This morning, we woke up to some odd sounds and shuffling coming from Alexander’s bedroom. When I opened the door to see what was going on, I found I couldn’t open the door fully– because he had emptied his dresser of almost all of its contents. To make matters more…well, powdered, he covered his entire handiwork with a thick coating of baby powder from his diaper station. Lest he be considered messy, he tried to “clean up” by jamming a good deal of clean diapers into all available crevices of his diaper pail. Though we were at a loss for words, he was pretty clear in telling us, “All done night night! Hungry!”

Once again, I find myself wondering where the time went and realizing that months have passed since my last post. I would write something more witty if it wasn’t for the fact that these past few months have been hard. It’s tough enough parenting a toddler full of opinions and energy;  adding in the layers of therapeutic catch-up and development just makes for one cocktail of craziness, shaken AND stirred.

Alexander continues to progress at an incredible rate, though his articulation of his rapidly growing vocabulary is still a challenge. Just tonight during dessert, he pointed to his ice cream spoon and attempted to say “demitasse spoon.” I know, I know, why are we teaching him this?!?! The truth is, as one would expect from any little kid, he’s a sponge for new words and labels. It’s amazing to watch his brain process somewhat complex concepts and start to connect the dots cognitively from idea to idea.

Even with his ambitious cognitive and language progression, we’re still easing him into the world of all things sensory. If you can believe it, it’s taken almost a full year of slow introduction and repeated play for him to enjoy certain textures, like pom poms used for crafting. Last year at this time, he’d maybe stick a finger into a bucket of them in order to quickly extract a hidden toy– it was clear by his face though that he was uncomfortable. Earlier this week, I pulled out the ol’ shoebox of pom poms, a few measuring spoons, and some kitchen tongs to see if we could do a little fine motor skills play. (Plus, the spoons and tongs have allowed him to interact a little more comfortably.) Just for kicks, I grabbed a handful and sprinkled them on my head saying “Sprinkle sprinkle!” Much to my shock, he grabbed a handful and did the same on his own head, laughing hysterically. Words can’t describe my shock and happiness at watching my little boy come to terms with something on his own.

Similarly, we’ve had the same struggle with teaching Alexander how to use a straw. Given his extensive cleft at birth, he never had the opportunity to nurse, hence he never really understood how to create suction. After almost a full year of trying at his pace, he picked up his trainer cup with straw one day last week and started sucking away. The whole process has been incredible frustrating, as his mouth and lip muscles need to be strengthened so he can suck, but then by sucking, they will get stronger for speaking. And trying to explain or demonstrate to a toddler how suction works is as effective as banging your head against a wall repeatedly. Nonetheless, our little guy figured things out, and he’s now loving his newfound universe of silly straws, juice boxes, and fruit pouches.

Even with all the therapeutic work going on through our therapists and our own efforts, we are also enjoying watching Alexander reach milestones of the “typically developing toddler.” (Ha, I love that phrase– as if there’s one toddler out there who sets the curve!) This past weekend, Alexander said goodbye to his crib and enthusiastically cheered for his big kid bed. Though there’s still a fair bit of “wistful reminiscing” for his beloved baby crib (read: naptime howling), he seems to be excited about his growing independence. That combined with his (again) overnight discovery of how to open doors is keeping us on our toes.

Enjoying his big kid bed with his beloved Little Benny and Little Val-tine

While we know that Alexander’s powdery adventures will not be the last of his mischief as he fully embraces the toddler lifestyle, I can’t help but be grateful to see our little boy healthy, happy, and full of life.

Recently, mealtime at our home is starting to resemble a scene from Oliver Twist.

“More. More, please?” “More hummus.” “More yogurt.” “More omlette.” Just “More.”

Though it is quite exhausting, our son has happily graduated to Real People Food (TM). We were understandably concerned about transitioning our little man from his baby food purees to new textures as soon as we got the green light from our surgeon. Considering all of his food was in liquid form until about a month ago, Alexander has warmed up to table food with incredible ease! We made a few attempts with soft foods during Alexander’s post-surgical healing to see if he would try to self-feed with his hands. His response was usually to try and use his spoon to scoop whatever was on his tray.  We had our nutritionist, occupational therapist, and feeding therapist at the ready, and we counted down the days to a normal family meal.

You can imagine our surprise when a few weeks ago during lunchtime, Alexander looked at the falafal and tabbouleh on my plate– then back to his pureed turkey/sweet potato mash. He pointed his spoon at my plate, and tried saying “More.” At that point, the floodgate was opened. I figured though it was a little early for solids, I’d give the softer foods a try because he was so eager. He immediately ate most of my lunch, and then finished off his. I decided to continue introducing new foods to him, and now he’s expanded his new little palate to everything from eggs benedict to baked tilapia and quinoa.

My compliments to the chef!

Since then, Alexander has yet to refuse a food. I’m sure a good chunk of his enthusiasm is the result of novelty and sheer excitement of trying new flavors, textures, and smells. It feels rather surreal to sit down to dinner with Brian, Alexander, and I all eating the same thing at the same time. Though we’re still waiting to give him steak (ha!), he devoured almost a quarter of my banzai burger at Red Robin for his birthday dinner.  For those of you who’ve shared a meal with us recently, you’ll attest to the passionate “More!” Alexander conveys, mostly through signing, for more of whatever food we’re willing to share. He enjoyed an entire slice of ice cream cake for his birthday, then longingly looked over at the remainder of my piece. It’s almost comical to watch him– while we don’t want him to get sick from overeating, I have NO IDEA where he’s putting it all. Clearly, this boy is making up for lost time and is in a growth spurt.

As far as feeding himself, Alexander is making great strides in utensil use. He’s able to scoop softer foods from a bowl on his own, and he makes short work of his beloved greek yogurt. We’re still working on him loading his fork, but he’s trying more and more to eat like a big kid. Watching him enthusiastically eating a forkful of salad– and returning it to us empty with the request for “More!” is really exciting.  (In all fairness though, he has tried removing green beans from his fork a number of times and pretending like he’s chewing them, but he’s not very good at hiding them on his tray!) Though I’m sure we’ll have many dining-related challenges ahead, for now, it’s all “food, glorious food” to him!

It feels as though this day would take forever. Finally… after months and months of continually washing bibs for Alexander, our little man can finally show off his adorable toddler clothes in their full glory. If you do a quick peruse through the photos shown on HSWT, you’ll notice that in almost every picture, Alexander is sporting a terry cloth bib over his clothing. So why this, and why now?

The good news, which we found out last week during Alexander’s post-operative appointment, is that his hard palate repair was successful and is continuing to heal nicely. It’ll take some time for all his tissue to heal and fill in all the gaps, but the sutures have held.  Our surgeon was thrilled to hear that not only is Alexander eating well, but that he’s gained an incredible pound during the month of surgery! (Normally, cleft kids have an oral aversion after the surgery, which is understandable considering all the pain and swelling in the roof of their mouth–which results in a long hospital stay and significant weight loss). To add to the good news, Alexander has continued to try vocalizing, which is often delayed from post-surgery trauma.  Our speech therapist was just thrilled when Alexander began mimicking some fairly complex words the week after surgery!

But why the bib? Well, as you might guess, before Alexander’s multiple surgeries, he didn’t really know how to handle the saliva– so rather than swallow it, it just sorta flowed out of his cleft. At the risk of being too graphic, the combination of saliva plus everything that came out of his nasal cavity (earlier open to his mouth) was enough to keep a bib on Alexander full-time. Also, after each surgery, as his mouth healed he was the drool king. Alexander’s speech therapist said that as his mouth muscles got stronger, he’d be able to start to suction and control his saliva, and with that would come the ability to control airflow and articulation.  True to her word, a few days after Alexander’s last surgery, his normal multiple bib changes reduced to one a day, and even then it was pretty dry. Finally, I just pulled the plug on bibs, and he now roams free and mostly drool-less.

Now, our little man is truly starting to look and act like a toddler. Brian took him for a haircut, and they both returned with smiles– Brian proudly commenting that they were able to use clippers this time–  “He’s a 5!” (Believe it or not, getting near Alexander’s face with a buzzing instrument was met with significant trepidation last time…)  Though he’s still a skinny guy (his waist is 12 months still), he’s getting longer and in need of 18 month length– I am SO grateful that a lot of little boy clothing comes with adjustable waist buttons!  Though we still think he’s growing fast, we’ve been warned that with the full repair, he’ll be eating like crazy and will be growing even faster. I’m trying not to purchase clothing for him in any one size, as it seems as though he’s sprouting up like crazy.  Although the surgeon said to keep with a soft/pureed diet for another week, I caved and let him have some of my falafal last week. That, as you might guess, has set off his awareness that there is more to meals than pureed slurry. Even today, it wasn’t “more yogurt” he was asking for, but for some of my own chicken stir fry!

As we rapidly approach Alexander’s birthday on the 11th, it’s just amazing to watch how quickly he’s picking up more words, both in signs and in spoken language. He tries to say “I love you” and is quite good at identifying the items in our home not to be picked up by pointing and saying “No no no!”– all while smiling.  Just yesterday, during a therapy session, I watched him proudly parrot some great animal sounds; it almost made me sniffle.  It’s just incredible to watch a little boy who was so limited in his communication  blossom and delight in his own accomplishment.

At the risk of sounding too much like Pollyanna, the process isn’t all sunshine and roses. A big challenge as Alexander learns to speak is getting him to articulate loudly and clearly– apparently, it’s fairly common for children with delayed speech to almost whisper when talking because they’re “trying out” new sounds. Though he’s got plenty of loud “la’s and na’s,” you need to have an ear close by to hear him sing along to familiar tunes.  Similarly, though he has tested fine for sensory processing, we’re trying to increase his sensory tolerance, especially in light of all the new textures he’ll encounter in food. So far, we’ve played with sand, pompoms, play dough, and finger paints, and he’s slowly warming up to varying textures in rapid succession.

Though we are growing increasingly exhausted every night (I know, welcome to parenthood, right?), we are so grateful that Alexander is growing by leaps and bounds.  After all of the medical appointments, surgeries, consultations, and continued therapy sessions, there is nothing better that watching our little man running around with his artist’s smock on asking for more crayons. All we have ever wanted for him is the chance to be a rollicking toddler, and he certainly seems to be doing that with fervor! Onward and upward… to your 2nd birthday! We will greatly celebrate, and we continue to thank you all for your support and love in helping our little man truly flourish!

And now, the adorable Alexander photos you’re waiting for….

Loving his new Adirondack chair. When we ask him to smile, we say “Say lactose!”

The young artist at work

Occupy living room!

The little man’s 5-man/bivalve luge team (which also serves as his mama’s daily exercise

They say that the third time’s a charm, but I don’t know if that phrase is relevant to surgery. Our experience started with a “thud” instead of a “bang.”

He’s way too excited considering how early it is in the morning… (note the coaster thief in action)

Thankfully, the surgical team reassigned Alexander’s surgery for early morning instead of his original afternoon slot.  You can only imagine how difficult it would be to explain to a two year old why they can’t eat anything for half a day. Even though Alexander was up much earlier than normal and still in his dinosaur jammies, he made a brief attempt of his Plea For Yogurt(tm) until I was able to distract him and get him bundled and into the car.

Alexander’s surgery was once again at Comer, so we were well-prepared to make the brief hike from the World’s Smallest Waiting Room (that doesn’t allow food) to the incredibly spacious and beautiful Sky Lobby across the street. Because of the high incidence of influenza, the waiting room was stripped clean of toys; I really felt for the families we saw later in the day with children camped out for hours in this small, cramped space.  With Mickey Mouse Clubhouse on full-blast, Alexander proceeded to expend his toddler-ific morning energy happily shrieking and running around. We took turns following closely behind our little man as he wobbled around the waiting room.  Brian and I were both all-smiles, and I thought to myself, “We’ve got this one.”  For any of you parents out there, you know that is the exact thing to think when you want all heck to break loose.

As if Alexander could read our thoughts, he toddled over to a kid’s chair, sat in it, and faster than you can say “thud,” little man did a face plant into the carpet. Almost like a record scratch, the entire waiting room’s collective head turned to our little corner and watched as we scraped our wailing little son off the floor.  Timing couldn’t be any more perfect, as the pre-op nurse called our names to come back. I swear I could almost hear her say “Parents of the Year Kelly family?” as we tried to console our now hysterical son and cart him into the surgical area. So just like that, we went from a smiley, happy boy to a crying toddler with a nasty, bleeding rug burn on his forehead and a slightly cut lip.

For as traumatizing as his little fall was, that was just about it for the morning’s negative surprises. After we cleaned Alexander’s scrapes up and settled him down, within minutes the anesthesia team and the remainder of the Surgical Medical Personnel Parade took place, and our little guy once again unwillingly donned his gown. I think we gained a little “hospital cred” when I specifically requested the koalas in spaceships gown– they originally pulled out something else, and I knew it would be too big.  Handing Alexander over to the team at The Red Line didn’t get any easier. As you might guess, the hand-off has to be fast, as the anesthesia team tries to minimize the trauma/fear of separation. This was the first (and hopefully last) time that I quickly handed Alexander over to the doctor and walked away; it really is a painful feeling to hear your child wailing and screaming “Lala!” as you make a quick exit.

We immediately went to the Sky Lobby across the street, had breakfast, and settled in for a long wait. When we asked our surgeon about approximate surgical time, he indicated that this was going to be the long one, and that we should assume at least three hours, but with set-up, anesthesia, and closing, that it would might be even longer. With that in mind, you can understand how shocked we were to get a call maybe an hour and a half into our wait with news from the OR that they were wrapping up.

We understandably were a little panicked during our walk back to the Comer waiting room, but our surgeon’s smile when he came through the  door was immediate relief. After the obligatory handshake, he gave us the incredible news that “everything just sorta flowed and came together” making the surgery unbelievably quick.  Within a few minutes, we were whisked back into post-surgical recovery, and we got to see our sleepy little man. Alexander was a little whiny, but we could immediately tell he handled the surgery well. He wanted to sit up, much to the chagrin of the PACU (post-anesthesia care unit), and he was signing wildly (with one hand slightly immobilized with an IV board) for “more yogurt, please!”

After several hours of recovery, Food Network, and waiting for an open room (thanks to a completely influenza-booked hospital), we were transferred to a room.  Alexander renewed his request for yogurt, which was sadly not possible due to his dietary orders, and he settled into a Mickey Mouse Clubhouse-induced stupor. Brian and I were able to order up dinner trays for ourselves along with Alexander; although I wouldn’t call the hospital food gourmet by any standard, dinner that night tasted incredible– mostly a result of being starving and somewhat exhausted. Brian eventually called it a night and headed home, and the kidlet and I eased into some more Food Network and a rather uncomfortable futon. (Apparently, Alexander either really likes Robert Irvine or highly dislikes HGTV. Anytime I tried switching the tv to something other than Restaurant Impossible, it was met with incredibly negative feedback. Go figure!)

Alexander continues to amaze me with just how adaptable he is, given a few things he’s unwilling to bend on. After he scarfed down his entire dinner (clear liquids, but still…), we began his normal evening routine before bed.  We said night prayers, I cleaned him up a little, turned down the lights, and handed him Kokkonisto.  Much to my surprise, Alexander sat straight up in bed and began howling, even after I turned out the lights and reduced the television volume. It wasn’t until I started making up my bed that I realized what he wanted. Alexander normally sleeps near, but not directly under some small blankets. Because he was incredibly warm, we didn’t tuck him under any blankets when he was placed in his hospital crib. I immediately pulled the pillowcase off my hospital parent pillow, and lightly placed it over his legs. He squealed, pulled it up under his chin, and made the sign for “blanket.” Immediately, he laid back clutching Kokko, turned to his side, and was snoring in minutes.

Though the night was filled with occasional cries of pain, my leaping up to find a nurse for various issues, and seemingly endless little requests for water and juice, Alexander woke up requesting (say it with me!) “more yogurt, please.”  The residents did their rounds, and our surgical team stopped by to watch Alexander demonstrate his animal noise book. (They all seemed incredibly surprised to see him sitting up, smiling, and playing away the day after his surgery.)  I visited the family lounge while he was still a little groggy in order to find some caffeine, and I ran into several other moms seeking coffee.  Later on in the morning, I walked down the hallway and heard the painful howls of their kids– and it really hit my heart. It’s hard to realize how incredibly great you have it when you’re fully consumed with the care of your child, but hearing and seeing children undergoing a similar surgery fairing far worse really puts things in perspective.

Though Alexander was more than ready to pack up his sheep and head home, we utilized an expert phlebotomist on staff to fill a few remaining adoption clinic blood tests in the morning. By the time Brian returned in late morning, the surgery team and nurses felt that Alexander was ready for discharge. We were all fairly surprised because everyone warned us to prepare for a several-day stay. Most cleft patients, we were told, suffer from extreme fever and usually refuse to eat for a day or so. Considering Alexander was begging for his favorite dairy snack minutes out of anesthesia, he was quite the unusual patient.

Incredibly, we were discharged and on our way by early afternoon. Alexander left with a ton of toy swag this time (thank you Child Life department!), and the nurses thanked us for being “reasonable parents.”  Though I’m still not quite sure what that means, I think the fact that we didn’t yell at anyone and kept our child hydrated helped out quite a bit. Though I can’t blame them given the circumstances, I saw several other parents of patients either melting down or just completely hands-off with respect to their kid’s care.

Checking out a new book from Comer upon return home from the hospital

After an uneventful ride home, Alexander ran around the livingroom in his “new” cuffs. We knew he’d have an early night– by dinnertime, he just collapsed on the floor like a limp noodle. I ran to Target to get some OTC meds for Alexander and received a text that the kid was snoring on the floor. A mere two hours later, I was the same way.

Though we still have our post-operative appointment in two weeks, it’s hard to believe that surgery is at an end for the foreseeable future. Alexander enjoyed his first Valentine’s Day at home instead of in the hospital, and we all breathed a sigh of relief to sleep in our own beds.  We can’t thank you all enough for your support, love, and well-wishes for our little guy. He’s been an incredible trooper through it all, but your support has really helped carry us.