― Lao Tzu
It has been quite awhile since I have written anything and I do apologize. Our holidays were fantastic with lots of love, excitement, and happiness. We did learn the results about her muscle biopsy, and she has tested negative for a mitochondrial disease! This is fantastic news because now we have knocked down another hurdle, and brought her closer to the possibility of the heart transplant.
Our Tiny Princess has been making some serious strides with her development, and has begun to walk further distances then ever before! We are looking into leg braces (or AFO's) for her to help fix some small issues she is having. Of course she does not know anything is wrong with her style of walking, and is just concerned about being able to keep up with her friends. Just looking at her, you can only see a very happy, energetic, sweet toddler, ready to get into anything and everything.
It has still been a very trying adventure, but we treat each bump in the road like it isn't even something to worry about. After many discussions with doctors about a feeding tube, the "understanding" side of me is ready for the surgery. The seriousness of Ella dropping into another hypoglycemic episode is real, and the knowledge that we are VERY lucky that she not only survived, but came out unscathed weighs profoundly on our decision. Our Tiny Princess is your typical 2 year old, in the since that she will not eat when she is upset. That scares me. She will go hours without eating, and with most kids this is not an issue. With Ella on the other hand, she doesn't have the same reserve. She weighs 20 pounds on a good day, and the slightest hick up will effortlessly send her into a tailspin. The mother side of me (and my husband can agree) does not want her to have it. It's one more surgery, one more doctors appointment, one more thing that could go wrong, and one more push to the realization she is really sick and not your "normal" child. Then I look at her sweet face and see the understanding, the happiness, the love, and the inspiration that takes each medical situation with such grace. She does get frustrated with the testing, but she doesn't let it ruin who she is. It's amazing what a Superhero she really is.
Our Tiny Princess has LVNC/DCM, EoE, hypotonia, congenital cataract, and developmental delays. In her mind, she is none of that. She is a sister, a daughter, a friend, a student, a destroyer of paper, a snuggle bear, and a holy terror. She knows her limits, but doesn't allow them to limit her. She is amazing!
