Glimmers of Hope

January 25, 2012

Hey all...it's just me again but wanted to write a quick update on Kai as we actually got some glimmers of hope this week!  I got a call early Monday morning from Kai's genetecist at Duke.  They had just got back another panel of labs from his muscle biopsy that we did back in early December.  Kai's Coenzyme Q-10 was EXTREMELY low.  I'll let you google what exactly CoQ-10 is, but in a nutshell, it's produced by our bodies and is essential for the basic functioning of cells.  It helps convert food to energy, and it's also a powerful antioxidant.  Kai's is nearly 1/2 what the minimum necessary amount is for a healthy child!  So...this gives us a glimmer of hope that we actually might be able to narrow down our extremely wide search for answers.  The doctor is starting him on a high dose of a replacement co-q10 liquid that will absorb quickly and hopefully help bring up his levels.  They are hoping this starts to help make a difference in his struggles as well....we shall see, but we are definitely praying on those lines.  We definitely need your continued prayers though, as now they have to begin to investigate the WHY behind the low levels.  There can be quite a number of causes...ranging from not-so-serious things, to extremely serious things like cancer and serious heart conditions.  Please continue to pray that they are able to find the cause of his low levels quickly without too many major tests....we are hopeful for answers!!!
Also, we have an appointment scheduled for next week Friday to meet with the attorneys at Duke to see if they will be willing to take our case and help fight the school system for an IEP (Individual Education Plan) for Kai, as well as help us fight insurance, who as of today is denying covering any of the CoQ-10 replacements as well as ALL of Kai's therapies (which he need THREE per week...Physical Therapy, Occupational Therapy, and Speech Therapy!).  We need earnest prayers and miracles quickly that Duke attorneys will take on our case and fight hard for us and get these things approved quickly, as we can't last long on the "pay out of pocket" plan :/  That meeting is next Friday so mark your calendars!! :)  We will keep you posted...but THANK YOU from the bottom of our hearts to all of you near and so far away that are praying us through this...and thank you for letting me be nasty and vent when my patience runs out with the stupidity of insurance (I'd still like a good solid answer of why I pay for insurance when they don't cover things we NEED so I still have to pay for my services too?!!!...ok, stepping back off my soap box!) :)