Category: family

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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!

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Here’s a lighter look…

So, if you’ve been around me (Ben) for 3 minutes or longer, you might find that I joke a lot.  One of my goals when meeting new people is to figure out a way to make them laugh.  Because genuine laughter (as opposed to courtesy, nervous laughter) is the ultimate ice-breaker.

Having said that, there are times that jokes just aren’t appropriate.  But as we have been dealing with the news of a diagnosis of craniosynostosis (the premature closure of the bones in the skull, for those fashionably late to the conversation), I have found that one of the most therapeutic things I can and have been doing is joking about it.  I have started to say that my son is just “too closed-minded,” because, well, that’s a funny way to say he needs surgery to open up his skull a little bit.

Crickets….

Yeah, so I am learning that me joking about an otherwise serious isue is only really funny to me.  But its good for me to at times lift up the heavy blanket that is on this situation, and tell a joke.  It may be awkward for you folks, but that’s the joy of a blog.  We don’t have to deal with you awkwardly not knowing how to react to me joking about a surgical procedure on my son’s head.  I can tell you how you should react. 🙂

Here are a few pointers:

  1. Let me do the joking, unless we are really close friends and it is just you and me.  It’s not funny for anybody else.  Not even my wife. (though she understands and puts up with me joking about it, she will start crying if you do, and then we are in Awkwardville, population 3.)
  2. Laugh.  When I tell a joke, it’s OK to laugh.  I understand if you just don’t think it’s funny… but if it is funny to you, you can laugh.
  3. If you don’t know what to say in a situation, or how to react in a situation, it’s better to acknowledge that fact (out loud) than to just be awkward.  This applies to any interaction with us during this waiting period.  We think about the surgery enough.  When we are hanging out with you, we’d like to think about you, and how we can be friends with you.  So, henceforth in dealing with us, if you want to acknowledge you’ve read the blog and are keeping up with what is going on and praying for us, but you don’t want to be friggin’ awkward, do this:  Just say that. You can even use the word “friggin’” if you have talked it over with the Holy Spirit  and He’s cool with it.  Then, from that point on, we will do our best to move the conversation to something lighter, like Carolina basketball or International Business, or the process behind making falafel.

That’s all the pointers I’ve got, for now.  But in closing, because it’s my blog and I’ll joke if I want to, I have come up with the following two potential one-liners having to do with the possible diagnosis of a corpus callosum disorder (the partial or complete absence of the division of the brain that connects the two lobes).  We’ll find out the diagnosis after Monday when Benjamin goes in for an MRI.

  • “My son can do all of that with half his brain tied behind his back”
  • “We gave the other people a 250 million nerve-ending head start, and we are still whooping them.”
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Little Man Update

We heard back from the Plastic Surgeon (more baby-head-surgeon than celebrity-face-lift surgeon, in case you are concerned) who is going to be doing Benjamin’s surgery, and wanted to update and let people know that we have a consultation on September 2nd.

The surgery (and therefore the consultation) is going to take place in Winston-Salem, at the Wake Forest Baptist Medical Center.  That works out great, since my (Ben’s) parents live there, and it gives us the ability to just focus all of our energy on being patients in the hospital, without having to play hosts at the same time for all the parents who will (hopefully and expectedly) be in town for the surgery.

The receptionist at the plastic surgeon’s office, though, probably thinks I am an idiot.  I had a lot of trouble trying to verbalize the question “How soon after the consultation do you expect to schedule the surgery?” without it coming across like I wanted her to do an over-the-phone consultation meeting right then with me.  Finally we found a common language (English, it turns out) that enabled her to answer that there is no way of knowing before the consultation how soon they will schedule the surgery, but that we could probably expect it to be at least a week later.  So, it looks like we will become intimate with the 141 miles of I-40 between Asheville and Winston over the next few months, between consultations, surgery, followups, and the like.  Good thing gas prices aren’t high, at all.  (Note healthy dose of sarcasm)

Please continue praying for the MRI, which takes place on Monday at 1:30 PM EDT.  We can definitely feel your prayers in a way that I never have before.  Thanks so much for really showing us what it means for others to bear our burdens.

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A few different days of video all spliced together.  Helping you remember how cute our little guy is in the midst of all this doctor madness.

Also of note is the hyperactive synthesizer music on his little rainforest.  The guy that produced that stuff went a little crazy.

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Headed to the Hospital.

On the bright side, a few weeks ago if you had said to meet in the radiology department at Mission Hospital, I wouldn’t know where that was.  These days, I could get there blindfolded.

We are getting ready to pack little Benjamin into the carseat and head over to the hospital for his MRI.  We are still praying for him to sleep through the whole deal, so that we don’t have to sedate him, but rumor has it these things can get a little loud and clangy.  Pray that God would have him stay asleep and still all the way through it.

We’ll keep you posted through the day of how things turn out.  Now I am going to play my drum beside him to make him used to loud interruptions in his nap.

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