It's a... blog!: Cheese & Thank You

Ayden loves the camera, and I believe it's a reciprocal relationship. We certainly have a lot of good pictures documenting almost every day of Ayden's life! Occasionally, Bryan and I will come up with something worth framing (Thank God for digital cameras!), but the best pictures have come from our photo sessions with my friend, Jordan. Our most recent family photographs came from a walk through Centennial Park. I thought the boys did exceptionally well for so many hours and so many pictures (over 800!) on such a hot morning. Ayden has learned to say "cheese" for the camera, but if you don't catch him at that moment, you are pretty much out of luck on getting a grin and will have to capture something more candid instead. Ayden especially liked sitting on the swings and climbing in the trees. You will see some of those pictures in this post, as well as past (like here and here) and future ones as well.

Posing for the Camera??

Bryan and I were pretty determined that Ayden go into this surgery with a decent amount of oral feeding under his belt. We knew that only a few weeks wouldn't be enough time for feeding by mouth to Ayden's normal. Now that it's been MONTHS, we feel he's been given enough practice and routine for him to pick back up where he left off. We are, however, realistic that feeding won't come immediately. Having chest tubes is very painful, and drinking and eating can cause additional pain. The good thing is that Ayden still drinks a formula, so if we can at least get him to drink, he can consume calories that way. The interesting part will come after Ayden begins eating and drinking. At that point, we will discover whether or not Ayden has chylous effusions, as he did last time. Chylothorax requires that he be put on a low fat diet, and healing takes weeks. That healing doesn't all have to be while in the hospital; his chest tube output will be a big determining factor in his length of stay. His primary cardiologist believes that we will see the chylothorax again; his surgeon is not so sure because the surgery affects a different part of the body. We'll know soon enough.

In the pictures above, you can see that Ayden has begun biting and chewing. In the righthand picture, he is even pointing out how one must chew on the sides of one's mouth. (You can tell he has been taught that!) In the past, Ayden has been quick to spit out anything that breaks off into his mouth, but in feeding therapy last week, he actually chewed AND swallowed some food. It was such an amazing moment for both his therapist and me. These days it's not unusual for Ayden to ask for "cheese" (puffs) or pizza or (tomato) "sauce." He's even asked for more food, and I can't explain to you enough how big that is for him. Over the past two years, he has eaten because we have wanted him to; to see him eat because he wants to is such a gift for all of us.

"CeeCee," "Boy," Ayen," and "G"

Ayden's growing cognitive and vocal skills are impressive. He can tell you when a room is light or dark ("ooh, dart" is one of my favorite things that he says), if something is heavy to carry, or if someone is sad (primarily his brother). He has begun to tell us when he pees or has a bowel movement ("stinky"), so he is showing us he is ready for potty training (after hospital diapers, of course!). Ayden is working on his manners; he knows how to say "please," and he can say "thank you" and "welcome," but he doesn't quite comprehend their correct order right now. (He sometimes tells us "welcome" when he should be saying "thank you," or he will tell us both "thank you" and "welcome.") He's really into working puzzles right now, and he can complete them fairly quickly. He is learning shapes, but he seems to struggle with colors... either that or he is playing like he doesn't understand, which is a strong possibility with our little jokester! He also recognizes people in person or in pictures and calls them by name. I enjoy hearing Ayden talk. Not only is it awesome to be able to communicate easier and to hear how much he has learned, but his voice is so sweet, so perfect. I have begun to understand why there are boys' choirs; there is something so beautiful and crystal about their small voices.

Ayden also uses that voice to sing parts of his favorites songs. And, of course, if there is singing, there is also dancing. One of my favorite things to do with Ayden is dancing in the car. Ayden is sort of hooked on "Determinate" by Lemonade Mouth. The song has a slow beginning, and I'll hear my son in the backseat ask me, "Ready?" In other words, "Mama, are you ready to rock out after the song pauses and breaks into fast-paced music?" After the pause, we both jam. He looks like he is head banging at first, and then he calms into arm and leg movements, and he'll slow it down to make sure that he sings the part he knows: "I know I, I know I, I know I gotta do it..." I love some of the lyrics because they make me think about Ayden's perseverance in this world. They tell him, "You gotta turn the world into your dance floor. Determinate." I like the idea of making the best of things, of turning life's struggles into triumphs, of looking up at our Lord and telling him, "With you, I can do anything." Ayden has been dancing for two years, and I expect to continue to see those moves grow in the many years to follow.

So, before I continue on the many fun developments of our firstborn, I'm sure you are asking, "Allison, how are you doing?" I've told people in the past weeks that I was chanting to myself, "Fear is not of the Lord. Fear is not of the Lord..." When I realized that the words weren't helping, I began to think back to what worked for me for the first two surgeries: "Ayden needs this surgery to survive; the procedure is a necessity." Yeah, that didn't really help either. I will tell you, however, that as the day is quickly approaching, I am finding myself more peaceful about the ordeal. I know that feeling is God holding my hand... and Ayden's heart. I wish Ayden didn't have to go through the pains involved with the surgeries, but I know that he is going to love life on the other side. He will get to go to school; he can play with other children; he can go to church; he can run around without us following him with sanitizing wipes; he can go to Clemson games. We can all see our friends and family. I'm not sure we'll ever be "out of the woods" with Ayden since his body operates on half the physical heart that most of us have, but at least he has the opportunity to explore the vastness of the world and its experiences. What a fantastic blessing! There was a day that children with his condition didn't make it past a couple of weeks; Ayden could have many years!

When we meet you all on the other side of this craziness, Ayden will still be learning all the things he has been learning, like putting on his clothes (he put his pants on by himself this week!), driving his Power Wheel truck, and playing golf... and then he'll learn so much more in the years to come! Click below to see some fun pictures!