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!