Thursday, August 26, 2010


CP Doctor/PT-Because these two are like sisters at this point.  AJ did have botox in his left calf...over two weeks ago.  It is a very good thing we got the botox when we did, because amidst this ear canal infection, AJ has also been growing.  I swear he's an inch taller each morning he wakes us.  We are trying to keep him loose and marvel at his long nights of sleep.  It is hard to see how the botox has worked since the growing is throwing a wrench into things. 

We did receive confirmation of our appeal being filed with his state insurance, we even received our court date.  The good news is: We no longer need to appeal because we were granted more visits due to the botox injection-enough to take us to December.  We had also resubmitted to our primary insurance company (it was too late to file a grievance on the original denial from 2009). Another blessing: our primary insurance is covering some PT sessions as well. 

AJ is now wearing his AFOs to bed, which has been quite interesting to say the least.  They are intended for stretching.  Luckily, he has enough natural stretch (hold his calf and bend his foot toward his calf) that he doesn't need serial casting...yet.

His PT again mentioned that AJ may be done with therapy soon.  She told me this is remarkable for a child with cerebral palsy.  I know.  He may need intermittment therapy during growth spurts, but overall, he's nearing the end of PT.

Feeding/Weight-AJ has made progress by leaps and bounds with feeding therapy.  I can't even tell you.  He's chewing on his right side, using his tongue to place and manipulate foods vs. using his fingers to place.  He's biting and chewing on the right side by his own choice-which is quite amazing.  He seems to like pickles, salsa, and jalapeno cheddar potato chips.  Whoo!  His trunk is stronger, he's louder than ever, and his oral motor control has improved significantly.  Its always a good thing when his feeding SLP gives me "knuckle bumps" during a session! 

Due to his infection, AJ's appetite has been hit or miss.  I felt my heart sink when he was weighed at Urgent Care that day at 24lbs 4 oz.  He had lost weight.  Thankfully, we have no upcoming appointments with his GI (yeah!) so I don't need to be too worried about what he'll say.  At his ENT's office he weighed 24lbs 7oz (on Wednesday) so I felt a bit better.  Even though I have crazy rules about scales, this time I didn't care.  We'll just keep feeding him.  I do wish that instead of getting taller all the time he'd grow wider.  Te-He.

OT-AJ's fine motor gains and the strength in his hands/arms has exploded.  He can now turn a doorknob, he just hasn't figured out how to turn it all the way and pull back to open the door (which is fine with us).  He now closes doors fully, opens the refrigerator on his own, and his latest-opens and closes the microwave.  It cracks me up.  It happens to be on a table in our dining room (since the kitchen is still under construction) so he just goes to it, watches it when he HEARS you turn it on, waits for the beep and opens the door (he knows not to touch whats inside and I'm always close by-no worries).    He loves playing with painting dobbers and is very close to drawing lines on a piece of paper.  He can handle a scissors, like these, and is learning to cut paper.  His left side/arm/hand has been nice and loose despite his growth spurt, swe are thankful for that.  I always love it when his therapists say "He's nice and loose!"  Yesterday his OT was holding his left arm up and a bit over his head.  He didn't mind at all and his body cooperated enough to allow him to do the exercise.  I was amazed.

School-Starts in less than a week.  I can't believe it.  I bought AJ a backpack in the Spring, because they were on sale. I purchased all of AJ's school supplies in early July, and I highly recommend doing that to all Mom's.  It saved me so much time and worry, especially with his darn glue sticks.  They are always the most impossible thing to find!  His newest addition to his supplies: a lunchbox.  I can't believe he's going to be at school two full days this years.  He's old enough to need a lunchbox...

Tonight is "Meet the Teacher Night" at school.  AJ's teacher has changed this year, but we already know her, so no worries there!  He'll still be in the same area...I guess the arrangement is hard to explain.  He's in good hands!  How about that?!  I'm anxious to see his face when we walk into school tonight...last time we were there (in early August) he lit up like a Christmas tree walking down to his classroom.

ESY-I'm sure you are wondering why I mentioned we were at school in early August. AJ attended Extended School Year (summer school) from late June to early August, one hour a day, two days a week.  We were lucky enough to have 7 weeks of ESY, instead of the typical 5. A huge thanks to AJ's school SLP who took time out of her busy summer with her own family to provide AJ with more opportunities to learn. 

Auditory Therapy-Today is our first session back after a three week hiatus.  AJs new teacher is coming to observe today, so I am hoping he will do well.  He's tolerating both his ears, but has moments where he needs a break, and all this loudness (after a week of no left and only some sound on his right) exhausts him.  Between his hearing and growing, he's been averaging 13 hours of sleep a night.  Today we will be making the decision to continue with auditory therapy during the school year or not.  Jeremy and I would both like to see AJ continue.

Overall-he's doing GREAT.

1 comment:

  1. Hi! I found your blog from a link at To the Max. I was wondering if you would mind if I ask you some questions? I'd rather talk via email if that's ok. I looked but couldn't find your email address on your blog. My email address is paradisefound2001 at gmail dot com Thanks in advance! :)


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