Finding Answer's

I begin my blog with trying to find an answer to my unanswered questions for which are not easy especially when your child has a rare syndrome. The sad thing is that doctors still are not sure what to call is. Some say it is Situs Ambiguous with polysplenia and then other say its Addominal Situs Inversus with polysplenia. The reason for this is that lot of doctors really don’t know much about it so you as a parent are left with unanswered answers. The worst thing that can happen is that a child gets shuffled and you as a parent feel as if you are lost.

I am on a quest to find answers to my questions. It’s my belief that things happen for a reason. I am not the type of person to have a pity potty about things. Most of all, I’m going to do what I can to make it better for my child. My family is lucky because as far as we have been told Chloe does not show any heart defects and we are grateful. The cardiologist voice still lingers in my head. “Chloe you are a very very very lucky Girl,” she said. It was a sign of relief and I started to cry. However, I still feel the need to find out as much as I can? I feel that things happen for a reason and I am on a journey to understand why things happen the way they do.

This is what I know Chloe's liver is midline, she has a right-sided stomach, 5 spleens and interruption of the inferior vena cava (IVC) with azygous. The azygous is larger than normal. Chloe has had 4 pneumonias, numerous ear infections, and chronic bronchitis. Primar Ciliary Dyskinesia has been ruled out by NIH. However, I won't know for few weeks until they find out whether or not she carries the gene. It is just so much to take in all at once. Chloe is perfect in my eyes and if it wasn't for her being sick a lot you would never know that she had all these things wrong. The mircle of this all is that her body has learned how to work. But, we still do have other things to worry about. This is where my crossing has lead me so far to place in my heart where questions are left without answers.

I end today’s blog with this. If you are a parent don’t give up and find out what you can. Listen to yourself and listen to what your heart is telling you.