Saturday, May 29, 2010


The face that I have not updated this blogs in 2 months simply means that life has been rather uneventful.

The removal of Marley's adenoids and tonsils as well as getting ear tubes have allowed much improvement for Marley. Not only is she sleeping better, she is eating more, has more energy and is no longer sick! Since her surgery in March she has gained more than a pound and finally has gone up a size in her clothes. She is also now walking while pushing a toy walker (slowly) and crawling up stairs. She is happy all the time and now naps for 2 hours during the day. Heaven!

I am so glad she got her adenoids and tonsils removed. It is the best decision that Jason and I have made since she was born.

Since the surgery we have been back to cardiology and her coarctation and pulmonary stenosis are unchanged. For now, we will follow up with them every 6 months- but there are no foreseeable plans for another cardiac cath anytime soon. We went to Ortho last week who is monitoring her dysplastic hip, leg length discrepancy and abnormal turning of her feet. The doctor does recommend braces to help stabilize her legs and feet but otherwise does not need us to follow up with him for another 18 months. 18 MONTHS! Crazy! At that time he will evaluate her hip issues for possible surgery.

And we recently met with a new geneticist who specializes in skin disorders. She could not offer us a diagnosis but said she would try to find other kids who have similar characteristics as Marley. There also may be more specialized genetic tests she could do. Her expectations (as well as ours) are low that she will find out what syndrome Marley has. But geneticists are problem solvers and there is nothing they love more that seeing a kid with a configuration of characteristics that they have never seen before. They love the challenge. Personally, I am glad they are so interested in Marley- but diagnosis or not- Marley will always just be Marley.

I continue to mourn the fact that she won't be like every other kid while at the same very intrigued by who she is. God, she is weird. She is just one crazy, little girl. I think one day I'll have to shave her hair into a mohawk, dye it green and purple and dress her in the funkiest outfits- just so her appearance can match her personality. I think she will surprise me and all of us by the things she accomplishes and overall the person she becomes. I wish I had an inkling of what the future holds for her.