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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

Friday, September 16, 2011

Return of the turtle

Lilly continues to deal with her cold pretty well, thank God. I've spent a lot of time today suctioning and/or wiping her nose. She is starting to get MAD at me for that. I think she's so tired of it and her nose is probably feeling pretty raw by now.

We got out Lilly's nebulizer with the turtle mask as soon as she got sick. She tolerates it in general, but as you can see in the picture she tends to glare at me at times. (We call this look "the furrowed brow.") She's also gotten better at grabbing the tube and pushing it away. Sometimes she starts talking into the mask and I think she's fascinated in how her voice sounds in it. I think the nebulizer is a huge help in keeping this cold under control. Though her cardiologist did warn me to be very careful monitoring her because the nebulizer can mask a nasty virus, the kind that Lilly needs to be hospitalized for.



After having temperatures in the 80s all week, today was amazingly cool. Only in the low 60s. That, and Lilly growing out of her 6 month sized clothing, gave me the push I needed to go through the big bag of 9 month sizes I recently got from my sister-in-law. (She and my brother P. have a daughter 3 months younger than Lilly. Of course their girl is much bigger, though I think Lilly has her beat for fat rolls.) It was fun going through the clothes because some of the outfits in the bag were my older daughter's. But as I put a lot of it back in the bag, it made me think again that when you have a child with a g-tube, and they're on continuous feed a lot, there are simply some types of clothes that won't work. I find dresses and swing tops the easiest with Lilly and plan on sticking with that for the fall and winter. I'll just add stretch pants underneath.



Lilly worked hard in occupational therapy today. The therapist again marveled at what a hard worker Lilly is and how she is amazed that Lilly seems to enjoy so much stimulation. She thought Lilly was doing so well with sitting that she hopes she'll be sitting on her own by Christmas. I am much more hesitant in thinking that, but that certainly would be a wonderful gift.

"Every good and perfect gift is from above ..." - James 1:17

2 comments:

  1. hey, lilly girl, love that outfit! so glad you are feeling better. i wouldn't like to wear that turtle mask either.

    love,
    mah mah

    ReplyDelete
  2. I just like the nebulizer part. Because it's from the S.'s!

    ReplyDelete