Reality really does bite

All things in perspective, I get it, all things in perspective. Our sweet friends are dealing with the most excruciating thing parents can deal with when it comes to their child. Totally understood. I understand what our family is dealing with is nothing but a blip in comparison. I really do understand. The reason I write this blog is to inform family and friends, near and far, of the good, bad and ugly that we are dealing with on a daily basis. So that being stated again to try and assuage my guilt at being scared and upset when so many others are enduring so much more, I will continue.

We arrived at Children's today at 7am with the preteen pincushion and got yet another bracelet to add to her collection. After getting jabbed and then decorated with purple camoflage wrappings, my dad and I wheeled her across the skybridge and into the tower and up in the elevator. We arrived at the GI specialist's office, ready to hear some good news. After a short wait, we went back to a room with a relief map of the digestive system. My dad decided that would be a fun piece to have hanging on the wall at home(yay for early Christmas ideas!). Dr. A came in the door and brightened when he saw our girl. "There's my special girl! How are you, my darling?". I love him, I do. He poked and prodded and tapped on her tummy as though he was checking her readiness to be taken to a Fourth of July picnic. On her part there was a lot of groaning and ouches and sharp intakes of breath. With the exception of a couple of numbers, he had all the blood test results from an hour before. The basic report is this: liver function is a bit better, bit being the important word. Her liver is enlarged 3cm and is still very sick. The spleen is still big. The gall bladder wasn't mentioned, but the lowfat diet was continued. Guessing it is not up to snuff yet either. Then the words that changed S's day came out of his mouth. "You are very sick. No physical activity...no activity. You may not even return this academic year. I can't take that risk." She took a breath, blinked her eyes several times, mouth dropped open....a single tear started down her cheek. She never broke down completely and I told her it was okay to cry. Dr. A looked at her and said, "I'm sorry, my darling, but as your doctor I love and care about you. If I didn't love you, I'd send you back to school, but if someone were to hit your abdomen, you would have a fast ride right back to see me. I am so sorry." I was stunned. I've never felt like a doctor cared that much for me. It could be all smoke to lure her into a false sense of something. It made her feel better at the moment and that is all that matters. So, we go back Wednesday and Friday to lather rinse repeat and see what is up.

I ask for your thoughts and prayers for her as she processes this latest development. She slept most of the afternoon. Part of it was the Benadryl she had to have, but there was a sadness in her eyes that had not been there since she had been released to come home. She loves school and band and her friends and her teachers. This is quite an emotional blow. Pray also as we start the process of wading through the red tape that will get us a home bound teacher. It is, in its infancy, already proving to be quite a pain in the bum. And keep your thoughts with baby Drew and the Ballingers. I just can't imagine how they make it through a day. They are much stronger than I....


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