The Theory of Everything

Charlotte is a whopping 7 pounds now! Laura's sister and brother in law, have given Charlotte a bouncy seat that vibrates and has a bar overtop that plays music and lights up. Charlotte is awake more during the day now, so she loves to sit in her bouncy chair and stare at the lights. She is almost done with using a breathing tube. She is down to .1 liters, which is almost no support. She has been doing well with the feeding tube in her intestine. Her food is given over 24 hours, so she gets very small amounts at a time. This helps to decrease her reflux. Because she has done so well, the doctors have moved the feeding tube back into her stomach to prepare for tolerating food in her stomach. She is doing really well. Her breathing is stable, and she is not refluxing very much. However, Charlotte had a second swallow study and didn't pass it again. So, we have to wait 3 more weeks to see if she improves. If she doesn't pass the third time, she will receive a tube in her belly that will allow us to bring her home but give her food to her through the tube until she can swallow all her food by mouth safely. Some children who have required extended assistance for breathing take longer to learn how to swallow because their breathing/swallowing structures are very weak. We have several friends who we have met in the NICU who have had this procedure done on their child, and it has gone very well. We will do whatever we need to do to get Charlotte home. We are still working on finding a reason for Charlotte's low platelets. She still needs transfusions of platelets 1-2 times a week. Charlotte is the subject for a pilot research study at the University of Maryland which aims to look at a person's entire genome, which is their entire genetic code, to find a reason for their disease. After looking at Charlotte's entire genetic code they still can not figure out why she has low platelet levels. Laura is currently reaching out to several experts in the field of hematology around the country to obtain second opinions that might help the doctors manage Charlotte's low platelets. She is gathering lots of great information and is hoping to pass it along to the doctors at Maryland this week.

Having a critically ill child can pull a parent to a new low they never knew existed. With the unceasing amount of tests, scary possibilities, and unknowns that we have had to endure since December when Laura's pregnancy troubles began, our strength and faith have truly been put to the test. Recently, we watched an inspiring movie about Steven Hawking called "The Theory of Everything." For those of you who don't know, Stephen Hawking is regarded as one of the most brilliant theoretical physicists since Albert Einstein. At the age of 21, he was diagnosed with a motor neuron disease and given two years to live. He is now 72. Towards the end of the film, Steven Hawking makes a bold statement that truly puts life in perspective. He says, "There should be no boundaries to human endeavor. We are all different. However bad life may seem, there is always something you can do, and succeed at. While there is life, there is hope."