Why I want you to see my child’s disability…

This is something that has been on my mind for awhile. Trying to articulate my thoughts has been tough. As a community, a phrase that we use very often is ‘more alike than different’. We want the world to know that a person with a disability has far more in common with a typical person…

Can and will Ivy eat by mouth?

This is another question I get a lot that doesn’t have a super simple answer. Technically, Ivy can eat/drink by mouth. According to the one swallow study we got when she was 3 months old, she needs liquids to be thickened in order to drink them safely. Her swallowing muscles have always been very disorganized,…

How does Ivy handle her feeding tube?

When she had the NJ tube taped to her face, she was still pretty little so she wasn’t purposely using her hands. She only managed to pull it out once which was good because while NG tubes can be replaced by parents at home, NJ tubes have to be placed in the hospital under a…

Different types of feeding tubes…

Today’s feeding tube awareness is something that I definitely didn’t know before Ivy. There are many different types of feeding tubes! They are named based on where they enter the body and where the other end of the tube rests. NG/NJ tubes enter the body through the nose. G/GJ tubes enter the body right at…

Why does Ivy have a feeding tube?

It’s feeding tube awareness week – something I was so unaware of two years ago. Oh how this sweet girl has opened my eyes! I’ll be sharing about Ivy’s feeding tube all week so if you have a specific question, drop it in the comments! **Why does Ivy have a feeding tube?**  This is the…

What my daughter with Down syndrome has taught me…

When we think of ourselves as parents, one of our main jobs is teaching. We teach our children to dress themselves and tie their shoes. We teach them how to be kind and polite. At some point in our parenting journey, we realize that we are learning too. As a mom to a sweet almost…

Have the Conversation…

A couple months ago, something happened when I took my kids to the park. It was an experience that I have lived from another side. Experiencing it from this side, from the side of a special needs mama, it broke me. When I posted about it on social media, I learned that I was not…

Ivy’s Health Journey – Part 2

We had so much fun becoming a family of 5 over the summer. Besides being slow to gain weight, Ivy was doing well. She was so tiny and snuggly and I loved every minute of being her mom! Excuse me while I add too many pictures before I keep going with the story… In September,…

World Down Syndrome Day!

The date tomorrow is 3/21… World Down Syndrome Day! This day is officially acknowledged by the United Nations as a day to celebrate, educate, and advocate for individuals with Down syndrome. This particular date was chosen because it signifies the 3 copies of the 21st chromosome that people with Down syndrome have. People celebrate in…