Two and a half weeks and counting

Well this is the first post. As of its writing, our daughter Laura is about two and half weeks old and doing well. Laura had quite the busy week this week. First, she had her first appointment with her Pediatrician Dr. Chris Pielop on Monday. It went well. He gave her the once over. Pulled ever so gently here, listened carefully there and looked in her ears and eyes as well. Over all he was very pleased with how well she is doing. His big goal is to have her be able to feed without the use of an NG tube. An NG tube is a tube that runs through Laura's nose, down to her stomach. Its purpose is to ensure that Laura gets all the food that she is supposed to get. To get rid of it means that she is eating her required amount on her own. This is something we are still working on.

Tuesday, the rep from Early Childhood Intervention came by. The purpose of this group is to help get Laura ready for her life as she grows. She will need the help due to her Down Syndrome. Newborns with Down Syndrome typically have low muscle tone as well as a host of other developmental issues.. E.C.I., and groups like them, exist to help children with these and other issues learn how to work through the issues so that they can have as normal a life as possible. In the case of Laura it means that she will go through what is called occupational therapy. This means that the therapy will focus on Laura's gross and fine motor skills. The meeting this past Tuesday was just an informational meeting. The rep. needed to get information from us as well as learn what both our long term and short term goals for Laura are. We told the rep that we want to be able to mainstream Laura in school, send her to college, and give her the tools she needs to be able to live an independent life. Ambitious to say the least.

Now we know Laura has a long way to go and we all have allot of work ahead of us, but it can be done. For anyone who is going to be facing this or other similar issues I want to warn you, there is allot of good information out there and allot of bad (particularlly on the web). The most important thing you can do is get a good support group around you. This should include your parents and close friends, doctors (your pediatrician should be the ring leader for this side of things) and local community groups. We have the privlage having a support group that is excited about Laura and wants to do what ever they can to help her. Needless to say we feel very blessed by all of this.

I will warn you that there are still some who think that Down Syndrome is best treated by sending these children away because there is nothing that can be done for them. Or if the diagnosis arrived at by an amniocentesis, there are doctors that will push hard for an abortion. These attitudes are mostly seen in the older generations. In the case of family members who have these attitudes, it will be up to you to help them see how amazing these children actually are. In the case of medical professionals who cling to these archaic attitudes you will need to find others who share your own beliefs.

Either way start at your local book store where you can find books filled with the most current and up to date information. As for you dads out there, I am sorry to say that there are not to many resources aimed speciffically at you. Most of the books will discuss either raising a child with Down Syndrome, or how the mother can cope with the diagnosis. My best advice is talk to everyone that will listen about how you are doing with the diagnosis (I know I have had a hard time with it and still do). You will be amazed at the how everyone will respond. Obviously you can post comments here as.

That brings me to my last two things. Please post as often as you like or feel the need to. I will try to have new bloggs upo every couple of days or so. Keep resposes clean. If you find a helpful resource list it in your reponse so others can make use of it as well. Finally, the next few posts will wlk you down what we were going through from the before the diagnosis to where we are currently. Please check back often.