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Sunday, November 7, 2010

Mikey Update 11/7/10

I know this is long overdue.  I was hoping to have more information, but information is slow in coming.  Here are the highlights.

Mikey has a chromosome 6 duplication.  Two genes are affected.  The geneticist has no idea what this implies.  This variation could be causing all, some or none of his medical problems.  She's leaning toward some long-named syndrome that basically means parts of his body didn't receive enough blood while he was developing.  We're still waiting on more test results, but we'll be lucky to get them before Christmas.

The neurologist is convinced there is some syndrome there, but she doesn't know what.  Mikey's having an MRI on 11/19 to see if we can see anything.  He's also having a hearing test because she thinks he might have slightly less hearing in his left ear.  He will also have his endoscopy that day - while he's already under - to see if we can see a physical reason he a) has trouble digesting formula and b) isn't gaining enough weight.

His heart surgery (hole repair) is scheduled for 12/1.  (For those of you who heard it was 12/8, it was; we moved it farther away from Christmas.)  His poor weight gain could be due to the hole.  Additionally, we just found out his heart has, in the last two months, become ever-so-slightly enlarged.  This is not cause for concern right now, since his lungs aren't affected.  The finding does support our decision to operate.

In other news, Mikey had a great birthday.  Much of our family was missing, but our friends rallied and filled out the celebration.  Our one-year-old little man still looks like a baby but acts so much older than his year.  He brings us new joys and laughs every day.  If it weren't for all the running around to doctors and therapies and whatnot, we wouldn't know he had any challenges.  He's happy and smarter than smart.  He smiles and laughs all the time.  He's very much into putting things into other things, taking them out, putting them in, taking them out, putting them in...  He's eating a greater variety of baby foods every day.  Today he even ate freeze-dried apples!  I hope he'll be eating "real" food very soon.  He loves to stand holding on to things.  He walks holding our hands.  He signs "more" and imitates all of us, including Ellie.  Last week he said "bummer" and "boom" after me.  He and Ellie go back and forth in the car saying "no" and make each other laugh.  Mikey's favorite things are books, dogs and birds - all birds, and both he and Ellie love owls.  It's so neat that they have a common interest.

It does seem as if Mikey matured overnight.  Of course, I've had that thought a lot lately, so maybe he did!  Whatever the case, our little boy is entering the toddler realm, an exciting prospect!

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