caption - title

The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, July 25, 2011

Leak proof diaper cover and O.T. evaluation




Lilly is modeling her latest diaper cover in today's picture. This is a wool diaper cover. I had forgotten that these existed until my friend H.B. showed me one she used for her son. She said they didn't have the overnight leaking problem when she put it on him. So I ordered one for Lilly, in a deep purple color. We've used it every night on her for over a week now and I am thrilled that she has not leaked at all! Even sleeping 11 hours straight on continuous feed. I can't tell you how happy this makes me! No more washing nightgown and bedding almost every day.



Wool diaper covers can be pretty pricey, but this one is by Disana (I think from Germany?) and is a good price. If you're interested go to:


And if you're new to using wool diaper covers, note that you have to wash them a little differently than regular cloth diapers and covers. See: http://www.abbyslane.com/Wool-Care_c_24.html . You don't have to wash them daily - just air out!


Last Wednesday, Lilly had an evaluation for occupational therapy. I told her I was most interested in getting Lilly some therapy for her hands (to not clench so much) and to work with her on mouth feeding. She agreed that Lilly could benefit from therapy for her hands and suggested "low profile hand splinting" such as a neoprene glove. (A glove that fits over Lilly's palm.) The therapist also wanted to watch how Lilly ate so I fed Lilly coconut oil. She said that Lilly managed the feeding very well. I was happy to hear that.




Lilly's coordinator is now collecting information on occupational therapists who said they would be willing to work with Lilly. Then I will decide which one we want to try.




Speaking of feeding, Lilly's special super healthy chocolate came right before we left town. I have it on my to-do list to try and feed some to her tomorrow. I think I ought to try it too. :)


"If you then, being evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask Him!" - Matthew 7:11

5 comments:

  1. Yes,

    And when she's bigger- choclate cookies!!!! :-D

    T.

    ReplyDelete
  2. What a PRECIOUS picture! This has to be one of my all time favorites!
    She looks like she has on biker pants. I love to blow the pictures up and see her better. She looks so pretty and more like big brotherrrrr!

    Lilly, Lilly! Let's be naughty and eat some chocolate!

    ReplyDelete
  3. How sweet! We use hand splints for Aaron, but also work on just massaging his hands from the knuckles out, usually at feeding time. He's learned to be comforted by those massages and they've really helped him relax his hands. He also gets OT twice a month.

    Lilly looks so wonderful. I just want to kiss those chubby cheeks. Tell her Aaron says "Hi!"

    ReplyDelete
  4. i was wondering what that purple contraption was hanging on the stair post when i was there yesterday.
    lilly, it's wonderful to see you so healthy and contented. God is good!
    love,
    mah mah

    ReplyDelete
  5. Dear Lisa,

    Thank you so much for the beautiful card and thank you for sharing your blog with our family.

    Lilly is beautiful. Praising God with you for her first birthday! I remember how big that milestone was was us. This precious children are such blessings!!!

    Thanks again!
    Jill Pool
    alegriaelizabeth.blogspot.com

    ReplyDelete