Thursday, October 19, 2006
Update from Shriners
We have returned home and have already had a very long day! So K does not have to wear the brace anymore. :) That is the good news.
We met with the geneticist who gets together with one of the foremost experts on Amionic Band Syndrome every month. He informed us that the problems that K has are most likely not genetic related (no surprise to us). K's problems are most likely caused by the band tethering her in a position that kept her bone structure from developing the way it would have had she not been held in the way she was by the band. This is the best explanation we have heard yet. He wants to see us again next year.
We also met with one of her doctors and K does not have to wear the brace anymore. :) That is the good news. The bad news is that the doctor thinks she will be put in a brace for her back in the near future. She has to have an MRI done in December to check her spine and make sure there is no neurological damage. They are also going to check her neck and make sure there is no neurological damage. In addition to this, they are concerned that she may have a problem with her kidney so she is going to have to have an ultrasound done the same day the MRI is done.
We are also going to have to meet with a doctor who is going to check on K's chest. It was determined that because her body is asymmetrical her chest wall is not what it should be. Because of this we have to see what needs to be done to make sure that she does not get her heart bruised which is a real and dangerous possibility if the chest abnormality is great enough. So we go early in November to see what this specialist will have to say. He is said to be one of the best in the field for what K is going to see him for.
So, overall this was another tough day. It makes us wonder if the saga of incessant hospital visits will ever end. We are both tired physically, mentally, and emotionally.