Cooler days

Weight check = 12 lbs. 14.5 ozs.

The weather here officially feels like fall now. Lilly has had to get out her long sleeves and leggings. Long time blog readers know that we nicknamed Lilly "Sneaky Lilly" because she so often has one sock kicked off. (The "sneaky" part is she always manages to do it when we aren't looking. She's just sitting there all still and innocent then a moment later the sock is laying on the floor.) So I just got Lilly's first pair of Robeez off E-bay for her to wear around the house. (They are little leather slippers with soft bottoms and elastic around the ankles.) Maybe those will stay on!

When we go out, Lilly has a new pair of beautiful black knitted Mary Janes, courtesy of my sister-in-law, K. (A picture coming soon.) K. tweaked a pattern she found, to make it longer for Lilly's foot and the strap longer to fit Lilly's fat roll on the top of her foot. When I initially looked for shoes like that, I really couldn't find any in Lilly's size. Then it finally hit me that other kids her size are wearing walking shoes and had no need for shoes like this. :( But K. saved the day by knitting a special pair of shoes for Lilly.

Yesterday I called to get Lilly pre-registered with Wolfson Children's Hospital in Jacksonville, Florida to get things in order for her upcoming heart surgery. (Nov. 3.) I think they told me surgery is supposed to cost around $47,000 and last about 5 hours.

Lilly's crazy cowlicks all over her head make for some funny hairdos. The front part naturally sticks up into a mowhawk. In the back of her head are two "swirls" - you can see them in this last picture - they're the areas with a bit less hair. The hair growing in between is long and is actually growing straight UP her head. Its so unique and cute and funny. I figure that as her hair grows longer, the weight will pull it down eventually. When I first started peeking online into the Trisomy 18 world, I found one listing of "markers" that a mom had posted. The swirly cowlicks on the back of her son's head were on the list, given to her by medical professionals, of being because of Trisomy 18. But that was the only place I've ever seen that particular marker mentioned.

Hair is so unique to us all. I've got crazy thick dark hair. My husband and older daughter have lighter brown, thinner hair. My son has really blond hair that is thickening up. And Lilly's is of course brown and fine and is really growing in more fully. A scripture that often comes to my mind, which is wonderful and comforting is:

"Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows." - Matthew 10:29-30