not have to be spoken or heard for someone to understand. We have been very fortunate to meet and work with some very kind, compassionate and considerate people over the years as well. Rodney Gray, owner of Wave Healthcare, and his staff, are perfect examples of people who are genuinely in the business to help children with special healthcare needs and their families. Wave Healthcare has been very helpful with acquiring the necessary equipment and supplies needed to keep Brody’s needs met and has exceeded my expectations time and time again. I am so very thankful to have Rodney and his staff “in Brody’s corner” and for all they do for us to help keep our son happy, healthy and out of the hospital. – Michele...

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