Saturday, April 7, 2012

Trying this blog thing.....

      Most of you know what an internet freak I am.  When anything new comes my way (ie marriage, conceiving, pregnancy, birth, etc) I will search google for months!  Hard to believe I have never tried this blogging thing- but here it goes.  With the emotional roller coaster I started just two weeks ago I thought this might be a good way to sort my thoughts AND keep our family and friends posted.
     Well, to get everyone caught up- this journey of ours started February 23rd at Mallory's 9 month well-check when the pediatrician agreed with Kit that Mallory's head shape was a little abnormal.  She referred us to a pediatric plastic surgeon.   I prayed every night that her head was just BIG for the next 2 weeks until our appointment.  The surgeon agreed that something may be wrong.   She considered that it was a result of head positioning but since Mallory was a stomach sleeper things didn't seem to line up.  She felt that the sutures on the back of her head may be closed or closing.
     I continued to pray every day for the next two weeks until our scheduled CT scan.  We woke up bright and early to get there for our 7am appointment.  The poor girl couldn't eat because she would have to be sedated for the procedure.  The scan itself went well- she was out maybe 10 minutes and they got the images they needed.  Only 15 minutes later she was eating a sausage biscuit- ha!  She LOVES her food!!!
     Over the next 2 hours or so my stomach was in knots while we waited for the results.  Dr. David finally came in and revealed the scans.   We looked at the images of her head and I was thrilled to see the sutures on the back of her head were open and then she continued turning the images to reveal that the side sutures (coronal) were partially fused on both sides.  Diagnosis: Bi-Coronal Craniosynostosis.  Huh?!?!  I was very confused and for those of you interested in learning more here are a couple of good websites on this condition:
CranioAngel Network
CranioCareBears
    In my head all I could think was "partially fused- maybe that means nothing." until she said, after some time looking at the scans, "The way I see it- surgery is the only option."  The worst case scenario from our original appointment.  It broke my heart thinking about little Mallory going through this- still does.  But I know it has to be done to be sure her brain grows correctly and she develops normally.
     We spent the next couple of hours scheduling the surgery and getting blood types tested for Kit, Mallory, and myself to be sure we have donor blood ready for the surgery.
    It was an extremely exhausting and emotional day and I have more to share that has happened since then but I think this is enough information for now!  Thanks for reading....if you got this far!

About 1 week old:





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