Imagine a rollercoaster.....

You have all these little hills and valleys, some twists here and there, then you start "The Big Climb". So far on your ride it's the biggest hill you've seen. You know there's gonna be a BIG FAST DROP at the top. Right now, I feel like we're at the very crest of our first BIG HILL.

On Tuesday evening we'll bring Angela into our local children's hospital for a full-spine MRI. Kids with DS sometimes have some spinal anomalies and they just want to rule out that her gait issues aren't related to that or any other spinal problems. Nobody really thinks that's the problem, but want to rule it out anyway. You know, cover ALL the bases.

On Weds next week we arrive at Mayo at 12:30, then meet with the Dr Meyer the neurosurgeon and a Neurologist. After that she'll be admitted overnight, then Thursday morning will have an SPECT and Angiogram.

Friday we will know everything we need to know to make a surgical decision. We'll either be going to Boston, Stanford, or hanging out...waiting for.......????????

I keep thinking somewhere in this process someone is gonna say "you are WAY off base here. This isn't MMD, it's just ........." I know that's my own survival instincts kicking in, but still. I have hope someone says someone along the way is way wrong here!

  Leah, many many prayers for you and your daughter durring all her testing.
Mary Grace

I'm sorry, but I just don’t get any of this. You stated that Angela has a significant blockage in her LEFT carotid artery that was not there before and that it is WORSE than the original blockage on the right. That means progressive arterial narrowing, right? Then you say he doesn’t feel any surgical interventions are needed. OMG, this just doesn’t make any sense to me. The danger of a stroke is right there in the facts you stated. I just don't get it.

I agree with Jenny 100%, a second opinion may prove to be much more optimistic and perhaps life saving.

Mar