I know it’s been a while since I have given an update.  Things have been busy but mostly I have had so many mixed feelings that I wasn’t quite sure how to write them all down.  Sunday afternoon we went as a family to Joey’s basketball game.  PJ was in his stroller sitting next to me.  The ref came over and was making cute baby faces and noises at PJ.  I always wonder if people can tell, I guess I kind of hope they can’t.  Well, the ref could.  He looked at me and told me he refs for the Special Olympics too.  He then said, “He has Down syndrome, right.”  Great.  I fought back tears and just said yes.  I don’t know why it bothered me so much.  I really feel like I am okay with Down syndrome.  But now a complete stranger can tell and it makes sad, not sad because he has Down Syndrome, but more sad because I don’t want it to define him.  I want people to come up and make cute baby faces because he is the cutest little baby ever, not because he has Down Syndrome.  Now I start to think of other times that people smiled and stared at him.  I’m guessing they knew too.

Aside from those feelings, PJ still worries me a lot.  Actually, I have been so filled with fear over this little boy.  He is still making what we now call PJ’s crazy face.  This is the weird face he makes that led to tons of testing for infantile spasms. (Thankfully all test results came back negative.)  But it still concerns me.  The doctors aren’t worried so I shouldn’t be either.  And I know it’s out of my control, that I should just give it to God and focus on what is within my control (which doesn’t seem to be too much these days.)  But it’s hard.  He also hasn’t been sleeping well.  Actually, he went from being the best sleeping at night baby I ever had to not sleeping at night at all.  He wakes up every two hours.  He doesn’t need to be fed, just held.  I am thinking it might be sleep apnea (something very common in children with Down Syndrome.)  He was diagnosed with laryngomalacia back in May but then that cleared up.  (That basically means his larynx is floppy and collapsing on itself which makes this squeaky sound.)  But now he is making that sound again.  He also snores.  We see the ENT next week.  Sometimes I wonder if his lack of sleep is causing him to make his crazy face more.  I don’t know.  I guess that is my biggest problem, not knowing.

Aside from all of this, PJ is still the sweetest baby.  He is very happy and adores his brothers.  The boys are all so great with him.  His physical therapy is coming along.  He sits up perfectly but now we are working on his shoulder strength.  He doesn’t like tummy time, can’t say I blame him with a big colostomy bag and a hernia.  So,he is behind as far as pushing up with his arms.  But he is getting stronger everyday.  Last night he ate his first mashed potatoes and loved them!!!  He is now reaching for me and when I hold him facing outwards he will turn around and try to climb up to put his head on my shoulder.  Love it!!!  He has this fascination with watching Dave.  At night when I hold him he tries to sit up so he can see his dad.  He will look at me and smile and then just stare at Dave while he sleeps.  We’ve been trying to get him to take a bottle so Dave can feed him too but no such luck.

His surgery to reverse his colostomy and repair his hernia is scheduled for February 29.  I am hoping Leap Day will bring us good luck.  Until then, we just need to try to keep him healthy.  (He was in the hospital last weekend for croup again.)  It will be nice to get that over with and put it behind us.   I’m looking forward to summer when we can take him swimming and to the park!!!

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4 Comments (+add yours?)

  1. Wendy Kennedy
    Feb 14, 2012 @ 13:26:44

    Those pictures are adorable! He is the sweetest ever!

    Reply

  2. kelly
    Feb 14, 2012 @ 17:51:14

    There is so much “Kocab boy” in those expressions! He is endearing and that’s what draws people to him!

    Reply

  3. joey
    Feb 14, 2012 @ 23:34:36

    PJ has 2 bright eyes, 2 sensitive ears, 2 strong arms and legs, plus 2 adoring/awesome parents (and numerous loving family members) that will help guide him through his life journeys …

    … ah, and PJ’s tenacious heart for living is the greatest gift for all! Happy Valentine’s Day, dear family 🙂

    Reply

  4. Megan McComrick
    Feb 16, 2012 @ 13:06:24

    ADORABLE!!!

    Reply

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