Sunday, January 1, 2012


December has come and gone, and with it, many intentions to write post after post.  Unfortunately, there just isn't much time.  I wanted to write about our month and how we celebrate Christmas the whole month of December with Gabriel opening little advent boxes to find out what the activity for the day was going to be.  How we made birdseed pinecones for the birds and camped out overnight with friends at the county park, visiting the light display the park has.  Breakfast with Santa, cookie baking, movies, a nursing home visit, hot chocolate with marshmellows. . .we were very busy!

And then I got the shocking email that our little friend, Lilly (see Pray for Lilly in the right bar), passed away, and a day later, I saw a Facebook post that little Julia (the little girl we visited on our way back from Canada--see Dancing in the Rain in the right bar) also passed away.  It was a very emotional time.  The Sunday of that week, Dave and I decided to head up to North Carolina with the kids to Lilly's viewing.  It was nice to meet Lilly's family in person and support them--yet another part of my Trisomy family.  And I wanted to write about it, to try and, once again, make sense of all of the emotions that soar for these families, ashamed of the fear that erupts for my own little girl while watching the pure gracefulness that these mothers have in the face of death, their trust in Our Heavenly Father, and their faith.  

Among all of this, we were also dealing with Lily vomiting again.  We're thinking that a slight change in formula coupled with no reflux and motility medicine aggravated this.  So Lily went back on all of her meds, a week passed, and we didn't see any vomiting until yesterday morning.

Right before Christmas, we visited my hometown and all the family who lives there.  It was nice to spend that time there, but being out of town turns schedules upside down, and for some reason, Lily just wasn't liking her oxygen cannula.  She cried any time we tried to lay her down to go to sleep.  I thought it might be because she was without her humidifier. Dave thought she might be afraid of the dark in a house that isn't hers.  We both figured it would resolve once we got home, but both Christmas Eve night and Christmas night, she continued crying when we laid her in bed.  Thinking it had something to do with the humidifier, I checked it on her oxygen concentrator and found that it wasn't working, so I adjusted the tubing.  It worked and Lily stopped crying. . .for about five minutes.  Then she started back, so I looked at the water trap that connects the tubing to her cannula tube.  The room was mostly dark, so I'm guessing that when I checked the connection, I tilted the tubing, not knowing that it had water in it.  I heard a strange sound coming from her cannula and jumped up to take it off, only to find that water was spraying out of it!  That meant that it was going in her nose and she could have been breathing it in!!  She was crying, so Dave was trying to console her.  Then she was coughing and gagging and throwing up this bubbly gunk.  It concerned me because I had heard a few summers ago about this little boy who passed away due to dry drowning (I think that's what it was called)--where he went under water but then came back up and went home, only to not wake up after going to bed.  I've heard that you can drown in a tablespoon of water, and was so worried that maybe Lily had aspirated on that water.  Then all of a sudden, Lily fell asleep and her nose turned blue!  I was so worried that she had, so Dave took her to the emergency room.  Luckily, an x-ray confirmed that all was ok, and Lily got to come home.  And so ended our Christmas.  Not exactly the way I envisioned, but I'm certainly glad that it wasn't worse.

With Christmas over, we were able to relax a little and watch the kids play with their toys, and Dave even got our garage cleaned out and organized.  I wish I could say the house was the same way.  

And now the New Year is here.  It's hard to believe that it's been almost a year since Soleil was born.  Life is busy, but I'm thoroughly enjoying my precious children (well, to be honest, I'm not enjoying this weaning process with Soleil) and watching their development.  Gabriel is so smart and is beginning to pick up on the nuances of our language (he told Dave the other day, "You're killing me, Daddy." and said it in the appropriate (and fun-loving) context); Soleil is cruising everywhere and being highly selective with her food; and Lily is getting that much-needed back strength and taking steps with Soleil's little push toy (with assistance) and playing with her toys. And I am so fortunate to have Dave as my husband.  He is so thoughtful and hard-working, inspiring and loving.  It's also been nice seeing Rani and Autumn grow into the young women they've become.  What blessings!

I wish you all a Happy New Year and hope that your holiday season was filled with wonderful blessings and time with friends and family.  

Gabriel with our advent boxes
Lily and Dave making birdseed pinecones

Lily working on her straight back
Breakfast with Santa.  It's ridiculously hard to get all three children to look at the camera at the same time.
My little contortionist.  Yes, that's Lily!  She just started putting her toes in her mouth!
Gabriel ice skating.  One of our advent activities.
Lily and Soleil in the bike trailer.  It was a beautiful day!
Lily and Autumn on our camping trip.  Autumn had Lily laughing!
Dave, Autumn, and Soleil on our camping trip
Gabriel and his friend Connor on our camping trip
Gabriel on our camping trip
Lily at the parade
Soleil at the parade.  Autumn is holding her.
Gabriel and his friends Connor and Cole at the parade

Gabriel and I sword fighting in Toys R Us


  1. Always so amazing to see your updates. Wishing you many wonderful days ahead. With Love, Shannon (Oliver's mom) & Sylvie

  2. Tabby and I enjoyed reading your update and seeing all the pictures! We loved being able to meet you all in person. Thank you for your support. Love, Lilly's Family