Saturday, June 30, 2007

Chedner's on the mend again.

Chedner has just had his third surgery, this last one in Virginia. He has multiple congenital anomalies seemingly caused by Caudal Regression Syndrome, a rare birth disorder. He needs a number of major repairs still, but this surgery was small by that scale. Ched had three hernias, one of which was getting stuck and causing problems. Last Thursday, the doctors fixed two of them and completed a few tests which attempted to map his anatomy more clearly. The good news is he is recovering quickly and is back to his smiley self this morning. The hernias were complicated, but the docs feel they have a good fix in place. Without significant stomach muscles (he didn't grow many in utero), they had to figure out how to keep the hernias closed. Ched will eventually have bladder revisions and the surgeons will attempt to reinforce the muscles that he has there. The tests showed he has a bladder of sorts and we are chosing to be optimistic in hoping that it will function correctly. Surgeries to revise his urinary system will begin in next fall. Not so good news....his sphincter muscles are not working well and the strongest one isn't in the correct location. Basically, this means he is incontinent and will most likely remain so. We meet with the surgeons in a few weeks for a post-op check and discuss surgery for the colostomy before the end of the summer.
Thankfully, Chedner remains a happy, easy-going boy most of the time and we are enjoying watching him grow. At 16 months, he has a sense of humor and a temper, is talking a bit and can crawl all over. He does know how to stand up, but due to a malformation of his pelvis and bilateral hip dysplasia, he isn't walking. We don't know when or if he will walk unassisted, but a visit to the ortho doc will hopefully give us some guidance on in this area. We are hoping to get him a walker sometime soon so he can get up and chase the other boys around.
Please keep him in your prayers as we go through the summer and into the fall. It is often hard to believe that one small body can have so many problems, but at this point, it appears I care and worry more about that than Chedner does. He is just enjoying life!!

1 comment:

Kim said...

He's a cutie pie, that's for sure. We're still here at UVA and not able to email, but I came across the blog after visiting the website and wanted to say hi. It was nice having you and Ched as roomies. Please stay in touch.