Most of the time I feel like we have things under control over here. It may not look under control to a non Rett family but for us, it's just our new normal. And I feel like we're really in a good place on the whole. But this past week I have been turning in circles. I have spent an enormous amount of time on the phone with insurance and the clinic where Emmy receives speech therapy. Yesterday, while speaking to yet again another BCBS rep, I had one of those 'lose you breath, tears rolling down your face' moments. She ever so casually told me that they do not cover therapy when the diagnosis code is "cerebral degeneration". Excuse me. I don't know if I heard you correctly. I then launched into a rant about how her issue is apraxia, how Rett is not degenerative, how she needs this therapy. The B on the other end responded by saying (with an I don't give a crap tone) that that is how the provider coded it. Lovely. Grand. Great. The problems with this clinic and insurance run so deep...I've been dealing with this since January. I'll stop there. My head hurts just thinking about it.
On top of dealing with trying to make sure therapies are covered, this disease has really reared its ugly head as of late. I'm concerned she may be having seizures at night. I went in to check on her this week after she started making noise. She was smacking her lips in a really funny way. Another Rett mom had said her daughter did that same thing after having a seizure. Whenever she wakes up she is extrememly shakey and pretty rigid but we have been told this is more of a 'rett episode' not a seizure. Emmy turns 4 this August and basically I'm dreading the day. How can I be dreading my baby's birthday. It goes against all maternal instinct. But when she has a disease where seizures typically start at 4, how can I celebrate? I don't want her to get older...to let this disease do any more damage. I want my healthy baby back.
I guess I could vent some more. I could tell you about how our dog has been throwing up (and I don't mean just a small pile) on the carpet. Or how I can't get Ava to stop biting her nails. Or how Olivia has taken to SCREAMING anytime she's in the car but I won't. I won't because I feel better now. I've shed some tears and am ready to move on with the day. This too shall pass...This too shall pass...This too shall pass.