Veteran’s Day
I was in Boise all last week at a meeting. Maria had a pretty rough week. It was very hard on me being gone while hearing about all the episodes she’s having, 2x people told me she seemed “out of it”, and one day the teacher sent her to the nurse–although why that day and not another day I’m not real sure… I did go by and see my old house, still looks the same, I still really miss it. Ate at all my favorite old restaurants, stayed at one of my favorite B&Bs (which has gone a bit downhill), had a pretty good time, considering at the same time my sweet baby is having many many many seizures or whatever the hell they are.
We went to Jerome yesterday. It’s an hour or two from Phoenix. Cute old mining town, but more of a Rosanne and Cathy town than a Manolis or Maria town–narrow streets, rough sidewalks, not very stroller friendly; lots of cute tiny shops–also not stroller friendly, Manolis got bored pretty fast. Nice drive up and back. Poor Maria was in the back having multiple episodes. I wondered if she was carsick and showed it through open-mouthed gasping. She doesn’t seem to enjoy travelling as much as she used to. Maria did puke a LOT the previous midnight–so much that I had to change the sheets, bathe her, wash her hair, and do laundry that night–so perhaps she was still feeling a bit puny??
And speaking of vomit, last weekend we went to Manolis’ boss’s (sp?) so Maria and I could meet his wife and let Maria ride a horse. They have bunches of horses, dogs, and cats. Maria & I “rode” (sat on while the horse ate) on a HUGE draft horse. Not sure if she liked it much. Of course, that was the day she went in for the blood test and got the new breathing treatment and more antibiotics that Andy was talking about. She puked a lot that day too, I was thinking of cancelling, but we decided to try it since she seemed better in the late afternoon. Less than a mile before their house (they live about 60 miles from us), Maria really let loose. Completely soaked her shirt, pants, car seat. It was a LOT. But Danielle (wife of boss) wasn’t bothered and held Maria facing out the 3 or 4 more times she vomited. Somehow we all survived to tell the tale.
Maria didn’t have school today, back to our routine tomorrow with the added twist of a feeding therapy at 8am at a place that’s probably more than 30 min from us, so we’re going to attempt to leave the house at 7:15am. I managed to bathe her this evening, so all we have to do by 7:15 is give her her 3 oral medicines, the breathing treatment, breakfast, and milk, and do her hair and dress her. Tonight I decorated a paper turkey feather for school (it was a family project). I glued elbow macaroni to the bottom like feather tips, and silver balls to the top, like I have no idea what. Hopefully it won’t be the worst one.
I got a call Friday telling me a spot opened up for Maria to start the Vital Stim treatment (hook electrodes to her throat and slightly shock it while drinking to build the swallow muscles) as early as this week. We’d have to go to one of 2 locations (75 min away or 60 min away) at 8 or 9 every morning, 4x/week for 5 weeks. With all the other stuff going on, I told her we just couldn’t do it now. I also missed a talk on Saturday about how to communicate with a person that has multiple disabilities. It was way the hell down in the far SE corner of the valley, probably 60-70 miles from our house. Andy gave me permission to skip it. As challenging as it is sometimes, Manolis and I always say that one smile from Maria wipes away an entire bad day….