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.

As the snow continues to pile up in our driveway and our village’s salt supply continues to dwindle, our family is buckling down for perhaps the biggest squall this year. No, I’m not talking about the next phase of the polar vortex– I’m referring to Alexander’s final round of surgery coming up this Wednesday.

Alexander embarks on a one-player adaptation of the game Hot Lava.

Though we’re not panicked about the surgery itself, we have been warned that recovery this time is going to be much more involved (especially because he’s no longer an immobile little baby). The surgical team will be doing a complete repair of his hard palate, which means he’ll be able to eat solid foods and begin to articulate words after he heals! For the first surgery, his limited mobility really helped logistically, so he pretty much stayed put in his hospital crib. By the second surgery in October, he could pull to a stand (look at that parental lingo!), but he wasn’t walking yet. Now though, we’re dealing with a full-fledged wobbly toddler who wants nothing less than to be running around allthetime.  Another slight “concern” is that our clever little man is constantly devising strategies to literally climb to new heights. Santa’s gift to him of cardboard blocks are an endless source of gaining a few inches when trying to reach things.  He’s a virtual Houdini when it comes to prying off his arm cuffs even with an IV, so we and the nursing staff are going to have our hands full with Alexander.

Because the surgery will be fairly invasive, we’ll be camped out with Alexander for a few days at Comer; if all goes well, we’re hoping he can be released on Friday.  We are SO grateful that this will be the only surgery for the year (crossing fingers), but we’re dreading the exhausting week ahead.  I can’t quite explain how emotionally taxing it is waiting for your child to gently (sometimes not to gently) wake from anesthesia after surgery in post-op, but I think after that hurdle, it’ll all be downhill.  By now, we’ve figured out to silence most of the drip and sensor alarms when they go off at 3 am and what not to order from the hospital menu for breakfast, not to mention why the discount parking pass isn’t as cost effective as validation for more than a 24-hr stay. With that said, I’ll be more than happy to put these tidbits into my periphery of acquired knowledge and move to bigger and better things.  Similarly, Alexander has learned such important life lessons as always smiling when the residents are on rounds in your room, taking advantage of those days when pudding and applesauce are on the menu for breakfast, and never letting up the tears until someone produces a Thomas the Train sticker for you. People in white coats are always good for a few stickers.

After receiving an incredibly thoughtful little care package for Alexander from some dear friends, I felt inspired to put together a bag full of activities to keep our frustrated little boy entertained and distracted. Considering that he’ll have his arm cuffs back on and will have an IV, he’ll be stuck in his hospital crib for the most part.  So far, I have some bubbles, play dough (though that was met with trepidation today), and a few chunky crayons. I would love suggestions from any of you out there for activities/games/songs to help keep an almost 2-year old entertained.  The hospital usually offers toys as well, along with therapy animals– one of these days, maybe they’ll have therapy cats!

To add one more layer of fun to all of this upcoming week’s events, Alexander is getting over a nasty head cold. Of course, he was as healthy as a horse until his 6-month adoption clinic checkup on Friday. He was only running a low-grade fever, but given the open palate, our household’s main activity this weekend is following him around with soft nasal wipes and saline spray. The checkup itself went well, and the clinic was kind enough to schedule all of Alexander’s labwork to be done while in surgery.  The little man is finally on the growth charts, and he literally ran out of the examining room squealing with a big smile much to the joy of the adoption team. It was one of those life moments I’ll remember, as a few medical staff and physicians poked their heads out while Alexander toddled down the hallway in his little snowflake sweater. There was a lot of clapping, cheering, and cooing Friday morning in the hallway– it was a perfect way to wrap up our interaction with the adoption clinic.

Why my son is crying- I told him that he finished his yogurt.

A luck would have it, Alexander chose not to nap after his morning-o-doctors.  This resulted in the remainder of the day being comically painful as his sleep-deprived, cold-ridden self was not having it. He picked fights over water, dinner, yogurt, lack of yogurt, being cut off from yogurt* (see a theme here?), and being so tired he couldn’t stand up! He stumbled around like a tiny, drunk t-rex– it reminded me an incredibly funny blog about parents documenting why their child is melting down. While I hate to seek pleasure in my son’s discomfort, usually the melt down is about  something so trivial or silly, that it’s hard not to laugh on the inside while trying to calm him down.  I know Friday’s evening of squeals, crying, and tears was just a hint of what we’ll have in store for us this week once Alexander finds himself once again in his little arm cuffs.

Even though we are preparing ourselves for yet more hibernation while our little man heals and recovers, we look forward to the possibility of him being able to eat non-pureed birthday cake for the first time this year! Please continue to keep us in your thoughts and prayers this week– if we can make it through surgery #3 and a pretty severe case of cabin fever, our family can do anything!

Note to self- giving your napless child drumsticks an hour before bedtime is not the best idea.

*Yogurt is a very delicate subject in our house. I vowed I’d never start spelling things, but after an entire day of arguing through ASL with Alexander about why he needed to eat more than just greek yogurt (his response– “More yogurt! No milk! No cereal! More yogurt!”), we are cautious about bringing up the “cultured dairy product that shall not be named” lest we set off a barrage of signing about why he is still hungry and must eat more aforementioned cultured dairy product in order to be a well-adjusted young man.

Although I’ve been in a little bit of denial as I’ve slowly removed too-small clothing from Alexander’s wardrobe and have tucked away his rattles into a keepsake box, I can deny it no longer. Our little boy is growing up into a full-on, curious and boundary-pushing toddler. Today only cemented that fact when Alexander attended his first birthday party for the son of two of our friends.  Watching him run around holding a balloon and toddling wildly around a gymnasium floor was a swift, but loving kick to the gut– he’s not a baby anymore. Dress him in pastel blue all we want, but Alexander is a toddler through and through.

So back to the party. After a less than ideal afternoon nap, we whisked the young sir off to his first ever mustache party (thank goodness, mustaches were provided!) Alexander seemed to enjoy the party, mostly because of the large quantity of balloons and a toddler slide at his disposal.  It’s increasingly heartening to see Alexander interact well with other little folks– and he might have even been one of the best-dressed there with his little vest and tie!

Alexander enjoying a spinning toy with the birthday boy

Along with the addition of weekends booking up with playdates and birthday parties, we’ve now entered a phase of Alexander wanting to mimic us in every way. We knew we wanted him to have a little kitchen so he could “help” us, and we settled on a great and fairly easy-to-assemble wooden Ikea model.  We contemplated waiting to assemble it, but his great week of napping allowed me to use afternoons to slowly build the wooden masterpiece that Alexander immediately loved! We hauled it upstairs late Friday evening after he went to bed– and he squealed with glee as soon as he saw it on Saturday morning following breakfast.

Testing out his new kitchen

For all of you who gave advice on kitchens, thank you so much! We tried to find a kitchen with plenty of nooks and crannies for Alexander to store things. He immediately tested out all the cabinets and checked the burners. For any of you interested,the unit was not that difficult to assemble, is very sturdy, and has three easily-adjustable heights. Also, for what it’s worth, I was able to assemble it completely on my own over the course of two days worth of afternoon toddler naps.

In other news, Alexander’s therapy continues to go well. We’re now beginning to push his comfort level a little in order to increase his attention span and also to see just how much he is comprehending when we interact with him. After watching our therapist try and coax Alexander to assist in cleaning up a manipulative (ie toy), I figured it was worth a shot. Just tonight, after Brian read “The Little Blue Truck” to Alexander for the umpteenth time, he asked Alexander to help clean up and to put his book away before dessert and bedtime. Both Brian and my eyebrows shot up as Alexander grabbed the book from his dad, toddled over to his book bin, and carefully put it away.

Signing continues to be incredibly successful for us, as Alexander really seems to latch on to using his hands to communicate along with vocalization. After just one meal where I was eating a banana and giving him a little to try while signing it, he seems to have committed the sign for “banana” to memory. I try to throw in signs as much as possible, and I’m still amazed when after maybe one or two repetitions, I’ll see him sign something back to me when I mention the word later on. We’re currently working on “please” and “thank you”– he’s got the sign for “please” down, but he’d prefer to try saying “thank you”– which is just fine with us!

Though we continue to struggle with Alexander becoming more aware of his surroundings and attempting to communicate his little will to us through any method he finds effective (signing, grunting, pointing, howling, and the quintessential toddler tantrum), we are also watching him become increasingly more comfortable with us. Though Alexander has never been difficult, he’s never been one to cuddle or run to hug us. Now, we’re seeing him hug and kiss us, and even lean his head on our shoulder as he gets tired for the night.  I never thought thought I’d be so excited to have a little man clinging to my leg and literally hanging off my apron strings.

This kid parties in style

Alexander continues the tradition of holding a utensil for our family photo

After what seemed to be a whirlwind of a Christmas, we happily return to Have Stroller, Will Travel with renewed energy, enthusiasm, and just a bit of drool.

Who needs Smaug when you have Valentine, Protector of the toy train?

Thanks to the generosity of our family, friends, and of course– Santa Claus, Alexander has quite literally come running into 2014 with his little arms full of toys, puzzles, and new clothing. He’s continuing to sprout up, and now he can fit into his 12 month clothing! (most importantly– his 12 month pants. For several months, his skinny waist forced us to put him in 6-9 month pants, which left him sporting a less than stylish capri-look)

After a fantastic and much needed break from all things medical over the holidays, we were back at the surgeon’s office in early January. We received some absolutely fantastic news– Alexander’s previous surgeries are continuing to heal well and are actually helping shrink his remaining cleft. We were expecting 2 to 3 surgeries this spring and summer in order to correct Alexander’s hard palate, but our surgeon gave us the thrilling news that he thinks everything can be done in a single surgery.  This is incredibly uncommon, especially considering the original severity of Alexander’s cleft! Needless to way, we were all thrilled after that appointment (well, Brian and I were), and the little man was soon appeased by a few Thomas the Train stickers.

We’re still somewhat shocked that Alexander’s next surgery, scheduled for Feb 12th, will be the last one until he’s probably preschool-age. This surgery will be fairly significant though, and he’ll spend a few nights in the hospital instead of just one night. Though we have the normal parental nervousness, all of our previous experiences with the clinic, hospital, and surgery team give us great comfort and hope! Please continue to keep us, especially Alexander, in your thoughts and prayers.

In the meantime, we have jumped headfirst into the world of Early Intervention (E. I. for short). E I is a state-funded program that offers therapeutic services for qualifying children. An earlier post, To Stack or Not To Stack, explains a little better how Alexander began this program.  At the surgeon’s suggestion, we started up Alexander’s therapy before his surgery so he can become comfortable with his speech/language therapist.

We had our first session at home this Tuesday, and it went spectacularly! Alexander was his bubbly self, and it almost seemed as though he was showing off. Without prompting, he demonstrated his rapidly increasing signing skills to us and successfully used an open cup and spoon without any help from me.  I was incredibly pleased that Alexander seemed to really take to his new friend and appeared to respond very well to her prompting.  Our therapist gave us some great feedback, and overall, we are thrilled to have her as a part of our team.

It’s simply amazing to watch our rapidly blossoming little boy. He adds a new sign to his vocabulary almost daily now, and he continues to be mesmerized by all things cooking and food-related. One of his favorite activities is “cooking” by combining various small toys in a bowl, stirring with a large spoon, and then offering samples to his stuffed animals and parents.  I’m quite grateful, and I’m sure Mr. Clam is too, that he hasn’t attempted any chowder recipes just yet.

As I wrap up this entry, I hear quiet roaring– there’s a little boy running around the living room with a small toy lion in his hand. Our little one is growing up!

Who is this big kid!?!

No one told me that a good chunk of parenthood is spent reading the same story again and again to your kid (with feeling and animal noises, of course).  I’d like to think that I’ve really improved on my sheep and horse sounds, but Brian still has the lock on the duck–I don’t know how he does it! I won’t even begin to tally the number of times in the last 48 hours one of us has recited one of Alexander’s favorite stories, Sandra Boynton’s Moo Baa La La La while he was at Comer for his second surgery earlier this week.  The things one does for their kids, especially when we know they’re in pain or scared…

We were fortunate that this round of surgery was done completely at the children’s hospital, so we didn’t have to worry about having Alexander transferred to a different hospital at the completion of the procedure. What wasn’t so hot about the process though, is that the surgical waiting room for the children’s hospital contains roughly 5 and a half chairs, a lot of toys, and Playhouse Disney broadcast continually from the large televisions. Even during the half hour we waited in the morning before Alexander was taken into pre-op, we more than fulfilled our kid’s television programming allotment for a long, long time. That mixed in with parents trying to discourage their kids from playing with the waiting room toys (That has germs! Don’t put that in your mouth!), we knew that there was no way we wanted to spend several hours cooped up in that room. (Oh, and add in the fact that food and drink are prohibited in the waiting room because of the potential temptation for little kids who are most likely on food/drink restrictions before surgery, that is NO place for worried parents to wait!)

Alexander was his usual cheerful self before surgery, but the tears came out as the anesthesiology team took him away. It was actually easier on us during the first surgery, because the team gently swooped him off the bed, and after a quick goodbye, they were off. At the children’s hospital, they let you carry your child to “the red line” where you have to then hand your child over to an OR nurse. His face went red and he was a wailing mess as we tried to dislodge him from our arms for the nurses. For those of you who’ve asked how attachment is going– there’s your answer!

In pre-op, Alexander reads his good luck card from his Godbrother Josh. His Godfather Adam and his son Josh dropped the card off the night before his surgery. Lots of stickers– it was a hit!

Brian and I loitered at a nearby Starbucks as long as we could without feeling obligated to purchase a second beverage each, then we decided we’d just walk around for awhile.  At Brian’s suggestion, we decided to see if we couldn’t spend the remaining hours waiting in the gorgeous sky lobby for the main hospital– and we found out we could! Since the children’s hospital uses cell phones to contact you, we didn’t have to worry about the pager system, and we could still get our updates as needed from a much more comfortable environment. I really felt for the families who seemed to jolt every time their pager went off– but hey, we’ve been there, done that.

Mr Clam and Kokkinisto the sheep blanket wait for their friend

After a few fairly relaxed hours of reading and only one or two calls (We’re starting now…. we’re closing now), we were called back to the children’s hospital waiting room. Two parents who arrived in the early morning when we did were still camped out, bleary-eyed, and seemingly numb to the Mickey Mouse Clubhouse on repeat. Brian and I just looked at each other, very happy that we were able to wait elsewhere.  The surgeon stopped by the waiting room to let us know he was really pleased with the surgery and that all our efforts to steri-strip Alexander’s cleft really helped with the lip repair.

We were taken back to post-anesthesia care as soon as Alexander was stabilized. The nurses laughingly referred to him as “spicy,” “a real fireball,” and “with a mind and a personality all of his own.” This, of course, means that he woke up kicking and screaming and was a real pain to settle!  We were asked to keep fairly quiet and not wake him up again, but I did manage to sneak his sheep blanket Kokko into his little hand, which he immediately clutched with a death grip.  We were allowed later to hold him as he came to, and after just a little while, we were all transferred to a room (as opposed to the five+ hour fiasco from last time).

Though they put us on a regular floor this time, we still had a rather spacious single room for Alexander’s recovery.  We settled into some quality Food Network indulgence while our little man slept off his anesthesia, and by mid-evening, he was sitting up and ready for a dinner tray.  With just a few wake-ups from tangled IVs and cords, Alexander was out by his normal bedtime and slept through till morning. Brian and I did our best on the futon and room chair, but we were both walking zombies by morning. I am amazed to see families spending multiple nights at their child’s bedside and still somewhat able to function and make important decisions on their little ones’ behalf!

I woke up to Alexander doing what I like to call the angry “sheep shake”– wherein he stands at his crib rail and waves his stuffed sheep blanket in protest of something.  Though it’s usually happens during nap time and is met with a groan on my end, I was thrilled to see our little man energetic enough to stand and give me a piece of his mind.  After we all enjoyed some hospital breakfast together, some of it more pureed than others, we waited a bit for Alexander’s discharge paperwork. Aside from Alexander’s new nostril and upper lip, we left with a bit of hospital swag as well.  We shamelessly asked what would be thrown away upon our departure and got to leave with a pile-o-diapers, some first-aid supplies, and several packs of pedialyte. I know contamination is the big issue, but it amazes me how much usable medical supplies are just tossed out after each patient! We’ve definitely learned our lesson for next time– always ask!

Thankfully, we were home with Alexander napping and us enjoying some much-deserved fast food by early afternoon.  We’re still working on pain control for Alexander, but overall he’s handling things quite well. He’s used to the arm immobilizers, and we were even prepared for the ride home by throwing a clean pair of Brian’s socks over his cuffs to prevent his velcro from sticking to his car seat.   While Alexander isn’t jumping for joy for his new lip yet, it’s really interesting to hear him trying out new sounds. I’ve had a long-standing game with him where we take turns sticking our tongues out at each other– he’s still figuring out how to do it now since he’s got more lip in the way!

As long as all continues to go well, we’ll have a post-op appointment next week to have his bandages changed, and then we’ll wait until early 2014 to begin repair of the hard palate.  He’s still on pureed foods only since his palate is completely wide open to his sinuses, but hopefully we’ll be able to begin training on how to use a cup.  It’s amazing how his facial structure has changed with the lip repair, but he is still ready with a willing, though muddled “La!” for us.

It’s amazing to think just how much Alexander has changed since we brought him home, and now with his lip repair, just hearing the new variety of sounds in his vocabulary is impressive. (Brian and I both heard something approximating a “daddy” this afternoon!) Hopefully, he’ll continue to add new sounds and eventually words as his mouth heals. For now though, we’ll have to settle for his speedy turning of pages while we read to him.  And now, if you’ll excuse me, someone is shaking a book at me– it’s time to read Moo Baa La La La. Again.

Keep reading, daddy!

Apparently, that is the real question when it comes to child development.

This morning, Alexander had his first real no-holds-barred developmental assessment, thanks to the Early Intervention program through the state.  I contacted our county’s representative, and after a few calls and an orientation meeting, our coordinator arranged a specialist-palooza at our home this morning. Normally, therapists visit one at a time, but given Alexander’s upcoming surgery next week, we decided to lump everything together.

So that brings us to Alexander’s assessment. I didn’t take any photos, mostly for confidentiality reasons for all parties involved, but it was something else. For a few hours this morning, Alexander was entertained and entertained a physical therapist, occupational therapist, developmental therapist, nutritionist, speech/feeding therapist, and a social worker.  I was a little concerned that Alexander might be overwhelmed by so much attention, but true to his little happy nature, he waved happily as each therapist arrived and promptly attempted to empty their bags of manipulatives (ie toys and puzzles).  There were a lot of squeals from all parties as he clapped, played, and “la’d” his way into their hearts.

Overall, it was a great experience. I loved getting to share Alexander’s story, especially the part about his pacifier and just how far he’s progressed since we first met him– the physical therapist just kept going on and on about how incredible it was that he figured out how to eat on his own given his limitations.  They couldn’t believe he was unable to sit up fully or turn over in June, and now he’s literally steps away from walking unassisted.

I think the highlight of the visit was watching a whole team of therapists sincerely thrilled and cheering our little man on as he took a few steps on his own. I, of course, was ecstatic, but the therapists just kept talking amongst themselves as the morning progressed at how they were watching him meet new milestones after introducing them minutes before. “Did you see that? He just grabbed the block!” “He did a full pivot while standing!” The therapists were all really enthusiastic about Alexander’s eagerness to learn and just how quickly he’s absorbing new skills; they were clapping and cheering wildly as they watched Alexander stand up in the middle of the room and begin signing to them. While it’s exhilarating, it’s also a good reminder that little kids are sponges, and that Alexander is truly internalizing his experiences with Brian and myself.

When we did the final review of the assessment, the therapists were really encouraging and basically gave us the feedback we were hoping for– that he will need speech therapy given his cleft, but that otherwise, he’s catching up with incredible speed. If you’ve met our little man, you know that he’s small, and developmentally a little behind. However, the rate at which he’s catching up was referred to as remarkable and fairly unprecedented, so that was encouraging! They were also pretty apologetic about the milestones that Alexander hasn’t met yet, which included stacking blocks. They all laughed though, as they watched him empty a canvas toy bin, haul it over to an end table, and then use it as a makeshift step stool to try and reach something I had stashed away. “That kid is one incredible problem solver! He might not be stacking blocks, but I think he’s doing just fine.” “He’ll stack when he’s good and ready.”  We were further encouraged in our efforts to avoid developmental charts and books, because his progress is so rapid that even during the assessment, the therapists were adjusting their reports.

At the completion of the evaluation, Alexander was beat. He waved goodbye to everyone, but he was struggling to stay awake after so much stimulation. One lunch and nap later, our little guy was back to normal, but he looked a little saddened that his new friends were gone.  Soon, the toys were strewn about, and our afternoon was back to your regularly scheduled little kid’s play session.

So what does Alexander do first? He watches me pull out a bin of toys, and he proceeds to stack a bunch of blocks, one on top of the other, then proudly looks at me and claps.

Watching him learn and discover is so awe-inspiring– we so incredibly fortunate to have this little boy in our lives. He continues to show us pure joy in our every day, block by block!

Alexander’s first balloon. He carried it around all night!