Little Man of Mystery

I have mentioned in previous posts that our little guy has special needs, but I haven’t told you a whole lot about what they are.  Little Man’s official diagnosis is Apert Syndrome, which caused his skull bones to fuse earlier than they should have in the womb, and also affects his hands and feet, usually causing fingers and toes to be tightly fused together.  He had surgery on his skull when he was a few months old (poor little guy), and that took care of things for the time being.

Back in December, our agency sent us a bunch of pictures of LM, including some of his hands.  (Get ready, you are about to see a never-before-shown photo of our guy!)

We were a little confused, even back then.  His hands look great, right?  A little unusual in spots, but very functional and not at all fused together.  We guessed that perhaps his hands had been only mildly affected, but that he had already had surgery when he was a baby to correct them.

A couple of weeks ago we received our official referral (by the way – yay!!!), along with his complete medical history.  In fact he did have surgery on one of his hands last year, but *not* to separate fingers; it was to correct a different issue.  There were a few other things not quite adding up, so I started asking questions.

An Apert syndrome group I joined on Facebook pointed me in the direction of a leading expert on craniofacial syndromes in Dallas.   He was kind enough to take time to reply to my email and give me his opinion.  In short, he doesn’t believe, based on the photos and a bit of medical info I sent, that Little Man has Apert Syndrome at all.  His best guess, without actually examining him,  is that he has a “milder Type I Pfeiffer Syndrome“, and that he would probably be a “pretty normal kid”.  Except for being extra cute, of course.

Not Apert Syndrome.  Huh.  This is a lot to process, but it is most certainly good news.  Whatever he does have, even if it is a mild form of Apert, it is not as severe as what we had been expecting.  We will almost certainly not get any real answers until after LM is home and we can get him to a craniofacial team here in the States, but we are thankful that he may have an easier time of things in the long run than we originally thought.

 

9 thoughts on “Little Man of Mystery

  1. Oh, Jodi! I haven’t commented in forever but I’ve been following along.

    It sounds like great news…but regardless I’m just so excited about your adventure of a little boy! Praying miracles and great things for all of you!

  2. Wow 🙂 So excited for you all and so sad to be missing being near you all right now!

  3. Thankful to hear that you have a doctor…and that the medical insight seems very encouraging…I read about Type 1.
    What I love most about meeting your family and meeting LM is the–
    Unconditional Love.
    A child seen through His Father’s eyes.
    Thankful that God is joining LM with your family…he will be so blessed.
    But–(one of our adopted little ones had major medical issues)…you’ll probably find that LM is actually more THE BLESSING.
    And I can already sense you heart sees him that way already.
    It’s beautiful.

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