Wednesday, March 6, 2013

A little bump in the road

Monday we were able to go to the memorial for my maternal grandmother's first cousin Jack.  First cousin of my grandma makes it sound so removed but, my mom's side of the family is small and Jack was more like a Great Uncle to us.  We spent all holidays with the Crawford's and I have always adored Jack's witty and opinionated personality.

Jack passed away February 8, 2013 at the age of 90.  I like to think he's joined my grandfather's and after greeting one another he told them all about my children.  He got to meet all of them whereas, my grandma/grandpas passed away before I had children.  We still haven't shared Jack's passing with Logan because he will be very sad.  He loved Jack.  It's how I know he would have loved my grandfathers. 

One of Dave's fondest memories or perhaps most memorable of Jack was a golf game before my brother's wedding in 2007.  There are some stories we share with many of those present for that game that day that will last a lifetime.

We last saw Jack on Christmas Eve.  A few days before Riley got sick.  I will carry with me the memories of that day as a reminder to appreciate each day we have here.  RIP Jack.

Dr. Knight the first attending that saw Riley came by Monday.  He was here at Healthbridge to see other families as well. It was really was nice of him to take the time to see Riley and check on her.  He was one we trusted.  Someone I felt so comfortable with when he walked the floor.  He works crazy hours and yet he took 5/10 minutes to visit?  CHOC is still such a blessing in our lives.  I will forever be happy that in our worst of times we were there and had the care of so many doctors, nurses and therapists.  I know I say it all the time but, really they are amazing people.

Yesterday was a very rough day for Riley.  She's either coming down with some sort of respiratory illness or has something else going on.  Thankfully, her chest xray was clear.  We're waiting on some lab work to come back and we're just hoping that it isn't anything too serious.  Her heart rate was all over the place yesterday and she would not calm down.  It got as high as 202 which we haven't seen in at least a month.  Thankfully, the doctors and nurses here are very proactive and are treating her with breathing treatments and steroids to keep her airway and lungs open.

Unfortunately, this meant that she had another day off from therapies.  She had a better night last night but, she'll probably just rest again today.

This road is so full of ups and downs.  We try to celebrate the steps forward and appreciate them when they do happen.  The steps back or pauses in recovery can be very very frustrating.  We went from such a great week last week with hr, spacticity and overall demeanor being under control to this.  Sometimes, I wish we could just fast forward a year or mostly I just wish our baby girl didn't have to endure so much.

Yesterday, while in a down moment I opened up facebook.  Right at the top of my newsfeed was a post from Fox11, a local station here in LA.  The story was all about one of Logan's friends Joshua.  They were in preschool together last year and Joshua was one of Logan's "buddies".  His happy disposition always made me smile.  We'd lost touch with Joshua this year as he's attending another school in the area.  Recently, when talking to another preschool mom at Kindergarten orientation, Joshua and his mom came up.  I've been meaning to contact her and this was a perfectly placed reminder.

It was also a reminder to appreciate each day and put in to perspective what we are dealing with and facing.  I need to remember to always encourage Riley and our boys to enjoy each day and live to their full potential.  Sometimes, these reminders come in the weirdest ways through mediums I wouldn't expect but, I am happy that they are there. 

Today is baby Gracie's surgery day.  If you don't remember she's the daughter of one of my friends from high school.  We're pulling for you Gracie!  Many prayers for a successful surgery and strength to your wonderful parents!
Surgery day is here" blog update...  
We hope this week starts to turn around for Riley.  No matter what situation you're in seeing your child sick stinks!
Dave, Megan, Logan, Mason & Courageous Riley!

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