Mornings – feed her breakfast (a prescription formula) through her feeding tube. Give her 2 different meds for her seizures. Change her diaper. Get her dressed. Get her up in her chair, load her in the van and we are off to school.
Evenings – when we get home I lay her down in her bed and turn on her cartoons. I change her diaper and get her dinner ready (again, the prescription formula). She gets the same 2 meds again. Later in the night (usually around 8-8:30 p.m.) I get her ready for bed. I change her diaper again, tucker her in, give her lots of kisses and turn on her classical music CD. A couple of hours later I go back in to sit with her while she has her nightly seizure.
She usually only has one a day unless she’s getting sick and then she’ll have a lot. I have a prescription rectal gel valium that I can give her if it gets too hard or lasts too long (in fact, just had to give that it her the other night). She now also gets a Depo-Provera shot every 3 months in hopes that it will eventually stop or at least decrease her periods – yes, she is a little woman. She got her period about a year ago so now I have that to deal with also. I feel so bad for her because she cramps and is so uncomfortable but she can’t talk and tell me.
I’ve changed many a diaper in the van at soccer fields. I’ve been a single mom and I couldn’t let Nathan down. He’s played soccer since he was 6 years old – all of Dakotah’s life. She goes right along. Rain or shine we’ve been there. If I have to grocery shop (now that Nathan is gone), I push the chair and pull the cart. I will do whatever I have to do to ensure that she has a quality life.
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