Our second visit to the Pulmonologist found that Claire's lungs are functioning well. She has about 70% capacity because the "other" lung has grown to make up for the parts of the lung that were removed. The trachea is not collapsing as they thought after the first visit. In fact, our doctor says that the biggest reason Claire is out of breath all the time is because she is so out of shape. Since no one was sure of her health, she wasn't encouraged to get much physical activity. We have pushed her to be more active, but have been cautious until we were sure it wouldn't hurt her. She is also very unwilling to exert herself. Our doctor's prescription is to run, jump, ride bikes, climb, and play in order to gain strength. So, if you see me dragging a reluctant child down the street or up the stairs, just know that I'm doing what is best for her, even if it makes her very unhappy.
|Supposed to be jumping on the outdoor "pillow" at the campground.|
Our visit to the Gastroenterologist found that there is liver disease. Her liver is not producing the enzymes it is supposed to be making. There is also a hemangioma (abnormal collection of blood vessels) in her liver. More tests are required before we can talk details. That means more scans and blood draws. It is so hard to get blood. Even when they find a vein, it dries up within a few seconds making it difficult to get enough for the required lab tests. The bruises all over Claire's arms are not from me dragging her around to exercise—they are from the "pokes" at the doctor.
Not knowing is the hardest part for me right now. My imagination starts to think up possible scenarios as I research liver disease. I want to get answers fast so we can start making the necessary changes to help my girl get well. But, it takes weeks and months to get on the schedule for the next test, or to get an appointment with another specialist. I feel so helpless sometimes—until I take my frustration to my Heavenly Father. He is sovereign over all things. His timing is always perfect. He never wastes suffering. When I remember that He is the one in charge, peace returns, and I can rest in the knowledge that God loves Claire more than I, and He is working for her good. The doctors can do what they will, God has Claire in the palm of His hand. I can trust Him with the good, the bad, and the unknown.