Although I had a product review all ready to post, I decided to put that on hold in light on the recent ongoings at Casa Kelly. The biggest news here is that Alexander’s first surgery has been scheduled for this Monday morning, Aug 19th, at Comer. It’s likely to be mostly lip reconstruction with a little palate, the majority of inside work to be done in subsequent surgeries (probably 3 or 4 others a few months apart).

It feels a little odd to be preparing our little guy for surgery, considering that we can’t really reason with him about short term pain and discomfort for long-term gains. Similarly, he didn’t think to call our healthcare provider to begin the process for pre-certification of his surgery.   I feel strangely grateful to have gone through so many hospital stays myself, as I feel fairly prepared for logistics, and the surgical team was surprised when I called to ask about the pre-op instructions. “Normally, families don’t call to ask about the last-minute marching orders.” I politely said that I hated being tied to the phone the entire pre-op day waiting for the intake folks to call, which inevitably ended up in a game of phone-tag. So in short, we’re all set for Monday and will most likely just have one overnight stay.

So where does the title fit in? Well, as I mentioned in a previous post, Alexander’s surgery and repair will mean the End of the Pacifier (said in a deep, dramatic voice). It’s one thing to have a doctor tell you this, and it’s totally different to try and prepare your little kid for something they can’t fully understand. I still tell him every time he’s eating with the pacifier that next week, he won’t be able to use it; I know I’m saying it mostly (all) for my benefit, but it helps to vocalize those words considering the chaos that ensues.

Brian and I have developed a few “games” which involve asking for the pacifier or distracting him in order to help him realize he can swallow without it. Though he’s come to rely on it, we’ve witnessed firsthand that it’s not essential to his eating. It definitely makes it easier for him, and frankly, I can’t really blame him for using it. He found a way to make eating easier/possible, and so why not use it? The games have worked for small amounts of time, but this kid is smart. The original game of “please give me your pacifier” resulted with him trying to just graze our hand with it but hold on for dear life. Similarly, when we’ve tried with the spoon and no pacifier, he just does his best effort to knock the spoon out of our hands.

Well, today, Alexander’s mama busted out the tough love. I snipped the pacifier.

I started with a few small holes during “Elevensies” and worked my way up to a full hole during Teatime. I kept snipping off more and more, with dinner being a noticeable hole, and bedtime bottle looking pretty severe. He seemed a little confused around dinner time, but everything hit the fan tonight. The second he put the pacifier in his mouth, he let out a shrill cry and looked at me with an unmatched fear and fury. Something was different and wrong. So very wrong. Brian looked at me from the kitchen– we knew eventually that the next snip would be one too many, and this was it.

The good news is that Brian and my attempt to make him swallow on his own was successful– he drank his entire bottle in the usual time frame. The only big difference is that he was howling and turning red with rage this time. While it kills me to see our little guy unable to be soothed by something he’s depended on for so long, we know that if we can get him not using the pacifier now, post-surgery shock of no pacifier might be a bit easier. He’ll have (little) arm restraints when he’s post-op for at least a week that will keep him from bending him arms (ie putting his hands in his mouth or anywhere near his face), but I’m sure the anger of no pacifier will still be present.

Although we feel incredibly fortunate for the laid-back son finally asleep upstairs, we knew that having a child with medical needs would come with many challenges.  Tonight, all I kept thinking during the rage was “I’m not your friend, I’m your mom. Those are two completely different things.” I can only hope that one day in the distant future that Alexander will consider me a friend, but for today, I’m more than thrilled to be his mom.

And for now, we’ll take things one snip at a time.

I’ve been waiting to post this story for a LONG time. Several of you have asked us about stories we didn’t feel comfortable posting during our trip to China. Sure, our trip wasn’t perfect, but we didn’t really have to censor much. However, there was one fairly significant story that we didn’t relate in detail until now… and so I bring to you….

The Pacifier: An Epic Tale

The elusive pacifier

When we first met Alexander, he was happily using the pacifier we had seen before in many, many photographs. I had considered purchasing a few additional pacifiers, but I figured that he’d be using what he came with (if at all), and I didn’t want to encourage using a pacifier if he didn’t show up with anything.

Our first day with Alexander included trying to figure out how he ate. Thanks to some assistance from his nurse and some ingenious thinking, we realized the next morning that he used his pacifier to help form a suction when trying to eat. What nurses considered fussy eating was really our little man trying to close the gap in his lip in order to eat.

We were thrilled! With this new-found knowledge, we were in business. What took the Beijing folks over an hour we could then accomplish in less than 30 minutes! Alexander was happy, we were relieved, and we thought the problem was solved. However, little did we know that our concern was just starting!

A few days into our time with Alexander, we noticed that he was not only sucking on his pacifier, but that he was chewing on it… really hard. We could hear him grinding his teeth when the pacifier wasn’t in, and we could only guess what was happening when he was dampening the sound with the small piece of rubber. As you might guess, one result of our son’s cleft palate is that some of his teeth are rather misaligned, so the sound of teeth on teeth is sadly fairly common in our home. But back to China… when we finally got up the courage to look at his pacifier, our fears came true– he was slowly ripping his pacifier apart! The pacifier had been ripped about a third of the way through, which meant that it was only a matter of days until he ripped it completely off, either accidentally swallowing it or just ruining any chance he had to eat.

This wouldn’t be nearly as terrifying if Alexander hadn’t shown us that he needed the pacifier to eat. We tried experimenting by taking the pacifier away, but he refused to eat without it. Even if we presented a bottle to him without handing him his pacifier first, he would freak out. We knew that we needed to find a replacement stat.

Brian and Bill tried several locations and multiple pacifiers– each time, we’d gingerly hand the pacifier to Alexander and wait nervously. He’d pop it into his mouth– you could see him trying it out… then he’d eject it with a frown. Not the right one! After several days of unsuccessful pacifier hunting, we began to give up hope. The “funny” part in all of this is that what Alexander’s pacifier was is your run-of-the-mill Nuk variety– nothing special. In China, however, it’s next to impossible to find this brand.

Our guide, just as concerned as we were, took photographs of multiple angles of Alexander’s pacifier and immediately began trying to contact his adoption/consulate friends in Guangzhou (while we were still in Taiyuan). Meanwhile, I posted to multiple China adoption message boards trying to see if anyone who was in-country either in Guangzhou or on their way there might have a Nuk.  Within hours, I had over 20 responses from adoptive families, and Bill had heard back from multiple adoption guides. While I just had a few leads, Bill found a woman in Guangzhou with an exact match waiting for us.

As soon as Bill arrived in Guangzhou, he took a cab across the city to pick up the coveted pacifier. He brought what looked like almost the same thing back, and we watched nervously as I handed it to Alexander. He looked at it, paused, and then placed it in his mouth… and it stayed there! We were saved!

Though he continued to chew away on his new pacifier, we figured that we’d have enough time to get back to the USA. We did, and one of the first things we did after returning home was to find some back-up pacifiers. Comically, we must have purchased the wrong size the first time because he spit out the first round we purchased for him here too!

Now that Alexander’s gearing up for surgery, we’re trying to get our little man off the pacifier. I’m spending several hours a day working with him to help his realize that his reliance on the pacifier is more psychological than physical; with enough effort and concentration, he can swallow and clear his throat completely. I ask him to hand me his pacifier, and he hands it over. He promptly starts to bawl, but then he usually can swallow while whining and begging me for the pacifier back.

Thinking backward, it feels like a long time since we were all petrified that our son wouldn’t be able to eat and end up in the hospital on an IV. Now, we’re preparing him for the hospital and asking for his pacifier back….

For those of you less versed in medical administration (which is most of you out there), an EOB is the Explanation of Benefits that you receive in the mail after a medical consultation, which always includes my favorite line “This is not a bill.” Our first EOB arrived yesterday for all of our visits to Comer, and we anticipate enough of these arriving at our home in the following months (and years) to wallpaper most of our first floor. This afternoon Brian and I joked that the EOBs arriving from today’s day-o-specialists alone might meet our annual out-of-pocket maximum.

Today was our big surgical consult with the Craniofacial Team– and let me tell you, they were thorough. We were “warned” that this would be no 30 minute special. This team, consisting of a plastic surgeon, orthodontic surgeon, geneticist, speech pathologist and feeding therapist, and an ear-nose-and throat doctor along with their respective gaggle of interns, residents, and fellows, all met with Alexander today. We dutifully rolled our stroller from small exam room to exam room while Alexander worked his magic. While he wasn’t thrilled to have people poking around in his mouth, he smiled for just about every photograph the team took. It was pretty darn hysterical to have our little man sitting on an exam table throwing out this huge grin to a bunch of doctors more than ready for a bucket of tears– and he even did the Kelly “outstretched arms” pose complete with jubilant “la la” once for the orthodontist.  Needless to say, he made an impression.

We can’t say enough good things about the team so far– the geneticist even went searching for our next appointment doctor so we didn’t have to sit around too long in the waiting room– who does that!?!?

The result of all our appointments is pretty much what we expected. Our man needs surgery, and most likely several. Because of the size of his cleft, the surgeon wants to do several progressive surgeries rather than 1 big one. That way, his little body will better be able to adjust to the  changes, and the surgeries will have better chance for taking. (a constant risk for any cleft surgery is that holes occur or the palate closure pops back open over time). We are waiting to hear back from the surgery scheduler, but we figure we’ll hear about potential dates soon. Also, although it’s never a 100% guarantee, the geneticist was really pleased with Alexander’s progress and seemed somewhat surprised that he was able to stand with support. Cleft lip and palate is one of the most common birth defects in the world, but it is often also associated with other disorders or complications. From everything they assessed, it looks as though aside from institutionalization-related delays, our little man is right on track.

I also have to admit that after 6 appointments, I finally welled up a little at the hospital today. I know many people who are reading this have gone through similar and/or more trying experiences with their own kids, but I feel compelled to share. I made it through almost the entire day, but when we finally got to some behavioral auditory testing, it hit me how much this little guy is going through (even though hopefully he will have limited memory of it, if at all). I was standing in the control booth with one of the therapists while Brian sat with Alexander on his lap in the testing room. Luckily, I was able to pull myself together before the technician and everyone else could see, but it definitely hit me.  Knowing my little man has a long road of medical care and therapy in front of him just breaks my heart, but I am grateful his cheerful spirit and trust in us will make it easier.

Today was a really busy day at Casa Kelly. As I’ve mentioned a few times in recent posts, we spend a lot of time in the car traveling to and from Comer Children’s Hospital, a part of the University of Chicago Hospital. Aside from the parking deck elevators, which are large enough for approximately 1.5 people, I have zero complaints. (I think our record was us, our stroller with Alexander, a gentleman in a wheelchair, and three other people. We all got friendly REALLY fast). But back to the hospital and adoption clinic team– they are fantastic! I truly feel like they care about our family, Alexander’s progress, and looked sad to see us have our last visit with them today.

The things a mom does out of love– this time it involved me spinning myself silly on a stool just to make Alexander laugh while we waited.

We progressed through a series of four visits– the first of which was getting basic vitals, the second being the big blood draw, the third discussing the results of his labs, and the fourth being getting him on track for surgery, speech therapy, and easing us into “normal” life with a pediatrician closer to home. Today was our final visit at the adoption clinic, and it felt a little bittersweet. Our medical team was thrilled with Alexander’s overall progress, and our little man was chipper even through his set of vaccine updates.  He gained close to 2 pounds since we brought him home, which is pretty impressive for his pre-op condition. We also met with a speech therapist, who worked with Alexander and us on ways to increase communication and verbalization, along with eating development.

Our man showed off for the therapist and even was able to drink from a cup. We tried a few signs with him, and he signed back “mine” once to us. Alexander has already been exposed to some signing from us, including mom, dad, cat, and his least favorite “all gone.” Several of you have asked us how his English is coming along– he definitely knows his name, which is a huge relief to us. We were concerned for the first week or so that he thought his name was “Benny.” Every time we’d call for Benny, one of our cats, Alexander would squeal, smile, and clap– total parent failure if your new child thinks their name is actually that of the family pet!

We return to the hospital super early on Thursday morning for a 4+ hour appointment with the surgical team; we knew this would be long and daunting, but the trips into the city do make for long days.  Most likely, we’ll have a better feel for when we’ll be scheduling surgery, which we hope is soon!

Our day ended with a visit from our social worker for our first post-placement visit almost as soon as we got home from the hospital. It was so great to see her, and she seemed to really enjoy meeting Alexander in person for the first time.  We’ll continue having our social worker visit us throughout the next five years (yes, 5!) where reports will be generated and mailed to the Chinese government. Overall first placement report? Two thumbs up for our little man!