Hand to Hold's official blog
Marty Barnes (TX) is mother to Casey, a preemie born at 36 weeks. Casey suffered trauma during delivery which resulted in brain damage, and she has multiple medical needs as a result, including a life-sustaining feeding tube. Marty established the CLU Campaign, a grassroots inclusion project, along with her daughter’s site which chronicles their journey. Marty is an active community volunteer and currently gives her time to Hand to Hold, Mommies of Miracles, and Texas Parent to Parent.
Special needs and NICU parent Marty Barnes gives us an overview of cerebral palsy in all of its unique forms from a mom’s point of view. Though an initial diagnosis of CP can feel like the end of the world, there are many treatment options and ways for children with CP to live very full lives. [Read more]
Milestones, standardized tests, and growth charts quickly become a nightmare for parents/caregivers of a preemie or medically involved child. Instead of being things to look forward to they are constant reminders of what your child is NOT doing. I think the first year is by far the worst. There are so many milestones!! Being a [...]
I am sure we have all heard, and many of us have used the saying ‘it takes a village’. When dealing with a child with special needs and/or medical issues this really hits home. Life for my daughter started in the NICU with a team of medical professionals treating her. Casey turned six in April [...]
Kids love candy. However, for many kids candy is simply not an option. Between childhood obesity, juvenile diabetes, food allergies, and other special needs, the population of children excluded from Halloween traditions grows each year. Year after year I dressed my daughter into her Halloween costume, and then sat at home handing treats out to [...]
Many of us come home from the NICU and enter a whole new world. We have countless doctor appointments, monitors, medications, etc. A lot of us also are introduced to a form of early intervention services for our child. In Texas these services are call ECI, each state has their own abbreviation. Early intervention services [...]
My daughter was born in 2006 with MANY medical issues, including no gag, suck or swallow. Not being able to use her mouth to eat, she had a gtube placed shortly after she was born. Although I was never able to breast feed in the traditional sense, I knew how beneficial breast milk can be [...]
{Editor’s Note: Below are some great spots for Texans, but Marty has some fantastic tips for getting out and about, no matter where you live!} Getting out and about with a child that has special health care needs can be a challenge. There are two great parks that we love to visit: Morgan’s Wonderland in North San Antonio and the new Play for All park in Round Rock. Both of these parks were designed to be fully accessible. [Read more]
I am a pretty laid back person. It takes a lot to rattle me. I was rattled on Monday morning. While I was getting my daughter ready for school, I was watching the “Today” show. A story came on about a doctor in Florida offering a “New Diet Trend” for brides. I will admit, I have [...]
Hand to Hold is a nonprofit 501(c)3 parent support organization and information and resources provided here do not intend to take the place of the relationship between a patient and personal physician.