Jack's Surgery, Part 2

I apologize for not posting another update yesterday, but once your child comes out of surgery there are more important things than blogging. The repair went well, but it was more complicated than the doctor thought it was going to be.  The repaired cleft in his lip was unilateral, so the assumption was that the palate was too.  We were also hoping that since his gumline is mostly intact that he would not require a bone graft when he is 7 or 8.  We were wrong on both counts.  Apparently the palate was more of a bilateral cleft, which means there is a cleft on both sides of the mouth.  I knew it looked bilateral to me, but I had never had a doctor tell me it was, so I just assumed that my uneducated eye didn't know what it was looking at. 

Also, the clefts extend into the bone of the gum line.  So even though it looks like his gum line isn't affected much, he is missing bone on both sides and will need a bilateral graft later on.  This is disappointing news for Jack, but will be manageable, of course.  Bone grafts are just considered to be very painful surgeries - I know from experience with my leg that the bone doesn't really numb.  The skin and tissue around it might be numb, but when you mess with that bone it hurts like the devil.

Ear tube placement also went well, although we haven't actually talked to Dr. V.  She had another appointment to get to, but it apparently was a standard tube insertion.  His ears don't seem to be bothering him.

His mouth on the other hand, hurts a lot.  He spent most of yesterday curled up on top of me, either sleeping or moaning, or moaning in his sleep.  He didn't sleep very well, and any rest he did get was thanks to some good drugs.  Today he is feeling much better, but still  not himself.  There is still some drainage and it hurts for him to swallow.  We are having to force feed him liquids, pudding, and applesauce with a syringe so the doctor will let us go home. 

We did venture out of the room today.  We went and found the playroom, where we played trains for awhile.  He also spent most of the morning awake, playing trucks and reading.

The plan from here is to go home this afternoon/evening.  He will then be on a liquid/baby food diet for two weeks, so don't expect to see us much in any place where they might serve food. My boy loves to eat, so this will be hard for him.

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

• Let the Appointments Begin!
• Appointments, Part 2: Audiology
• Appointments, Part 3: Plastic Surgeons
• Appointments, Part 4: The Dentist  
• Appointments, Part 5: Early Intervention 
• Appointments, Part 6: Speech 
• Appoingments, Part 7: ENTs (and Plastic Surgery Revisited)
• Jack's Surgery (Part 1)

Jack's Surgery

Jack has gone into surgery. Tim and I are hanging, seriously considering breakfast and any other distraction that might come our way. They are going to place ear tubes, do a sedated ABR (hearing test), and then Dr. L will repair his palate. It will probably take around three hours, but each doctor will give updates as they finish their part.

I am a big bundle of nerves.  Trying to prepare my heart for the crying and clinging that will happen.  Praying that he is already asleep and that Dr. V already has those tubes in. Praying that when he wakes that they will get us back there super fast to comfort that sweet little man.  Praying that everything goes more smoothly and perfectly than any tube/palate job ever. 

Not impressed with the new jammies.

Much more impressed with the transportation.

Will. My Eight Year Old.

 

I was walking down the stairs today, and I noticed a picture of Will that hangs on the wall there.  I walk past the pictures that hang there a million times a day, rarely taking the time to slow down and look at them.  In the photo, he is four years old.  His face is round, with kissable cheeks, sparkling eyes, and a noticeable lack of freckles, considering his current tally of "sprinkles." It was shortly after this picture that his face started to lose the "baby-ness."  Suddenly, he was a big boy.

Will is my mama's boy.  (Jack is in hot pursuit of that title, but Will is hanging on for dear life.) I always tell him that no one loves me quite the way that he does.  (Not the amount, mind, but the way he does it.)  When he hugs me I can feel it in my bones.

  

And I am constantly amazed at how much he has grown up.  He isn't a baby any more.  He is a second grader.  He is the "grit" of the soccer team.  He is a beginning piano student who has joy in every correct note.  He is the kid who gets off the bus and proudly shows me his perfect spelling test.

Oh, and he adores small children.  He was my biggest asset when I was babysitting regularly.  He could usually figure out what was wrong and how to make the baby stop crying before I did.  He loves his brothers and sister fiercely, and loves torturing them almost as much.

He still makes me laugh like crazy.  Still says off the wall things.  And we will be using Will-isms until we die.  (Nevah-evah-evah! It's too much soup! Shirts are very important to me. That was a sarcasm. I knew I would have a great life.)  A friend of ours who goes to the local college (where we know lots of folks)  said she overheard another student using a Will-ism one day - and it was someone we don't even know.  The girl apparently thought it was a movie quote because she had heard it so often from our friend.

Of course, those of you who know Will personally also know that this is the child that has taught me the most about parenting.  Any patience, creativity, or gray hairs that I exhibit come from parenting this child.  He keeps me on my toes, this one.

But, oh.  How I love this kid.  I love every sprinkle on his face.  I love his persistence and tenacity - which make me crazy, but will serve him well in life.  I love his search for justice in his life and in the world.  I can't wait to see how God will use this kid. It's going to be awesome. 

Birthday Bash: Will & Jack

Last year we had one massive birthday party for all three kids, regardless of the fact that their birthdays spread across a 4 month time span.  It's a long story, but suffice it to say that it is much easier to throw one massive party than three big parties, when more than half the guest lists overlap. 

As the birthdays approached this year, they all wanted different parties.  Ben wanted to take a friend for pizza and video games.  Kate wanted to go to a local pumpkin patch.  Will wanted a pool party.  His only rule was that he wasn't sharing his party with his brother.

Except then we met Jack.  Whose birthday is six days after Will's.  And Will said, "Of course, we will just share the same party."  And I said, "But you said you wouldn't share with your brother."  And he said, "I meant the other brother."

And so we once again had a shared party.  Which is just fine by me.  And the grandparents who have to travel.  My uncle graciously agreed to open his home and his pool to us, and our craziness.  Thanks again, Ricky:)

Will designed his own cake this year.  C3PO kept falling over, so we had to push him way far into the cake.  Hence, his short stature in the picture.

Jack wanted to wave his candles out, but once I blew them out for him demonstrated, he did his best to pretend to blow.

And thanks again to Grammy, because this mama forgot the camera at home.  Yes, I am that awesome.  Oh well, at least my kids are awesome. 

School Time

I never did get around to posting about the fabulous-ness of the 2011-12 school year, but it really was all that and a bag of chips.  My kids have had excellent teachers in the past, but it was the first time that all three of them were just in the perfect spot for them.  Kate was in her third year of preschool with her beloved Mrs. Whoa-ah (whose name isn't really Mrs. Whoa-ah, but that was how Kate said it when she was three). Will had the wonderful and amazing Mrs. H., whose presence he still mourns daily.  And Ben had Mrs. B., who really got Ben.  You know what I mean?  She understood where he was academically and how to challenge him, but she also seemed to understand his quirky, off the wall personality.  It was just a good year for growth and positive change.

So, you would think that with a year like that under our belts that all three of the kids would be super excited to start another year, right?  Nope.  Not so much.  Well, actually Kate was excited, until about a week before it started, and then the reality hit her that she wasn't going to be in Mrs. Whoa-ah's class any more.

Will spent half of his summer writing letters and postcards to Mrs. H and wondering why she couldn't just teach 2nd grade this year.

Ben was under-whelmed with the whole thing, being a cool almost-4th grader and all.

So, off to school they all went.

Annual First Day of School Breakfast with Daddy

(Don't worry, Kate changed her clothes and combed her hair before school. I promise, Mimi.)

When they got off the bus the first day, I was eager to hear about how awesome it was.  Ben thinks that he has the the nicest teacher in school, and therefore the best teacher in school.  As long as he is learning, I will just keep on agreeing with him.  (He got an A on his first science test, so we are well on our way.)

Will was disappointed that most of his friends are in another class, but happy to be reunited with an old Kindergarten friend.  Since then he has decided that 2nd grade is boring because he hasn't learned anything new yet.  I assured him that it is only the 3rd week of school, so they are only getting warmed up.  (I hope this is true.  Ben spent most of 2nd grade bored, which was why we were so excited about how good 3rd grade was.)

I was most excited to hear about Kate's day, since she is the Kindergartener after all.  So I asked her, "How was your day?"

K: Well, it was a bit "disturbing." (She actually used finger quotes around the word "disturbing."  Where does she get this stuff?)
Me: It was "disturbing?" In what way?
K: Well, my teacher is a little bit bossy.

Oh, boy. 

Me: Well, dear, she is the boss of your classroom, so she does get to be bossy. 
K: Well, I don't like it.  Mrs. Whoa-ah was never bossy.
Me: That's because you acted like you were the boss in Mrs. Whoa-ah's room.  You just didn't notice that the teacher was. 

Everyday that week went on with a similar report.  The boys tried to tell her how it was.  She still didn't like it.  The following Monday, I asked again.

K: My day has come!
Me: Wow, that's great.  What does that mean?
K: I get to be star student for the week. So I get to be line leader and tell about myself and choose first at choice time and a bunch of other stuff. 
Me: Awesome.  I'm glad your day has come. 

This week another child is star student, so she thinks the teacher is bossy again.

It might be a long year with this one.

Poor Impulse Control

In case you haven't heard, I really like Jack's new plastic surgeon.  He is bright, young, and enthusiastic. 

And he cracked me up.

Early on in the appointment he commented that I had my hands full with Kate and Jack.  I laughed and said that this was only half of the crew.  He shook his head and made the standard "Oh, you are such saints," comment.  This comment makes me crazy.  Anyone who has said this to me in real life knows that I always answer, "No, we aren't saints.  We are just doing what we want to do - parenting kids."

He must have seen it on my face (everything I think shows on my face).  To answer him I started out, "No, we aren't saints," and he interrupted me with a smile and said, "Oh, so it's just poor impulse control then." 

And I laughed. "Yes, exactly!"  Because that is exactly my brand of sarcastic, dry humor. 

So I have decided that this may be my new answer when someone tells me what I saint I am.  "No, I just have really bad impulse control."  Then I will shake my head and walk away. 

As if you could adopt a kid on a whim.  An impulse. 

I am cracking up just thinking about it.  Hehe. 

Appointments, Part 7: ENTs (and Plastic Surgery Revisited)

I have had messages from several of you about what a bad, bad blogger I have been. During the summer Tim is gone a lot with the church youth, and I am doing the single parent thing.  Plus, the kids are home with me all day, which means by the time they drop into bed at night, I am to tired to process a coherent thought. I thought about writing this morning because I didn't have anything on my schedule.  But then I spent an hour scheduling doctor's appointments for five different people.  Good times.  

Anyway, on to the point of this post.  ENTs and plastic surgery.  Now you may be wondering why I am talking about plastic surgery again, when I just talked about plastic surgery two months ago.

Well, after Jack saw the Commission doctors, we saw the ENT that did Kate's first set of tubes, thinking that he would do Jack's too.  Sure enough, he was willing to work with Dr. Andy to do them at the same time as the palate repair, but he was unwilling to do the sedated ABR (hearing test) the same day.  He said he really preferred to do the the tubes and ABR first, and then let them do the palate repair later. 

I nicely told him that if he was unwilling that I would have to take Jack to the other major hospital in town (that Kate is now a patient of) and let them do it all over there.

Suddenly he was a willing participant.

Fine.  So I spent the next two weeks playing phone tag with the ENT's surgical coordinator and Dr. Andy's surgical coordinator, trying to get them to work together.  They finally called me back with a date in the middle of August.

Fine.  So then the next day I got a call from the Commission (remember how much I love them, she says sarcastically) telling me that Jack cannot get the sedated ABR done at this particular hospital because they (the Commission) don't have an audiologist contracted over there.  They wanted me to go ahead and have the tubes and palate done, and then have a non-sedated ABR done in their office at a later date.

Fine.  So I spent the next 24 hours mulling over all of this, and I realized that we were talking about something that was still more than two months away.  I then I realized that this was more than enough time to research other options.  Because at this point, I was fed up beyond belief at having to argue with the Commission, argue with a doctor, and play phone tag for weeks on end.

So, being me, I went into research mode again.  I go to the Rumor Queen boards.  I go to the Adopt Cleft Yahoo boards.  I call people I know locally.  And I learned I had a couple of really excellent options at that other hospital across town (where Kate sees her ENT).  So I made the call to the Commission to request an appointment with the physicians over there.  Of course, they wanted me to wait and go through clinic again.

In August or September.

No, we just went through clinic in May.  I am not waiting until August or September.  I want to go to their offices and see them there.  Now.

And so we spent last Wednesday at that other hospital seeing Dr. V, the ENT, and Dr. L, the plastic surgeon. 

Dr. V was very nice.  She took what little history we had and agreed that Jack probably needs tubes placed.  She explained that because it is such a minor procedure and the palate repair is a much more complicated surgery, that the palate repair would be scheduled first, and then whatever ENT in their practice was at the hospital that day would do the tubes.  Since we are already in there so often and I know how they work, I am comfortable with that. 

Then we went downstairs to see Dr. L.  Now, every time I asked for recommendations for Dr. L, people would say, "Oh, he is the fireball.  You will love him." And then they would go on to tell me how he pours himself into his patients, staying on top of the latest techniques, and is just eager to do his best every single day.

He did not disappoint.  We saw his student first (SOP at this teaching hospital), and then Dr. L came in without a white coat.  Ie, he didn't terrify Jack right off the bat. He takes a bit of history, looks at his palate, explains to me structurally why Jack's left ear is a little different from the right one, notices the stitch that has been in his lip since that repair in March 2011.  He tells me that he doesn't use no-nos on kids this old and that Jack doesn't have to be weaned from his soft-spout sippy.  He notices Kate, asks if he could look at her palate repair.  Kate says no, but I try to persuade her.  He stops me and says, "No, that's ok if she doesn't want to."  Ie, he cares about how patients feel, even when it isn't his patient.

Then he told me that his surgical coordinator was on vacation all week, but that he knew he had an opening on August 28 so if we could get it all coordinated that it would probably be that day.  I am sorry, but I have never known a surgeon to have a clue what their schedule looks like a month out with a coordinator telling them.  Wow.

Then he gave me his personal email address (in case I thought of any other questions) and his personal secretary's phone number (in case I couldn't get him via email).  Again, never had a surgeon do that before.

Oh, and we were in and out in just over 25 minutes (not counting new patient paperwork) and spent about 20 minutes of it with him.  Again, a record.  

So, all that long story, just to say that we now have a new plastic surgeon and a new ENT.  Still waiting on the final details, but it looks like they will do the repair, the tubes, and the ABR all at the same time, and Jack will spend the night at the hospital .  I am feeling good about the whole thing, whereas I had a bad feeling about everything over at the other place, what with the arguing and such.  Those other docs are good physicians/surgeons, I like the other hospital fine, but I think that this is a good place for Jack right now. 

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

• Let the Appointments Begin!
• Appointments, Part 2: Audiology
• Appointments, Part 3: Plastic Surgeons
• Appointments, Part 4: The Dentist  
• Appointments, Part 5: Early Intervention 
• Appointments, Part 6: Speech

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

• Surgery 
• ???