Christopher update: (Ill do the best to spare you terms that make my brain hurt to understand, but the unavoidable ones have an explanation attached.) We have hematology tomorrow so prayers that he doesnt give us any surprises regarding his ANC.. (A normal ANC is about 3,000-5,000. An ANC below 1,000 means your child is neutropenic and has a greater risk for infection. When the ANC is below 500, there is an even greater risk of developing a serious infection. The longer someone is neutropenic, the greater the risk of infection. Christopher must receive injections of a medicine called GCSF, or also called neupogen, which nudges his bone marrow to produce a sufficient number of neutrophils.) Cardiology has ordered some labs for his chemistry levels, potassium and calcium. He doesnt know that part yet so prayers the labs go smoothly. We got the new recommendations on his amino acids today. We are introducing l-ornithine and hoping it will brings some levels down which is very unusual to happen in BTHS and to bring some levels up, eventually able to discontinue the arginine and keep his levels where they should be. (Amino acids are organic compounds that combine to form proteins. Amino acids and proteins are the building blocks of life. When proteins are digested or broken down, amino acids are left. The human body uses amino acids to make proteins to help the body: Break down food Grow Repair body tissue Perform many other body functions Amino acids can also be used as a source of energy by the body.) He is doing well with school and making progress in his reading and math. He really enjoys the science and social studies, but that doesnt challenge him too much. Hes such a bright child. We got an especially wonderful treat in seeing him sign his own name to his Dads birthday card. Hes also doing well in all of his therapies. His speech, physical and occupational aspects have made tremendous improvements. Hes his usual confident self at therapeutic riding and is showing improvement in strength in this area as well. His favorite thing to do right now is to pretend cook and hes asked for an EZ bake oven for Christmas so he can cook for us. Hes also an amazing care taker of his little animals, alive and pretend. He LOVES to talk as any of you who have spent any time around will see quickly. He will amaze you with the things he knows about life at such a young age. Christopher is such a joy to be around. Weve spent most Fridays for the past several months watching his big brothers team play football. They made it all the way to the play offs after the most successful season the Rangers have seen in years. Needless to say, we are very proud of both of our boys. Sorry for the marathon update. If you would keep our little family in your prayers, we would cherish them greatly. We are tremendously blessed and need to continue looking up as those blessings faithfully come down.
Posted on: Tue, 11 Nov 2014 03:33:38 +0000
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