Sixteen Months & a Heart Update

How in the world is Caleb already 1/3 of the way through his second year?! Happy sixteen months, Caleb Drew!

I completely forgot to post this earlier because we were so busy the last couple weeks. Caleb had a cardiology appointment on February 13th. His AV Canal repair looked great, and his mitral valve wasn't leaking! Caleb doesn't have to go back for a year!

Caleb has one more surgery coming up... his syndactyly release on his left hand. That's scheduled for March 31st. After that, we won't have any surgeries/procedures on the horizon! Yea!!!

A Good and Perfect Gift

A few months ago, a friend suggested I read A Good and Perfect Gift by Amy Julia Becker. I've read it twice, and my mom is borrowing my copy right now. I loved it and related to so much of what the author wrote. Here's the summary from her website...

A GOOD AND PERFECT GIFT: Faith, Expectations and a Little Girl Named Penny is a spiritual memoir that chronicles Amy Julia Becker's journey through her daughter Penny's first years of life. Top of her class at Princeton, Amy Julia Becker always imagined that her children would turn out just like her. So when her daughter Penny entered the world with Down syndrome, Becker had to rethink everything.

Beyond tackling the day-to-day whirlwind of doctor visits, child development experts, insulting comments from well-meaning friends and even her own prejudices, Becker comes face to face with terrifying emotions. Worry that Penny would die early or that she wouldn't be able to live on her own. Sorrow over the thought that Penny might not know deep love from another person. And her darkest fear, that Becker herself wouldn't know how to love her daughter.

But love? Love from Penny, love from her husband, love from friends, and love from God finds a way to pick Becker up out of her fear and into faith. Instead of being a parent crippled by control and expectations, she finds freedom and joy in loving Penny and watching her thrive in who she was perfectly created to be.

A GOOD AND PERFECT GIFT is more than just a narrative that spans the first two years of Amy Julia Becker's new life with Down syndrome. From the initial dark moments in the hospital to the light and laughter Penny brought into the family, it is a story of a remarkable little girl who surpassed expectations. It is the story of a young couple coming to terms with their first-born child being different than they anticipated, and eventually receiving that child as a precious gift. It should appeal to any reader who wonders how grief can be transformed into joy.

The book is currently available for free download at christianbook.com and at amazon.com. This offer is only available today (Feb 17th), so download it now! 

Starting to pull up!

Caleb has been trying to pull up for a while, but his arms just haven't been strong enough to do much. On Monday, he made some great progress toward being able to pull up on his own! He was sitting on a block (well, actually it was two phone books duct-taped together), and he reached for me. I held out my fingers, and he grabbed ahold. I didn't pull him at all, but I just gave him a stable place to hang onto. With what seemed like very little effort, he pulled up to standing! I was so surprised and proud! We did it over and over and over. And then we did it again when Brad got home from work, so that he could record it.



As Caleb gets stronger, we are going to have him sit on smaller blocks and then eventually the floor. I should note that on Tuesday afternoon, he did pull up a few times from sitting on the floor... but I could tell that it was pretty hard for him.

Happy Heart Day

Happy Heart Day, Caleb!

It's been one year since our little guy had open heart surgery to repair his AV Canal. He is doing so well, and his scars are continuing to fade. One year later, I am still overwhelmed with gratitude for the outpouring of love, support, and prayers from family, friends, and even complete strangers.  

My sedated little three month old right after open heart surgery on Feb 1, 2013.

Caleb eating his heart-shaped pancakes this morning.

15 Month Recap

Weight: 18lb, 14oz

Length: 27.5"

Clothing size: Mostly 12 month, but he does wear a few 12-18 month and 18 month clothes. He still wears size 3 infant shoes.

Diaper size: size 3

Eating: Caleb has definitely found his appetite. It's hard to believe he had a feeding tube this time last year! Caleb loves turkey, cheese, guacamole, Greek yogurt, sweet potatoes, butternut squash and most other fruits and veggies. He hasn't seemed too interested in pasta, but he did gobble up some chicken spaghetti the other day. It was the Pioneer Woman's recipe... who doesn't love it?! Caleb drinks all of his milk and water from his Honey Bear straw cups now! 

Sleeping: Caleb goes to sleep around 7:30-8:00pm and wakes up around 6:30-7:00am. Taking two naps is starting to become rare. When he does, he usually naps 30-60 minutes each time. If he only naps in the afternoon, that nap is usually 1-2 hours. 

His days: Caleb is a busy little guy. He goes to Mother's Day Out three times each week. When he's not there, he stays busy with speech therapy, occupational therapy, physical therapy, story time at the library, play dates, and lots of play time at home.  

Highlights of the last three months: Caleb's speech is getting more clear and intentional. His favorite thing to say is still "Dada"... even when Daddy isn't home. He says "Mama" every now and then. The ladies in the nursery last Sunday evening told me that Caleb said "Bye bye" when his friend left. 

He's starting to sign a few words. He sometimes signs "eat" and "more" before and during meals/snacks. He was signing "celebrate" a lot, but he has switched to clapping lately. 

If we ask him "where's tummy?", he will usually pat his tummy and smile! 

Caleb is trying so hard to figure out how to crawl. He will sometimes rock from side to side and sort of propel himself forward a little bit. By doing this, he can usually move a couple feet. His biggest motivators are toys and Daddy's pizza. Rolling is still his primary mode of independent mobility.

Tripp Trapp

One of the recommendations from the speech-language pathologist in the oral placement therapy program that we do with Caleb is for him to have really good posture when he eats. The chair should be adjustable (to grow with the child) and "should encourage a 90 degree angle in his pelvis, knees, ankles, and chin". The high chair we've been using doesn't really meet any of the criteria dictated by the SLP. And of course, the high chairs that do seem to encourage the best posture are super EXPENSIVE!

Considering that he had a feeding tube this time last year, I'm beyond thrilled that we've packed away the bottles and fully made the transition to straw cups! But there's always room for improvement. After talking with Caleb's two SLPs and some other parents of kids with Down syndrome, I decided a couple weeks ago that it was time to get a new chair. I did a lot of research online, and the ones I thought would work best for Caleb were priced between $200 and $400. I didn't want to spend that much, and my CPA husband really didn't want to spend that much. One afternoon, I decided to check Craigslist and found one of my top choices for sale here in OKC! The Stokke Tripp Trapp! The seller had the chair, the baby set and the cushion for $100. They were about a year old and barely used. If I bought all of that new, it would be $365 plus tax! After a little negotiating and then the seller dropping the price after she had to reschedule the delivery/pick-up, I ended up paying $70!

I haven't noticed a huge difference yet on how Caleb is eating, but I do think he seems a little more focused. I also like that we're able to push the chair right up to our table, so he really can "join" us at the table for dinner. And of course, he looks super cute sitting in the new chair!

iPhone pics... sorry for the poor quality!

Christmas

Brad and I celebrated our own little family Christmas with Caleb the morning of Christmas Eve. We didn't go overboard with gifts for him, since he just had a birthday a couple months ago. He got a couple new toys, some clothes, books, and few other necessities.  I usually don't put Christmas gifts in bags, but I did a couple for him because he loves pulling out the tissue paper so much. Rather than Christmas gifts for each other, Brad and I ordered some new furniture for our living room. It'll hopefully be in sometime in February.

We celebrated with Brad's immediate family on Christmas Eve night and with some of Brad's extended family on Christmas Day.

We got together with my family during the New Year's holiday to celebrate our belated Christmas. Caleb did wear something besides pajamas while he was at my parents' house, but you wouldn't know it from looking at the photos below!