I did get a call from Atlanta today...they sent me a packet by email to fill out and fax back to them. We also have to get our pcp to fax a letter of necessity and written referral for services in order to insure insurance payment...and send 6 mos. of medical records (Lydia's whole life). After they receive the packet and other information, dr schoffner will review her information (which should take about 48 hrs) and decide whether she needs just a consultation or a consultation and a muscle biopsy. Then we will be able to schedule our appt which will probably be just a two day affair. There is not a very long wait time, so I predict we should be able to go in the next couple of weeks.
Terrible congestion continues...saw Dr Guidroz this afternoon. She did a sinus x-ray to be sure that it was not a sinus infection...just a cold..thank goodness! Please continue to pray that she feels better soon...she's pretty miserable right now. Still not eating well at all...only 1-2 oz at each feeding. Thank you for your prayers about this.
Tomorrow is her last ACTH shot!!!
Elise will start her first day at BR Speech and Hearing. Wish her luck!
We will also go to Woman's for a blood test to check Lydia's thyroid levels.
Lots on my mind...many phone calls to make and things to line up...having a little rough night, emotionally...will reflect later...my brain is on overload right now.
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