Tuesday, October 9, 2012

Off to school, Off the market, Off the mark

School certainly agrees with Roa.  The therapists and teachers at school are kind enough to share photos of his day and he looks so strong.  So big. So engaged.

I cannot say that he is excited to go each day.  Not that he doesn't want to go, he is just kind of non-emotional about it.... about everything.
Roa is just calm and spacey after this round of botox.  It really had us worried.  We were getting the "Is he tired?" question from everyone!
 Botox/phenol had that affect this round and that is hard.  We like to see our happy, overly emotionally expressive boy.  This calm, sinking-into his chair, zoned out Roa is sad.  It makes us question if it is the right choice for our family.  For Roa.  Yes, we see better sleep, better sitting, easier gait.  But it makes him zoney, drooly, and just depressed.  Is it worth it?  We have to decide.  Oh, all the decisions we are forced to make.
He is getting a bit more animated as the weeks since the procedure go by.  Last night at Special Olympics at the YMCA, he was loud and giggling again.  Our boy is coming back.... until the next round of loosey-goosey injections...   :(

Another tough decision,  our house is off the market.  We had a signed offer back in August, were arranging for the big move out, and the beginning of our building process and then the buyer backed out of the deal.  We haven't had any movement on it since.  The market is poor right now and nothing moves in the cold season, and so, we will wait and pray, and renovate, and relist come spring.  Carrying Roa upstairs, downstairs, in and out, is just a form of exercise we will do another year.  Freedom of mobility in our home for Roa will have to be limited for a while longer.  We have no choice in that matter, so we will trudge on.

This week we start round three of Anat Baniel/Feldenkrais method with Pati in Lino Lakes.  We are nervous, anxious, excited for the sessions to start.  Will we see improvements in his motor skills?  Will we see enough to warrent the continued draining of our savings?  That is the tough part.  We want to do what is the very best for Roa's development, for his future independence. But EVERYTHING in CP land costs so much!  Most of the things we do have hefty copays, are out of pocket cost, or require time and travel expense.  Money, money, money.  You don't want it to hinder your fight, but in some situations our hands are tied. 
There is another form of therapy, the Masgutova method,  a neurosensorimotor method that focuses on reflex integration that we are very interested in.  New to the United States orginating in Russia, this therapy form is available through a once per year camp in the Twin Cities.
  Cost to the family?  $4,500 for a 5 day camp.
  Benefit of integrating Roa's primary reflexes that inhibit him from rolling, working with hands together in midline, etc?  Priceless
Chance to just try this new form of therapy to see if it improves Roa's motor skills? Risk that it won't work for us?  Still worth every penny
Chance that we can raise that kind of money by this summer for the camp?  Totally up to God and Roa's Angel squad....that being YOU!

Thank you for your continued support in Roa's battle through this monster called Cerebral Palsy.

1 comment:

  1. Hi Jennifer. My name is Kellie and my son goes to Plus. Can you email me if you get a chance? jkzfamily@juno.com


Mom and Me

Mom and Me