Eating evaluation

4/29/2011 Friday
"I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much." -Mother Teresa, humanitarian

Jewel has clocked in hours in her uncomfortable AFOs and wheelchair again today.
We are so proud of you Jewel! :)
1 hour and 40 minutes in her stander today.
We had Susan come to do a eating / speech evaluation.  I just let go, and let God.
If I continue to let my fear lead surely we will be lost, and then all the girls will pick up on my negativity.
Susan was wonderful, she is a certified occupational therapist, who does swallow studies at the local hospital.  She saw that Jewel had the wrong chair, "she needs a 90 degree for hips & trunk, feet and knees."
She was able to handle Jewel's body and tone and she worked nicely with her, always talking directly to Jewel.  Susan put us all at ease.  It was a bit much for Jewel, having to eat and drink while we all stared and having someone scrutinize and evaluating everything.  But she handled and so did we,  it helped that Susan was so nice and knowledgeable.  Jewel's oral motor planing is a bit off, this is worrisome for aspiration is always a concern.  She does not have the suck, swallow and breath down apparently.  I think it is due to her lack of neck and head strength and control.  We will consider doing a barium swallow study.
Just when I feared the world was flat and I had reached its end with Crystal leaving, I find out that it is round and full of new help. phew!
I am hopeful for Jewel, hoping that she will have all the help and equipment she needs to be healthy, happy and strong.  Jeweliana you are perfect just being you, I just want to help you reach your goals and dreams.  We love you xx  You need a lot more help with your body and we are growing deeper in character and humility in our hearts due to you my juju bean.

Tonight at the Awana club, which is held at South Side Calvary Chapel, was a wonderful club evening.
Gary drove Makena to shoot the Fire Dancers at the Wailea Mariott  for the Maui News, so Raven and I were taking Jewel to Awanas.  We just finished the swallow evaluation and Loaded the wheelchair down three flights of stairs into my car.  We have no elevator in our building.  Part of the chair was sticking out of the window for we were just too tired to dismantle the chair.  We arrived late but still we made it!  It was the run through of the cars before the Grand Prix.  Jewel's balsa wood dragon car was the bomb, and it caught every ones eye.  The little green dragon was tearing up the track, cross your fingers for next week!  Actually all the cars were beautiful and it was good fun, the leaders were helping with weighing in the cars, giving tips for the wheels and just over all prepping for the big night.  The regular clubbers know and love Jewel and she feels welcomed and at home there.  Tonight some newer clubber kept asking me what was wrong with Jewel and I patiently explained that there was nothing wrong with Jewel.  These moments are like stinging nettle to me, though I am always surprised how open most children are if you keep your response short and simple.
"Thought shall be harder, heart the keener, courage the greater as our might lessens."-Byrhtnoth, 10th-century commander
We are watching clips from the Royal wedding and winding down for bed.