Jennifer, Sophia’s mom, shares their story with getting a diagnosis, balancing raising a medically fragile child as well as a healthy older sibling, learning to communicate, managing a medical life in the midst of COVID and much more. In this week’s Tuesday Talk you can learn about Actin Myopathy, assistive communication devices, respiratory equipment, fining support, and many other aspects of being a parent to a child with special needs. If your child has a myopathy, is on a trach/vent, or needs technology to help communicate you will want to hear all of the great information that Jennifer shares.
Helpful Resources Mentioned in the Video:
- Actin Myopathy
- Nemaline Myopathy
- Tobii Dynavox
- Snap Core Communication Software
- Muscle Biopsy
- High Flow Nasal Cannula
- Tracheostomy
- Intrapulmonary Percussive Ventilator (IPV)
- Cough Assist
- Texas Medicaid Waivers
- US Medicaid Waivers by State
- Ventilators
- Kids with Vents – Facebook
- Nemaline Myopathy – Facebook
- Palliative Care