Undoing the Undone

AJ has not had physical therapy since March.  His state insurance decided, for some reason, he was doing fine without it and flat out denied more visits.  When he had his cochlear implant surgery in May, AJ's PT resubmitted for more visits-thinking it would be a breeze to get post-surgery visits. Not to mention, AJ was not going to be receiving PT from school over the summer, so we thought it was a slam dunk requesting more visits. Your thinking what does a cochlear implant surgery have to do with PT?  A LOT.  Allow me to side-track for a moment.

About two weeks after AJ's first CI surgery, he got really sick.  We spent a few hours in the ER waiting area, mind you with my child's head and exposed surgery site around all these sick kids, and finally got into a room, where they gave him fluids and sent us home. Dx: virus.  He went limp, lethargic, and all around scared the hell out of us.

You can imagine our delight when it seemed like this was NOT going to happen this time post-surgery.  Well, it did.  It was the day after his IEP meeting.  A Saturday nonetheless.  We all know how difficult it is to get a hold of medical staff on the weekends.

Long story short: vertigo.  Not a virus.  Apparently it is common with CI surgeries, with kids it happens later (not immediately post-surg) because kids heal slower than adults.  We did not go to the ER.  We spent a lot of time on the phone.  He was back to himself within 2 days.  But let me tell you, the limp, lethargic, scariness was all there.  He stops walking, this time stopped moving all together.

Who do you think my 2nd call was to?  AJ's PT.  To make sure she was on board in case this totally knocked him for a loop. 

We were recently approved for 6 (not 8) visits from now until December. Which is crap.  In a previous post, I had mentioned something was better than nothing, so we initially chose to take what we could get.  AJ was enrolled in a summer tumbling group that his PT was teaching, so we were glad he'd see her during that time, in addition to our once a month visits, or whatever.

For the first time since March, AJ's PT treated him last Friday.  And it was NOT good.  How do I explain this?  He's in really bad shape.  His left side is SO tight its causing him pain and discomfort.  Between his tone and new exposure to sound through his new CI, ufta.  He has not been a happy boy.  His PT worked on him while we discussed a plan of action. 

I was literally crying inside while she was talking.  Tears of joy that she finally had her magic hands on him again.  Tears of anger at his cerebral palsy for it making my little man feel pain and discomfort.  Tears of anger at the stupid state insurance who thinks he doesn't need therapy.  At 3 years 11 months and 25 days old.  Seriously?  Tears of sadness and anger toward myself for letting this happen.  For not advocating and pushing harder for him to have more therapy.  AJ slept 4 hours after that PT appointment.  HE NEEDED THE PT, and NEEDED THE REST.  He woke up and was happy, and relaxed and ready to go.

She said the word I think I have found a hate for, and I don't hate much, people. 

REGRESSION.
 
AJ has regressed. 

He's extremely tight and his left foot is turning in so much we can't seem to get it straight.  His PT also thinks its time for Botox.  Sigh.

Our plan of action:
We will use the 6 visits from the state insurance, but are appealing in an effort to receive more visits.  We are also filing a grievance with primary insurance (through Jer's work).  When AJ "graduated" from the Birth to 3 program, his PT and OT both submitted to both insurances to allow AJ to be seen at the clinic vs. home.  (Home visits stop after age 3)  Our primary denied right away, stating it was not medically necessary.  But the state approved, so we moved forward.  Hopefully, our primary will take a look at AJ's case with a bit more detail and reconsider.

Once we use our 6 visits, we will begin private paying for phyical therapy.  Sigh.  AJ's PT would like to see him at least twice a month.  We're going to make it happen because AJ NEEDS IT.  Actually he's beyond needing it at this point.

The tumbling class we were so excited about?  Was cancelled.  The class cannot be run with only two kids enrolled.  Would it be inappropriate for me to go knocking on the door of the parent who pulled them out of the class and ask them to come back?  Please?  My kid needs it! 

We are also doing a massage regimen with him.  I do it AT LEAST twice a day.  We are very lucky that AJ does not mind the deep pressure massage.  We have a list of things to do with him in effort to help with length and separating his ribcage from his shoulder.  He just wants it all tucked up in there so nicely.  Not good.  We're also going back to ball work, which is helping a great deal as well.  Except, we've learned he's been rolling back and forth on the ball on his back at school.  Now I'm finding him arching, yep, I said arching backwards over his pillow.  NOT GOOD.  He does NOT need to start hyperextending backward again.  NO. 

Undoing the undone.  I hope we are successful.  We have had 16 appts so far this summer.  Next week AJ will see his CP doctor, and the decision on Botox vs. no Botox will be made.  I don't know why, but Botox scares the hell out of me.  In the meantime, we're just trying to keep AJ loose and pain-free.