Sunday, March 6, 2011

What's He Doin'?

Physical Therapy
AJ had another set of botox injections a week ago.  Both in his left leg, hamstring and calf.  To read about the use of botox with cerebral palsy patients click HERE.

This was his second set of injections and I was a bit unsure, considering we never figured out how well the first ones worked.  After seeing his PT last week, I'm thrilled to report that the botox is doing its job.  It seems the dose was just right, and loosen him just enough.  Too much and he'd be more woobly than he already is.  Now is a critical time, where we need to keep him loose and are once again using Kinesio tape on his left leg to deter his leg from rotating in. 

After a lot of back and forth between AJ's PT and his CP doctor, we've also added UCB orthotics to his apparel.  Instead of taking him in to have a new UCB molded, therefore billing insurance, yada-yada, his PT thought maybe there was a way to take apart his AFOs (that we had stuck in a drawer) and use the bottom as a UCB.

After consulting with AJ's orthotists, we took his old hinged AFO (like this one):
(Image from here)

and took them apart.  By using the bottom piece, voila-UCB. 

(Image from here)

They are working well.  AJ remembered what they were and when we only put the one piece on his left foot, he picked up the other piece and handed it to me, raising his right foot.  Apparently, he likes to match.  While he doesn't need both, they must make him feel balanced, and its certainly not harmful for him to wear both. 

Botox usually lasts 4-6 months, but with AJ's super high metabolism, his will last around 2 months.  This is a critical time for consistent physical therapy, taping, the UCBs and using his TENS unit, treadmill walking.  Basically whatever we can do to keep him loose and encourage proper movement/alignment while he's nice and loose.  It is amazing to feel his hamstring loose instead of feeling like a rope.

Occupational Therapy
AJ is doing a great job pulling his own zipper on his coat up and down with the help of a small keychain (bigger surface to grab).  We are dressing in standing every morning, after we pick out our own clothes of course.  Some day soon I hope he'll start to hold on to his dresser instead of me! 

He opened his door by himself this morning, so I'd say we've met that goal.  He's also started opening the screen door, walking out to the porch, turning around and slamming the door in my face.  Lovely.  I'm actually thrilled he's doing this.  His use of a fork is much improved and his cup skills have just skyrocked.  He's showing an increased interest in Mom and Dad's big drinking cups.  Oh boy.  He's now able to lean over the bathroom sink (its kitchen height-so this is a challenge) and reach the knobs for the faucet.  More like touch them.  I give him another week and he'll be able to turn it on himself.  And yes, I actually am excited about this.

We're still working on stickers.  Why the boy insists on crunching them in his fingers I don't know, but we'll keep trying.  He actually doesn't try to eat them or destroy them anymore-so thats progress. 

Feeding Therapy
We're working on what I call Fair Foods and Sides. AJ's had hot dogs, like any other kid, cut up and then cut up again.  He graduated to the dog, cut into regular slices. Now we're on to eating a hot dog in a bun.  He blew me away two weeks ago, when his feeding therapist reported he bit into both the dog and bun-together.  Just the week before we were separating the two to try and get him used to one at a time.  We'll be moving on to burgers on buns, chicken sandwiches, corn dogs, and any other type of mash-up foods that we can think of.  In addition to that, we are working on vegetables of all different textures.  Its definitely not a taste thing, its how its presented to him.  Adding cheese sauce to things like broccoli or cauliflower helps AJ manipulate the food and break it down easier. 

We are increasing AJ's sessions with his feeding therapist (who is an SLP), adding one session per week where we will work solely on SPEECH.   During our last visit with AJ's CP doctor, she voiced her deep concern for re: speech therapy for AJ.  While there is nothing big enough to show up on AJ's MRI, there are definitely some short circuits going on.  He is severely apraxic.  While he is, clearly, understanding and his receptive language is exploding, he has no way to turn it around and respond...turning the input into output.   And he wants to!

AJ had his first tear free week last week. HOORAY!  I'm so proud that he's approaching novel activities with less protesting.  He gets super excited when he sees me packing his lunchbox because he knows that means he's eating lunch at school.  I was a bit worried how he'd do after being off for five days before going back last week-and he did just fine.  HOORAY!

We'll be having our parent/teacher conference next week, which will be chalked full, believe me.  It is an important meeting, with lots of information to cover.  It feels like an IEP, just with less people.  We'll be discussing his upcoming IEP (in two months), ESY, next year, and I have a typed outline updating his school staff on all he's doing outside of school.

We recently saw AJ's neurologist and received the "all clear".  He'll stay on the same medication dose for his Keppra and we'll follow up in a few months.  He was pleased with his walking/stability, his head growth, and he interaction during the appointment. While at the appointment, his neurologists asked how he was doing socially.  To which I replied "horribly".  I shared that AJ's CP doctor and I had had the same conversation, at length, just the week before...where she literally said my child was "socially akward." 

{We know}.  I'll post more on this later.

AJ's repeatedly taking of his coils.  All the time.  It has become a huge problem, and by the end of our day has tested all of our patience.  That's all I'll say at this point.Well, this weekend he didn't do it as much, so I guess I will say that. We saw his audiologist at the end of February and were again, not able to get an audiogram.  We'll try again in a few weeks. 

AJ weighed in at 27lbs at the neurology office, which was super exciting.  He's fitting into 4T pajamas, 2T and some 3T pants (rolled), and 3T shirts.  We haven't seen GI for almost a year and I'm starting to wonder what they'll say when we go in May.  AJ needs to take a complete vitamin and I cannot get him to take them, AT ALL.  Note: The gummie vitamins are NOT complete vitamins.  I have crushed with a pill crusher, crushed it to smithereens with a mortar and pestle, mixed it into yogurt...and he KNOWS.  He just knows.  Sigh.  I will keep trying, but until we are on regular regimen of vitamins, we continue to give him the supplemental drink- Kid Essentials.  He's eating, he's growing, and that's all we can ask for....

I can't think of anything else at the moment!


  1. WOW- HEIDI!!! He is doing great. Seriously. Lots of awesomeness to report.

    Hot dogs with the bun still make me nervous. I am just now letting Mia eat them. Boys= no way.

    Hooray for no tears!

    The "socially awkward" comment could have been phrased in a better way. Of course he is behind socially, he does not YET have enough vocabulary/signs/etc. to communicate with his peers. My best friend is socially awkward and he has degrees from MIT and Stanford. So there.

    So happy to see all these gains in black and white!!! Woot woot!

  2. Thanks for the update! I keep up with you in my reader, and don't visit your site often, but I'm always thinking about you guys!!!


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