Appointments, Part 3: Plastic Surgeons

Ok, back to our visit last week at the Commission's cleft clinic. We have done this more times than we can count with Kate, but for Jack it was a new experience.  (Warning: detailed information for those who care about cleft issues and/or who are local people who have asked about these doctors lately.)

(Skip to the end if you want the short version.)

There are these three brothers in our area who are plastic surgeons, and they all three work with the Commission.  Or, at least they used to.  Dr. Woody did Kate's repair, but unfortunately he is in semi-retirement because of health issues.  Last time she was there she saw Dr. Andy instead.  We noticed several differences in their approaches.  First, Dr. Andy has a better bedside manner overall.  It is hard to describe if you haven't met either of them in person, but he looks you in the eye and is easy to talk with.  However, we adore Dr. Woody.  Not only is he a fabulous surgeon, but we like several of his methods better.  For example, Dr. Andy recommends no-nos for the arms and syringe feeding after surgery to prevent the child from messing up their stitches.  While I know these things are common practice, Woody felt like it was more bother than help for a two-year old.  He never made us use them.

Also, Dr. Woody believed that if the initial lip repair was good that the child should be a teen before deciding if they wanted cosmetic surgery to "clean up" the area (nose, lip, etc.).  He always told Kate that her lip looked good.  Last time Kate was at the Commission, Andy told Kate he wanted to fix it now.  That was the first time anyone had ever told her that her lip needed to be fixed at all, and now it is an issue.  So what we had before was a child who knew her lip was different but didn't care, and what we have now is a child who worries about her lip being different.  Needless to say, Mama Bear is a bit miffed about that.  I plan to have a chat with Dr. Andy in the near future about little girls, self-esteem, and body image.

Ahem.  Back to Jack's appointment.

One the first things we noticed about Jack's cleft was that the gum line is somewhat intact. We were fully expecting it to be a complete cleft since the lip, nose, and palate are involved, but when we snuck a peek we got a surprise.  The plastic surgeon (Dr. Andy) thinks that because Jack's gum line is partially intact, he probably won't need a bone graft when he is older.  This is fabulous news, as this can be a very painful procedure.  (Kate will probably have hers in the next couple of years, and we are not looking forward to it.)

Dr. Andy hopes to do the palate repair sometime this summer.  Ideally we will coordinate the palate repair, get the ENT to put in tubes, and have a sedated ABR (hearing test) done, all at the same time.  It will likely be a one night stay in the hospital, and he will be allowed to go home when he is eating/drinking/urinating.  It won't be fun, but we will all survive.

Also, I got the physical copy of Jack's hearing test today.  Not only is his hearing loss in the mild/moderate category, but according to that latest test he can hear at 20 decibels.  The original report from China had him hearing at 45-100.  (I am sure that all of the audiologists, doctors, and SLPs out there are shaking their heads at my lack of ability to use hearing test terminology appropriately, but that is the best I can do at the moment.) That is huge, and we are very happy.

Posts (so far) about Jack's cleft issues:

• Let the Appointments Begin!
• Appointments, Part 2: Audiology

Posts (yet to come) about Jack's cleft issues:

• ENT (and probably more audiology)
• Early Intervention (this one might be a doozy)
• Speech (even though this is part of EI, it might get it's own post)
• Dentist (ie, How many teeth does Jack have, and will that be all?)

So, to recap: Good news - Probably no bone graft needed.  Repair in the summer (July?).  Probably will get tubes.  Hearing is much better than expected.

Jack: 4 Weeks With Us

There will be more medical/developmental reports when I have time to write them up, but for now, a general "settling in" post. 

Jack is still feeling kind of yucky, between his cold and his ear infection.  His symptoms were fewer today, but he just seemed kind of "off".  He wanted to be held a lot and didn't want me out of his sight.  These aren't bad things to occur in an adopted child.  It is a good thing that he is seeking me out for comfort.  It is a wonderful thing.

Today during his naptime and tonight at bedtime, I laid down with him.  He would first lie down next to me, and then he would sit up and rearrange himself on top of me.  Then, he would raise his head up, give me a big open-mouthed kiss, and then lay his head back on my chest.  Over and over he did this.  I think part of it is him learning to imitate me.  Not that I give him open-mouthed kisses, mind:) But I do lean down and give him kisses when I am changing his clothes or putting him down for a nap, so I think he was trying to be like me.  I also think his comfort level with us is increasing.  He has always been a cuddle-bug, but the hugs and kisses are getting more frequent. 

And last, a picture of Jack and my Emery, who I used to babysit.  I know they look cute, but this was just before they both decided to start screaming and talking loudly in the middle of church.  They didn't stay there much longer before their mamas had to drag them out crying.  It also looks like they might be friends here right?  Well, Emery is trying really hard to make friends, but Jack isn't sure what to make of this guy yet.  I'm sure Emery will keep trying:) 

Appointments, Part 2: Audiology

This post started out as a full description of all the the specialists we have seen so far, but I quickly realized that it would take a couple of hours to read it all, so I better break it up a little:)

We spent yesterday morning at the Commission's cleft clinic.  We have done this more times than we can count with Kate, but for Jack it was a new experience.  Thankfully it went very well.  And so there is good news, and there is bad news. 

First, the good news.

We saw Kate' regular audiologist (who is now Jack's audiologist), and she did an evaluation, even though Jack's ears are full of fluid and infected.  She told us that she feels like with tubes, Jack has a great chance at completely normal hearing.  We are absolutely thrilled with this news.  She said his loss is probably mild/moderate and told us to come back when his ears are infection-free for a more accurate test.  She also requested a sedated ABR to be done during the palate repair. 

And now for the bad news. 

Jack's enrollment in early intervention was based on his hearing loss being severe in his left ear.  A diagnosis of mild/moderate hearing loss means that he no longer qualifies for services based on his hearing loss.  When Kate was enrolled, cleft palate was considered a significant enough issue to get her in the program, but it no longer does.  (I would love to know how many cleft kids don't need speech services, for Pete's sake.)  And so now I have to start from scratch and get him qualified another way.  Basically it has to be proven that he has significant development delays to get the speech therapy that he will obviously need, even though he is very young and the delays aren't that serious yet.  Should be fun. I am eagerly awaiting the paperwork to get the ball rolling on that. Hopefully his expressive/receptive speech delays will be considered significant enough, because I don't think his motor delays alone will be.

The OT we saw on Wednesday had warned me about this.  Unfortunately, budget cuts mean that they have to find ways to cut services for kids who need them.  She said that I will have to fight for services that they automatically would've offered to Kate.  That's ok.  I am pretty good at that.  Y'all remember how much I love arguing with navigating insurance companies, state-run red tape services, and healthcare providers? Actually I take a sick pleasure in conquering it, but that is probably a post for another day.

Let the Appointments Begin!

This week kicks of the forty-'leven appointments that Jack has over the course of the next month.  Monday we had the intake interview with early intervention (nothing too exciting to report there), and today we saw the international adoption pediatrician, along with an evaluation by an OT who knows her PT, and lab work.

One of the first things we noticed about Jack were his motor delays.  They are not severe - he is walking, crawling, and starting to crawl up the stairs.  However, he is not very steady on his feet, has very little core strength (although his full-hand grasp will pull your arm off), and does not have a pincer grasp.  He is making great progress since we met him, but he has some catching up to do.  The OT gave me several exercises to do to help him improve in these areas, and I feel like it will happen quickly.

The lab work was awesome of course.  Doesn't everyone love having a dozen or so vials drawn for vaccination titres and various other tests.  And this week I have feces collection duty.  Bonus!

And last, but not least, Jack has a right ear infection. Actually, the left is probably infected too, but it was too full of wax for her to be able to tell completely.  She tried pulling it out, but it was in there pretty deep.  Which also means we still haven't got a good look at that left ear canal.

All in all, it was a good day - if only for the fact that it went pretty much as expected and I got Jamba Juice at the end.  Jack got meatloaf and a banana.  We were both happy.

Tomorrow is the plastic surgeon and audiologist, along with a SLP, dietician, and a dentist.  Friday is the TB reading.  I am already putting that new cell phone to good use.

All About Jack

As promised, it's time to talk more about Jack...

When he is happy or just waking up, he is a total cuddle-bug.   He will look up at me, grin, and then bury his head in my chest.  When asked by one of us, he will give a big, sloppy, open-mouthed kiss.  (Will claims he gets the most kisses, which is ironic considering Will's food-sharing aversion.)

When he is playing, he will look over at me and smile this big toothy smile.  Overall, he has a really easy-going personality.  He likes to play with the stacking cups/balls, the Elmo radio that someone gave us when we had Ben, and anything on my Kindle Fire. If he is concentrating really hard he sticks his tongue out the side of his mouth.

He is a charmer.  He flashes that smile at people, and grins extra wide when he is doing something he knows that he shouldn't.

He has some stranger anxiety going on, especially for adults.  If you see us out and about and he shakes his head no at you, he wants you to keep your distance.

When he is cranky, it is because he his either hungry, or he wants to GO!  Go out in the yard, somewhere in the car, out to the mailbox - he doesn't care, as long as we are going somewhere. If he sees someone at church with shoes and a jacket on, he will forget his stranger anxiety, grab their hand, and try to leave the building.  If he does this to you, you probably shouldn't encourage it, even though it is totally adorable and you will want to follow him anywhere.

He likes to eat. Anything.  He definitely has preferences - cereal, raisins, rice, noodles - but he will eat just about anything.  Today he has eaten Cheerios, raisins, turkey, noodle soup, a pickle, grapes, potato chips, watermelon, bread, and half of an apple.  Plus a bottle.  And it's only 4:30. He is getting a nice, round belly:)

He loves all of his siblings, but Will is the most patient with him, and therefore the one who usually ends up playing with him.  We call Will the Baby Whisperer.

We are all trying to teach him how to go "boom" down the stairs.  My niece Bri taught my boys how to do it when they were little, and now they are teaching Jack.

We have tried to introduce a few signs, but they haven't caught on yet.  It is still very early.

Even though it is very early, he is already trying really hard to repeat our words.  In China he was trying to repeat "hat" when Tim put one of the stacking cups on his head. Yesterday when he finished his lunch he said, "Ah Gah!" which sounded an awful lot like, "All gone!"  Today I was telling him about socks and he made the short O sound.  Pretty impressive for someone who just entered the country a week ago.

He is now sleeping in his room with his sister.  Tim or I will lay down with him until he falls asleep, and if he cries out (which has happened every night so far, several times) we go to him and lay back down with him.  He is responding pretty well to this, and we are all sleeping more than we were a few days ago, even if we do wake up confused about what room/bed we are in. The pack and play was not working well, and our bed isn't big enough for him to windmill between us all night.  

Bonding and attachment are going well.  We move forward, then back, then forward again.  But he is definitely more attached than he was a week ago, which is more than a week before that, so I am optimistic about that.

I have spent most of my time this week on the phone making appointments.  In the next couple weeks he will see an IA pediatrician, a dentist, an audiologist, a plastic surgeon, an early intervention coordinator and an evaluator, a speech and language pathologist, and quite possibly an ENT.  I have called the insurance company and am trying to coordinate them with all of these care providers so that they will let us be seen (why does no one take my word for it that he has insurance?).

He is amazing.  I am falling for him so quickly.  Everyone around him is completely smitten.  Just wait.  You will be too:)

Day 13 (& 14) Home

Possibly one of the greatest travel ideas ever is the airport adjacent hotel.  Are they overpriced?  Yes.  But there is something wonderful to be said for stepping out of your hotel room, walking down the hall, and checking in at the flight counter.  Especially when you are flying out of Hong Kong and it it takes almost two hours to check in, go through security, and go through customs.  By the time we got to the plane, it was mostly loaded.

The flight was smooth and on time, but that's about all you can say positive about a 14 hour flight.  Oh, and the movies were good and mostly appropriate for the children.

The last leg from Chicago was also smooth and without incident.  Unless you count Jack screaming for most of the hour-long flight.  He did great on the big plane - all the kids did - but the last leg put him over the edge of his I'm-so-tired-I-just-want-to-cry meter.

We got home safely, stuffed some Chick-Fil-A into our faces, took baths, and went to bed.  We had decided to put Jack in a pack-n-play next to our bed for the first few nights so we could comfort him if necessary.  It didn't take long for me to realize that it was going to be a loooong night.  We ended up putting him in bed with us simply because it was faster to pat his back and put him back to sleep than any of the other alternatives.  Jet lag does not make for patient parenting.

After being up half the night, he ended up sleeping until 1pm.  The rest of the day he was in a fairly good mood, and he eats really well, but after dinner it was clear he was ready to crash.  I kept pushing him to stay up longer, in hopes that he would sleep through the night.  We shall see how that works out for me.  I keep dozing off at random times myself, so I understand how he feels:)

I know it looks like he is upset in this photo, but he was really excited about throwing every single Little People doll we have across the room.  His smile face and mad face are pretty similar, but he was laughing and saying, "Ah!" over and over again (short a sound, not ahhhhh) which is of course his favorite noise. 

I have to give one last thanks to all the people who have prayed us through all of this.  Jack is doing very well (I hope to write about that later, when I have had enough sleep to do more than simply write down what happened each day - for now, see Tim's blog), and I have gotten to focus on him because I have such a great support system.  Mom and Jacob took care of the kids, Tara and Vanessa took care of the blog, and when we got home I found that Christa, Tia, and Sarah had been at work in my kitchen, buying me milk and freezing meals.  (Yummy chicken pocket thingies, btw.  Will says I must make them for him again sometime.)  I cannot thank all of you enough.  You're the best!

Day 12 Guangzhou/Hong Kong

There isn't a whole heaping lot to tell from Tuesday.  We slept in, took a cab over to Shamian, and did a little shopping.  Those of you who know me well realize how ridiculous it is that I spent significant time shopping for three days in a row.  I loathe shopping. But we have a tradition in our house of giving Kate a small gift from China on Kate NaNa Day.  It's never a huge deal, but I needed to stock up so I would have a similar gift for Jack for the next 18 years. 

One of the shops we went to was Susan's Place.  On Shamian, all of the shops are named after whoever runs them - well, their assumed English name, anyway.  There is Jenny's Place and Amy's Place and Michael's Place and... you get the idea.  Susan's husband is Dong.  And he is hilarious.  He immediately drew in Jacob and Tim and started telling them stories and pouring tea for them, and the longer they talked and drank, the longer Mom and I shopped.  Brilliant strategy, I tell you.  I walked out of there with things I didn't even know that I wanted, because Dong never stopped talking and pouring tea.  I finally started sending people out of the shop, one by one, to get us out of there.  They really were delightful, but very savvy. 

After a Cantonese lunch on the island, we headed back to the hotel to finish our packing.  At 4:30 we loaded into vans and drove to Hong Kong.  Did y'all know that you still have to use your passport and go through customs to get in and out of HK?  I sure didn't.  And so I did not think it was a big deal when we pulled out of the hotel (me and Kate and Jack in one van with another family, and the rest of my family in the other van) that I carried all of the passports.  Thankfully someone else figured out the problem before we were out of Guangzhou, and they pulled us over to get the passports from me.  Immigration disaster averted.

We arrived at the Regal Airport Hotel, exhausted but safe, about 3 hours later.  There was internet in the lobby, but I was not motivated to go that far for you all.  Sorry about that.


Day 13 is coming...