And the beat goes on and on and...

Hi everyone:

Now that the Zofran problem seems to have been resolved, we naturally need a new hassle with insurers. The insurance company is now questioning the necessity of infusing Patty with IVIG, on the basis this treatment may be considered, by some, to be "experimental." The administration of IVIG along with plasmapheresis is considered by many doctors to be among the best (and perhaps only) means to reduce a high PRA -- hence the name, "high PRA rescue."

Not only are the insurers not providing approval for future treatments (including the ones planned for this week), but they are balking at paying for the $67,000 in such treatments that have already been completed. Needless to say, we're hoping the insurance company comes around on this. Our hope is that when our doctors provide more evidence of past successes with such approaches, the approval will come through. Do you suppose they have better solutions to the challenges Patty faces? I just don't understand why they are so resistant to give their blessing for the only solutions that appear to offer a shot at success. What's forgotten through this process, I think, is that the insurance company only loses money; the patient has so much more to lose. It's exasperating, discouraging and even frightening, because there really is no turning back on this journey.

While Patty relaxed in our family room last night, a full-scale Nerf Reactor Blaster battle broke out in our backyard. The combatants included Connor, his friends Alec and Noah, and yours truly. It got pretty ugly, with plenty of ambushes and close-range aggression. Of course, after about 10 minutes of running around as the preferred target, I conceded defeat and went inside.

Both PJ and Kelly had sleepovers at friends' homes last night, and Connor hosted his two friends. Tonight, PJ has his homecoming dance. Patty and PJ have been working hard at making a mask for the dance; we'll try to get pics of him in costume. Amid all this chaos of medical appointments, insurance company approvals and the like, it's rewarding to see the kids distracted and happy.

Love,
Brian

Connor and his posse