Parker's Promise

Parker is doing really well- the best he has since his injury.  His surgery 3 weeks ago has been a huge success. (It was a third ventriculostomy where they went into the brain and made an opening in his third ventricle to remove some fluid and relieve potential issue on his hypothalamus) He is more alert, engaged, laughing ALL of the time, reaching further for toys and apparently he is rolling now.  We have been working on rolling for the last year and a half, and he's just... rolling now.  Last week he wasn't, this week he is.  Across the room, across hardwood floors, over blankets and pillows, into delicious cords...  soooo we have been doing a bit of baby proofing this week as well. :)

The surgery was interesting because it was a brain surgery, but it was sort of elective.  The neurosurgeon said "It could really help, it could do nothing."  I had so many questions and so many unanswered possibilities, but I went with my gut and my mother's instinct said do it. Darrell pointed out that this is the first surgery we've done that could actually improve things.  We felt good about it. so we did it. And of course not everything went perfectly, there are some random side effects that no one has ever seen before (of course) that may or may not be permanent.  He has nystagmus now- his right eye will twitch back and forth. But at the same time, I will take my happy, engaged delightful little boy who is making incredible strides right now.

My favorite story with his new "laughing ALL of the time" was last week.  We had therapy right after a doctor's appointment so we grabbed some food on the way.  I got a Chicago dog and got Parker a slice of pizza, but there was a bit of a wait so we did not have time to sit and eat. I asked his speech pathologist if we could do feeding as part of his therapy that day.  He made choices, tried different kinds of bites or chewing...the usual for feeding therapy, but he kept putting his thumb on the roof of his mouth.  Apparently the cheese kept getting stuck up there and he couldn't get it with his tongue.  It was soooo funny (you had to be there) so we kept laughing, and then he would laugh.  Then the next bite got stuck again and he just laughed and laughed.  Then the next bite got stuck and he laughed and laughed.  I really wish I had videoed it (I was out of space).  It was so sweet, delightful and HILARIOUS to watch. I love how often he laughs in therapy and procrastinates by giving hugs to his therapists. :)

Every day new things are happening.  Most good, some not so good (he is a lot more agitated right now and has bit several people in the last couple of weeks including my niece and both nephews and a few of his sweet therapists. SORRY!!!!!!!)

I have been reflecting a lot lately on perspectives when you come so close to losing your son. He is a miracle.  Hands down no questions asked. He should not have survived and most kids or adults
with similar injuries did not.  That is one reason why so many things and side effects baffle his doctors.  We truly don't know what we are going to get- what he will achieve- or what he will not.  But I know this.  He did stay and we did get to keep him.  He works so hard everyday to overcome incredible odds.  He surprises me and delights me and we are profoundly grateful for him.  Is it challenging? Absolutely.  Would I have it any other way? Not a chance.