Today is definitely one of those days I wish Dakotah received some services so I could have a respite care provider or nurse come and help me take care of her. Didn't sleep well last night due to tooth ache...so was exhausted this a.m. I didn't feel like even getting up, but I don't have any leave and definitely need every penny of my paycheck right now so I can attempt to get things caught up to allow us to get a place of our own.
Anyway, I still got up, fixed her breakfast (can of prescription formula/water) and fed it to her thru her feeding tube. Gave her her meds. Changed her diaper and got her dressed. This part (the dressing) is getting so much harder as she gets bigger. She's 72 lbs. of deadweight and is 4'7" so she'll be as tall as me soon (I'm only 5'5"). Anyway, then I pick her up (not so good for the back) and carry her out to her wheelchair in the other room. You see, our friends' home (where we are living so we aren't in a shelter or on the streets) is an older house and the halls are very narrow. Because of this, I can't bring her wheelchair into our room. Truthfully, there wouldn't be much room for it in here anyway. Once I get her all strapped down, we head out to the van, lower the ramp, and load up. There are four straps that I use to strap her down to the van's floor. This is for safety so her chair doesn't slide around.
Off we go to repeat the process in reverse once we arrive at her school. Then repeat in forward and reverse again when I pick her up. Luckily today it was not raining like it was yesterday. You should have seen us - I was pushing her up the ramp with one hand while holding an umbrella with the other. Dakotah may be very low cognitively but she does know this: she doesn't like the rain, wind, having her hair done, her face washed, or her teeth brushed! HAHA. I am so grateful that she has an opinion about things.
Well, I have to get to work on Aicardi Syndrome Family Conference things. Thank you for reading!
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