Prader Willi Syndrome

October 21st we got Lillian's diagnosis. She has a genetic disorder called Prader Willi Syndrome. I don't want to go into details about what that means because frankly I'm tired of explaining it and anyone can easily google it. If you care to know about the disorder, check out www.pwsausa.org.

The bad news is - there's no cure. The good news is, God gave us a beautiful little girl, she's healthy, she has a huge family that loves her VERY very very much, and lots of friends that will treat her no different than any other kid her age. We are truely blessed.

I've learned a lot in the last two weeks thanks to this tiny little person. I've learned how important and how wonderful it is to live in the present. I've learned not to stress over the future, because situations change, life throws you curve balls, and the best times in life can be wasted worrying about what is yet to come.

I've learned that it's ok to be disappointed. We try to plan things in life, we have expectations, and when those expectations aren't met, it's ok to grieve. Grieving is healthy and an important step to moving forward.

I've learned to love unconditionally. I thought this lesson was learned when I married my husband... boy was I wrong! I look at my daughter now and I don't see the feeding tube. I don't dwell over the thought of taking care of her for the rest of her life, the time and energy it will take to keep her healthy, or the lost dreams I had for her. I have new dreams for her now and they are no less important than the ones we previously had, just different.

I've learned to accept help. I've learned to lean on other people when I'm not strong enough to get through the day. I've learned to count on faith and love and God.

These past two weeks have changed my life forever and I'm so grateful that God has chosen us to be Lillian's parents. We may never glide through life easily, but we will be stronger, grateful, and more faithful because of her.

If you're following this blog, it's taking a different turn. Until now I've kept it pretty much surface stuff. Things like updates and milestones and cutesy pictures. There will still be updates and milestones and pictures, but there will be more posts about ups and downs as we go through this journey of being Lillian's parents. I hope one day she can read it and see how much we love her and will do anything for her... and she'll get to follow her progress to being the amazing woman I know she will be.

6 weeks

Age - 6 weeks
Weight - 8lbs 3oz
Height - 21.5 inches
Sleeping habit - She still sleeps quite a bit, but she has her predictable wake moments. Usually 5am, 7am - 9:30am, 11am-12pm, 2pm - 5pm, 7pm - 9pm.
Eating habits - She's still eating mostly through her feeding tube. She's at 75ml every 3 hours this week. She's still getting half-3/4 breast milk and the rest is supplemented with formula. She eats from a bottle 5mls twice a day.
Favorite activity - She likes to visit her grandma and watch the fan on the ceiling!
Cutest Moment of the Week - She sighs when she yawns. It gets me every time :)
Milestones - She's doing better holding her head up. She still has a long way to go, but can lift her head up and move it to the side. She rolls on to her side, and she also puts her fingers in her mouth!
Firsts - I started bottle feeding her this week a little bit. She also wore her first dress, and celebrated her first halloween! She met her cousins for the first time and went for her first drive alone with mommy :) She also cried for the longest period of time during her sleep study :( It was sad, but nice to know she could actually cry.


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