Turning over rocks

6/22/11 Wednesday
The funds went through to the UK based group called Snowdrop.  They wrote up a plan for Jewel and e-mailed it to us.  I forwarded it on to a couple of therapists who have/are working with Jewel for their feedback.  We are studying the evaluation and starting the activities.
Jewel received a package in the mail from her friend Sophie in England, it was a music cd of Muddy Waters at Newport 1960.  Thank you Sophie :)  Jewel and all of us enjoyed listening to it, Jewel is used to classical and more pop music now due to her sisters.  This was a nice change of tone and pace.
Music is the silence between the notes - Claude Debussy
Carol came to work on Jewel today using her myofascial release and Jewel's body relaxed and responded to Carols work.  These are the silent moments between the notes of Jewel's song.

6/23/11 Thursday
I checked out the web-site called Danielle's Foundation and I found it to be legitimate.  My girls were skeptical but you have to try to turn over as many rocks as you can to find what you are looking for, at least when looking for bugs.  I am not looking for bugs but I have to try and putting forth the effort, this is what it takes, even if I come up empty handed then at least I know that I tried.  I am looking for help, inspiration and treasures in friendships for Jewel.  Trying to help her find her path in life, to actualize and fulfill her dreams.  Please go and check out Danielle's Foundation and view their web site if your child has cerebral palsy or suffers from a brain injury.  The sight is positive, sensitive, helpful and new.  It is user/parent friendly and not your typical archaic-medically-drug and surgery driven site.  I am sure as they grow and their name gets out even more they will be able to bring more help, hope, education, ideas, and stories together for families like ours.  A big Mahalo to  Danielle's Foundation.  I am hoping to apply for a grant for Jewel to receive more therapy for her.
This evening we went to the horses.  The session was good but our expectations for Jewel were high and she was feeling the pressure.  We always try to treat Jewel just like our other children and she is just like our other children but different.  There is such a fine balance before she gets defeated and gives up, walking that line with her is challenging at times.  I have to respect and understand her limits, yet I have to encourage and motivate her to aim higher, reach farther, dream bigger, try with joy and a song in yur heart.  This evening was hard for her, it was hard getting her head up and she almost gave up. Raven was a tough back rider this evening, but the Rodeo parade is just days away and she has to be as ready as she can be or we may have to reconsider.   Oh, how I miss our old O/T Crystal, she was so talented and able to get Jewel's body to respond.  She understood so much more than we do and we keep trying but some times it is just not enough compared to a person who is educated and capable to help reach the goals or stability desired in Jewel's body.  I printed and underlined, then highlighted the Sara Rosenfeld-Johnson's approach to Oral-motor feeding and speech therapy.  I read and triple read the paper available on line as a pdf.  I learnt that Jaw control comes before upper and lower lip control.  Now I have to figure out how much Jaw control Jewel has and what we need to do to get her more Jaw control.  Stability in the Jaw comes as a precursor to speech and feeding  and other more complex motor skills.  So the paper says, "... the Jaw is the basis for motor speech development."  Back to fun and games for Jewel, this is her way of learning.  I just have to keep the good times rolling in conjunction with the therapy and all will be well.  Maybe this is one of the secrets to a healthy life. :-)



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