Less diagnosis, more complication and waiting.

Since the middle of pregnancy, we have been sent to one specialist after another, all of them saying that there is a potential for problems and complications for Benjamin.  First it was an outside chance of Down Syndrome, among other issues.  Then it was a possibility of craniosynostosis (spelled that wrong in the previous post), or premature closure of the bones in the skull.

As we mentioned in the last post about the whole ordeal, we were waiting on a second opinion, after a diagnosis of craniosynostosis, and praying for a reverse diagnosis, which we were supposed to hear about today.

We got the call a little while ago from the geneticist, and we learned that the diagnosis is pretty much set.  He has craniosynostosis and the next step is to talk to our pediatrician to see who he recommends perform the surgery, which most likely will take place at Wake Forest.  We’ll let you know when we know about the surgery.

Now, however, there is a new wrinkle in the whole deal.  They saw something in the CT scan that has them concerned about a whole new problem.  (I think I’ve heard this before!) They are going to do an MRI because of some concerns they have regarding the corpus callosum, which is a part of the brain that provides communication between the left and right side of the brain, and helps in many other developmental ways.

The next paragraph is for family and close friends (who are probably the only people interested in this level of detail), but feel free to read anyways!

As far as I can tell from my brief research online, (check out http://www.nodcc.org/ for a very helpful overview of possible corpus callosum disorders), the primary issues that involve the corpus callosum are either that it isn’t there (Complete Agenesis of the Corpus Callosum or Complete ACC), that it’s partially there (Partial ACC), that it’s there but notably thinner (Hypoplasia), or that it’s there but in some other way not formed correctly (Disgenesis of the Corpus Callosum).  There is no known cure for corpus callosum disorders. (God designed the brain, and though we have our best people on it, we can’t seem to find a designer/scientist/surgeon that can hang with God…)

They have scheduled the MRI for Monday (a week from today) at 1:30 PM.  Here’s how you can pray:

  • Pray that we would see and experience the gospel (that we have gotten, are getting and will get far better than we deserve, in Christ) even in the midst of this.
  • Pray that we would have the finances to cover all of this.  Praise the Lord for insurance, but we are still scraping the bottom even to pay 10%.
  • Pray that Benjamin will sleep through the MRI like he did the CT scan.
  • Pray that God would guide and direct the doctors, and give them discernment beyond their own ability and training.

Thanks  so much for praying.  God is doing something!