Saturday, January 21, 2012

A New Diagnosis, Plus...

It's early Saturday morning and I'm up watching and listening to the snow plow on our street.  I find them oddly fascinating.  I know.  Weird.

So, let's start with the new diagnosis.

AJ has functional scoliosis.  He has what?  Here is a short definition from this site:

Functional scoliosis: A structurally normal spine that appears to have a lateral curve (scoliosis).
Nonstructural scoliosis involves a temporary change of spinal curvature. This is caused by an underlying condition such as a difference in leg length, muscle spasms, or inflammatory conditions, which may produce muscle spasm. Functional scoliosis is treated by correcting the underlying problem. The spine itself needs no treatment.
Functional scoliosis is also called nonstructural scoliosis as opposed to structural scoliosis in which there is a fixed curve of the bones of the spine (the vertebrae).
You may remember Rona from this post. We're scheduling him for outside therapy appointments when he's off school and it just happened to work out that she was going to be at his clinic doing consults.   We beat the snow and were able to see her yesterday for a consult. He had a rough start to the appointment...he thought he should spend the entire time in the net swing.  He always has a rough time getting out of that particular swing because it calms him and turns him into a loose noodle.  
I also think he is able to anticipate what is going to happen.  As in, they are going to move my body is ways I don't want to be moved. He's a smart cookie.  He was arching, pulling off his equipment, and I immediately took to the iPad to show him the "Time to Work" symbol.  I then sat next to Rona and he calmed.  
I've learned how these consults work.  They are literally "fast and furious".  Not in a bad way, but in a constructive way.  His SLP and PT were also there, with his PT taking notes via laptop (when she wasn't concurring with Rona), and his SLP doing the paperwork and facilitating the ipad (when she wasn't working with her) while Rona did her thing.  
As the words scapula, clavicle, rib cage, and "lats" started to float around, I began to feel amazed, as I often do.  I've been around the block enough to know good therapists from bad therapists.  Does that sound harsh?  I was, for the 7,234 time, amazed and thankful for his therapy team.  
And then they said it.  "He's got some functional scoliosis going on here." Some what? Scoliosis has been a word used in association with AJ before, as in we want to avoid it, but not functional scoliosis.  In short, he's growing SO FAST that his muscles are tighter than they already when growing.

Tight + Additional Tightness = Pressure on the spine = Functional Scoliosis.

It also equals pain for my little man, which is not ok with me.
I turned him around and had them show me, sure enough, a little curve.  I could suddenly see how his left shoulder was all "wonky" and this strip of tight muscle pulling from his left shoulder to his right hip.  No wonder he's all WONKY!  
So what do we do?  Soft tissue exercises.  The good thing is that it is temporary and can be treated, we just need to keep on top of it.  I had his PT show me what to do at home.  I am SO grateful for the huge exercise ball Grandma Cheri got him.  The first thing the PT did was put him on the ball and do some rotation and lengthening pressure maneuvers.  We also need to get him in once or twice a month to check in with his PT/SLP/OT at the clinic.

I did the exercises twice with AJ yesterday after we got him.  He was more open to me manipulating him than he was with his PT.  When he's not used to his body being in a certain position, even if it feels good, he sort of freaks out.  His security blanket is pulling it all in, tight.  When getting him ready for a bath, All I could look at was his spine.  I imagine I'll be obsessed with it for a while.  His body felt better and he moves better after the stretching and lengthening.  I don't want him to be in pain. At all.  After I had my cry and moved on to the logistics of the whole thing, I started putting together the puzzle.  Is this part of why he's frustrated at school and sometimes at home? Because he's in pain and uncomfortable and can't tell us?  I would bet money on it.

I'm thankful its temporary and that there is something we can DO.
Rona also observed him eating and was thrilled with the progress he's made.  She talked with the SLP on some things to work on to help lateralization of his tongue (he just doesn't want to do that!) and some other things.  Nothing that we weren't working on already, but Rona always has some trick of the trade that works wonders.  
I also learned that the most recent orthotic that we have for his left foot, is causing pronation. It's tiping his foot in, like this (the outline is normal placement of a foot):

His foot already turns in!  He was casted wrong, which makes me not so happy.  We lost our favorite orthotist last year.  Sadly, who you see makes a difference.  I hope we don't have to have him re-casted and that the current SMO can just be fixed.  

Moving on...
AJ only woke up on his own once this last week.  Sigh.  We did receive his Keppra level back-it was normal. As expected.  Sigh.  I've got a call into his neurologist to see if I should wake him or not.  He's sleeping the same amount of hours (12 to 13), its just 8 to 8-ish now instead of 6 to 6 or 7 to 7.  I think its a combination of the cold he's had all week, growing, and brain activity. Now that we've learned about his functional scoliosis causing him pain and making him tighter, I think that is part of it too.  I also need to chat with neurologist about the ERST (see below) and whether sleep deprivation (forcing a nap during the appointment) or anesthesia is a better route.  AJ did wake up on his own this morning and I was so excited to see his smiling face when I opened the door and he was standing there.  Hooray!  I hope it continues...

A few weeks ago I left a pretty excited message for AJ's dietician at the GI Clinic. I had found a "Complete" chewable gummy vitamin and wanted to share with her.  The vitamin drops for infants don't have the right balance of what he needs at his age and are missing quite a few things.  The regular gummies are missing essentials too.  They are indeed, not complete.  That word is drilled into my head.  So imagine my sheer bliss when I find these Flinestone Gummies and they say COMPLETE!  And, AJ takes them like a champ and requests more!
I got a call from his dietician.  Turns out, these gummy vitamins are NOT complete.  This is clearly a false advertisement and not only will Bayer be hearing from AJ's GI Clinic, but from this frustrated Mama.  I had Jeremy take the empty bottle to work so he could give it to his dietician, just because.  We decided these are better for him than nothing.  But, of course I knew they'd be worried about something.  They want to make sure he's getting enough Calcium.  I downloaded a handout on the hospital website regarding how much calcium he needs for his age.  I'm thankful he's now requesting milk!  

Today was saw AJ sign the word "more" a lot.  I mean A LOT.  Repeatedly. Its his new way to say "I need to tell you something-I need my ipad."  Which is quite brilliant if you ask me. Brill-iant.  We're straddling a fine line of patience with this boy.  I've been corresponding with the company that created his communication app, almost every day for the past few weeks.  We are trying to hammer out some kinks.  It is amazing to have an answer from the founder of a company in your inbox two minutes after you sent it.  

We are still working out the kinks with having school trained on his iPad.  Frankly, I am frustrated. But we are closer than we were before and I am trying to focus on that.  In this post, I mentioned the list I was coming up with in regards to what the staff needs to know regarding his iPad.  While the iPad is, pretty simple, organizing and knowing what needs to be used on a daily basis for AJ is a bit tricky.  I mean, if I gave it to you and said go to iComm, storyboards, reorder moving "J" to "K", and OT with speech, hide playground, add ball and shaker, enter time ring into picture menu, then make sure to access the video...would you know what to do off the bat?  Probably not.  My list ended up spanning 5 pages and yes, included tables and highlighted section titles.  

This year, so far, has been a year.  I wish I could say its been a breeze.  What I am learning?  AJ is a curve ball, in every sense of the word.  The programming for his school day, which was planned last spring/summer, is just simply not working effectively for our little dude.  Meetings are taking place, like gang-busters to remedy and make things better for AJ.  We are aiming to strike a balance between AJ's special education needs (SE) and deaf education needs (DHH). Right now, it is lop-sided, with DHH outweighing SE. Anyway, things are changing.

Cochlear ImplantsWe've now learned that there is not enough research to show how sedation may or many not change/alter the results of an ESRT.  However, we have results from an "awake" ESRT AJ had last year, so we'd have something to compare it to.  Given AJ's history, our CI Clinic has said they'd like to put AJ under anesthesia in the OR for the test.  This kid doesn't do anything half way.  Oy.  We still have not decided whether to do this or not, but I've been obtaining additional opinions and doing some research of my own.

I'm also excited to announce that we've been accepted into a study through the University of British Columbia in Canada.  The study is exploring parent experiences of the cochlear implant process for children who have special needs in addition to deafness.  As I spoke with the staff at UBC, I had goosebumps.  Hearing that someone actually realizes that our process is different. Amazing. Not only do they want to improve the parent experience, but also educate and assist professionals and CI teams to optimize delivery of services.  The woman I spoke with, asked for a brief explanation of a few things to see if we qualified.  Her response (after my 10 minute answer)?  "Whoa.  Um, yeah.  You definitely qualify."  I'm super excited about this and can't wait to share our contribution.  

I've been going back and forth with the vision specialist in our school district.  She's had a chance to observe him a few times.  Following her observations I asked her for any suggestions or tips she could share to help AJ use is vision more effectively.  The beauty is that the iPad acts like its own lightbox!  It helps him focus.  He still has a bad habit of using his hands to explore things, grab, or even eat without using his eyeballs.  Grr!  We're working on making him use his vision.

We've finally had our first few snowfalls.  WOW.  I think I literally shed a tear the first day I drove AJ in the snow to school.  It took me a whole 15 minutes.  All of the stress of selling our house and moving went away in those first few drives.  I'm anxious for spring though.  Aren't you?

1 comment:

  1. Wow, you are one busy mamma! Selfishly, I can't wait to hear about the ESRT. When the ENT/audi sedated our little man for his ESRT, it didn't work because he was sedated...hope that your experience is better than ours!

    Keep up all the hard work and enjoy the snow knowing that spring is just around the corner.


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