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. OG/OJ tubes enter the body through the mouth. NG/NJ tubes enter the body through the…
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…
A shift in perspective…
Over Christmas, my 4 year old Eli got sick. We took him to the doctor where they stuck a swab up his nose (which he was of course thrilled about) and diagnosed him with Influenza B. This virus brought 6 days of very high fever which left Eli pretty miserable. Adults know that sleep helps…
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…
Things I never want to forget…
I’ve been thinking that this should be a repeated post. Not sure how often, because clearly not the best at keeping up with things over here (though I’m trying!). There are so many things my kids do and say that I never want to forget, and by writing them down they will be memorialized! In…
Ivy’s Health Journey – Part 3
Remember when I said I’d be so good about keeping the blog updated… yahhhh… So jumping back to November of 2018… By some miracle, we were able to keep Ivy healthy for six weeks during cold and flu season while we waiting for surgery. We were blessed by so many helpful family and friends that…
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,…
My Incredible Ivy 