Catching up - birthday, discharge and homecoming

When you hear people talk about "caregiver fatigue," it is a real thing.  We made it through the hospital stay with different issues almost every day.  The feeding program itself is amazing and successful. The drama of extended hospital living is ridiculous. Because this is a rehab hospital and the children are healthy, the kids (and parents) are out and about all the time.  It is like sensory overload at times. Add in 4 different snow and ice days and the fact that the kids could not play outside as much as they needed to and it was rough. The day we discharged was a weather/snow/ice day. I told them I would walk home and come back for my stuff if that is what it took. I was not joking either. Thankfully we made it home slowly and safely. When we walked into the house I felt like I got hit by a ton of bricks. I was exhausted. I could have slept for days. I many ways I am still not back to normal and emotionally I am tired too. I joke and tell 827 Gator and I need a recovery vacation.

The best part of the hospital, besides the program itself, is the connection you make with some of the other parents. Parents who get it and who are living it just like we are. Grace made some precious friends. This is what makes the difference for the kids. Kids who can talk about their g-tubes and their struggle with food like it was everyday life. Because for them it is every day life. We will never forget the friends we made and we hope we can remain friends for a lifetime. We still get together with families from our first long term inpatient stay - in fact just Saturday we celebrated sweet Isabella's 3rd birthday! She ate bites of pizza and a cupcake (which are safe for her). As a fellow feeding Mama, I think that was the best part of the party! Feeding success. It is slow and it is hard, but it happens.

Miss. Grace celebrated her 5th birthday at the hospital. Child Life did an amazing job throwing her FROZEN Ball! We make frozen fractal ice castles out of shaving cream, created rock trolls like Kristoff's family and played a game where we built an Olaf out of toilet paper. It was so fun and we were blessed to celebrate with about 60 friends, family and fellow patients! Everyone had a great time! Unrefined Bakery in Dallas did an amazing job creating a safe cake and Miss Grace ate two pieces! That was amazing and I was so thrilled!

We did lose more food groups at the hospital - legumes and corn. Those are hard losses for my baby girl. They had gotten her to eat a homemade safe hummus and safe black bean dip and she liked them. Her beloved popcorn and fritos are now gone too. It has been hard. She is eating okay. She is still drinking formula and will probably always drink formula to some degree, even as an adult. We understand that and just want her to keep up her oral intake.

Here are a lot of pictures from our stay. I have thousands I could upload but here are just a few . .  her facebook page and instagram have many more.