Out of your Incubator, Into a crib!

Dear Annie,

Today was exciting! When your daddy and I came to see you, we walked into the room and you were in a CRIB! You were out of your incubator and we were so confused, yet so happy! I don't know how much you like it since you are not a fan of the noise... but, ah! It was SO great to see you with out a lid covering you. You looked so pretty and so cute! As we began to start talking to you and holding your hands, you began to open your eyes. You began to move your arms around and cry. We didn't know what was wrong. The nurse then suctioned out your mouth and nose since you had so many secrections. You stopped crying, you kept your eyes open though. I think you were confused as to where you were because you are so used to your incubator with a lid and with just a crib, you have a lot more to look at. I put a picture up of your dad and I so when you do open your eyes, you can see us:) It was so nice to see you with your eyes open for awhile. It made me so happy and I loved just looking into those baby blues of yours. (video of you: https://www.youtube.com/watch?v=oo3XEyYHQOk&feature=youtu.be)

As far as an update, the tegretol that you have been taking that was helping your episodes and spells is now not helping as much. You've been having around 25 spells each day. Last week, the most you were having was 16. We are just hoping and praying that we can find a medicine that will work much longer and help your episodes and spells to go away fully. I know that's asking a lot, but I know that with Faith, the Lord can do ALL things. Your dad talked to the genetics assistant today and the results for the Stuve-Weidmann test came back negative. But, we still have to send in a much larger genetics test with will be extremely detailed and will not just be using your blood, but mine and your dads. This test takes up to four months. We are hoping and praying that we will be able to get answers. In the test that came back today though, they did see some certain areas that were a little different so we are just hoping for some answers here in the next few months.

Annie, I love you so much. I am so grateful for you and your sweet spirit. I love going up and seeing you every single day at the Hospital. You are such an amazing example to SO many people. Keep fighting sweet little. I have Faith that everything will work out the way it's supposed to and I know with out a doubt that the Lord knows what he is doing and that he loves us very much. I hope you have a wonderful night sweet girl. Sweet dreams. I love you.

Love,

Mommy