Friday, March 30, 2012

End of March

Stephen and I are "vacationing" right now at Mimi and Poppy's house in York and enjoying some time away from our normal every day routine while Bill is in Florida doing some work and golf.  I don't have a whole lot of new information to share yet regarding Stephen's transplant except I can share that we've had three more individuals complete the initial antigen (cheek swab) test to see if they are a match to be a living donor for Stephen.  And we're just sitting tight for now waiting to see how things fall in place.  We do go up to Philadelphia next week for a visit at CHOP that we're excited about.  It will be our first appointment with the combined kidney/liver clinic; the only one of its kind in the country.  It's really geared toward kids with ARPKD/CHF.  The ARPKD is the disease that affects Stephen's kidneys and CHF (congenital hepatic fibrosis) is the disease that affects Stephen's liver.  We did some special lab work last week pertaining to Stephen's liver function that the liver doctor at CHOP requested a while back, so we'll hopefully go over that and his most recent kidney lab work as well.

Right now Stephen is most interested in standing and learning how to walk.  He wants to be down with his feet on the ground at all times! He hasn't yet taken any steps on his own, but he's getting there.  But just a few minutes ago I glanced down at the monitor and noticed Stephen wasn't in the screen.  I went upstairs to check on him since he's supposed to be napping and clearly wasn't and there he was at the far other end of his crib on his tummy!  This is a definite first for him!  He hates being on his tummy and has still not been able to crawl.  So obviously he had rolled himself over and crawled backward down the crib.  Which is very exciting for me!!!  His gross motor skills are where he is most developmentally delayed, but slowly but surely he'll get there.  Karen, his physical therapist would be so proud!

I was so excited when I saw him on his tummy, I grabbed my camera and snapped a picture

Not much else to report right now.  Stephen's moved from eating baby food puffs and cheese curls to saltines and goldfish.  It was the weirdest thing.  He went from eating an entire can of puffs to none! But decided that no-salt saltines were his thing.  They honestly taste like cardboard!  And with no water or juice...yuck!  But it's what he likes right now, so he can have all he wants!  Oh and his verbal communication is starting to pick up as well.  His favorite words right now are "da da," "bye bye," and "ball."  The "B" sound is definitely his favorite.  But he's also starting to pick up some of the "P" sounds like "paw "paw."  And every once in a while he'll say "momma."  But Daddy is definitely the favorite!!!!

Here are a few more recent pics of Stephen from the past two weeks

1 comment:

  1. Hi Lindsey,
    So happy to see your post!! Glad to hear that all is going well. I am sure Poppy and Mimi are having a great time with you and Stephen. He looks absolutely wonderful. The pics are adorable. I can't wait to show them to Uncle Dick.
    Love and Hugs to all....
    Aunt LuAnn