Many of you know that Tim took up the hobby of wood working many years ago, and he has gotten really good at it too. From time to time we post pictures of cool things he has made to help store medical equipment, or make our lives a little easier, or just really nice furniture …
What Does a Deaf-Blind Diagnosis Look Like?
Shortly after Casey was born, while we were still in the NICU, we were told that Casey failed her hearing screen, but that many babies fail this test. They went on to tell us that they will be doing additional testing and that we should not worry about anything just yet. They performed an additional …
New Logo!!
Thank you to the amazing Studio Julie Ann we have a brand new logo!! Julie donated her time and services and I love what she came up with. The colors, flowers, everything looks great with the rest of the site too. And most importantly, Casey loves it. Thanks, Julie. And if anyone out there is …
10 Things You Should Know About Having a Child With Complex Medical Needs
There are lots of articles on sites like The Mighty that cover topics like “Invisible Disabilities”, “Being a Parent to an Autistic Child”, etc. While I know there are a lot of families that can relate to these articles, that is not my world. My world is the complex chronic side and we have a …
About the Pumpkins
I want to make an official statement about the pumpkins this year. As many of you may know about 5 years ago Tim and I started working with our neighbors and friends to make Halloween inclusive for Casey. Some did this on their own while we took stickers, pencils, etc. to others. Since Casey can …
Book Drive
Fall is in the air and that means one thing- our book drive is in FULL effect! We gladly collect books all year, but during the fall we really step it up a notch. This year we have teamed up with Dell Children’s Medical Center’s Palliative Care Team as well as CPATH Texas for our …
A Day With Casey
Early July a film crew came out to film a day with Casey. This was part of a project that the State of Texas is doing in collaboration with Homeland Security and Texas Parent to Parent. A new website was built, Navigate Life Texas, to help families like ours. Instead of just being links and …
Ebbs and Flows
We have learned with Casey that we could have a great morning and then the next thing we know we are running around like a bunch of headless chickens trying to figure out what the heck is going one an hour later. Luckily we have really understanding friends and family. This often means we can …
New York Times
Yep, you read that right, Casey is in the New York Times this week. The NYT has a photo journalism blog called The Lens that features different photo essays on all types of topics. The photographer that has been around for the past year or so has been working with us and a few other …
Tummy Troubles
Casey’s ear infection last week was really bad so they put her on an oral antibiotic as well as her normal drops. Antibiotics do such a number on her poor tummy. We have been swimming in poopy diapers all this week. The antibiotics run for 10 days and the tummy issues kick in around day …