And Yet,

Many days if you look at Liz, you wouldn't know she is sick. Some days she doesn't feel sick. Most people would never guess she has ever been sick. And yet, she is. Gratefully many days she can run and play with friends and her siblings. Gratefully she has her sight, hearing and mobility. She is smart, full of life and loves to dream of a future as a dancer and designer living in Paris. And yet, her health over the last two years especially has gotten in the way of many of these things. Liz hasn't attended the ballet academy in two years. She needs to sit and rest during times she is outside playing with her sister or best friends. School was not possible at all last year, and questionable for this year. It is part of our daily life, but we move forward each day without dwelling; thinking she will get better. The days she feels good and even great make all that she has missed or had to endure seem almost surreal. And yet, her labs, chronic infections and procedure results tell the story of how her body is unwell. Yesterday we saw Liz's Hem/Onc doctor and his recommendation is that we take Liz to a hospital like the Mayo Clinic so that teams of doctors from different specialties can take a comprehensive approach and all come together to try to find a diagnosis for her. He has called her Pediatrician and asked Dr. L to help us find that place. On Monday Liz will be admited to the hospital here. Shell have the NG tube put into her nose and down into her stomach so that a large volume of mag citrate can be administered and induce a clean out. My poor baby. It is awful to place that tube down her nose and the clean out makes her run to the bathroom every few minute for hours. I hate that we have to go this again. On Wednesday, the plan ( I say plan because things seem to always change when the OR is involved) is to take Liz to the Operating Room and surgically place the G-tube. Most often, GI docs place Gtubes using endoscopy, but Liz is so scarred from all her surgeries and her stomach is so manipulated, that it is best a surgeon open her and place the gtube. Liz is actually happy about this because she only wants her lifelong surgeon touching her, she says. Well alright then Miss Elizabeth! Hopefully in the next two months, Childrens Hospital Los Angeles or Children's of Boston will have an opening for the manometry studies she needs done. We will go to whichever hospital has the first opening. That will be the next hospital admittance and it will be an uncomfortable and difficult week. I will update more before Monday. Please pray for now for our Lizzie's mind. She is weary and tired, scared and mad. This is all so much for a little girl and we worry about her. I just keep asking her to please trust me and my decisions; trust that I trying so hard to make her better. I remind her that I choosing the best doctors and choices I can, and I am praying for guidance and wisdom from the ultimate healer. Thank you for caring about our brave girl. Excuse typos. Written on my phone.