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Wednesday, August 21, 2013

check one off the list!

Finally this week we got GOOD news from a doctor appointment!  After a couple real bummer appointments (first with the geneticist, where Dylan was diagnosed with a genetic disorder, and then with the neurologist, when we found out his brain is malformed), we were pretty anxious on Monday morning as we waited to see the Pediatric Craniofacial Specialist at Dornbecher Children's Hospital.  We were referred to Dr. Emily Rose Gallagher because of the concern that Dylan may have Craniosynostosis, or the premature fusing of the plates in his head.  If this had been the case, the only correction is surgery.  I can't imagine the stress and anxiety of sending my baby into skull surgery, not to mention the inconvenience of recovering with months of wearing a helmet!

After a thorough exam, Dr. Gallagher assured us that Dylan does NOT have Craniosynostosis.  Sigh of relief! She was very thorough and explained to us exactly why we should be confident in her opinion, which we really appreciated.  As you can imagine, after receiving the incorrect information earlier about Dylan's brain structure, I'm pretty weary of just accepting what a doctor tells me without asking a lot of questions!

I really liked Dr. Gallagher.  She was patient and spent time explaining in great detail what she saw and exactly what we would have seen if Dylan did indeed have Craniosynostosis.  She was sympathetic to our situation and took the time to gather all of the necessary information and listen to what we have been through up to this point before rushing into her exam.  In fact, as we were driving home from the appointment I actually told Brian I was disappointed that she wasn't someone we would have the need to see again (although I was very relieved at the same time).

However, there was one moment in the appointment that I just can't get out of my mind.  We were talking about kids with Microcephaly, and she was telling us about some other cases she had seen.  Granted, Dr. Gallagher is young, and therefore relatively new in her career (maybe late 30's/early 40's?).  But she specializes in Craniofacial medicine, so if anyone has seen kids with Microcephaly, she has.  She was trying to encourage us by telling us a story of a kid she saw years ago while she was in Residency at the University of Washington, where they have a huge Craniofacial Specialty Clinic.  Well, the amazing thing about this kid was that he had pretty severe Microcephaly (small head), and although he was late into grade school he wasn't showing any developmental delays.  The specialists were all trying to figure out the cause of his microcephaly, but he didn't fall into any of the normal diagnosis's and everyone was amazed by his development.  Dr. Gallagher told us this story as an encouragement that we could still hold out hope for normalcy for Dylan, but the point that keeps bouncing back into my head is the fact that normal is SO rare for a kid with microcephaly.  Our doctors don't expect Dylan to be like the other kids.  They can't tell us if he will ever learn to walk or talk or read, or be able to manipulate a fork or a pencil, or maybe if he will just struggle to grasp the complexity of concepts like algebra and calculus.  But the fact that his brain has missing pieces is a pretty strong indication that he will be faced with challenges.

But I'm going to leave all those worries for another day!  Right now, I'm happy that we got some good news!  And, as I've reported before, Dylan is turning into a pretty amazing little kid and our whole family is falling head-over-heals in love with him!




2 comments:

  1. Yay! you guys have been in my prayers especially since your recent post (i about fell of my chair "dad's in the hospital, husband lost his job, our house is sinking..>!"). So glad at least this bit of good news is encouraging. Sweet picture of Dylan. I love your updates amy! xoxo

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  2. Amy, my prayers a with you, some day I hope to meet Dylan. Casey Stephens

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