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

Wednesday, December 14, 2011

More junk for Lilly to get out


I'm not sure if we're in a new phase of Lilly's illness or if she now has a cold. (Her brother seems to have a light cold today.) Off and on all day her nose has been running with thick greenish yellowish stuff. I use the NoseFrieda to suction her nose and the stuff I'm getting out has actually turned my stomach a few times when I clean out the nose sucker after a suction.

Nice image, huh?

But we do what we need to do to try and help our kids. Even when it makes us queasy!

Lilly is getting irritated with having her nose messed with, but other than that seems OK today. For the past two mornings she has spit up shortly after having her antibiotic - and I can smell the medicine in the spitup. I hope she is keeping enough inside to help her properly. (She gets a dose at night too.) I'm trying to give her the medicine with yogurt, to help her stomach. It's been working for the most part.

I took the pictures I posted today this past Saturday. It was my second round of having all three kids in front of the Christmas tree to try and get a good picture for our annual Christmas card. NOT EASY TO DO! I'm glad I'm not a professional photographer. Group pictures are hard. Seems like someone either blinks, makes a bad face, turns out a little blurry, or something.

Yesterday my husband got an e-mail for us from A.W., a friend of his mother's. She shared some kind thoughts and ended with a poem entitled "Hope" by Emily Dickinson. I thought that was neat since I had mentioned hope in yesterday's post. I admit I'm not a huge fan of poetry (though I used to crank it out as a kid) but I liked the poem enough that I have posted it below.


Hope - by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

5 comments:

  1. Carol in New ZealandDecember 14, 2011 at 4:10 PM

    That poem is a favourite of mine and the first verse is imprinted in my brain. Lilly darling, you look a stunner in front of the Christmas tree! Your Mary Janes are just like mine. Amazing that you are keeping so cheerful. Your sinuses must hurt. Thinking of you on the rainy day in Auckland in my caravan. Love, love. xxx

    ReplyDelete
  2. My sweet Lilly. You look beautiful in your red dress and tights. :)

    ReplyDelete
  3. Big brother H. is the worst at pictures! During pictures, He and Cousin JL are such....such.....
    BOYS. :P

    ReplyDelete
  4. Just wanted you to know that we're still praying a lot of Lilly.

    ReplyDelete
  5. Hope... is what the CHRISTmas season is all about!
    ''Behold,a virgin shall conceive and bear a son,and his name shall be called Emmanual'' Matt.1:23

    love the pictures and the poem!

    ReplyDelete