Sunday, January 5, 2014

Big Brother

Sometimes, the complexity that is AJ leaves me breathless.  Sometimes in a not so good way.  But other times, in a state of disbelief.  Because we've had him in our lives since he was three months old {via adoption referral and photos}, we've had the distinct pleasure to watch him grow, change, and break through some pretty thick brick walls.

The last few months have been incredibly challenging for AJ is a physical sense.  His body has been none too kind and has been growing constantly.  His gains have been quiet and consistent, which is a change as he's usually an all or nothing, get the most "bang for my buck" kind of kiddo.

This was the second year he smiled for his class picture.

This was the first year he did not have a Christmas program at school.  This mama was unaware that they stop at 1st grade.  Sniff.

{Cochlear Implants}
Just before school began we had our yearly CI mapping.  When we arrived at the appointment, AJ walked in the sound booth, his audi announced we were going to do VRA (visual reinforcement audiometry) and test him with each CI individually and then together.  I shrugged and said lets give it a shot.  Note: we have not done this type of testing in a long, long time.  This kid waltzed in there, sat down on the floor (under the mark on the ceiling of course), LISTENED, and turned when he heard the sounds/his audi's voice through the speakers.  The visual part?  There are light boxes attached to the speakers with moving/light up cartoon characters as a reinforcement for turning).

We were all thrilled beyond belief.  Gone are the days of his sitting in the special chair with the tray with 10,000 soundless toys to keep his attention.  Gone are the days of me bouncing on a yoga ball while his audi distracted him with those same toys.  He just waltzed in there and did it.

And to top it off, he tested at 25dB across the board.  ACROSS.THE.BOARD.  We haven't been able to get real #'s on this kid for a long time.  It was awesome.  His audi adjusted his sensitivity on both implants as well.  This is what we call his "bubble".  This will enable to him to once again eat in the so freakin' loud lunchroom with his friends.  He will still hear what is going on in the room, it just won't be so overpowering and the focus will be more on what is directly around him.

Since that appointment, AJ has been wearing both his implants with more consistency instead of just the right.  The right is still most definitely his dominant ear, but it is music to my eyes-er, a wonderful sight to see when he purposely puts his left coil back on!! In fact, I may do a happy dance when this happens.  I try not to attract to much attention to my celebrations because I don't want him to stop doing it!  This activity is consistent between home and school.

His school staff has used his sensitivity setting for school assemblies and has seen great results.  We have used the setting for church and have had great success as well.  He's identifying sounds correctly with just his left implant.  Oh how far he's come!!!

{Cerebral Palsy}
'Tis my least favorite of all things AJ right now.  This is the physical piece I was talking about.  He had his last Botox injections in October.  The normal four injection spots in his left leg: adductor, gastrocnemius, tibialis anterior, and his hamstring.  We have gone through three different strains/types of Botox.  So let's call them B1-3.  B1 did wonders for a long time.  Then it stopped. Earlier this year we tried B2 which does not have protein in it.  The thought was it would last longer since he burns them off faster than they are supposed to last {of course}.  It didn't make a difference.  So we are now on B3, and he's had two doses of this thus far.  The wonderful side effect {no really, it is awesome} is that it dries his mouth out a bit so the drooling ceases a bit.

However, this last round burned off in around a month and didn't do much at all.  Other than stopping the drooling.  That it did.  And that little side effect showed me just when it was starting to wear off.  SIGH.  We're at a crossroads again.  And you know we will do everything in our power to avoid surgery.  I have an appointment scheduled with his Physical Medicine doctor (CP doc) to discuss our options.  His muscles are pulling so tight they pull his foot up, so he looks like he's a toe walker- and a mean one at that.  It is extremely painful and now, his leg is not only up but turning in again. His right foot/leg has begun to also be rigid, as it is overcompensating and trying to match the left leg, so he's toe walking on both feet.

My gut says we should trying one more round of botox, with two injection sites instead of the four. We already decided against phenol injections, as 1) THANK GOD he is not scheduled for a surgery or procedure in the near future 2) his CP doc wasn't wild about it when it was mentioned.  She's all kinds of amazing, so I trust her opinion and I wasn't too thrilled with the idea to begin with.  Phenol injections are typically done while a patient is already under (hence the other procedure scheduling). With AJ's history, it is way, way, way too dangerous to put him under anesthesia for 15 minutes to give him injections.  We're upping the usage of his night brace and his TENS unit to see if that will help give him relief.  Also on the docket are having our whirlpool tub finally fixed and of course, his continued deep tissue massages.

Night Brace


We are in for -50 degree weather tomorrow.  Ohhhh my mama heart is so thankful I don't have to take him out in that.  He would, no doubt, have tremendous difficulty walking.  Cold makes his spasticity whip around and say, "Hello old friend! Miss me?!"  This week alone he rolled on his ankle twice walking out of school.  Winter is not his friend. We just keep plugging away.  Right? Right.

Things have been pretty quiet in this deparment lately.  Which is a very welcomed blessing!  He had quiet an active few weeks during the beginning of the school year, which allowed his entire school staff to witness his seizure patterns.  While I am not thankful for the seizures, I am thankful that the staff was able to witness them and now knows what to look for.

Recently, I've wondered if AJ's seizure patterns are triggered by his Botox injections.  Of course, I am not absolutely certain, but this is one small reason as to why I am open to trying one more round of Botox, to see if there is a correlation.  Now don't get me wrong, I don't want my child to have seizures.  But, it may be a process of elimination.  There are some other things we can do for his spasticity (in addition to what we already do) including chiropractic care and/or accupuncture (meh).  This will be a definite discussion with his CP doc.

Back to the epilepsy, he seems to be holding steady. 

{Keratosis Pilaris}
For some, this is a tiny diagnosis and for some it is major.  I would say AJ's in the moderate to major range.  Since switching to "Free" products, including ALL Free & Clear laundry detergent, Aveeno Sensitive Body Wash, Sunscreen, and the Aveeno Baby Lavender Calming Lotion, he's been doing phenomenal.  I bought a different type of "Free" laundry detergent a while back and saw a change in his skin.  I guess they aren't all created equal.  AJ's face frequently breaks out in a rash when he's had something acidic to eat, and the acidity can range from low to high and he'll still break out, but we're able to clear that up with some good 'ol hydrocortisone.  It is such a relief not to see all those tiny little bumps on his skin.

*I am in no way being compensated to like these products.  We just truly LOVE them and they work for AJ.

iPad: We recently changed the communication program we've been using on AJ's ipad.  Since he began using an ipad two years ago (holy smokes!), we've used iCommunicate.  This app was friendly for his staff to use and navigate, but wasn't so AJ friendly in terms of independent use.  So, after much discussion with his SLP we chose to go with GoTalk.  This app is amazeballs.  Ha!  First time I've used that um, word???  I've been programming his lunch choices in so he can tell the staff what he wants for hot lunch every day.  The schedules are much more user friendly and he's getting the hang of it.  He's able to independently navigate his iPad now, turning it on, swiping to unlock the screen, choosing the correct icon menu (usually his Sensory apps) and choosing the app he wants.  If he wants out, he presses the home button and goes to another app.  He's even learned how to get to the start of one of his apps after he's accidentally gone to the instructions page.  Smart cookie.

RPM: Speaking of a smart cookie....  Over the summer, I posted a frustrating post on Facebook. AJ and I had a very rough day due to his inability to communicate.  This still happens, yes it does.  I had met our local RPM specialist at a non-profit event I was working last year.  I had heard of RPM, but didn't think it was a good fit for AJ for several reasons.  She messaged me and the thought of AJ being a candidate for RPM began to swirl in my head.

RPM stands for Rapid Prompt Method.  It was created by the mother of an autistic child.  Now bear with me, as I am explain this at the most basic, fundamental level. It is AMAZING.  To be honest, AJ's RPM journey deserves its own post.  However, I wanted to include the basics in this post.  RPM users go from using the working tool (pencil) to point to their answers.  Their choices are written out on several pieces of paper, with the paper ripping into small pieces as the auditory cue that it time to answer the question.  From here, users use the working tool to trace letters on a stencil board.  From the stencil board it goes to pointing to letters on paper, and then eventually writing or typing.

AJ had his first consult a few months ago and STUNNED us ALL.  This is working for him.  When his RPM provider said, "I'm not sure if he knows how to spell yet, but...".  That word...
YET.  RPM has taught me to stop underestimating this child.  Even when I am doing so unconsciously.  Again, I will go into more detail in another post, but for now, AJ is using RPM at school for math and reading, answering WH questions, oh I just can't get enough of this.  It's been a huge eye-opener and we can't wait to see what he'll do next.

From all of this, we have learned that AJ is a multi-approach child.  Limiting him to one form of communication does not work for him.  What is so amazing is how he uses all of these things together to communicate his world.  Amazing.

Nothing new to report. Hooray!

AJ's been throwing us for a loop with his eating recently.  Time to bust out that Nuk brush and Z-vibe and get at it again.  With all the growing he's done, I know that his entire mouth, throat, etc. feels different, just as the food and liquid going down it feels different.  He gets so much of his overall body awareness and coordination from his mouth and when that's all jacked up, so is the rest of him.  We will keep working on it.  But overall, there is only one food on his NO list, and that is celery.  He's come a LOOOOOONG way.  He enjoys hot/flavorful sauces on his food.  If it doesn't have enough zip, he's generally not interested in it.  He's also quite obsessed with frozen fruit pops.  After a long conversation with his feeding SLP we have discovered that he gets quite a bit of organization from these cold tubes of delight.  It used to be super spicy foods, now its the cold.  We just keep rollin' with the punches.

{Lil' Sister}AJ has surprised us with his attention to things changing around here.  He can identify and choose his sister's voice during his speech time at school.  He continues to watch her videos with us.  We don't want him to forget about her even though she's not here yet. He helped get her room ready.  He likes to play in her room, and steal her shoes.  All in all, the beginning of a beautiful friendship, I think.

1 comment:

  1. As always your post is excellent and extremely informative--but it really reinforces once more what great parents you are to AJ--Some parents won't help their kids with 2 hours of homework and you two work with AJ 24/7 constantly! I'm blessed to have you two as my grandson's parents! Thank you!!


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