Bye bye baggy

Written Feb 4, 2012

Timothy has merged smoothly into traffic in the Lee family by demonstrating that he can talk as much as any of us (just what we needed – one more person with an opinion in this house).When he wakes up in the morning, he does a morning monologue, just making different sounds for probably a half hour before we get him out of his crib.  But our favorite thing to do is just sitting down with him and making sounds back and forth.  He looks you in the eye with this adorable look of anticipation and then waits for you to make a sound, and then he returns with a sound.  He is occasionally able to imitate you, but more often he prefers to freestyle with a lengthy ‘ahhhhhhhhh’.  ‘Ohhhhhhhhh’ is another favorite.More fun than the sounds is to watch the changing expression on his face.  When you make a sound, he often acknowledges it by enthusiastically opening his eyes bigger and raising his eye brows.  His mouth is even better.  He is experimenting with a few different looks, from slightly open mouth and shaking head to a crooked pucker (which resembles a crabby Holiday shopper) to the recently perfected tiny little lip pucker.  His variety of facial expressions and shifting lip formations make you feel like you’re watching a facial fireworks display.Timothy is rolling over a lot more recently.  Put him on his back and he rolls right over to his stomach — he is not big on the stomach to back roll at the moment.

Recently, he was rolling to his right from his back to his stomach, and got most of the way over, but his right arm was stuck underneath him.  He started grunting and looked over at me, like he was expecting me to get the jaws of life to rescue him.  But he seemed like he was close to figuring it out on his own, so I just watched (and encouraged).  Over the next several minutes, he kept struggling and falling back onto his back, with elevating grunts and less than sweet looks in my direction.  But on his sixth try, he finally rocked past his right arm and got over to his stomach.  Since then, he has been continuing to roll from his back to his stomach, but now he almost never gets stuck.  Again, just fun to watch a baby work at learning something and then apply it.

Last week, my arms were super tired and I was wondering if I had carpel tunnel or some degenerative muscle issue, and then I remembered that I’m out of shape and have a five month old, and so the more likely diagnosis is aging dad syndrome from carrying a chubby baby around in his carseat.  Interesting that luggage technology now provides us with rolling bags for every occasion and yet I am just as much of a chiropractor’s dream as twelve years ago with our last infant, still dragging thirty pounds of baby and car seat to and from the car with one sore arm.

People have asked about Timothy’s surgery.

The surgery will be on Tuesday (Feb 7th) at Children’s hospital in Minneapolis.

We’ll check in Monday morning for some pre-op work.

On Tuesday, we’ll enjoy a Continental breakfast and then go to surgery at 7am (lucky 7s).

-The follow up colon surgery is called a ‘pull through’ (though I call it a ‘drive through’ because we don’t plan to be there long) and will reconnect his colon to the exit so that the entire plumbing system works as it should.  That will leave a little scar in place of the two stomas (holes) that we’ve gotten used to seeing.

And then it will be bye bye colostomy bag!

-Before they reconnect the plumbing, the Ear Nose and Throat surgeon will put tubes in both ears to drain the fluid that is likely clogging his ears.  T’s left ear canal is very narrow (not unusual for kids with Down syndrome), and so the question will be whether the doctor can get a tube to fit in his left ear.  If he cannot, we will need to consider our options to help Timothy get good hearing in that ear.

Speech development is a critical milestone, and can be a real challenge, for a variety of reasons, for kids with Down syndrome.  So if he has poor hearing in his left ear, that could be a problem, but right now it’s early and is an area that we’re just starting to learn more about.  One step at a time.

We also feel better prepared thanks to our friends the Rebuffonis, whose son Maceo went through this same surgery and who have shared with us their hospital lessons.

We ordered a deep dish pizza from Davanni’s last night for dinner and said to Timothy, ‘That’s our goal — same meal, at home, next Friday’.  He seemed on board with that and so we’re aiming for a quick getaway from the hospital.

The little man was initially disappointed to learn that his Tuesday surgery will prevent him from caucusing with the Republicans, especially given Ron Paul’s appeal to young people (actually, T has yet to make up his mind on a candidate and might vote for Obama if the job picture improves).

We’re still a little nervous about another hospital stay but we’re confident that it’ll go well.

We’ll be good as long as we continue to focus on the goal – getting his digestive system working well and get him hearing better – instead of the potential challenges of the hospital.  It’s easy to get caught up in the details and little issues of the situation (and we will at times) and lose sight of the fact that he should come out of this in much better shape than he is now.  Just keep our eyes on the prize.

Thank you for the kind wishes and prayers.  We feel the support and appreciate it and it’s been amazing to be on this journey.  Thanks also to our friends at Youth Frontiers, especially Todd Hansen and Joe Cavanaugh, who’ve given me flexibility to help and spend time with  TRBL since he came on the scene.

So our goals for next weekend – a ‘yes’ to Timothy in his own crib, a ‘no’ to the bag and one deep dish pizza to celebrate the end of a good week and a baby on board.

Grateful but also kind of hungry,

The Lees

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