Patient Stories and Parent Perspectives Rule The Thrive Blog In 2016
# 5: A Parent’s Perspective: Getting Night Home Care Nursing For Your Child
Marty Barnes, mother to Casey, shared a three-part guest series with PHS Thrive Blog readers, and this post was her second in the series (she also talked about starting home care nursing, and coordinating a team of caregivers). In this article, Marty discusses recognizing and adjusting to the need for home care nursing at night, and getting used to having round-the-clock caregivers in your home.
#4: Clara Gets Support – And Her First Trip to Summer Camp – With The MDA
Meet Clara, a six year old social butterfly who got to go to MDA Camp for the first time last summer. Clara, who has merosin deficient congenital muscular dystrophy, is able to stay healthy at home with PHS equipment as she embraces 1st grade and learning to braid hair.
# 3: How Reading About Faith’s Lodge for 5 Minutes Changed my Life for the Better
This guest post is from Dannell Shu, who writes at MamaShu.org as she explores the world of her son’s medical complexity and family life within pediatric palliative care. Four years ago, Dannell had at the opportunity to spend nearly a week at “a place where hope grows” – Faith’s Lodge. Here, she met other families who considered beeping machines and feeding tubes normal – giving her family the opportunity to make meaningful connections with others who understood their daily reality.
#2: Charlotte and Her Family Find Daily Joys Despite Severe Epilepsy Diagnosis
After being diagnosed with a mutation of the SCN2A gene as an infant, Charlotte’s family created a collection of things they wanted her to experience and places to visit – titled “Charlotte’s Joy List.” This past fall, they checked ‘run a marathon’ off the list as they crossed the finish line in the Twin Cities Marathon while also raising over $4,000 for the SCN2A Foundation.
#1: The Mom of a Medically Complex Child Finds Continuity Between Home and Work Life
When Molly started here in as a customer service representative, she expected to help children with medical complexities receive the care and supplies they needed to thrive at home. And that is exactly what she’s done for almost four years. During this time, her work life started to merge with her personal life after having a daughter who was born with Trisomy 18 and requires care at home.
Originally published: January 4, 2017