Sunday, April 02, 2006

Sam Update

We just found out that Sam was actually misdiagnosed. We have actually known about the possibilty for about a month now but didn't want to post anything until we were 100% sure. Results are out and Sam has what is called the Prader Willi Syndrome.

After thinking that my baby was going away for good and suffering with that knowledge for months, we were told that he actually has a different genetic defect. The symptoms are similar to SMA in the begnning but is pretty much the opposite of it when the the baby hits the toddler stage. Not only will Sam be with us for a long time, he'll also be able eat, sit, walk and do pretty much everything on his own. The crazy thing about the disease is that kids are usually tube-fed when born due to weak muscles and then gradually grow in strength until they can eat by themselves and not only that but they usually end up obese because they never feel satiated! Aside from that he is expected to have developmental delays or difficulties in almost all aspects. Upside of the delays is that we are getting to enjoy his small succeses so much. Very rare is it that you'll find parents who get really excited and proud everytime their 9-month baby sits up for a few minutes or manages to finish a half ounce of milk using the bottle. Things are definitely looking up.

For those interested in learning more about what Sam has just go to the Prader Willi Syndrome Association website for now. I'm pretty sure though that i'll be posting more about it sooner or later. Hopefully sooner.

Thank you so so much for all the prayers and support. Miracles really do happen.

Learning to sit with Granny and Mommy.

I can sit with just a little help from my mom. ^_^

I'm so tired!