Tuesday, October 4, 2011

Fall Update

AJ's been in school a month already and is doing fairly well.  His day is very, very busy bouncing from different staff who are working with him.  Through collaboration between his SLP/TOD/myself, they created a daily log sheet that usually comes home with him daily.  Since there are at least 11 different people working with him on a daily basis, including three different aides, information is much easier to relay via the form.  It also gives me a chance to see how he did i.e. auditory therapy or circle time, if they need more cleaning wipes for his glasses or extra clothes. The back of the form lists his strengths, things he needs to work on and had difficulty with, msgs from his teacher, and reminders.  Genius.

Here is a list of the professionals AJ works with @ school:
Teacher of the Deaf
Regular Mainstream Kindergarten Teacher
Special Education Teacher
Aide #1
Aide #2
Aide #3
Speech Therapist
Auditory Training
Physical Therapist
Occupational Therapist
Specially-Designed Physical Education Teacher

He is currently attending school for about 4.5 hours per day.  We'll be meeting soon with the school staff to see whether we should increase his day.  Because this is his first year going "full days" (meaning not a combination of short & long days) the decision was made to ease him into the routine.  I am astounded at how well he is doing working with so many people throughout his day.  He's transitioning easier from one activity to another and having less meltdowns.  Especially now that we've been unilateral with his CIs.

Unilateral?  Yes.  Well isn't he bilateral?  Yes.  AJ's been struggling wearing both his implants for quite a while.  Since last Spring if we really want to get into the nitty gritty.  We've been unable to get an audiogram with his left implant (which is 1 yr 3 months old).  Yes, still.  And it is by no fault of his audiologist.  AJ simply does not respond like "typical" CI children.  Yep, I'm labeling.  More on that later.

Way too much flipping of the coils, even when his bandana is on.  Something has got to be sounding wonky to him.  But how do we change the maps so they don't sound wonky, when he can't tell us, much less respond to the stupid tones in the booth.  Can you tell I am super frustrated?  I've contacted another audiologist (since AJ's is out on maternity leave) and am hoping to get a fresh pair of eyes, ears, and expertise on the situation.

Last week I sent him to school with his left implant only.  He had the best day he's had of this school year so far.  No flipping.  We've spent the last few days with the left on, then switching to the right.  Something is giving him bilateral summation when he's wearing them together.  I'll be putting both his implants on tomorrow to see how he reacts now that he's had each on individually.  I'm determined to figure this out.  So I guess he flipping was for a reason.  It's AJ way of telling us it sounds wrong and he doesn't like it.

Our appeal with AJ's state insurance was denied.  End of the road for that approach.  Our new insurance denied right off the bat, so we're fighting that, but I'm not holding my breath.  I've given them every thing needed to prove he needs therapy, a hum, that it is medically necessary.  They still deny.

AJ has had one session of pool therapy since the end of August.  Due to schedules, 515pm is the only time he can be fit in, and that is with his therapist staying after hours (He's awesome).  515pm doesn't work for AJ's schedule.  The only reason we got in the one session was because of other patients cancelling, I was able to bring him in sooner.  Even so, AJ decided to single-handedly close the warm water therapy pool that day and we spent a measly 10 minutes in the big pool before he was turning blue and shivering.  The kid just doesn't do well in "cold" water.  There was a 5 degree difference between the pools that day and he was freezing.  Crazy.

So we're brainstorming.  He's regressed-big time.  He's been wearing his TENS unit EVERY night for the last week or so.  He's growing, with his muscles so tight he can't put his left heel on the ground (unless the TENS is on).  There are a number of gyms here that have warm water pools, so we are looking into that.  Last week we cancelled therapy due to the virus he's been battling for almost 2 weeks now.  Which means 1) he didn't get his therapy and 2) we weren't able to get in the pool with AJ and his therapist to learn the specific things they want us to do in the pool with him.  There need to be more hours in the day.

Last week we picked up his new UCB orthotics and his new night splint for his left foot.  Thank goodness we finally got it.  I need to have a major pow-wow with his PT as his mobility is really compromised at the moment.  AJ stands in front of his carseat in the car and just stares because his body isn't allowing him to climb up.  I facilitate a smidge to get him going, which he does, but it is so hard for him.  The other day he slept 145pm to 6 and then 11 to 7am.  Can we say growing?

I was not informed until last week that AJ has not been having OT at school.  This due to the fact that a new OT had not been hired to replace his awesome OT from last year.  There have been lots of changes for AJ's school and district this year.  The decision was made over summer to not have private clinic OT during the school year, so I'm a bit upset I didn't know there was no OT in place.  Yesterday I learned someone has been hired and will be starting soon.  Whew!  I know, I know, things can't be perfect.  But when you have child with special needs, part of you doesn't want to allow these important people in your child's life to do things like take a vacation, or (gasp!) leave.

Speaking of OT, using a pointer finger, isolating that index finger from the rest, is a fine motor skill that is worked on by OT's.  So maybe that is part of why I was upset.  We got AJ's iPad2 a few days after school began.  It.is.the.coolest!  I've loaded quite a few app's for him already and will do another post all about what we are using for him right now.

Yesterday I met with AJ's SLP and TOD.  I purchased a communicate app called Proloquo2Go, which we discussed and played around with.  A few things came up in conversation, which prompted me to email the company yesterday.  Unfortunately, I did not receive the answer I was hoping for.  The program comes with several choices for voices.  They ALL sound like a synthesizer.  I'm totally serious.  It boggles my mind that there are so many other apps/etc that we use for him that have real sounds recorded and even real voices!  So why, a program of sheer sophistication does not have this, boggles my mind.  We were hoping for a "record a voice" option.  They are not rolling out this "product" until later this year at the earliest.

Why is this such a big deal?  A few reasons.  AJ is a cochlear implant user.  This type of sound, computer-generated, is one of the hardest auditory fields for him to hear.  Now, before you get your undies in a bundle and tell me that CI children don't have issues hearing electronics, let me say this.  These voices are REALLY BAD.  I mean, seriously. We all had trouble understanding them.  Words don't sound as they should.  The little boy voice that they offer is Kenny-but it sounds like an underwater smushing of sounds that comes out like a blurry "Penny" when he says, "Hello, I'm Kenny...."  Not cool.

In addition, it is very important to all of us that AJ's voice really sound like a little boy's voice.  Because he's a little boy.  And if this is going to be his voice, then it should sound right.  Not like a smushed or blurry anything.  Lately, he's been making some fantastic new sounds, some of them sound like what for normal children are early versions of words. Like when a child comes up with a name for something and its totally not the correct name.  Different tones.  It makes me smile, and I imagine what he's trying to tell me.  It is usually when he's excited, but it thrills me to hear something different than a whine or shreek.  You have no idea.

We've decided, for right now, to go with a different communication app which allows voice recording.  This program is also a bit simpler and will make his initial choices easier.  We can build from there.   I am also working on creating a set of new PECS books for AJ. His current books are too small and there is no room in the binder to add more pages!  We are also going to begin categorizing his pictures i.e. food & drink, toys, activities, etc.  I'll be making two books, one for home and one for use at school, so we are consistent.

How does AJ like the iPad?  Eh, he likes it.  Somewhat.  He knows what he has to do with a certain light show/firework type app to make the lights move.  He's got the swiping down.  Now we need to work on the pointing.  There is a "read me a book" app that he seems to pay attention to, which requires you to point on the arrow to turn the page.  This has been helping him learn the difference between swiping and pointing.  He's got the capability of using that index finger so we're going to use it!

This appeal to our state insurance was also denied.  Fortunately our primary approved! We have an appointment today and I am anxious to get his clinic SLP's feedback.  I think he's also regressed in this area.  And I'm a bit concerned about his drinking.  So much so I thought maybe he had an ear infection and took him to the doctor last week.  (He didn't).  Maybe he's playing me for fool just because he doesn't want to drink anything except his new favorite juice/water mixture.  I have noticed him having a hard time swallowing/choking on his seizure medicine and sometimes with gulps of liquid.  At his last swallow study it was mentioned that part of his anatomy may be too large and may block/make swallowing difficult.  Needless to say, its been on my mind lately and I'm in the middle of scheduling another swallow study.

He hasn't had too much luck with hamburgers/hot dogs with buns.  Not enough feedback.  So, we toast the buns, and we still toast his bread, to give him some feedback.  The kid still loves to eat.  No worries there.

Our last GI appointment went extremely well.  AJ weighs 27lbs 6 oz.  He grew over 4 inches in a year.  So yeah, he's growing up!  Just not out.  The GI was ok with his status and we don't have to go back for a year.  We also discussed AJ's issues with constipation.  It was decided he had chronic constipation, which was causing the urine accidents he kept having.  All that stool was pushing on his bladder.  Lovely.  We were given a script for Senna and told to use this in conjunction with daily Miralax to keep him regular.  We are still giving him the Kid Essentials-but he doesn't drink it.  Sigh.  So we're going to start mixing whole milk with the KE and see if he'll drink it that way.  We'll keep trying.

I am so happy for Fall, as it is my favorite season.  But I am so sad that means no more hippotherapy for AJ.
He absolutely LOVED IT and most definitely benefited from it.  We are definitely signing him up for it again next Spring.  There is something truly magical about horses.

AJ's little body is going through so much right now.  His sleep patterns are NOT normal and its rare he sleeps through the night. Which is a huge change for us.  He's tired from being sick, tired from growing, tired from battling his overall tightness.  And yet he keeps on moving.  He's regressed, A LOT, which worries me.  Yet he smiles..most of the time.  I'm hopeful that his body will give him a break sooner than later and that we'll get everything figured out with therapies. etc.

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