Monday, November 14, 2011

Doernbecher and Decisions

Today is Nolan's cleft team visit. We're down to yearly visits now thankfully - he is doing so incredibly well. I like to say Nolan is the poster child for cleft repair and I don't think that's exaggerating. His speech is excellent and he has had no therapy at all. His hearing is good although he has had a few problems with ear infections. His lip and nose look so good most people have no idea he wasn't born with them.

But he remains under the supervision and care of a team of the best craniofacial experts Oregon has to offer, and I may flatter them a little by saying perhaps some of the best in the country. I have seen many, many cleft repairs and Dr. Kuang's work is definitely top-notch. It has been my great pleasure and great amusement to tell people who comment on how cute he is that he has a fabulous plastic surgeon. You should see them attempt to assimilate this information and figure out what on earth it could mean.

Though he is doing amazingly well I am nervous about today. For one thing his recent trips to the doctor have brought out the worst of his defiant tendencies and he already declared this morning that he doesn't want to go. Packing emergency supplies in the form of Halloween candy as bribes to hopefully keep him going. He sees five different experts this afternoon. Not sure if the pediatric dentist is on tap for today...better hide the candy if so.

For another thing he always seems to have nightmares after a visit to Doernbecher. Everyone says babies don't remember their cleft surgeries. I think he has some sort of sense memory tied to that hospital that causes him to unconsciously know something painful happened there. I suspect the awful smell of the hand soap they use as the culprit. Scent is powerful. Seriously, read Jitterbug Perfume.

And finally, I am wondering about another surgery in the near future and the worst part is, Shaun and I have to make the call. His plastic surgeon stated a year ago that if we wanted to do another rhinoplasty to straighten his nose and round out his nostrils, we should do it before he starts kindergarten.

I waffle on this. Everyone says he looks great, and I agree. He does look great and over time his nose has become less flat. His nostrils are still oddly shaped, but his lips are very good. It's not that I care about imperfections in his face, they are as dear and as loved to me as every part of him. He is perfect now just as he was perfect when I first saw him and his cleft.

I am not willing to pretend though that everyone will always see him as I do. And I know that as he grows older the kids will get crueler. I have been there. Kids don't need much excuse to make fun of someone, and when there is an excuse they are all over it like adorable little thoughtless vultures.

I don't want to put him through a surgery he doesn't need, but I want him to be happy and I want to avoid as much of the pain and struggles of the teen years as I possibly can. I know I have been over and over this; I am sure I have already blogged about this. But I am still there, in mommy limbo. And the decision needs to be made soon, before open enrollment ends for health care this year; if surgery is on tap we need to consider higher coverage levels.

I laughed the other day while telling my sister in law, who is pregnant with twins, that the worry doesn't end once the pregnancy is over. It goes on and on. I know that my mom still worries about me; she's probably worrying about me right now. It's what we do. So whatever decision we make, there will be worry. Worry about surgery or worry about future teasing? I don't know.

What I do know is that I love my little guy, in spite of the fact that he is probably about to put me through a miserable afternoon of feeling like a failed mommy and being stared at by other parents whose kids aren't refusing to get on the scale or whatever it is he will be defiant about today. I just want what is best for him, like we all do. But what is that? Does anyone really know?

1 comment:

  1. I wish you luck with the Halloween candy...the decisions that come...and will be here to offer you friendship, support and babysitting help :) for whatever may come your way!

    Hugs to all of you today!