“People who consider themselves victims of their circumstances will always remain victims unless they develop a greater vision for their lives.”
~Stedman Graham~
Oh my goodness where to start! Life has been full of surprises, and it reminds me everyday how much the Lord is watching over us. We have met a wonderful family that has a little boy with some of the same heart problems as Ella. What breaks my heart is that he is not doing as well, and the family keeps hearing heartbreaking news at every turn. The thing that I love most about this family is that like us, they take this information, and turn it into something positive. Now don't get me wrong, everyone has their bad days, but they trust in God to lead them to the path they were meant to follow. Watching and listening to them makes me understand how important it is to keep your head up because there is always another way. It may not be the way you want or planned, but keep an open heart and things will work themselves out!
In the past 3 months things have been so amazing for our little Warrior Princess. We attended a Heart Walk in Austin to raise money an awareness for Congenital Heart Defects. They raised so much money for it only being their first few years, and I cannot wait to keep helping!
The Warrior Princess met with a new Cardiologist in Houston that we had never seen before, and I could tell the minute he walked in, he was amazed. He sat there for a minute and watched as Ella was walking (yes walking) all over the room, playing with the nurses and with us. He again told us about how bad her heart is, it doesn't pump like a normal heart, it just kind of makes a slight twisting motion. I understood because after looking at her last Echo I could finally see what it is that they are so amazed about. I guess like anything, if you are introduced to it enough, eventually start to learn how to do it. We also needed to increase her medication slightly because of, wait for it, her weight gain!!!! I could not be a happier mom hearing those words. She is still on a very low dose of everything, and confusing every new doctor she sees.
Our Tiny Princess also met with the EoE clinic in Houston to be assessed for her condition. Come to find out from them, she may have been misdiagnosed. We have finally been allowed to introduce some food into her diet, and this little girl could not be happier! She is eating everything she can get her hands on! We still have foods we need to avoid, she does still take formula, and we still use medication as if she was on EoE, but when she has her feeding tube placed on May 17th, they will take another look at her to see if she really has EoE. I now have a new found respect for anyone on a gluten free, soy free, and dairy free diet. The food is usually really gross, and finding the correct foods can be very frustrating and costly.
Our Tiny Princess did get her brand new AFOs today! They are super cute, but Ella is much more interested in taking them off. We also learned that she has developed a new cataract in her right eye that at some point will have to be removed. That news was kind of frustrating, but honestly once I heard it, I took a deep breath and moved on.
We have been taking each day as it comes. My husband has been blessed with a 2nd job to help with the medical bills that keep coming, and for the little things like new foods that have a crazy price tag. Ella has been talking more and more (when she wants to), and has started to blow kisses at the people she loves. She is also starting to warm up to strangers a little more which makes me very surprised. If I was this little girl, I don't know how trusting I would be with anyone coming near me, let alone giving them a smile and hug.
