Orthopedic Specialist's Diagnosis/Prognosis

It's been some time since my last post and I believe I still owe a post explaining why we chose to adopt. I will save that for later.

In the meantime, this past Monday she had her initial consultation with the specialist and our hopes of her condition being better than we thought were somewhat dashed.

Here's the lowdown:

Scoliosis - hemivertebrae
Syrinx
Hemicords, Bomi Bai ?
Diastomatomyelia

What does this mean? What we were told is that the only positive thing we have to go on here is that she is moving around, able to stand and will be walking in the next few weeks...surprisingly. He is amazed that she is not paraplegic.

However, her condition is quite severe and if left to itself, she would likely die of lung failure before reaching 10 years old.

It is such that the spine is developing in a way that it is split at a point and then comes back together. At that point of the split is a sack of fluid. All of this in combination of her spine curvature.

Bottom line...she will be needing surgery as soon as possible to start correcting this. Otherwise, over the next 2 years, the lungs will not be allowed to develop properly, along with other vital organs.

We're waiting to see a neurologist to determine when they should sever the spinal cord during these procedures. Also, the specialist just wants someone else's opinion from that standpoint.

Our fear is that she's moving around quite freely now and almost able to walk. By messing with the chord, we're hoping she won't be left paralyzed.

We're told that she will be receiving surgeries at the rate of every 6 months and a team of other doctors will be in on the process.

Apparently, we will get to know them all very well over the next 20 years.

As with anything like this, it's always advisable to get a second opinion, which we plan to do. Not that we don't trust this specialist. It just would be foolish in the medical world not to, especially when we're talking about serious procedures.

Emily is extremely happy in her new home. Her serious looks have been replaced with laughter and teasing. She mimics Andrew's words and it will be no time before she is in on the conversations.

I'll keep you all posted as we move forward.