Blindsided!

Today I got totally blindsided. I'll try my best to make a long story short.



In June we met with the Craniofacial Team and a Genetics specialist was on the panel. He examined Austin and said he had two possible concerns, aside from the OBVIOUS; 1. the hair pattern of his eyebrows and 2. his cervical spine because he tilts his head.

1.) So immediately I said "we are a hairy family" so the eyebrow thing I was not too concerned with - he let it go. But did not tell me WHAT the possible issue was.

2.) He ordered a set of spinal x-rays, but did not tell me what they were looking for.

It turns out I have a cervical disc issue, a few years ago my Chiro was concerned about it. I did the MRI, saw the Neurosurgeon he recommended therapy and drugs but no surgery at that time. It has given me problems for many years but I ditched the drugs and just learned to live in constant freakin pain with it. So I figured MAYBE that is what this guy was looking for to. But I never told him about my issue, he just made his own observation of Austin and concluded that he needed x-rays to verify whatever he was thinking.

Stay with me, its coming...

So now it's almost 2 months later and still no word on those x-rays that we did back on that fateful day in July - you remember, the one with the MBSS and the lady who yelled at me. Today I called the genetics counselor to ask about the spinal x-rays. We have a fairly good relationship so I am complaining that no one called me to follow up on these x-rays. Then we discussed Austin's Fundraising for CCA and about letting other parents know about Craniofacial Acceptance Month.  We also talked a bit about some new genetic test for BOR and whether it might be beneficial for Austin. Chit chat, chit chat, chit chat...meanwhile, she pulled up the Radiology report on the spinal x-rays.  She started to speak and then stopped mid-sentence and said she needed to have Dr. Genetics review it side by side with the films.

RED FLAG!!

So I persisted and said, "if you need to review it that means it shows something bad, right?" She said, "not necessarily it could be something they are already following. The report says Austin has an enlarged heart." WTH?? Never, ever has anyone mentioned this, not even in passing...so of course now I am freaking out!

And of course I Googled it...bad idea. Don't Google it.

She promised to call me by tomorrow once she tracks down Dr. Genetics to review it. After this new finding I am REALLY ticked off that no one bothered to read the report until today and never notified me of a possible heart issue. ARGH!

After conferring with a few of my P2P moms I am now calmly waiting for that call, during which I will calmly ask for an Echo cardiogram and EKG, and then I will calmly await the results.

Then, I reserve the right to totally freak out!!!

Thanks for peeking,