The Stuff of the Day

A little over a year ago, we weren't even sure that our baby boy would survive his first surgery, let alone a cardiac arrest, but God stepped in and gave him the strength and stubbornness to persevere. Now look at him:

 Age: 15 months

Height: 30.5 inches         Percentile: 25-35

Weight: 22 pounds         Percentile: 10-25

At the pediatrician's office on July 22nd (I know. I know. I'm way behind in posting!), we all marveled at Ayden's overall growth. His height and weight percentiles are the highest they have ever been, and he's accomplished significant milestones, such as crawling. If Ayden didn't have a feeding tube, one would probably never know that he had undergone two open heart surgeries and an ECMO connection.

I texted Bryan on June 28th that Ayden had gotten into the crawling position twice that afternoon (he skipped army crawling; as I'm told, I did the same); we immediately began preparations for a baby on the move. We acted none too soon. Ayden has always been a busy baby; it's just that now he can get places and get into more things. (Apparently, we didn't do the greatest job with baby safety: He got into an ant house-- remember the ants?-- and I had to call poison control. Lovely.) He especially enjoys crawling to the kitchen and the bathroom. What's cooler than opening and closing cabinets and doors, pulling up rugs, playing with door stops, or taking things off the fridge?!? He's lost interest in most of his toys in favor of his movement and the exploration crawling offers.

Ayden has also begun pulling up on objects to get into the kneeling position. He has discovered that he enjoys playing his piano that way and that he can play a much more successful peek-a-boo.

 

 

 

Ayden isn't in favor of standing at the moment. He screams in physical therapy if Ms. Kristin tries to get him to do it. As with every other "step" (i.e. rolling over, sitting up, crawling), Ayden will have to realize that standing has a purpose for him. Occasionally, Bryan can get him to stand to play with the window blinds... it's a start.

My water table sits on the ground until I learn to stand.

 

 

Ayden has accomplished nine of the eleven original occupational goals; he has yet to actually eat the things he brings to his mouth, but he can put a spoon or food items to his mouth. (From an occupational therapy standpoint, he has completed all of the goals.) Ayden's fine motor skills are appropriate for his age. At this point, he attends occupational therapy in preparation for the setbacks of his third surgery (in an ideal world, coming next spring or summer).

Bryan has been teaching Ayden to throw overhand. He has gotten quite good. He was already an expert ball trapper. The problem with teaching one's child to throw a ball is that he has difficulty distinguishing between throwing a ball and throwing other toys. I spend some of our time together dodging toys and reprimanding Ayden for throwing them.

One of Ayden's most recent favorite activities is taking apart the things we build with his MegaBlocks. He is very methodical about pulling each piece apart. He has also learned to pull apart a marker from its cap... it's a bit messy, but he gets so proud of himself, and I figure it will come off his hands and clothes eventually. Ayden is able to use that same marker to scribble; the next step is straight lines. His OT, Ms. Julie, has also begun teaching him to unscrew caps or tops from bottles, etc.... I can already envision the mess!

Ayden has made significant progress with his feeding. He now brings the sippy cup to his mouth, and he bites on it enough to get small amounts of liquid (usually water), which he either swallows or spits out. He especially enjoys feeding me, so we take turns feeding each other with lots of clapping in between. Ayden thrives off of verbal encouragement and clapping. One can tell that eating or tasting some things is difficult for him, but he tries really hard to overcome gagging or fears if one will cheer him on during the process. I can get partial spoonfuls of food in his mouth, and he bites on cookies. He isn't eating enough to constitute anything (his time tolerance is also short), but his willingness to try has shown vast improvement. He is at the stage now where he has some sensory issues he has to overcome, which will only happen with practice and time.

Beef jerky!

 

 

Our little man enjoys giving people high fives (Uncle Phil started that fun!), sticking his pointer finger out for us to return the favor (think E.T.), and handing us objects-- sometimes imaginary ones-- so we will say "thank you." He still loves books; his favorites continue to be flap books and sound books; he hasn't been as interested in touch and feel, and he doesn't really have the patience anymore for children's books (sad!). He likes looking through photo albums... or maybe he just likes flipping the pages. He continues to dance to music, and he will occasionally drum to it as well. Nothing seems to replace Phineas & Ferb or Mickey Mouse Clubhouse, but he stays pretty still to watch Good Luck, Charlie. (It's gotta be the baby Charlie, right? Or maybe it's Bridgit Mendler? She is, after all, in the film, Lemonade Mouth, which continues to be one of A's faves.) If you will remember, Ayden loved putting things in containers, which he still enjoys, but he has taken a step further and transfers the objects from one place to the next and then back again.

Well, it has a hole like a cup!

 

 

We all managed to avoid illness over the winter months. (Praise the Lord!) However, Ayden is on his second summer cold. (He probably got the first one from me; I don't know how he landed this one!) This cold has brought more difficult nights for all of us, and the days are filled with a snotty nose. Thank goodness for grape Boogie Wipes! Not only do they smell good, but Ayden must think they taste pretty good as well since he keeps licking the wipe! (And, yes, I've tried to give him grape-flavored foods. Yeah. Not the same apparently.)

The summer has also brought lots of fun activities for Ayden. He has gotten to spend time with his buddy Jude; they hung out at my aunt and uncle's pool. At first, Jude wasn't sure what to think of the bright sun and new surroundings, but he soon realized that jumping to his daddy in the water and moving around on the Bahama landing could be great!

Ayden and Jude have also played at our house. Ayden spent some time crawling after Jude but realized that Jude was a few months ahead of him in practice and gave up in favor of applause from Ms. Diana for accomplishing other feats. Eventually the two boys caught up with each other, and Ayden began stealing toys from Jude. Sound familiar? Retribution for early days? Of course, Diana and I emphasized sharing, and the boys did just that! They began handing each other the toys. I only wish they could play more often.

We'll stay still for the picture but only because we want to watch the tv.

And... that was your opportunity. We're on the move again.

MOM, I'm not shoving Jude OR trying to kiss him!

Mine!

Okay. I'll share.

Ayden recently met some of my former students, Jessi and Casey, and Casey's mom, Ms. Lisa. He enjoyed playing with the three of them at the park. They entertained him with blowing bubbles, stacking cups, and playing with his insect finger puppets. I was really touched by how much they wanted to see Ayden, the hoops they were willing to jump through to do so, and the extent to which they enjoyed him. So sweet!

 

 

 

 

So what's next? Well, Ayden has a cardiology appointment fast approaching, and we will be once again weaning his Lasix (diuretic). With agreement from his pediatrician, we have already begun weaning his Nexium for his reflux. He will continue to go to OT, PT, and FT. We are especially hopeful that his feeding will continue to progress quickly, though his cold is certainly holding him up. Maybe we can fit a few more pool days in before it gets too cold.

My dad is the best!

 

Did you see what I did? Why aren't you clapping?