Special needs car seat evaluation

10/27 11 Thursday

We are in the process of getting Jewel evaluated for a special needs car seat, and apparently there are no people qualified on Maui to do this, so we will be flying to Honolulu to get her evaluated.
She has just out grown her car seat and all the tweaking and pulling and tugging can not make it grow bigger.  We ran into a dead end with the 5 point harness idea, the seasoned drag car racing men were willing to donate a harness and install it for the pure joy of helping a child.  But upon further deliberation and research they decided that it was too risky since we had a teenage boy die in a car accident due to internal bleeding caused by the 5 point harness.  So for safeties sake we scrap this project.
We will be flying out in november to Shriners Children's hospital for this car seat evaluation and Jewel will be checked up by her doctor there as well.  A post surgery nurse has the certification to do the car seat evaluation.  I am very nervous because it is a chore to travel with Jewel, she is too large for me to carry her across the airport and she has out grown her wheel chair.  Non the less I am grateful for the opportunity and resources that show themselves available for Jewel.  What if I lived somewhere with out any of these facilities and expertise, this would be sad for Jewel.
She has taken steps forward in her independent reading and steps back in her skin breakdown, her ability to wear her AFO's that she is currently out growing, frustration, miscommunication, and then there is music and laughter and fun times with her sisters.  Our life is a marathon and not for the weak at heart.
One of my sweet friends passed away on Monday and she has three lovely daughters, it has been a difficult passing for us that loved her and are left behind, though this just inspires me to savour every moment and be the ray of light I was designed to be.  This passing has brought up some of my own fears of what if this happens to me.... but I will fight those thoughts and savour each moment of life instead.  In spite of  all the challenges of the day, today is a good day to live to the fullest.