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!?!