Practical Tips for Parents
As Ethan has gotten bigger and needed to sleep more upright, we moved him into his bouncy chair in his crib and used a wedge to lift his feet since they hang off the edge.
Folks have also recommended the P-Pod chair, but it is really expensive.
Our kids love music, especially soft children's' music, so we turn on Pandora on our cell phones or computers and he has music everywhere. We especially love Toddler Radio and Baby Einstein's stations on Pandora because it entertains Ethan's sisters too.
Finding Joy with Your Child
We didn't put this one first because survival becomes the immediate priority, but these are probably some of the most important tips we can share.
- Start a list of things you love about your child, from conception to birth, to first coos and smiles, they will get you through the hard times. See ours here.
- Take pictures, as many as you can. Soulumination is a nonprofit that provides professional photographs for families caring for a child with life-threatening conditions free of charge.
- Make an impression of your child's hands and feet, something tangible for you to touch. I've used My Kissing Hands, if you happen to be in or visit the DC area. Pearhead also makes some great hand print keepsakes.
- The help you receive can feel overwhelming. Find a way to give back, when you can and when you're ready, even if it's just small gestures to help others.
The seams in Ethan's socks and pajamas really cut into his skin, so we turn them inside out.
Ethan's hands get tight and the skin in the palm of his hand get red, so we put together hand rolls with a cloth and some medical tape.
Hands and Feet
See the Skin section above.
Comfort & Positioning
Aqua therapy doesn't mean going to a pool, you can do aqua therapy in your own bathtub. Our physical therapist puts Ethan in his bath chair and does his exercises right in the water.