Fire Station Field Trip
Today was a pretty good day. It started out when I was leaving for work. I said bye to Maria and when I was down the hall and almost to the laundry room, Sue yelled something. I went back to see what she said and she was shouting that Maria had waved to me! First time ever. She waves pretty consistently when Sue leaves. I walk her to the door and Maria puts her open hand on the screen door, but waving bye to her mama is new.
Then Maria and her class got to go on a field trip to the Fire Station across the street! I couldn’t go because I had a bunch of stuff at work going on (like interviewing people for my co-worker’s job, you know, they guy that retired in August!). Sue told me it was great. The most wonderful thing was that Maria’s friend, Samantha, kinda freaked when the firemen put their gas masks on. Apparently, she started crying, then went to Maria and Maria hugged her. So she and Maria just hugged for 30 sec or so, and Samantha wouldn’t leave Maria’s side for the rest of the field trip. Is that not sweet and amazing?!
No “episodes” (seizures) today, maybe none yesterday. The neurologist had me bump up the Depakene a bit; seems to be working.
Maria’s finished her 2nd week (of 5 weeks) of VitalStim. The therapist is wonderful, thank God! She puts 2 electrodes in varying places on Maria’s neck. The electrical pulses go back and forth between the electrodes. You have to be certified to do this, they’re quite serious and methodical about it. The insurance companies are just starting to pay for it and to realize that it’s not just experimental anymore–there’s hard evidence that it’s incredibly effective. The main thing I’ve noticed is that Maria is coughing better. Her coughs are more effective, she clears the phlegm better. I haven’t noticed much else, but Sue thinks she’s swallowing better. Maria does great for Kathy, VitalStim therapist. She works hard for Kathy and likes her a lot.
The other new things are we have a breathing machine (we may have told you about that before, we’ve had it a while). Each treatment takes about 15 min and usually Maria’s not so excited about it, so it’s 15 minutes of constant fighting. Our latest acquisition is a suction machine (although Manolis thought we were saying sex machine, cracks me up!). Oh yea, the suction machine is my personal favorite, you know, since I’m so fond of body fluids. Sue’s the main sucker, of course, but I’ve done it and so have Andy and Manolis. As you can imagine, Maria’s not too crazy about that machine either. If you can get it in there right (nose or throat), it really does the job!
I spent quite a bit of time on the phone yesterday with an insurance company and incompetent medical supply company. We tried out a walker and sit-to-stand (stander and seating positioner) on Oct 23. The med supply company got the prescription and letter of medical necessity from the doctor on Dec 3. After several phone calls inquiring about the status, I got a call Jan 3 saying they lost the prescription and could I have the doctor fax another one. I got a denial from the insurance company who told me when I called that the doc had submitted more info 10 days prior and they were reviewing it. I called again and the med supply company said the insurance company denied it again because they don’t feel it will help her. WHAT? So I called the insurance company again and they said the sit-to-stand was approved Jan 10 and faxed to the med supply company and the authorization # is xyz. So I called the insurance company and asked to speak to a manager who said when she called the insurance company they said, no it’s been denied. She was going to check further and call me back. That was yesterday. The insurance company gal said she was going to check on the walker and call me back. yea I’m still waiting for that call too. Un-be-fricking-lievable.
Now it’s 11:30pm and Maria’s still awake. I swear, it’s 2 nights of sleep, then 1 or 2 of of very little sleep. But at least Maria hugged Samantha today!