Saturday, May 22, 2010

Double Duty

One of my own personal goals for AJ is to have him blow out his candle on his 4th Birthday Cake.  I bought a pack of candles a while ago so we could practice. In feeding therapy this week, I purposely brought mini muffins so his therapist could see what he does to them...oh, and how he eats them.  He still wants to squeeze and squish mini muffins (and cupcakes) to smithereens.  At one point cupcakes were a sensory activity for him, so I think thats why he still does it.During therapy, we slowed him down and were helping him take bites, or break it into pieces, instead of smushing and then retrieving a piece.  He eats them just fine, although they are a messy food.

Why not put the two together?

This was a great language opportunity for him: eat, more, please, muffin, blueberry, yummy, mmmmmmm, no touch, hot, BLOW, gentle, take a bite, candle, YAY! 
He followed "no touch" very well and realized quickly he wasn't to touch while the candle was lit or even in the muffin.  We used a few candles, reliting each a couple of times.  He's got the mouth placement, just not pushing the air out yet.  He watched me do it, while I encouraged him to do it with me.  I would blow on his face first, and then say "BLOW!".  We used to blow on his face before he was implanted.  It was THE ONLY WAY that we could calm him.  I'm serious, the only way. Now it makes him smile and giggle.  Wow. What a change. 

I think cognitively, he totally got the concept of blowing out the candle.  We continue to work on noise makers, horns, recorders, bubbles, and the like to encourage blowing.  He now makes the mouth placement if I hold up the bubble wand to my face, or his.
Hey?!  Where's the muffin? 

Friday, May 21, 2010

What a Treat

Yesterday I went out on a limb and offered the box of dog treats to AJ.  No, not to eat.  He promptly stuck his hand in, took out one treat, and handed it to Rocky, our German Shepherd.  After initial shock and awe, followed by loads of praise, I offered the box again.  He took out another bone and gave it to Sunny, our yellow lab.  My initial thought was that AJ would put the bone to his own mouth.  No.  He knew the objects purpose.

Rocky, is uber gentle.  I mean if you say the words "gentle" he won't take it.and he'll go lay down.  He's a shep, but thinks he's a puppy and doesn't know he's suppose to host the all the stigmas of shepherds.  He's my gentle giant.  Now Sunny.  He's not vicious either, he's just a bit excited that he's getting treats.  And, sometimes I think he thinks he's getting the last treat ever in the whole wide world.  But with AJ, he was great.  Something about our giant dogs and their precious little boy. 

Today, AJ picked up Rocky's frisbee and gave it to him.  No prompts or anything by me.  We were standing by the door and he just picked it up and gave it to him. Another round of shock, awe, and praise. Rocky is a frisbee freak, so this thrills him to no end.  I give it a day until Rocky is running around behind AJ trying to get him to throw the frisbee.  Throwing is one of AJ's goals @ school...perhaps this may work for both parties.

We followd the inpromptu frisbee giving with a few verbal prompts.  "AJ, give it to Rocky."  To which he did.  No pointing, no visual cues.  Just my voice...and a sweet pointy-eared dog staring directly at him channeling " frisbee" through his eyes. 

I took it one step further and asked AJ to pet Rocky.  He took a step toward Rocky put his little hand on his neck and pushed in a little.  Amazing. 

I purposely did not "model" these activities.  I wanted to truly see what AJ understands on his own.  The dogs have been here since he came home, so they certainly aren't foreign to him.  He knows they are large, take up a lot of space on the floor, and that when they bark, someone is at the door.  If they get in his way, he climbs over them or pushes them out of the way.  Somehow, the dogs are just fine with that, which boggles my mind.  AJ sometimes kneeds Sunny's back like a cat does to your lap.  And he just lays there.  {Sunny's coat also happens to be a great sensory experience for AJ's legs and feet} Although they've been around, AJ hasn't "sought" them out much.  Until now.

Rocky came in the room a bit ago and I asked AJ, "Where's Rocky?"  He stuck out his arm and reached for Rocky.  Today, when I gave him a treat for the dogs, he whipped his head around to look for them. The amount of eye contact he's giving them is amazing.  He's looking to find them, them watching them as they retrieve their treat from his hand.

That, my friends, is called gigundo progress.  And yes, in my dictionary gigundo is a word.

Today: I am proud of all of my boys.

Sunday, May 16, 2010

Post-Op Report

AJ's surgery went extremely well last Wednesday.  They rolled him in at 12:20 and his surgeon came up to chat with us at 3:15.  They got GREAT responses when they tested the device in the OR.  This is amazing considering there usually isn't anything "great" about the left side of AJ's body.

He did much better in recovery and was still snoozin' when we rolled him up to his penthouse suite.  AJ's room was located in the new West Tower at Children's Hospital of Wisconsin.  It.was.awesome.  The floor was bright and cheery-it didn't look like a hospital at all.  The rooms had 2 flat screen tv's, one for the patient, one for the parents.  The couch folded out into a double bed for parents to stay over and all rooms had wireless internet.  There was a family room, which was a place to hang if you needed a break but still wanted to be on the floor.  There was a playroom and a nutrition room.  A whole room stocked with goodies for the kiddies while they were in the hospital. Someone REALLY thought this through-which us as parents truly appreciated.

The staff, as always, was INCREDIBLE.  With Jeremy being an RN, we form this odd relationship with the staff.  Odd but good.  I think of all, the night nurse was our favorite. 

We had an awesome view of Wisconsin Avenue.  While AJ played a rousing game of hold me standing, hold me in the recliner, give me medicine, give me a popsicle, hold me while I sleep, put me in bed to sleep...Jer and I took turns comforting AJ and giving the other a break.  Breaks included, the baseball game, my New Moon DVD (it was very relaxing actually), and posting updates to family and friends via Internet.

AJ woke up from his longest nap (2-6am) and decided to pull down his dressing.  YEAH.  That was fun.  The resident ENT replaced it with a different type of dressing, which had adjustable velcro...that one was even easier to take off.  He thought he was feeling better and went a bit overboard, so after another round of anti-nausea meds and a nice long nap, he woke up to the AJ we all know and love.  He snatched (really he did) his toothbrush from the tray and demanded his sausage, along with signing "eat".  Ok then.  He sat up in bed and watched cartoons.  We left at 10:30am the day after surgery.

I'm still in disbelief he's bilateral.  Really, there's another piece in there?  Hm.  Come June 8th I'm sure I'll be singing a different tune.  I did have a moment in a restaurant today: It wasn't particularly loud, but loud enough.  I wished for a 2nd implant, so that he would be able to hear us in noise, then realized he has one!  A little bit of a brain fart turned into a wonderful epiphany!  We put a new ticker on top of the blog to countdown the days until his 2nd CI activation.

AJ's doing very well. His incision is healing incredibly well and he was off pain meds the 2nd day after surgery.I've been a bit obsessed with his incision, as the first surgery it was much larger than what I was expecting.  This one is smaller and healing at a record pace! We see the surgeon for a post-op visit on Tuesday.

A big thank you to our visitors while AJ was in the hospital!  Both of our Mom's stayed all day with us-which was a great support for Jeremy and I.  AJ's teachers came and brought get-well cards from his friends at school...SO CUTE!  AJ's audiologists came up and visited with us. Pea's Mom came...and brought me Edward!  I mean...she brought AJ a Brewer's blankie, a much needed Starbucks for me, and a card with Edward on it :)  Thank you to everyone's prayers, well wishes, and positive thoughts!  We feel the love people!!!!

I have SO MUCH to update. My poor blog has been neglected. It will have to wait another week or so. AJ's IEP is this Friday, so we're focusing on that. Until then, here's a photo of our little man from today. He's doing great!

Tuesday, May 11, 2010

Twas the Night Before Surgery...Again

There is simply not enough time to backtrack and explain the last few weeks, or months, or whatever time period has lapsed since my last "meaty" post. 

In short, AJ's 2nd cochlear implant surgery/device (left ear) was approved in record time.  Two weeks!  Not only that, it was approved by our primary and secondary insurances, which was a huge surprise and a HUGE blessing. 

AJ's surgery is tomorrow.  Another surprise.  We were scheduled much earlier than we had expected.  Everything has happened at a very rapid pace, which is good...yet crazy!.  Jer and I feel like we are riding the American Eagle rollercoaster at Great America...holding on only with our hands on the back of the cars, hanging on for dear life.  Rickity, unpredictable, unstoppable mixed with one hell of a rush.

AJ's annual IEP is next week.  No pressure, right?  Trying to focus on the both things has been challenging, but we're doing our best. 

I just watched the video we made from AJ's 1st cochlear implant surgery.  Amazing.  He's grown into such a little boy, such a little man.  A little man who recently (the last few days) finally decided to communicate with us.  A little man who continues to defy the odds.  We are so proud of him. 

AJ's activation of this ear will be on June 8th (our 9th wedding anniversary).  Having bilateral implants will give him the opportunity to localize sound (stand on the curb and tell which direct a car is coming from) and to hear in noise (he can't hear jack in a noisy restaurant).  We'll have double the equipment.  A double critter clip.  Double the audiological appointments.  Double the miracle of our deaf son being able to hear.

Tomorrow will happen.  We will load up, drive to the hospital with the Grandmas following us.   We'll check-in, put on the silly ridiculously tiny hospital gown, and ooh and ahh at the blood pressure/PulseOx machine with its fun red lights.  We'll give him the joy juice and walk him down to surgery holding.  We'll mark his left ear and kiss him as we hand him to the OR nurse who no doubt, will probably be the same one he's had everytime he's been there.  We'll know he's in good hands and fill our tummies with breakfast, as we probably won't eat again until late at night.  We'll sit in the cafe until I have that "feeling" that its time to head back up the dreary, very non-comforting waiting room.  We'll do what we do because....thats what we do. 

How's that for simple. 

We'll let you know how it goes...please keep AJ in your thoughts and prayers tomorrow.

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