Sunday, August 3, 2008

August 2

You are making such great progress towards going home! Today was your first day on full feeds, so this evening you were taken off the TPN. If you show you can tolerate the amount of milk, they will take out the central line this week! They have discontinued your order for Tylenol and Morphine, which before they could give you as needed. Ever since your diagnosis, I have been anxious to get you started on the cholesterol supplement, and yesterday was your first dose. I read that SLOS children most always are autistic, but cholesterol supplements lessen the severity. Sometimes SLOS children can even escape a separate diagnosis of autism, although many of the characteristics are still there.

SLOS is a tough syndrome to have, and while you have all the characteristics, it could be so much worse. Every time I get frustrated over our situation, I have to think about all the ways in which we are so fortunate. You were diagnosed very quickly. Now that we know what we are dealing with, we can take some preventative measures for the future. A lot of SLOS babies don’t start the supplements right away. The fact that we have you at all is an absolute miracle. About 80% of SLOS babies end in miscarriage. Of those that are born, 22% don’t live past the first year. One of your doctors at Women’s was a very compassionate woman, and every time she checked on you, she checked on Daddy and I. She told me that an unexpected syndrome is the second hardest thing a parent could go through. When I asked what the hardest thing was, her response was ambiguous genitalia. I absolutely believe that would be more difficult. Most baby boys with SLOS do have ambiguous genitalia. Thank God you are a girl or we could be experiencing both. You are so strong—when I leave you at night, I don’t worry about your heart stopping or your ability to breathe. Many babies are born with serious heart defects, missing kidneys, or a number of other potentially fatal abnormalities. None are the case for you. The only thing that has kept you in the hospital so long is figuring out how to feed you. What a healthy baby you are!

I just love you to pieces. It is amazing how the simple things you do, like yawn, hold your hands by your face, and hiccup are so adorable to me. You are really beginning to open your eyes and focus them. I know without your glasses you are still pretty much blind, but when your eyes are looking in my direction and you even lift your head towards me, it is the absolute best feeling. You are trying hard to see us, and I can’t wait until Monday when your glasses should arrive. You will be so surprised to see such a big world around you!

Sleep well Sweetness, because tomorrow you are having some very special visitors!

1 comment:

Olivia said...

What a beautiful thing you are creating for your daughter. Our world was rocked when our third child was born in 2006. We have ridden the rollercoaster of emotions you describe here. Our faith has kept us strong and united. I made a book for my son and I too hope one day he will understand enough to realize what God has done through his life.

I can tell you see the strength in your little girl too. They are such fighters and wonderful little people. I just pray I can fight half as much as my son.

Our favorite place is TCH! I'll see if you are there during our next visit. If you ever need someone to pray with you, talk about doctors/specialist, please feel free to call or email!

You can get our info on Joshua's carepage: "JoshuaGrantOber" (case sensitive, all one word)

I will be checking in on Audrey often!

Blessings, Olivia