Helping Daughters :)

7/8/11 Aloha Friday

All the girls are still sleeping, beach and ocean air does that.  We spent the whole day at the beach for Raven's birthday.  She had a hand full of her girl friends and they played, talked, giggled and walked the beach.  The waves were breaking large and fast making conditions dangerous and hazardous.  Even with the red flags out and the visibly shaken shore line most of the girls still ventured into the water when there was a break in the sets.  Gary went in and the girls got pounded, Raven was shaken and scared from an inch of her life, Gary had to help her, she was not able to get another breath in when the huge wave came and she panicked.    I hope she learns her lesson and honors her limits and natures warnings.  People die and break their backs and get seriously injured  all the time at big beach, what was she thinking!  All in all it was a lovely day and Jewel just wanted to dig, which we did a little of, though her Aunty Alisa built a stick village for her and this made her happy.  Jewel wore her sunglasses with croakies (a strap that attaches to the glasses and you adjust the tightness behind the head) to keep them in place and she enjoyed watching the ocean and the big waves crash on the shore.  Sadly we were not able to see any mermaids today.

Yesterday morning I sent away for Jewel to win an ipad.  I was hoping this could be a nice tool for her being able to learn to read.  There seem to be some contests on line that are giving away ipads to the special needs community.  Please let me know if you see some contests or grants that could aid Jewel, thank you.  I will let you know when we win one for her and what apps we will get.  Raven has been very helpful to me with this endeavor.  This is one of Jewel's goals this year, to read better.  Thank you Raven for helping Jewel reach her goals and full potential, you are a blessing as a daughter and sister to Jewel and Makean.

We are focusing on meeting another grant deadline, again from the special needs community for cerebral palsy. Makena has been most helpful researching and helping me correspond and looking into helping Jewel get a new wheel chair that is best for Jewel.  Makena has shown her self very compitent in this area as she was the one who picked the gait trainter for Jewel and she chose the perfect match to benefit Jewel and aid in her goal to walk.  Thank you Makena, you are a gift as a daughter and sister to Jewel and Raven!  Jewel's old P/T who has long left the Islands has helped us with ideas and brands that she thinks are best for Jewel.  Angie was the one who chose the super stand stander from Prime Engineering for Jewel and five years later Jewel is still using it and has greatly benefitted from it!  Big Mahalo Angie you have been an angel to our Jewel, thank you! xx  We try to keep in touch with the therapists even when they leave because they have become a part of our family and are always in our hearts.

This is the chair I want to ask for the insurance. The chair is called Kids Rock 2 (http://www.pridemobility.com/quantum/manualwheelchairs/kids_rock_2.asp)

The reason I like this chair is because of the dynamic seating, that way it allows Jeweliana to move in it (shift from 90 degree angle to 80 degree), but she would still be in the proper hip and chest support. It has a lot of the same concepts as her Kid Walk gait trainer. It keeps her in place with a lot of support, but still allows her to feel like she can initiate her own movement. There is a video on the link I gave you, it is in the left hand corner of the site. The video is very informative. 

I would love to hear each of your opinions on the Kids Rock 2 chair, and if there is a different chair you think would benefit Jeweliana. 

When we do write the letter for a new chair for Jewel, and the assesment letters to her insurance, I would like to shift our focus from "collapsable", "light weight" and "three flights of stairs." 

Instead, I want to focus on a chair that will

• keep Jeweliana in a position with the proper chest and lung support for talking and breathing, 
• keep her at 90, 90, 90 degrees (hips, knees and ankles) 
• that will allow her to relax into it and keep her head in the middle, 
• will promote small motor control for self feeding with a tray or table (or coloring-jewel added this in)

I am going to email the company that makes Kids Rock Up chairs with some questions on the chair, if you have any questions or concerns on accessories etc, please let me know, so i can include it in my email. I have found being in direct communication with the company that makes the product has been very helpful. We have done this with Prime Engineering, who made Jeweliana's chair and gait trainer. 

Jewel has outgrown her wheel chair, it has been over 5years and it is falling apart but more importantly she has out grown it in the length of her limbs and torso.  I am happy for the prospects of Jewel getting a chair that will help support her growth and development in speech, eating, learning and self feeding.   Put your positive thoughts and prayers out for Jewel to be able to get her chair!  Mahalo :)