You make me brave.

On Friday night Miss Grace and I joined some friends for the premiere of Cinderella! It was a fabulous movie and the over all theme was have courage and be kind. It fell right in step for our family theme for 2015 about being brave.  Every day we sing the song, "You Make Me Brave" by Bethel's Amanda Cook. Jesus is the one who gives us the strength to face each new challenge. I admit there are days when I am sad and just want to have playdates and home days like other mom's and kid's. Instead we are out the door at 7:30am and off to therapy and our schedule is dictated by medication times, appointments and therapeutic massage. But I know God has a plan and a purpose for my precious girl and he is going to use her testimony to reach the nations for Him.

 

So speaking of schedules, we came home to about ten more days of bad weather. That meant missed appointments and rearranging our schedule. We wanted to have Miss Grace back at school on 3/16, but now we are shooting for 3/30. It doesn't make sense to start back to school and then miss 7 of the next 10 school days.

Today is a huge day for our girl. A day that is going to be rough on her, rough on Gator and rough on me. Please pray for her. We have to do some lab work this morning. This is always an awful experience for her, no matter how wonderful the nurses and staff are. We need the information and this cannot be avoided. Pray for peace in her little heart. Then after that we have to go see her muscular neurologist. He is one of the best in the country and we respect his opinion and recommendations. Because of her cerebral palsy everything from her waist down is effected. We have been on oral medication and she is in her leg braces, but now we have to up her botox and do injections in her legs to help with the spasticity. We pray this brings her some relief, although the injection process is going to be rough. Because of her feeding and oral issues she does not take the silly juice medicine well. We need her to swallow it so she can be kind of loopy and less resistant to the injection process (which will be harder on her). Can you pray that for me? 827 is at his new job and so it will just be me and Gator taking her today.

 

 

Thank you friends, for praying for my sweet girl. I cannot tell you how much the calls, texts, letters, care packages and visits meant to us while we were in the hospital. Every time we had a need God provided and met it before we could even worry. I know He is in control. Thank you for sharing this journey with us. I cannot imagine doing it without you.

 

 



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.