Baby Steps

He pauses, carefully considering the uneven earth beneath his feet. He steadies himself then slowly, carefully, deliberately lifts one foot and takes that first step. A grin spreads across his face and he glances up at me, clearly relishing his accomplishment and my (unabashedly giddy) claps and cheers. Another step, this one faster and less cautious, then another, and another… until he is half-running, half-falling towards me. He reaches my arms just as his balance gives way completely, and he falls into my embrace. “Good job, Zeke! You did it!” I tell him, but he is already off with some new adventure in mind. It was only a few feet really, a handful of steps, but he and I are on top of the world.

He falls a lot, gets back up, tries again. And again. And again. Sometimes he makes it several steps in a row, sometimes just one. Sometimes he lands hard and it hurts (balance and protective response-aka catching himself- do not come easily for this guy), but he is undaunted.

All the while I watch him exploring the ever-widening world around him and I am amazed at his perseverence and resiliance. Every worry I have ever had for him, every tear I have cried wondering what his future will hold fades for the moment as I am reminded again how strong he is. Some would say stubborn. I think I have said it too. This kid is going places, and he’s not letting anyone or anything stop him. Maybe he will take a different path to get there. Maybe it will take him longer, maybe it will be harder, maybe he will have to get back up more often than most. Maybe “there” won’t exactly fit our culture’s skewed definition of success. But he’ll get where he’s going, of that I am sure. One step at a time.

I wonder sometimes how much I shoud write about Zeke’s development. I waiver back and forth between wanting to keep much of his story private, and wanting to shout from the rooftops how amazingly awesome my kid is. I compromise by choosing to write mostly about our ordinary, every day lives together (because really, we are quite ordinary). I don’t want him to be defined as “that kid with Agenesis of the Corpus Callosum,” with all of the stereotypes that may entail, but I also don’t want him to ever feel that who is is anything to be ashamed of or keep hidden. In many ways I am quite facinated by the way his brain works and it’s ability to overcome tremendous challenges. Each accomplishment seems all the more amazing when I pause to consider everything it took to get there. My hope is always that people read my words, and see my pictures, and are insipred and encouraged (as I am likewise inspired and encouraged by the emails and comments I receive every week from individuals who either have ACC themselves or know someone who does), but I am also well aware that ACC can look very different for others than it does for my son. We are blessed. And I don’t ever take that for granted or lightly. Ever.

With that being said, I do want to include a bit of an update. I know how valuable it has been to me as a mother to read about other families on this journey with us, and I think it is important to include some of our struggles in this story along with the overwhelming good. At 17 months, Zeke is doing quite well. He is eligible for Arkansas’s early intervention program, which provides him with two physical therapy sessions per week. At PT he is continuing to work on skills like transitioning from sitting to standing, balance, increasing muscle tone, increasing his protective response, and beginning to walk. (He wears small foot braces that are basically inserts that fit into he shoes to help stabilize his ankles) He is making slow, but very steady progress in all of these areas. He seems to have a somewhat decreased awareness of his left side, probably related to his ACC, but it is more noticeable some times than others. For example, he has more difficulty catching himself if he falls to the left, and he occaisionally seems to forget about objects in his left hand. He also seems to have a somewhat increased tolerance to pain, but that may just be his stubborness! Although he picked up his first couple of words pretty early on (mama, baba, bye-bye), his speech has plateaued at this point an he really only uses a couple of words, and even those not consistently. He has been referred by his physical therapist to be evaluated for speech and occupational therapy in addition to PT.

For every thing that he struggles with though, there are so many other things that he can do. He stacks blocks, puts them in and takes them out of a bucket, gives (very slobbery) kisses, loves to share his snacks and toys, makes some pretty awesome truck noises, “dances” to music, taps out a pretty decent rhythm on his bongos or the piano, looks at picture books, chases the kitties, lights up the room with his whole-face smile, climbs, climbs some more, oh, and did I mention he climbs? 😉

But today, oh those early wobbly baby steps! They eclipse everything else. Never lose that determination, my son!

Advertisements

One.

I fall asleep at night with tiny fingers wrapped around mine through the slats of his crib (which is still right next to our bed) and wake up earlier than I would prefer to a wide-awake and smiling very hungry boy. I don’t mind too much. In just another hour, the house will be bustling with kids, and breakfast, and things-to-do today. But these few precious minutes? They are just for us, my sweet cuddly Zeke and me.

They say our kids grow up before our eyes, and it must be true because this morning when I woke up, I realized that my tiny little newborn had gone from this:

To this:

A curious, happy, on-the-go, rough-and-tumble ONE year old!

Um, when did that happen?!?

Sometimes I wish I could take a snapshot, carry it back in time and show it to a mom-to-be with an unfamiliar and scary diagnosis clouding the joy of her pregnancy, or a scared new mom with a tiny, fragile preemie in the NICU and a family at home waiting, or, a few months later, a stressed out mom still dealing with the exhausting and draining effects of post-partum anxiety. I would show my then-self a picture of Zeke’s happy, toothy smile and tell her, “I know it’s not always easy, but everything is going to be okay.” I would tell her how much joy this little guy has brought us, and what a proud and loving big brother Miles has become. I would tell her that even though Zeke’s development may not be completely typical, he is happy, and healthy and making progress every day. I would tell her how we have all grown and learned and adapted and how completely perfectly Zeke fits in with this little family of ours. Of course, there are days when I wish a future me would show up with a few snapshots and reassuring words of her own, for there are certainly still alot of unknowns. But that’s life. And if the past year has taught me anything, it is to spend less time worrying about what-ifs and maybes, and dig down deep and savor every drop of the good that is my life right now.

A bit about Zeke at one year:

Zeke is still a small little guy, just barely 16 lbs (which sounds a little more impressive when you consider that that is nearly four times what he weighed at birth!) He’s always on the go and loves to be in the middle of the action; usually tagging along with Miles and the cousins, or under Mama’s feet in the kitchen or my studio. He can dart across the room, army-crawl style, at lightning speed if he spots a stale cheerio or stray bit of cat food, and has even been pulling his knees up under himself occaisionally. He can crawl over low objects like cushions, and can kneel at a low shelf. His ability to sit unsupported has improved greatly and his primary goal now is to get himself into a sitting position by himself, and back down (without just toppling over!). The biggest challenge he is facing at the moment is his lack of fear/protective response. For instance, if he is sitting and starts to lose his balance, he will only occaisionally attempt to put down his arm and catch himself. He is improving, however, and has demonstrated that he can do it, just not consistantly.


standing at PT with Ms. Kristie

His fine motor skills are much better, and he easily uses a pincher grasp to pick up small objects. He can pick up and hold toys with both hands, put blocks into and out of a box, turn the pages of a board book, and feed himself small bits of food. He jabbers non-stop and can mimic many different sounds and expressions. He can wave and say “bye bye,” and can say “mama,” “dada” and “baba,” and he gives the sweetest, slobberiest kisses you could imagine.

Zeke loves flavor, and lots of it! He is still breastfeeding, but he is also trying new foods every day (his newest favorites are pomegranates and raspberries) and will eat just about anything, even spicy chilli and curries, and sour lemons and limes (by the slice). You would think he would be bigger than he is given his insatiable appetite, but I guess that army-crawling really burns a lot of energy…

He loves animals, being outdoors, hiking and riding in the bike trailer, looking at books with Mommy, swinging at the park, and popping bubbles, but his favorite activity ever is most definitely bathtime. The kid practically squirms right out of his clothes when he hears the water running 🙂

He’s the light of my life, and I wouldn’t trade him for the world!

Happy first birthday, Ezekiel! I love you!

Zeke

I struggle sometimes with how much to share on this space about Zeke’s diagnosis of Agenesis of the Corpus Callosum, and how it is affecting his development. When Miles was a baby, I remeber blogging nearly every month a bulleted list of the milestones he was reaching. He was always “on track” or even ahead developmentally. Looking back, those lists seem a lot less important to me now. Zeke is such a beautiful, happy baby. So vibrant. So full of smiles, and coos, and kisses… somehow writing about things he can’t do yet or things he struggles with feels like it doesn’t do justice to the amazing little boy I see when I look at him. And yet I have learned so much from, and been so encouraged by, words I have read on other blogs -especially when I was pregnant and so scared and confused. For me at least, what helped more than reading just the factual medical information about ACC was reading about how it looked in the everyday lives of children and adults with the condition and their families. Seeing pictures of children like Zeke and hearing stories about their everyday triumphs and struggles really gave me strength and peace in those first few weeks. I do hope that the story of my family that I am telling here can be an inspiration to others on this journey.

In most ways, Zeke is developing just as a baby without ACC would. He is a social butterfly, smiling and babbling at anyone he sees. He jabbers constantly, imitating sounds and repeating syllabels like “mamamama” and “babababa.” He reponds to voice tone and facial expressions and loves to try to copycat what he sees and hears (sticking out his tongue, blowing rasberries, etc…) As Zeke gets older however, we are starting to see some developmental delays. He started rolling from his belly to his back and holding his head up very early, but activities that require more muscle tone and control are coming a bit slower. At seven and a half months, he still needs support to sit upright (and only then for short intervals), and is not quite ready to roll from his back to his belly. When on his belly, he lacks the stregth to push up on his hands, so he usually just prefers to roll onto his back. He also doesn’t put weight on his feet when held up (although Stephen got him to it for a moment a week or so ago!) He has slight torticollis (keeps his head twisted to one side) although with help from physical therapy 2x per week, it has greatly improved. He is able to track with his eyes, but usually doesn’t track as well to right as the left, so follow ups on his vision will be important over the coming months and years. He is certainly making progress though, and thankfully has not had any health issues whatsoever.

I don’t see Agenesis of the Corpus Callosum when I look at Zeke, and yet it is part of our lives every day, it’s part of who he is. I don’t even think about it very often; the delayed milestones, physical therapy visits, neck stretches and core stregthening exercises we practice with him at home, and follow up visits with the neurologist and other specialists have all just become part of the fabric of our day-to-day lives along with everything else, good and bad. But every once in a while…

…when I am sorting through baby clothes -packing away little outgrown onsies and pulling out a fresh stack of hand-me-downs and I remember the first picture I took of Miles standing in this very same blue-and-green striped jumper that now fits Zeke. Sometimes I get just a little bit sad. Not because I am wanting to compare them (and I feel guilty at even the thought) or that I am in any way disappointed that it will likely be quite some time before Zeke is sitting independently or crawling, let alone standing. I get sad not because I know he is developmentally delayed, but because I know the world is starting to notice. I just want everyone to see the perfect little boy that I see when I look at him, but I am already getting questions, hearing comments: “how old did you say he was?” “I thought he was older than so and so’s baby? Isn’t her baby rolling over/sitting/crawling/pulling up?” “wasn’t Miles doing x/y/z by that age?” I get sad when I think about the difficulties Zeke will face as he grows and ventures more and more into the wide world. It can be a scary, cruel place sometimes.

But I know I can’t let myself stay there long. Right now I have a sweet 7.5 month old and three year old to take care of. There are picnics to be packed, and bubbles to be blown, and silly crayon monsters to be drawn. There are stories to be read, lego towers to build (we should probably clean up a bit when we’re done too!), and lately lots of blackberries to pick. There is LIFE to live. Of course Stephen and I are doing our best to learn as much as we can and take advantage of resources that we have available to us. We want to be prepared for the future and any situations and struggles that might arise, and I know there is still much to learn. But right now we are choosing to focus on right now, and right now is beautiful:

If you have found this blog because you’re a frantically googling mom-to-be scared silly by an “abnormal” ultrasound, or a new parent of a child with ACC, I’ve been there. I feel your pain. I hope to encourage you and hopefully give you a bit of peace about the future. Children, of all shapes and sizes and abilities, are an amazing blessing. I cannot even begin to express the joy that Ezekiel, and his big brother Miles have brought to my life.

Six Months

The day Ezekiel was born (SIX months ago next week! Where does the time go?!?) was probably the most nerve-wracking day of my life. We knew our son would be born with a congenital brain disorder- Agenesis of the Corpus Callosum- but we didn’ know what, if any associated conditions he might have, or how it might complicate his delivery. Add to that the fact that he decided to make his entrance five weeks earlier than expected, and you can imagine that I was quite a mess! Much of my memory of the day is a blur, but the one moment that is etched in my mind was the few precious seconds I got to hold him before he was whisked away to the NICU. I have never been more terrified in my life, but the moment I looked into those deep blue eyes I knew: everything was going to be okay. There was still so much I didn’t know at the time, and really still don’t know, but I just knew that this fiesty little boy was going to be be okay.

Agenesis of the Corpus Callosum is such a strange disorder- the way it affects some so mildly they would never know they were missing an entire structure of the brain but for some MRI images while others battle difficult developmental, social, and cognitive challenges their entire lives. I try to look at Zeke and just see my little boy, but it’s hard not to wonder what challenges may lie ahead for him. I try to avoid comparing him to what I remember Miles doing at six months, or what other babies his age are doing, but at the same time, I want to recognize any potential areas where he may need extra support now, while he is still young. Like I said, there is still so much we don’t know…

But what I do know is that at 6 months old, Ezekiel is a happy, vibrant, amazing little boy. His smiles, giggles and coos melt the hearts of everyone who knows him (including, and especially, his Mama!) He loves snuggling, listening to music, playing with different textured fabrics, putting everything into his mouth, and he absolutely adores his big brother. His biggest smiles are always reserved for Miles, and his face lights up anytime brother enters the room. Yes, he seems to be slightly delayed reaching a few of the developmental milestones, but he is also learning new things and making progress daily. He is going to physical therapy two times per week where his therapist is working with him on things like rolling over (he can roll belly to back, but not the other way just yet. Close though!), keeping his head in midline (he likes to keep it cocked to the left), reaching out to grasp toys, and strengthening his overall muscle tone.

What joy this litte guy has brought to our lives!


(Miles thought he needed a hat!)

The next step…

We took Ezekiel to Little Rock last Thursday for his MRI (and had a great time on our little “mini-vacation!) and to his first neurologist visit today. His official diagnosis is “Complete Agenesis of the Corpus Callosum without other abnormalities.” It was what we were expecting, based on the many ultrasounds he has had. But even though it was what we were expecting to hear, it was still a huge relief to finally have confirmation that no other abnormalities were seen. So now we can breathe a little easier, moving forward with the information we have.

So what happens next? The neurologist examined Zeke very thoroughly, checking everything from the way he focuses and tracks objects with his eyes, responds to sounds and lights and other stimuli, moves his body… She confirmed that he seems to be doing very well, but had a few minor concerns that she wants to follow up on. She has referred us to an opthamologist to more thoroughly evaluate his vision, and has recommended that we begin physical therapy with him (he tends to keep his fists tightly clenched much of the time, although overall his muscle tone appears to be very good). I have also been looking into Arkansas’s early intervention program because I know how important it can be to get an early start with any therapies he may need.
Most importantly though, we will keep doing what we have been doing: loving our sweet baby boy, marvelling over his every smile and coo, soaking up those sleepy, cuddlely moments in the rocking chair, and counting our many blessings.

Ezekiel update

In some ways it’s hard to believe Ezekiel will soon be three months old already, but in other ways I can barely remember a time when he wasn’t part of my life. Isn’t it strange the way time works like that?

I haven’t updated the blog about his health and development lately, for several reasons. Life with a toddler and new baby is crazy enough on it’s own, but throw the holidays, Stephen’s new work/school schedule, and a difficult and unexpected struggle with post-partum depression/anxiety into the mix and a lot of things start to fall behind. But slowly, steadily, surely, I am finding a new balance. And as tough as some things have been, I want to be sure I remember how incredibly good my life is right now as well.

With all the worry and anxiety we went through before Zeke’s birth, I am very happy and relieved to say that he is doing amazingly well so far. I know we have yet to learn what challenges he may face as he contiues to grow and develop, but it seems that for now, he is exceeding everyone’s expectations. At his recent pediatrician visit, the doctor commented that if he hadn’t seen the images of Zeke’s brain, he would have abolutely no reason to think he wasn’t a typical two-month old child. Every parent gets excited as their baby reaches each new milestone- I know How giddy I got when Miles would do something new- but the feeling is tenfold with Zeke. Its like a huge weight is lifted from my chest every time he does something that we were told he may struggle with. He nursed wonderfully from the start (and is now nearly 9 pounds!), holds my gaze and smiles, grasps objects, rolls over, holds his head up and looks around the room, responds to voices and music, makes the most precious little coos and babbles… all this right on track despite the fact tht he was also born 5 weeks early. He is also super cuddly and affectionate, has managed to keep most of his hair (minus a thin strip around the back from rubbing when he lays down), and it looks like he is going to be another blue eyed boy! He’s just amazing 🙂

He does have one more test scheduled, his MRI, on Feb 9th in Little Rock. It was a big hassle to get it scheduled, but we were finally able to. I guess the fact that nobody is in a hurry to get it done must mean that his doctors are not terribly worried at this point. I think it is mainly to confirm his “official” diagnosis. He will have another follow up with a pediatric neurologist after the MRI. At this point I am feeling very optomistic!

Here are a few pictures of my miracle baby:

(I thought I had more… there must be some still in on my camera. I’ll add more when I get a chance.)

First checkup, and some good news!

Zeke has been home for one week now, and had his first checkup today. We learned that his chromosome tests finally came back and they are completely normal!! What does that mean? It means that his ACC is not genetic (which is good because it rules out many potential complications) and that the likelyhood of us having another child with ACC, should we choose to add to our family in the future, is extremely low. Our pediatrician also set up our referral to the pediatric nuerologist in Little Rock for Zeke’s MRI, which should happen in the next week or two.

Zeke is doing very well. He’s up to 6 lb 5 ounces now, so he is packing on the weight! Although at nearly one month old, he is still smaller than the average newborn 🙂 He has started to become much more alert the past couple of days, looking around and holding his head up for a couple of seconds at a time. And he isn’t waking up quite as frequently at night! He is such a cuddle bug when he is awake, and I am soaking it up all I can. I love this little guy so much!

I was really relieved to learn he has gained so much weight because we have been struggling a bit with breastfeeding. He got so used to taking breastmilk from a bottle while he was in the NICU that the transition to nursing once he came home as not gone as quickly/smoothly as I would have liked. But we are making progress. And he is gaining weight, which means we must be doing something right! We are down to pumping/bottle feeding just 2-3 times a day now, and nursing the rest of the time.

Miles is glad to have baby brother (and Mama!) home too. I thought the novelty of a new baby would have worn out for him by now, but he just adores Zeke. If there is one plus side to the bottle feeding, it is that Miles can help feed the baby. It is so sweet to finally see them together 🙂