Playing with Bradley

It's interesting the way life hands you things...or perhaps I should just say that it's interesting the way Bradley hands us things.  We've always been slightly amazed by him, often bemused.  We would laugh because every hospital stay would elicit a new skill from him.  The first time he spent the night in a hospital he came out holding the bottle on his own.  He never ceases to amaze us with these kinds of tricks.  Like he means to temper our concern and worry with our great pride and utter joy at his incredible feats.  He's good like that.

He had the seizure, and then the next few weeks he seemed to throw out more whispered words and he started to repeat counting: one, two, four, five.  He didn't like three, nobody likes three.  Sydney didn't like it when she was little either. ;-)  Have I mentioned yet how very alike they are?

We moved him to a Toddler Bed last week, we haven't slept in a week!  ;-)!  Haha.  After the first couple of nights, he is staying in bed more hours than he's out of it during the night.  Every night he yells to us at 3 am in case we thought he'd left the house or something.  Rock him back to sleep and not another peep til after six when he fusses and we find him sleeping on the floor, or sitting in his rocking chair.  This morning, when I got to his bedroom door he was in the rocker holding a book.  He looked so cute I stood yawning and watching for a minute.  Then he leans forward slightly, lets go with a mighty wind; impressive in one so young.  So it's pretty early so my five year old side quietly giggles.  In the meantime, Bradley leans forward again and here comes the cat, beleaguered and a little flat; out from underneath him.  She was sleeping in the rocker and he climbed up and sat himself down using her as a pillow.  After gassing her, she bailed for higher ground and cleaner air.  As for me, yeah I announced my presence by laughing out loud!

After speech lessons, he decided to ham it up for the camera: here are three of my favorites...

 

His sense of comedic timing is not his only development amazing us in the past couple of days.  As we played last night, Bradley told Daddy he wanted "blocks" but then he told him the colors he wanted.  He stacked and then he pushed them down, all the while signing: block, again, blue, red, ready, or, careful... And with his voice he counted 1-6 repeating us and adding three which comes out as an adorable "free" and four that comes out as a lovely "pour".  But he had more to say, trying to copy words like: steady and careful.  When we were reading his bedtime book, my guy signed the animals he knew even copying the sounds of a pig, an elephant, and a frog.  He loves to make sounds like an elephant, but my favorite was the frog.

Did I cry at the sound of my son's voice?  Yes.  Bradley's sweet voice surrounded me with its warmth, like magic wrapping around me.  I was overwhelmed by how much joy I felt, how proud I was of him, how happy I was for him.  After I pulled myself together and stopped being a wimp - our time with his book was incredible.  We just had so much fun with his book because Bradley was having so much fun giving all the signs he knew and trying to copy every new sign I showed him.  So much fun!

Our little boy is growing up, we knew he would.  We know he's going to catch up on his own time.  It just amazes us when he decides to accelerate his own timeline and pack so much learning into small, powerful bursts!

EEG, MRI, Oh My!

A month ago the girls sat waiting with me while Bradley was with doctors and nurses.  They were a little impatient but they were scared and quick to absorb themselves in anything but reality.  I was the anxious one; I was the desperate one.  I was the one drowing in a new reality.  A month ago, Bradley had his first seizure.  Four minutes, might as well have been four hours... Two minutes of not breathing, turning blue... might as well have been two hundred years.  I rode with him to the hospital, in front of the gurney where he could not see me and I could not see him.  I asked for Oxygen levels, skin coloring...was he sleeping or awake?  I gave all the information I thought they might need - clearly, calmly... Precisely.  The EMT kept asking me if I was OK, I kept answering yes: always saying yes in fear that something was terribly wrong with my son and if I didn't appear calm he wouldn't tell me the truth.  Perhaps I was too calm, perhaps he thought I didn't care... perhaps until he asked for and received the medical history...perhaps only then could he understand.  There is too much to say to be frantic and panicky.  Too much at stake to make a mistake in information, always it's imperative that they get all they need to know about Bradley to make sure no mistakes happen on their end because I forgot to tell them something.

One seizure that rocked our world, our family.  One seizure that led to a CT scan, no fun! An EEG that he was awake for...more no FUN!  And then a push by our very good Pediatrician to get him into the Neurologist to get the EEG read, a sedated MRI and finally the Neurosurgeon appointment to have that MRI read.  Most of it has happened in a month...the MRI happened last Monday, the 12th of August and was a month to the day from the seizure.  They didn't give him a little gas to dilate his veins to get the IV in and make the procedure less difficult for Bradley and his parents.  Nope...they were old school... Mom and Dad got the joy of holding him down with two nurses.  Bradley fought hard, really hard.  He blew the first IV try...the second one took...but then his fear and pain as the medicine burned its way in caused him to yank out the second IV.  No one listens to mom and dad about his uncanny ability to find and circumvent tape in order to remove an IV from himself.  Thirty minutes later, a third IV in place and him asleep in the middle of the MRI, I am sitting on the curb beside the trailer, grateful it was not a hot day or a rainy one.  Eric took the girls with him to retrieve the other MRIs to scan in...though why this hospital particularly needs them I don't see, but I can be compliant.  Besides, should an emergency happen, now there are two places with all of his MRIs on board... that hospital and my backpack.  As for Bradley, he fought on the way down into sleep and he fought his way out of it.  After fifteen hours of no food...when he woke up he didn't stop crying till the straw from his milk cup went into his mouth.  And he came up for air seven and a half ounces later and maybe ten minutes tops, he was quiet and happy to be sitting on Daddy's lap; ready to get down and explore this place and leave it behind as soon as possible.

Thirty eight days after the seizure happened we will meet with a Neurosurgeon at UCLA to have the MRI read for us.  We take with us a lot of worry and some new information.  When we met the Neurologist, we told her he'd never had a moment where he zoned out on us... now we have to say that he has had a minor episode where he checked out on me for twenty seconds and wasn't here.  Not sure where his brain was, not sure what he might have been seeing...but the bottom line is...I have to mention it now.  And I don't know what that means for him.  We have an emergency medication that is always with us in case he has a seizure, we can only hope we never use it.  It's in the backpack, the one that also has his emergency replacement button...we've had to use that.  Now, I always have a can or two of extra Pediasure...cause I have learned the hard way that he won't always try what I find for him to eat when we are out and about.  And I have determined that I better put something in there for me in case he does what he did during our last outing...which is eat his half and my half.  Considering I can miss a meal or ten...that's always the best scenario!  Needless to say, the backpack is getting heavier and heavier - never mind about my food, I can grab a sandwich when I get home, anything to lighten the load!

I try not to worry about Monday, but this time the outcome is not something I can control.  I couldn't control the Fundoplication surgery but I could learn how to manage the button and take care of it and Bradley - so that gave me control back.  Maybe I am controlling.  I didn't think I was...but I must be, because being out of control of this part of Bradley's health right now, is really throwing me for a loop.  And I know that the worry is a psychological burden and it just gets piled up on top of that backpack creating more weight...but it's still there and I can't make it go away.  But I try to visualize Bradley running around healthy and happy, I close my eyes at night and I try to see that image before I sleep and being very turtlesque-like (yeah I know, totally not a word!), I push any other image down deep in my subconscious to be dealt with another day.

As for my little guy...he ROCKS!  He screamed his say and once they left him alone on Monday he started his resilient path back towards his good humored self.  I'm not sure where the road is headed for us right now...not sure I was ever sure; but, I know I was more confident before.  Hopefully, Monday will bring a return of confidence and a whole lot of relief.  Just have to wait...and man, I just LOVE to wait!!!  Where did I put that sarcasm font?

Happy Thursday everyone!