Monday, October 1, 2012

All the Ups

First, allow me to clarify what I meant about how thinking about AJ's future is painful.  It is not ALL painful.  But the detour is initially painful.  You know, your drivin' along and suddenly are faced with a detour?  Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour.  Does this sound familiar?

I think what was the most painful was changing the mindset.  Our journey has not been classic.  I prefer to think of it as unique.  But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life.  The process of changing your mindset is painful.  But here's the thing: I don't care about that anymore.  AJ will be AJ and his life will be full and enjoyable.  We'll do whatever it is he needs/wants.  I worry more about the logistics of this new road of a life-time of care for him.  I know his life will be outstanding.  No doubt.

So, moving on to the ups...

AJ saw his GI doctor in August.  It was so hard for me to believe that he hadn't been there in a year.  First stop, weight.  31.5 lbs.  Woot Woot!  Second stop, the room with a view.  I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window.  And then, AJ was discharged.  Say what?  I was in complete shock.  AJ?  He was busy playing with the otoscope which, why do they have an otoscope at the GI?  Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing.  Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned.  On the days where milk isn't his choice, we give him a Tums.  Yeah, and he eats it.  He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark.  Way to go buddy!

During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff.  I was there too.  The week prior, I had witnessed him eating in the cafeteria. Woah.  Sensory overload and HOLY LOUD.  Yep, I'm that mom that walks around her kids school with her cell phone out.  Really, I have a purpose.  I'm checking to see how loud things are.  After watching him, I immediately stated to his staff that he cannot eat in here.  He's now eating upstairs in a classroom with friends.  His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food.  The staff is very comfortable with AJ's eating style.  This brings me a HUGE amount of relief.  He has a current Feeding Plan on file.  I am one happy momma. 

A few weeks ago I had AJ's CI processors tweaked.  It's been awesome.  Now that we are aware of how loud certain environments are for him, things make so much more sense.  He's no longer hating his CIs.  That's truly the best way I can describe it.  His audiologist tweaked his sensitivity, which has been sooooo awesome.  He's been doing well at school, but still prefers only one ear on the majority of the time.  We saw AJ's audiologist last week-she wanted to know who this kid was in front of her.  When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound.  Holy awesomeness.  He was much calmer during the appointment and when he wandered into the soundbooth, we followed.  He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing.  I haven't been in the booth with him for a very, very long time.  He's never just sat in my lap.  His audi didn't even need toys to distract him.  After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA.  He lasted about 10 minutes, which was amazing for him.  They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally.  Woot woot!!!!  We called that a success and got out of there before things got ugly!  His audi ended up tweaking the sensitivity just a little bit more.  Like, a smidge.  We're giving him 2-3 weeks to adjust and then we'll go from there.  I'm determined to keep on top of this.  It is SO COOL to see him put his own CIs on because he wants to hear.  That is a cochlear implant parents DREAM come true.

I've had to raise the swings on our swingset twice.  I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing.  Which is good, and sorta bad.  It's shocking to us because we've gone years with praying he'd grow with very slow progress.  So its weird to us.  He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad.  AJ is dead-weight when you pick him up-the majority of the time.  Ufta.  He's too big for the infant straps in his car seats.  This all so exciting, and nerve-racking at the same time.  When he grows, he hurts.  For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally.  So, he grows, his bones grow, but his muscles stay.  Tight.  Ouch.  Hurt.  So, growing can be painful for him and increase his tone.  When he grows, its like he's walking in 4 inch heels all the time.  It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths.  Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it. 

Lots of tune-ups, change-ups, and growing up going on!

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