When Tucker was in the hospital, like many families, we kept a Caringbridge page for updates. Many days I would issue the “Tucker Report” highlighting where we were and what the day had brought, his new weight, if he ate, how many bradys he’d had etc. It’s been quite a while since I wrote a good old fashioned Tucker Report. It’s totally ok if you want to skip through the report and get to the pictures. For a good snicker though, read the last two paragraphs. We’re a month away from his 2nd birthday. Holy Moly.
A Tucker Report:
- Feeding Therapy: In a word, Slow. There’s debate between doctors and therapists as to whether Tucker’s issue is sensory related or motor related. When preemies don’t eat there are usually two routes to take. 1. Speech Therapy if the problem is believed to be more of a mechanical muscle tone issue. The child might not be very verbal and has difficulty using his mouth to form words which also translates to difficulty feeding. 2. Occupational Therapy– if the problem is believed to be more sensory related. With sensory issues, the child dislikes or can’t tolerate by touch or taste, particular textures. Sensory processing issues are much deeper than “picky eater” (great post here about the difference in eating disorder vs picky eater). Tucker doesn’t overtly fit in either of these groups. He doesn’t show any overt sensory related signs and he’s very verbal and pronounces words clearly. But, sensory issues can sometimes be very subtle. So for now, his Occupational Therapist (OT) is using a sensory approach to therapy. He’s showing a little progress and we do many exercises with him before meals to get both sides of his brain to communicate to each other in the hopes that he will learn to chew all textures of foods.
- Stats: Tucker in all measurements, has now made it to his actual age growth chart (nice!). He’s in the 50th percentile for height, 25th percentile for weight and 25th percentile for head circumference for his actual age. For his adjusted age, his numbers are higher. For a reason I have never understood, the standard in the medical universe, is to stop adjusting his age at 2 years old regardless of development. I’ve never understood why preemies are supposed to magically develop faster and “catch up” by 2. I am finding though that I use this phrase less, “his adjusted age is..”.
- Development: Tucker is still tracking on his milestones and with the exception of feeding, scores within normal range for his age for all categories. This means that he scores somewhere between his adjusted age and actual age for development categories (some he scores higher and some lower). He isn’t considered delayed unless he scores below his adjusted age (which is 19 months). Feeding is his biggest developmental delay right now. He’ll continue to be watched by Early Intervention until he’s 3 years old. In terms of specialists, we’ve been discharged from most. He still sees, several times per year, a neurologist, a developmental pediatrician and an audiologist.
- Isolation: Bleh. We’re over it. Lonely. And counting down the days. But, it’s working and we are glad, RSV is rampant this year. Pediatric units all over the state are full of RSV cases.
- My Favorite Thing: At any given moment, during play, in the high chair, watching a video, building a tower etc. Tucker will stop everything, look at you and say (in hands down, the cutest voice ever), “Hug.”. It is my job, or anyone else to whom he is directing his challenge, to stop what you’re doing and give him a hug. If you are lucky, this is followed up by, “kiss.”. I could do it all day. Seriously.
- Tucker’s Favorite Things:
- Charlie Brown and Snoopy (he sometimes calls Charlie Brown, “Chuck B”-adorable)
- Gigglebellies video
- Ice Cream
- Building Towers with his Mega blocks
- The IPAD
- Books. Books. Books.
- Counting to 10
- Jack in the Box (Click here for video)
- Bouncing on his therapy ball
- Gerber cheese doodles (one of the only things he regularly chews)
- Being scared
- Hiding in plain view until you find him and say, “boo!”
As we get close to his 2nd birthday I’m weepy. When we peered at him through the isolette doors everyday I had no idea what to expect 2 years from that moment. I didn’t let myself think ahead. He amazes me. The stories I read of other preemies amaze me. These kids are so resilient. Stronger than I’ll ever be. I can’t believe he’s almost 2. The other night, I rocked him before bed (something he rarely lets me do anymore) and we were listening to his Rock-A-Bye music. The same rock n roll lullabies that we played in his crib in the hospital, so of course my mind (and heart) drifted to those early days. When he took up only a hand’s length of my chest. Now, he barely fits on my lap at all.
As I rocked and felt the even rise and fall of his chest, breathing normally and without labor, with no monitor beeps to interrupt Aerosmith, a tear slid down my cheek. At first it was just a sweet little moment, an appropriate amount of tears to mark the milestone he’s about to pass. And then I thought of all the stories I know, fellow preemies who, everyday, do exactly the things doctors said they wouldn’t do. Cue U2 lullaby, something about a beautiful day. Full on crying. Like I seriously can’t stop. I’m silent sobbing. It’s ugly. And then a little snort breaks free which startles (and wakes) Tucker. He lifts his head from my shoulder and looks at the slobbering mess that I am and immediately says, “Crib.” I don’t blame him. His mama is crazy. And overly weepy and I probably always will be at every single milestone. Lord help us when he graduates high school. This kid. He brings me immense joy. And I don’t know how I got so lucky to be his mama.
A note from the bench: Would you send prayers and good thoughts for a little one named Carter, and his family? He lives in my hometown and he will be sitting on the other side of heaven very soon. Pray for his family.