Wednesday, December 19, 2012

This is how I roll!

Homemade adaptive sled!

Potty training time!

I will do it myself, thank you!

Missing my blog time!

So many updates.  It has been too long!

1) Roa has continued to see small accomplishments with his continued intensive sessions of Anat Baniel Method with Pati.  Lately, Roa is lifting his head off the surface when lying on his back!  He is also sitting forward when in a reclined position.  Using his hands in midline without turning his head to the side....this reflexive pattern is improving.
The sessions themselves were rough.  Lots of crying and tantrums, but we battled through.  Our Roa would like to do what he wants, when he wants.  When things don't go his was, we hear does the entire 5th floor of the hotel! : /

2) Roa has a trial with a power chair and did amazing!  I have video I will try and post soon.  The chair had head control panel and he was excited to move on his own.  This power chair and handicap accessible vehicle may be in our near future.

3) We are hearing actual words sneaking out of Roa on occasion.  It it those moments when he just says something and we look at each other and ask, "Did you just hear that?".  It is coming.....some day, that sweet voice using words to tell us what is going on in that smart little head.

4) Dr. Gormley is impressed with where Roa is at in his development.  His actual words were, "given his level of involvement,  he is doing really good"!
  PRAISE GOD!  Magical words for a parent to hear!
Roa is scheduled for Botox/phenol again in February.

5). Roa had dental surgery.  It was not fun, expensive and just plain stinks!  Roa had about 8 cavities!  We brush night and day and have since he had teeth!  His toothbrush has always been a part of his speech and OT therapy for communication and feeding skills.
However,  Roa does not have a rotary jaw motion. He does not breakdown food like you and I.  He also has residule food and drink that remains in his mouth that he does not clear with his tongue or swallow like we do.  So, he now has caps on his molars.  It is hard to see the silver in my baby 's mouth, but that this life with CP.

6) School is going great!  Roa loves it and continues to be very motivated by his friends.  He loves the homework discussing emotions, the alphabet, and counting.  He is a little learner.  It will help him so much to have that joy of school.

And that, is a brief summary of Roa's world.  I have been missing from my blog because I have been giving all my spare time to studying craniosacral therapy.  I began craniosacral course work last January and just finished my last class!  I am very excited to use all I have learned to help Roa and to help other children with needs and people with pain and discomfort.  I also love that we will be able to have another secondary source of income with a make-my-own-hours type schedule.   Perfect for keeping up the fight against Roa's CP.

Mom and Me

Mom and Me