[tri-med] Short Philina Update

Everything is great!!!  She's been in her adult day program through
United Cerebral Palsy now since the 1st of the month.  She loves it!  
They adore her!  And I feel fabulous, because it's basically just her 
high school program with better hours, and no IEP procress was 
required to get it.  

After 20 yrs of getting up at the crack of dawn (or more like before) 
to get her to her bus stop by 7AM at the very latest, we now have a 
leisurely morning routine, that even involves an option of sleeping in.  

It takes me 10-15 minutes to drive her over there at 10AM, and then 
I can run errands on the way back home.  Same for the afternoon 
pick-up at 3.  (And Regional Center is even going to reimburse me 
for driving her.  Oh and they also let me trade my self vender respite
hours for 2 more Easter Seal camp weekends per year, so she's now
up to the full 9 camps they offer...I usually only used those 12 hours
1 of the other 5 months any way, if that.)  

And come Spring & Summer UCP is going to provide her with their 
swimming lessons again too as part of her program that she lost when 
we move here.

Life is good....



Fawna, mom to Philina 22 yrs (PT6p & Moya Moya Syndrome)
Research Coordinator: Tracking Rare Incidence Syndromes 
(TRIS) project - We are currently enrolling all varieties of 
Trisomy 13 & 18, living & deceased, for the pilot phase.  
To include your child's data and help update the medical 
literature please see: http://web.coehs.siu.edu/Grants/TRIS/
And to add a link for your Trisomy child's personal web page 
please see: http://www.livingwithtrisomy.org/
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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