We have been really, really blessed. Things are falling into place before our eyes. We don't have a house yet but for some reason I am not freaked out about that, just yet. We have an offer on our house and these days that is HUGE!!! I know I am just not grateful enough. It's such a relief.
Since Norah was born I have felt the hand of God in my life more times than I can count. In the hospital, because of her difficulty to feed, squeeky cry, floppiness and a few other things it was suggested to us that we have some genetic testing done. Just two weeks later she was diagnosed with Prader-Willi Syndrome. Of course we were overwhelmed with the diagnosis as well as all the information we received about it. Colin has been a rock! I still think about it often, every day and sometimes it is hard and other times it is not. I know someday it won't be in the fore front of my mind 80% of the time. Currently there is no cure.
Norah's feedings have gotten much better for most of the time. When she was first born she was only drinking 2 ounces and it was taking about an hour. Now she often drinks 3 1/2 - 4 ounces in 30 minutes. I am so grateful for this! She is up to 9+ pounds now. We have been going to physical therapy once a week, seeing the geneticist and endocrinologist. She will have a sleep study the end of the month and if everything looks clear they will start her on growth hormones to help with the low muscle tone and help her grow at a more typical rate. This is the current and best treatment for PWS.
With the bad comes the good. Norah is VERY content, easy going and happy. She emits a very special "vibe" that even those who do not know that she has PWS comment on. I get to keep my baby a baby longer than usual because of her slow growth. At almost 4 months she is just in to 0-3 clothes. She sleeps all night without a peep.
The Lord certainly knows something I don't. There were many times in the beginning that I was sure that I wasn't strong enough to take on this challenge. Colin, again, is a rock. We both feel humbled to have Norah in our lives. She is our little angel, a perfect spirit who wanted to come to earth so much that she was willing to accept a less than perfect body while on this Earth. Knowing this brings tears to my eyes and fills me with something I can't explain.
The link above will provide a great deal of information for you to read if you want to. There is a spectrum of severity and we will only know what they are as she gets older. We take it a day at a time and count our blessings daily as well.
Life is very busy right now and I am looking forward to getting settled and breathing a huge sigh of relief. We will keep our blog updated as to the happenings in our lives, just like always.
