Parson has a genetic mutation that took place in the womb. This mutation caused nodules to form in her brain that affected her development. So far the only developmental issues she has are lung related. She has severe lung disease. One lung is diseased and hyper inflated which means it is at risk of "popping" (kind of like a balloon that has been blown up too many times). The other lung is severely diseased and has very limited function. So both lungs are bad, just for different reasons. She will ultimately need a lung transplant. Since transplanted lungs last an average of 7 years, we need her puny little lungs to last as long as they can. As a result, we must stay away from exposure to germs by avoiding most contact with others. She receives an antibody injection every 28 days to provide extra protection during cold/flu season. In addition, she is on supplemental oxygen full time and has a monitor that tracks her oxygen saturation level and heart rate.
Many people have asked if she is on the transplant list yet. She will not go on the transplant list until she needs a new set of lungs that day. So her current condition will determine when she will go on "the list". Thankfully, we are not at that point yet, but it will ultimately be a necessity.
When we saw Dr. Mallory, the lung transplant doctor at Texas Children's on December 20th he said her lungs had gotten worse since he last saw her. He said that he would see her again in February unless she has a significant change or illness before then. We saw her pediatrician, Dr. Fidone on Monday and he said her lung sounds had diminished in the last month.
Stay strong Jennifer....God is in your Plan B. Looking at her pics.....you are right...Parson is a smiley happy little girl! She warms my heart!
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