Tuesday, February 10, 2009


Just a little update on my last entry...

The "good news" about the VMR is back into panic mode!

I got a call from the referrals department at our pedi's office. The girl I spoke to said this process of getting authorization for these procedures is "illegal". Illegal? Furthermore, she said that I don't even need pre-authorization for the VMR...Nearly speechless, I tried explaining as best I could the whole situation. I have in print that the VMR does require pre-determination and that Austin must meet certain criteria in order for them to approve it. She still argued with me, saying that it doesn't. She also said that there's no reason for me to travel to Detroit for an EEG. That there's no reason why he can't have one in Houston and have them fax the results to Detroit.

I'm totally humiliated. I'm so sick of running into road blocks at every turn. Why does this have to be so difficult? I felt so strong and so proud of myself today. I felt like there was at least something I could control in this situation...that being where we can take Austin for help. Now, that is possibly being ripped away as we speak.

I called Detroit in panic and said that we have mass confusion over here! I'm confused, our pediatrician's confused, the snotty woman in referrals is clearly confused...She's calling our insurance company tomorrow...then she's supposed to call me and fill me in on exactly what's needed for everything.

I'm still a wreck right now despite the fact that I can't do anything until I hear from her. I look at Austin right now running around in his walker...that big, open-mouth smile and excitement as I make silly noises to him. I think to myself... there's no limit to what I would do for him. He's my precious baby that doesn't deserve any of this. But, unfortunately, never in my life have I been known as a fighter. I've always been the passive, duck-out-peacefully one. I've rarely been the one to speak up when someone cuts me in line or lodge a complaint about anything. I don't like to make waves and rock the boat, so to speak. I just want to stay under the radar and get through without drawing attention or creating drama. I can't do that now. I have to go so far out of my comfort zone...this pressure...I am his mother. I am the one that has to make sure he gets the best...no matter how uncomfortable it makes me to confront this...he's counting on me. I want to give up every time something like this happens. Until I look at him and all his innocence. It brings me to tears thinking about his resiliency. He's been through so much...yet he keeps trying and keeps going. He can have a seizure, fall to the floor and bonk his head. But, he gets right back up with a smile and keeps on going. Maybe I need a lesson from the real fighter...Austin.


JSmith5780 said...

Grrr how frustrating!! I hope everything gets worked out tomorrow.

I too am one to not confront and I still am in every aspectbof my life EXCEPT this. I will not back down for either of my kids. I will always fight for the appropriate services. Maybe that's what you need to implement. The word appropriate. I have been told that on school/ therapy requests you never say something is needed or not good enough. You say this is the appropriate level of services or care that is required for this situation. Does that make any sense?? Sorry my brain has already started shutting down got the night. If you need more explanation email me tommorow. Until then I have my fingers crossed for you!

JSmith5780 said...

My head is a little more clear this morning. The key phrase is "appropriate level of care". Explain why you can't get the appropriate level of care here and why Chugani IS the appropriate level. He is one of the top Infantile Spasms specialists in the country!

Hope that is a better explanation!