Then and Now

Wow! A year has passed! It surely doesn't seem like it. Does it ever? It has been such a crazy year. Look at how much has changed.

Look at Lily's arms and legs and cheeks and how much they've filled out.

Look at Lily's face in the first picture. That was during therapy. Oh how she used to scream and cry and whine during therapy! Now she smiles at the therapists and cooperates. . .most of the time.

Lily is now beginning--and I stress beginning--to take a bottle and to eat baby food. She's still trying to learn how her tongue is supposed to work with the bottle nipple, and she doesn't really want a spoon near her mouth. But she loves bananas from our finger and on the bottle nipple, and she's beginning to open her mouth to accept the bottle. It's all short-lived, but it's unbelievable progress!

She's beginning to give me at least five hours of uninterrupted sleep each night. That's considerable improvement from the three hour "nap" I'd get.

She doesn't cry as much as she used to. I really believe she had sensory issues. It's almost like the child has "grown" into her skin.

Again, wow! It's amazing and beautiful to see this little girl at this point, to know where she was developmentally, and to get to experience where she is. Happy birthday, little girl!

A happy day

A year ago today, I had what I'm sad to say was the worst birthday ever. The whole day I was consumed with thoughts of Lily. Was she going to be born on my birthday? Was she going to make it alive? Was that day that should really be a day for celebrating going to be the worst day for the rest of my life?
It turns out that the day came and went, and Lily decided to wait a few more days before she was to show her face to the world. And it's now a year later, and she is still here with us. I breath in this birthday with so much gratitude.
And there's so much more to celebrate. Last night, Lily rolled over from her back to her tummy three times! Boy was she mad when she rolled the first time! She doesn't like tummy time, so she quickly rolled right back over to her back, which she's been able to do for a while now, but watching her roll filled me with such excitement. I love it when she does something new.
She gave me a great present, too! She slept from 10:30 until 6:00 this morning! Of course, I didn't go to sleep right away, so I didn't get the full effect. But 6 1/2 straight hours of sleep is better than 3 any day of the week. Thank you, Lily!
I'm still collecting pictures for the slideshow of Trisomy 18 miracles. I've got 11 so far. I'd really like to have at least 20, but I'd love more than that. If you've got a miracle but you haven't sent one yet, you can send a picture to southerngirl72j@comcast.net. I'd love to include your child. (Oh, and I'm excited because I got a picture of a girl who's 21 years old! Wow! What an accomplishment!) Come on! Add your child's picture with hers!

You're Invited

I just cannot believe that Lily is going to be one in a few days. What a nice birthday present!
Dave and I went back and forth as to whether to have a drop-in like we had for her 6 month or whether to have a regular party. We decided to have a party. Well, more like a celebration.
Because we wanted to have a slideshow of Lily's first year, we knew our house wasn't the place to be, so we're going to have the party at our church instead.
If you'd like to come, you are certainly invited. Our plan is to have the slideshow of Lily, give a little information about Trisomy 18 and share how Lily fairs with the condition, and praise God for this blessing he has given us. Our friend, Momma Ray, is going to talk about miracles, and then we're going to show another slideshow--this time of other Trisomy 18 miracles (still accepting pictures of YOUR miracles, by the way. Just email me at southerngirl72j@comcast.net.). And unless things change, we're also going to have a little live entertainment from a local musician named Chris Ndeti, who just has to be one of the best female singers I've ever heard. (You can go to YouTube and see her rendition of "Don't Stop Believin" to hear her sound.) Gosh, I'm so excited!
So if you're close enough to us, come celebrate with us on May 2 from 2:00-3:30 at Fairview Presbyterian Church Fellowship Hall, 1101 Carolina Ave., North Augusta, South Carolina 29841.
And if you can't come, but you'd like to send Lily a card, you can send it to Lily Smith, 607 Hampton Ave., Belvedere, SC 29841.
What an accomplishment for this little girl! It's been the most difficult year I've ever experienced, but it has also been the most rewarding. Funny how suffering works. Romans 5:3-5 says it all.

A small request

Lily will be turning a year on the 30th of this month. Rather than have a traditional birthday party, we're going to have a celebration of life and a little program that highlights her year, informs her guests about Trisomy 18, and celebrates our little miracles. A friend of mine is going to talk about miracles, and then we'd like to show a slideshow of Trisomy 18 miracles.
We would be honored to be able to add a picture of your child to our slideshow to show our guests (some who may be of the medical profession) the miracles that exist in the world of Trisomy 18. If you wouldn't mind your child's picture being displayed, would you please send me a picture at southerngirl72j@comcast.net? If you do so, please include your child's name (I won't display last names), age (if appropriate), birthdate, and/or angel date (if appropriate--and yes, they are our miracles, too).
I thank you, in advance, for allowing me to show others our world. More birthday information to come. . .
Jill

Aaaahhhh

Lily continues to blow me away. The other day, she had a follow-up appointment with her GI. He issued some bloodwork to be done to check on her liver numbers and her hemoglobin. Call me a bad mommy, but I just couldn't make myself give Lily her iron. I was so afraid of constipation. While she doesn't go every day, she's not hurting to go, and the GI said some breastfed babies don't go every day. Still, he said wait until the bloodwork comes in and we'll see where to go from there. The bloodwork came in today, and I'm happy to report that all was within normal levels. No elevated liver numbers. No need to give iron. Praise God!

As for the liver, I blame the Zantac on that one. I think the GI thought I was crazy for saying that, but I stood my ground. And look at the numbers now that she is off the Z!

We're gearing up for Lily's birthday, trying to decide which direction to go. Luckily, my good friend, Momma Ray, is going to help me with that one. One year old--I just can't believe it!

As for feeding, the feeding specialist says every week that Lily is making progress. Today, I was feeding her some mommy milk while Gabriel and I ate lunch. Lily just sat and watched him eat, very intently, so Gabriel and I made a game out of it, explaining to Lily what Gabriel was doing. Gabriel got a kick out of me telling Lily that he puts the food in his mouth and chomps on it. He must have asked me to repeat it a hundred times before lunch was over. I think I'm going to take a container of applesauce with us when we go to the feeding specialist so Gabriel can eat and Lily can watch him. She honestly is so much more receptive to the spoon that way.

It might sound boring, but feeding is our biggest issue. Since she's almost one, it's a big issue. I mean, she's got to get enough nutrients in her. But, my, how fortunate we are. How can I thank God enough?

To see Lily's eyes light up, to watch her follow us across the room, to hear her sweet little cooing sounds (especially when she's making them because she's found her fingers and is trying to calm herself down), to feel her excitement when we play. . .aaaahhhh. She watches her hands and knows that her toes are her toes (even though she isn't playing with them yet). She likes to reach up and touch your face or give high fives. She adores the two most important men in her life--her daddy and her brother. She still doesn't like to sleep much at night, but she has good moments and bad moments with that one. I love for her to just sit in my lap, lying back against my chest, the two of us just chillin'. Aaaahhhh.

Moving!

I am about to do something I never thought I would ever do. I'm going to move away from home to the beautiful city of Charleston! Dave recently got a job where he will be teaching at a private school next school year, and he might even teach summer school, so we'll be moving in the next few months. I've always lived in this little town. Actually, I've always lived within one mile of where we live right now, except for my second grade school year when I lived about three miles from where we currently live.

I'm excited and scared and sad all at once. One of my biggest concerns is replacing Lily's doctors with doctors we feel just as highly about. And then there will be the therapist changes. Lily loves her therapists! I hope we can find some who are just as loving and knowledgeable.
But there are other things to worry about right now. Like selling our house and finding a new place to live. (No, we still haven't sold our house.)

So if any of you know about the Charleston area--especially the doctors--please, let me know.
Old picture--Lily making a snow angel

What would I do?

A few years ago, Dave and I went to China for a month to teach English. That's where we met Tracy, our classroom interpreter. The other day, Tracy emailed me to find out what I would do in her situation. She is 32 weeks pregnant, and a recent ultrasound found that the baby has only one artery in its umbilical cord. Tracy didn't know what to do--terminate or let her baby live. I'm assuming that because she is Chinese, she has to consider her country's one child policy.

She asked what I would do under her circumstances, and I have to admit that her question really got me thinking. I told her Lily's story and why Dave and I chose to keep her. But with our choice, there was that background information that we could have more children. But what if Lily was the only child we could have? Would my faith be strong enough to choose life for her? Of course, I would hope so, but I can't even begin to answer that question because I've never been faced with a limitation like that.

If you would, please pray for Tracy. She and her husband have decided to keep their baby. Please pray for peace of mind, that the fact that the doctors have not been able to find any other problems is evidence of a healthy baby, that God's miracle shines on this family in the way He sees fit.