Maria Rose

Like Andy said, we (Sue, Maria, & I) went to see the Doodlebops live this afternoon! Of course, Maria fell asleep early last night so for the first time ever, she missed her 3rd dose of Depakene. Today she had a couple seizures–1st ones in almost 2 weeks! And she was very tired and wouldn’t sleep before the 4pm show. Not a good start…

We got there quite early, of course, got our tickets, and were personally escorted to our seats on the floor. We went the back way, past the small court where the Suns practice (nope, they weren’t there). The usher gave us the wrong seats, had to remove one of the chairs (which are all locked together) so Maria’s stroller would fit in. There was a row behind us and if someone was seated there, they wouldn’t be able to see around the stroller, but the guy said don’t worry about it. Then about 20-30 min later, another usher came and said we were in the wrong place, so she very kindly helped us move.

The good thing about getting there early, wearing bright tie dye (both Maria and I), and having the only stroller/wheelchair in the place, is that we stuck out a bit and got very good treatment. Maria pooped, of course, before the concert began, so I asked an usher if the only restrooms were upstairs, she said yes, then another usher asked if Maria needed the bathroom, and showed us to the “secret” bathrooms on the same level we were on–so no stairs.

We were about 10 rows from the stage, wonderful seats. It was pretty loud, Maria was squirmy, not sure if she was digging it or not. I had an empty chair next to me, so I laid her down and she fell asleep before intermission and stayed asleep until I (rudely) woke her up by grabbing her and dancing to the “Get On the Bus” song (last song). If you’re not familiar with them, go to YouTube, search for Doodlebops and watch one of the Get On the Bus clips; you’ll see how catchy it is.

The Doodlebops are very colorful, and their “wares” are too (and expensive!!)–dolls, hats, t-shirts, cups, etc. I bought Maria a shirt (tie dye; her first concert shirt) and a spinning light toy (therapy for her eyes, you know). It was quite an enjoyable time watching them in person, but would’ve been better if Maria’d been awake to dance with.

Our next concert adventure is the Wiggles!! They’re here April 5. Our seats aren’t quite as good, but I’m more excited about them because I’ve watched their program more often than the Doodlebops, so I know them better. (Plus, I kinda fell in love with Greg? when he officiated at Steve Irwin’s funeral, you know, the Crocodile Hunter.)

Maria had her usual visit to the eye doctor Friday. The good news is that her vision is continuing to improve. However we have a fun new label to put on Maria: legally blind. OK, I suppose that’s not really a huge surprise, but… He also mentioned quite conversationally that people who are nearsighted tend to get detached retinas if they rub their eyes too much. It’s not a big chance but we’ll add it to the big pile of things like liver failure and seizures that could stop her heart.

At the end of the appointment Maria reached out to hug him – she’s been hugging people a lot lately. He just melted. It was so darn cute. Everyone absolutely loves her.

This afternoon Cathy and Sue took Maria to see the Doodlebops. Maria was kind of cranky this morning and (of course) didn’t nap so I’m not sure how it went.

The botox seems to be helping, though it’s hard to tell. The only thing I’ve really noticed is that I can get her AFOs on more easily. The Vitalstim certainly seems to be working. She coughs a lot less when she eats and seems to drink better. When she coughs normally, it’s more productive. She was trying to clear her throat today and I don’t think I’ve ever seen her do that before. She’s done three weeks so two weeks are left. We are SO THANKFUL we were able to find someone to come to the house – remember it’s 4 days per week.

I think it’s the end of next week that Maria heads to San Diego for the audiology consult that had to get postponed last time. I don’t think there are any other unusual appointments coming up.

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!