Tuesday, April 6, 2010

A difficult decision

Since Kale's appointment last week, Mike and I have been going over and over in our heads what to do next in terms of Kale and future surgery. His doc said what we thought she would--to start all over again with expanders. She also told us once again to do what we feel is best, even if that means to get a second opinion. Granted, finding one from someone who has experience with Kale's condition is going to be damn near impossible.

We know there is one doctor in Texas who has treated someone with cryptophthalmos (she actually has something called Fraser Syndrome) but we're thinking that no matter who we go to, or who we ask the recommendation will be the same: surgery and expanders.

But then I can't help but think of other parents stories of their kids (with microphthalmia and anophthalmia) and how they've managed to do without any type of prosthetics and they have no deformities. No caved in heads. Nothing is wrong with them at all. Which goes against everything doctors warn us about.

So.

I think we're leaning towards no more surgeries---unless we start to notice any type of irregularities in Kale's growth in his facial area. Then we'll get back in touch with his doctor and go from there. We've been talking and talking about it and while we haven't made the definite decision, it does seem like that's where we're going. Otherwise, we're just going back to where we started from a year ago, and it just doesn't seem likely that anything is going to change. While we're being told it's a medical necessity, we can't help but think/feel it's not. It's all just for him to be able to wear prosthetics at some point. But I have no doubt that ten or fifteen years from now, if Kale tells us he want to go the route of wearing conformers or things of that nature, we will find someone who will make it happen for him. But for now, I think we're just going to try and let him enjoy growing into a toddler. Learning how to walk. Learning how to finally feed himself. Learning how to just be.

He's so handsome and such a happy boy (most of the time, anyway)--and it's obvious how much more comfortable he's been this last month or so without anything in his eyes. There's no redness, no irritation, no crustiness that just won't go away. And his eyelashes are finally growing back!

I just hope whatever decision we make, it's the right one and that we're not taking a huge risk...

3 comments:

Evie said...

KIM, You are a great mom. I just want to add my opinion, so many things in Anthony's life Doctors have told us have been BS. From he would never talk or read or even live (that was a fun one) And he has proved them all wrong. From my standpoint, Dr's are not all knowing, they are all guessing. Do what you think is best for your baby. He has been through a lot. MD stands for Mommy Doctor to me. Sometimes, we actually do know whats best. Kiss the sweet boy for me! Good luck with your decision.

Stella said...

We have been struggling with a similar decision for over a year now, and we just decided to move forward with surgery for Stella to get expanders.

I like to think that whatever choice we make is the right one, especially if it is well-researched, thought out, and if we are trusting our intuition. All we can do is make the best decision with the information we have, and then move forward with optimism. I don't believe in regrets. If the situation doesn't work out well, choose again in the future.

Hang in there, and enjoy watching Kale blossom as a toddler!

- Pauline (Stella's mom)

Heather BT said...

The children whose head's have caved in tend to be the ones who've had cancer, and the chemo and radiation damage the temple bones. Unfortunately, they are the children without eyes that Dr's see the most. I think that most kids with two pros. look more abnormal than if their eyes were simply left closed. If there is one eye, then the pros. are far more natural looking. If you want to see kids without pros. go to bethel china dot org. the foster home our daughter came from. Granted all the kids are Chinese, and Kale is not, but you'll see what it can look like at all different ages.
Hope This helps
H