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!