Prader-Willi Syndrome

We finally heard back from the tests results. Delilah has been diagnosed with Prader-Willi syndrome (PWS). We have had a few days to process this news and now have a better understanding of what this means. For infants, PWS causes poor muscle tone and strength. Most babies with PWS have problems feeding and usually spend a long period of time on feeding tubes. We are happy to say this is not the case with Delilah. She did have the feeding tubes for a short period of time, but she has excelled at bottle feeding. The girl can eat. Most babies also have a hard time gaining weight and growing. So far Delilah has done very well in both accounts. I have arranged with her Pediatrician to have her weighed and measured every month instead of waiting for the normal baby visits.

The effects of PWS are most drastic later on in life. One of the main concerns is the insatiable appetite it can/will cause, leading to childhood obesity if not controlled. In most cases, food has to be closely monitored, even locked up. There is also the possibility if learning disabilities. We are lucky enough to have the benefits of Nutritionists and fantastic learning tools to help curb these problems. (For more detailed information please use the link I have provided on the right hand side of the blog. I have also included a link for donations to the PWS Association for the fight for the cure.)

During this time, we will begin working with her therapists and doctors to build up her muscle tone and strength and discuss things to do to help her development. The next coming weeks and months will hopefully shed some more light. PWS will not deter us from loving and raising an amazing little girl. In some respects we are lucky. We could have been dealing with something much worse then PWS. Delilah will be able to lead a relatively normal life, with just a few restrictions. It will be a life full of insurmountable love.