Hallie is a beautiful, vivacious, determined little girl. She has this incredible love of life. She loves singing and dancing and has recently fallen in love with drawing. I always find pictures on random pieces of paper in almost every room Hallie has been in. She loves kindergarten and especially playing with the new friends that she is making, as well as sneaking love notes into the boys' backpacks. She is very loving and will be the first to tell you thank you for dinner, or for picking her up from school or to just tell you that she loves you. Hallie has two brothers, one older and one younger that she enjoys playing with and a puppy that she loves a little too much on occasion.
Unfortunately, unlike other 5 year olds, Hallie spends a good portion of her life at the doctors and in hospitals. She was born with many complex birth defects that leave her fighting for her life. Her biggest issue is that she is missing half of both her small and large intestines, although she does have problems with most of her other major organs including her heart, lungs, pancreas, liver, and the small issue of having 5 spleens. She was diagnosed this year with a form of Spina Bifida-a tethered spinal cord. She has a whole at the base of her spine that allowed her nerves to go through and connect to her tail bone as well as it being filled with a fatty tumor. She was also recently diagnosed as having several malformations in her cervical spine, including two of her vertebrae being fuse. I remember sitting at the hospital when Hallie was a baby and asking another mom what her child was having surgery for and how many he had undergone. She laughed and told me that they had lost track. I don't think I completely understood at the time, but I lost track after Hallie's 18th surgery, which was sometime last year. One of her nurses told me that it was astounding to see how many times Hallie has been hospitalized.
At this point, we are unclear of where her future will take us. More surgery is inevitable. We have recently moved from Reno, Nevada to Chicago, Illinois to be closer to better hospitals and doctors. Before the move, we had to take Hallie to Salt Lake City, Utah and Cincinnati, Ohio for her care. Over the last two years, we have averaged one trip a month. Some of them last only a few days, while the longest lasted 2 months. Our family has been apart so much as we have sought help for our little angel. In Chicago, Hallie has been placed in the Intestinal Transplant and Rehabilitation program. While she is not a transplant candidate at this point, our hope is that the doctors here can help rehabilitate her intestines in order to avoid a transplant. She has had numerous tests done which show that she has some sort of mechanical defect, which no amount of diet will help. Hallie is on many medicines, some of them through an iv to help her survive. She has a permanent feeding tube in her stomach and a port with direct access into her blood stream. Hallie has a whole team of doctors including a pediatrician, gastroenterologist, pulmonologist, neurologist, cardiologist, surgeon, neurosurgeon, urologist, geneticist, psychologist, and dentist. We are also seeking out help from a pain specialist.
The Helping Hallie fund was set up to raise money to help pay for expenses with related to her care. Our monthly expenses to keep sweet Hallie alive are well into the thousands of dollars out of our own pocket. I shudder to think what we would do without insurance. We don't get a chance to pay off previous medical bills before she incurs new ones. We are humbled by the many people that have stepped up to help us out. Every little bit helps and we couldn't do it without your support.