Monday, June 15, 2009

Encouraging news

Lily had a modified barium swallow study today to see if she aspirates while drinking her bottle. Nothing much to post about that except to say that it went very well and the speech pathologist encouraged us to continue feeding her with the bottle. Lily is drinking the proper way, and there was one episode of "penetration" of the milk, but it didn't go down into the lungs. Still, we are to watch Lily while she eats to make sure nothing gets down into her lungs, for there is danger of pneumonia if it does. (And I'm happy to say that Lily has increased her intake to 70 ml, but we think she wants more!) Amazing!

We have a doctor's appointment tomorrow, basically to check for weight, but I'm sure he'll listen to her heart, too. Then, on Wednesday, Lily goes for a sweat test to check for cystic fibrosis. I'm not sure of the details, but apparently, either Dave or I is a carrier of that gene. We're hoping for the best because that would be quite a blow--as if having T-18 isn't enough for her to deal with.


  1. love the pictures of the trip! what precious blessings y'all have! will be praying for the upcoming appointments, praying that God continues to give lily health as she is His wonderful miracle!

  2. GO LILY GO! I'm sure you are so thankful that the bottle feeding is going well. Just gotta celebrate one success at a time :>)

  3. What a happy day! She is just amazing!

  4. "Lily goes for a sweat test to check for cystic fibrosis."

    just lick her forehead like mema used to do to autumn and me. :)

  5. go lily! and what a beautiful family, so glad you guys got to enjoy a vacation together. thinking of you and praying for you!