Thursday, March 3, 2011

it wasn't a complete wash

Truth be told, yesterday's visit wasn't a complete wash.  



Dr. Ortho doesn't want to brace Trevor.  He did admit if we saw a different doctor bracing of one kind or another would likely be recommended.  But he falls in with the more the naturalistic approach philosophy.  Letting Trevy's muscles continue to work for him until they no longer can.  At that point we'll readdress bracing.  For now...Trevy motors around fairly well.  For a kid with half a brain.     


Let me insert here...that I was not looking for bracing options.  I just crave clarity on what direction to go with Trevy in the gross motor arena.  Which I believe will flow into all other areas of development.  As they each complement and build on each other.   


Dr. Ortho strongly advocated more therapy.  Of both the Physical and Occupational varieties.  Intensive.  Which is just a fancy way of saying outpatient.  That gave me a Mommy Guilt Trip prick.  Why haven't I pursued outpatient PT & OT yet?  How did I let a whole year and half slip away?  Am I that lazy?  And is Trevy paying the price?  Ugh.   
   
Evaluations are in the insurance approval works. 


He also made a point of emphasizing several times that we're operating on a time line.  He musta said at least 10 times that by the time Trevy's in 1st grade he won't be such a developmental sponge.  The plasticity clock strikes midnight somewhere in that very vague stretch between 5 and 7 years of age.  I know he meant to be constructive.  Let's take advantage of now kinda thing.  And I agreed.  But still.  I found myself feeling so sad and teary eyed the whole drive home.  Because 1st grade isn't really that far away.  I mean...Trevy's fourth birthday is hovering on the horizon.  


Tick. Tock.  Tick. Tock.  Round and round goes the plasticity clock.  


Reminds me of Peter Pan.  And the ticking alligator that was always hunting the lost boys. 


Why does it always feel like we're running from something sinister and ominous  in this world of Infantile Spasms? 

6 comments:

Matthew said...

Because we are. :(

Karen said...

I have to agree..its because we are. So at least you can know that your feelings are completely valid in that regard. I must disagree with the "too lazy" part though. To wrapped up in other ways you can give your boy his best life, perhaps. You do anything and everything you can think of to help him and it is good enough. As Moms, we have to make ourselves feel quilty...its a job reqiurement I think. But you do your best, and I think that is all any of us can do.

The Lundgrens said...

Tick tock tick tock....ugh. TELL ME ABOUT IT!!! Know that you're not alone!
This reminds me of one of my recent posts. Work, work, work. More, more, more......hurry before the brain isn't able to absorb....and learn....and accomodate...and rewire.
Heard of First Hand Foundation? You can check it out on my blog...one of my January posts I think. Anyway, they just gave Luke about $4,000 for therapy this year. Gave...as in free money!! They're paying for Music therapy, hippotherapy (highly recommend!) and ABM therapy in St. Louis. Heard of ABM? (Anat Baniel Method)
Luke's neuro strongly suggests intensives as well. Like 3 hours a day for 3 weeks. Working on it.....but there's nothing like that here in good 'ol Springfield. :( Bummer. But the ABM is sort intensive-ish so that's what we're doing for now. And we only have to leave town for three days at a time, instead of three weeks.
Not that you need anything else on your to-do list....but check out First Hand. They're amazing!
Trying for the iPad through Marissa's Bunny.....praying we get one!!

JSmith5780 said...

Veteran mommy's turn to jump in. You are all doing the right things and though I know it feels like 1st grade isn't too far away, it really is. The amount of progress possible in Trevy's next 3 years is HUGE. Don't count him out, and don't give up. These were the years that Austin made the most progress and even in 3rd grade he's STILL making progress. I had the same fears when Austin was 4. Let's revisit the saying "any decision made with love...". Youa re making all the right decisions. Don't second guess yourself. Same goes for Luke!

blogzilly said...

Why does it always feel like we're running from something sinister and ominous in this world of Infantile Spasms?

Even though I was beaten to it...because we are. It is, really, on of the most brutal childhood disorders I have ever come across. And I am STARTLED by this...because until it happened to Bennett, I had never heard about it EVER.

But have you noticed how rare the stories of complete and total normalcy there are of kids who get IS and grow up compared to kids who get other childhood 'things' and then grow up? I wonder myself what the actual statistics, if they even exist, are.

It is a crappy, horrible, awful thing and if it were a physical object manifested here on Earth I would beat the living shit out of it with the baseball bat I keep in the entryway closet in the event any other unwanted visitors show up and try to get in the house.

Sorry...bad week. :P

Besides, I beat myself to death all the time with the Guilt Stick, I hate seeing you do it. You are such a good Mom, and I am such a crap Dad by comparison. If I ever grow to be one/TENTH the human being you are I'll be a lucky man. Breaks my heart to think of you tearing yourself apart on that ride home.

joanne foltz said...

JSMITH, thank you for this comment!! We ,moms, have enough guilt and sometimes misplaced.

Other moms and dads who comment on this blogsite, I want to thank you all for your prayers, concern and friendship with my family especially Trevor. I am the gramma who lives in East Africa and who cannot spend very much time with my grandson, Trevor, or Danielle or Jonathan or the other grandkids. Thank you all for your continued encouragement and care for my family!! You will never know how much it has been and will be appreciated! Bibi = )