Well we got some news today not really what we expected to hear but at least its some answers the results of the MRIs were that here brain is progressing ok the top part but the lower stem that was premature at birth never developed and never will which means that her balance and coordination will not ever improve from what it is now. We are just lucky we have progresses to what we have which is amazing they said! The spines at the bottom is all ok its not twisted they said the brain is not sending the right communication to the lower body to work correctly so that is a lot of the tightness in her joints and muscles. Her spine does have fluid on it r Near where the ribs come off the spine so they sent everything to a neural surgeon Friday night and he will get with us tomarrow because they might want o do surgery to get the fluid off to see if that would help with balance at all. The bone density test came back that her body is at age 5 1/2 and that the growth hormone levels are ok so we can not do any growth hormones to give her a boost. This test did show that she will go though puberty at a very late age they said around 13-15 and when we get closer to that we will have to come back here o a specialist to mak it easier for her o understand and make sure that everything is fine. Her thyroid came back good at this time also but she was very low on iron. This could be causing some of the sleep problems. We are doing the sleep study right now it took a hour and a half to get her all hooked up and ready but she was a trooper. Excited about tomarrow to find out more and to get our questions answered about the whole brain I was in such shock when I found out I didnt hardly ask any questions and we have a lot to ask now after setting down and discussing it with Brandon mom and dad. We will let you all know when we know more thank you for all your support and prayers we greatly appreciate it!
Posted on: Mon, 27 Jan 2014 05:01:24 +0000
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