Monday, December 7, 2009

The sad stuff.

I hate writing about the sad stuff, I hate talking about it and I hate thinking about it. Unfortunately, those are the only thoughts I have right now. The sad stuff.
A week after Roman's surgery he was scheduled to have an MRI that had been twice canceled due to previous sad stuff.
Finally, we were going to learn if Roman has a condition called Arnold Chiari Malformation. ACM is a rare condition but one that is commonly associated with Spina Bifida. The mayo clinic quickly describes it as: Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.
We learned that not only does Roman indeed have ACM, our neuro said he has a "huge" malformation.
So, at best I thought he would have it, but it'd be teeny, tiny, almost non-existent, and in those innocent dreams I also thought it would be something we could forget and never worry about. wrong, as usual.
Our neuro did tell me that this is something we won't need to even worry about or think about until Roman is a teenager. But then the Mayo Clinic wrote this: "Death. When a child is born with Chiari malformation type IV, death is common, usually early in infancy." Now, Roman does NOT have ACM IV but just to stave off anymore premature gray hairs I have concocted the best idea ever! A second opinion at The Chiari Institute of Long Island. This place is FAMOUS. In fact, the only thoughts of "comfort and joy" I am having lately is that this place, and it's world renowned neurosurgeons are going to make sure that Roman is fine, and will stay that way. I have hope, and you should too!

There.. that's the sad stuff. I can't say that I feel much better this time but I'm thankful that I have my blog to cry to.

Now, I can't have you leaving all sad like that. Here is an early Christmas present..
Bridget Reed has done another phenomenal job capturing my kids at their happiest, just playing on the floor side by side. Here is a sneak peek of her AMAZING talent. I haven't asked her permission to post these here, but I don't think she'll mind ;)

I can tell you're are, aren't you? mmm hmmm


  1. Love it. We have hope for Roman, too. Always have. Always will.

    A friend.

  2. As a patient of the Chiari Institute I want to encourage you to not give up hope. They are indeed an amazing, brilliant group of doctors. Know that you are not alone in your journey ~ hang in there ~ Lacie