Thursday, February 28, 2013

Advocating for Kayli and her special needs

Last month, we placed an order through our private insurance to get Kayli a hospital grade bed (that looks like a typical bed, but lifts and has features for Kayli's needs).  Her bed request is still awaiting medical board review.  

We also ordered Kayli a crawler to help her with trunk (abdominal), head, and limb control.  It was approved!!! I am now working with the mobility company to order the crawler.

In addition to the 2 items listed above, we also ordered Kayli a special needs car seat.  Kayli currently has a wheelchair to get her from place to place, but she is limited to only transportation modes that have a wheelchair lift and tie downs.  She is able to go to school on an adapted school bus, and to appts in our van because both have lifts and tie downs for her wheelchair.  The limited modes of transportation is concerning because Kayli's van has already broken down on us several times.  Once the van is irreparable, Kayli will no longer have a way to get to her medical appts.  Although we are VERY grateful for our van, it is old (1993) and has high miles (last year, we drove well over 5,000 miles just for dr and therapy appts for our family!). We do not have the income or funding to purchase/lease a more dependable vehicle, so we thought the next best solution would be to get Kayli a special needs car seat.  She is almost 4 years old, has scoliosis, kyphosis, and muscle control issues (like CP) so she cannot safely sit in a car seat that would be found in a store.  She needs an adaptable (special needs) car seat that will allow her to sit forward facing, tilt back and provide molding for her spine conditions. If he has a car seat, then she could travel with many modes of transportation, like others in our community do.  She would be able to fly on a plane too! 

I received the unfortunate news today, that the car seat request was declined by the insurance. The Carrot car seat (made by Convaid) is expensive, but Kayli will be able to use it for years to come because it is adjustable enough to grow with her!  

We are fortunate to have a wonderful private insurance, where we can appeal the insurance's decision and go to a board meeting to review the medical equipment.  I am excited for the opportunity to advocate for my daughter in front of the board next week.  There was a time earlier in Kayli's life where I was denied the rights to advocate for Kayli.  When the Children's hospital put DNR's (do not resuscitate) orders on Kayli without our signature, we were denied the right to advocate and choose life for Kayli.  When she was sent home from another hospital and we were told "she needs to go home and die", even as we begged for the dr to help Kayli...we were denied our right to advocate for her.  When I talk about Kayli's Krusade (to rid of the worthless label), it may seem like a harsh, ugly life...but to me, I am proud that with God's Will and such amazing support from our family friends, we have the ability to advocate for Kayli's life!  In this part of our journey, Kayli needs important equipment to join in our daily lives.  I am grateful for the opportunity to be heard, to advocate for her equipment and supply needs next week. :D  
With great challenges in life, come greater rewards.  I am grateful for everything and everyone we are Blessed with in our lives. <3 

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