The Journey of a Sweet Little Boy and His Special Heart

Sunday, July 14, 2013

Buzz Lightyear to the Rescue

We live in a world of make believe around here, never a dull moment!
Logan lets us know daily whether he is Buzz Lightyear, Lightening McQueen, or Logan G, and we have to refer to him by the chosen identity for that day.
We have wondered at times if this is "healthy" because I am telling you he will not answer to Logan if he has decided to be someone different, and every word that comes out of his mouth will be in reference to his character.  We never just brush his teeth.  We are either putting Rusteez on McQueen or washing Buzz's helmet.  We need to eat our meals so we can drive fast and win the Piston Cup or have energy and power to fight the evil Zurg.  The whole family takes part in this make believe world and we are assigned characters (we never get to choose)!  Brad is most often Woody, I am Jesse, Tanner is Slinky the dog and Ashlyn rotates between being Jesse or Bullseye depending on if I am around.  We also get assignments of being TowMater, Sally, Doc etc. 
But Logan is ALWAYS McQueen or Buzz... nobody else is allowed to fulfill this role.
It is so fun watching his imagination run wild.  He plays with toys ALL day.  My coffee table is anything but a coffee table.  It is Andy's room and stage for all the Toy Story characters or a track for McQueen and Mater to race on. 
This make believe world has literally come to the "rescue" so many times.  At Logan's last appointment in June we were able to do an entire Echo NON-SEDATED.  This was huge for Logan.  In the past he had a melt down when they just tried to put stickers on him.  We practiced and worked with him leading up to the appointment, but it was the promise of this new Jesse toy with a pull string that talks that got him through the Echo.  (Being non-sedated was so important because we needed to get real numbers on his heart function to see if the last numbers were lower because of the sedation meds.  His function looked a little better this time so we are moving in the right direction.)
 He is even smiling as he lays there trying to hold still!
 He first saw this Jesse at a neighbor's house and he wouldn't let it out of his hands the entire time we were there.  Then later that day after he woke up from his nap he kept trying to go outside.  I finally figured out what he was trying to do and he was trying to go back to Sam's house to get her Jesse toy.  He wanted his own Jesse so bad.  So I told him maybe we could buy her for our next visit to the hospital.  I made the promise before I learned she is not sold at any local stores and was a whopping $45 online!
Getting through an echo non-sedated was totally worth the price!
Did I mention he still wants to wear his Halloween costume on a daily basis.  It is this thick Vinyl Buzz Suit that he will still insist on wearing on 100 degree days (or right now it is 9 am Sunday morning and he already has it on).  When I take it off him he cries and says, "No me want to be Logan G. now me still want to be Buzz." 

 The most important part of his costume is the buttons.  He pushes the buttons on the front and says the same things his toy would say.  "My name is Buzz Lightyear, I come in peace.  This is an Intergalactic Emergency."  And most important he goes around shooting us with his laser.
 I have learned to capitalize on this in a few ways.  Every Space Ranger needs oxygen to survive in outer space.  So when he fights me on his oxygen I tell him he can't be Buzz without it.
And the pulse ox charges his Lasers with the red light.  So when I need to check his oxygen levels and he won't hold still I tell him his lasers need charging.  (notice the not so awesome number (73% on 1 Liter of oxygen... gah)
 As I was up until almost midnight with him last night (he napped late and wasn't tired at bedtime).  We rocked and sang songs and read books and had snacks when the rest of the house was asleep.  I kept thinking I shouldn't be letting him get away with this, he is going to want to do this every night.  But it didn't stop me.  I just smiled and cherished the moment and sang a few more songs with him (how can you not when he is snuggling willingly and every so often will just look at me at give me a kiss).   How am I ever going to discipline him and not spoil him so much?  It is hard for me to not let fear of the future and worry about the "what ifs" consume me.  I kept looking at him last night and wondering how long do I get to keep him. 
I prayed that it will be a really, really long time.

Thursday, July 11, 2013

I think about blogging all the time....

But some how there always seems to be something else that has to get done.  And then before you know it you are two months behind in updates (or in the case of my family blog years behind).  How can time seem to go so fast in some aspects of life and so slow in others.

This is a glimpse of my evening tonight. 
My cute Ashlyn took Logan outside, hooked him up to his portable tank all on her own, and followed him around.  Logan had his "Tow Mater" and "McQueen" fisted in both hands. 
Sometimes I want to complain that life isn't fair, but life is good. 
It is amazing what becomes "NORMAL"
This is our normal, and I have learned to be "okay" with it. 
We still don't have a lot of answers in regards to Logan's heart and the ever looming surgery that hangs over our head.  But right now this new medicine seems to be helping, and the oxygen helps a ton.  He is growing and happy so we are taking it one day at a time.  And as long as Tanner doesn't try to play with his McQueen we are O.K.