The GTC collaborates with hospitals, healthcare professionals, patients and families around the world to improve the care, safety, and quality of life for everyone with a tracheostomy.
Resources
The organizations and articles linked below provide information and resources I wish I'd known about when I was new to being a mom of a medically complex child. I hope they're helpful to you.
From parent pay to covering alternate therapies, waivers assist with a broad range of expenses. The most helpful for us, and the best kept secret, is that waivers can also stabilize nursing care by allowing families to bonus nurses, bringing their pay up to a competitive rate. This article is about how to use waivers, and how to secure them.
There are lots of therapies to try. This is a guide to what is available, how each therapy can help, and when to slow down.
What I wish I had known before having children, especially one that was as vulnerable as Declan.
This group is great for asking questions and sharing supplies. If you have extra that you need to get rid of and don't want to waste, or if you need something, you can post here. Note, they have a strict 'no links' policy, which limits resource sharing.
This company makes great stuff for kids with any sort of feeding, speech, or oral sensory issues.
Adaptive shoes that utilize zippers instead of needing to tie or Velcro.
For kids that need extra help with their socks in order to gain independence due to fine motor skill challenges, these socks have hooks that help kids get them on.