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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

Tuesday, December 28, 2010

Weight gain

Weight check = 7 lbs. 10 oz.

Seems like a big weight gain from Christmas Eve, which was 7 lbs. 4 oz. Maybe the new scale is still getting adjusted. But we sure like thinking 7 lbs. 10 oz. is correct! And it really makes more sense.

Today Lilly is wearing a purple hat that her big sister wore the day after she was born.

Lilly was really fussy last night - crying about every hour. She'd stop whenever I changed her diaper. That was a lot of diaper changes! I hope that doesn't become a nighttime habit. I already change her diaper 1-2 times a night because if I don't, she'll leak right through her disposable diaper and diaper cover. She's on continuous feed so that mean lots of wet diapers.

Lilly is, as my husband puts it, "a little lady." She does not like having on a wet or dirty diaper and will often cry if we don't change her quickly enough. My sister-in-law and I both used infant potty training with our children that are now toddlers. (It saves a lot of diapers!) One thing none of our children were very good at was developing a signal to tell us when they needed to go. (Though the book we consulted said they would.) I joked the other day that it would be funny if Lilly were the one to give me a signal when it was time.

We were reflecting today, once again, how merciful God has been to us with Lilly. She will be 6 months old in one week!

As King David prayed to the Lord, I think this is very fitting for Lilly too for God's continued protection of her:

"Keep me as the apple of your eye; hide me in the shadow of your wings." Psalm 17:8


  1. Yay Lilly!

    You gained weight!

  2. dear little granddaughter,
    yay for weight gain!
    keep wearing that "magic" hat. lilly,so you can keep the heat in your body.
    how about a picture of you AND big sister in hats?
    mah mah

  3. YEA for Lilly gaining weight! Love the hat!

  4. Hi, here's a wild idea re: the communicating. For Michael we've always used communication cards for his communication since he's non-verbal. For typical developing infants, there's some studies that show that they can learn to sign. For special needs, sometimes that can work (in our case not so much). However, having an symbol card (the younger they are, photo's are typically better) that they can relate to the situation like maybe a photo of a diaper that she can touch. When we did this with Michael for basic needs it was amazing that it worked.

    Now, I know there's a big difference in developmental age this technique was used. However, I'm constantly amazed at how much that these kids can communicate if we just provide them with the mechanics to provide that communication.

    It's a real shot in the dark, but one that's easy to do and certainly is like "chicken soup"... try it... i can't hurt... :)

    Just a thought... one special needs parent to another... Happy New Year!