A day in the life of Rayleigh Bug as of late is very busy, non-stop and little downtime. But she seems to be enjoying herself! We have physical therapy or some other type of morning activity more days than not so we'll do a day that includes Jim Thorpe physical therapy.
Wake up between 8a-8:30a. Drink some water & have a diaper change, put 3 cotton balls in the new diaper to "catch" some urine for the Ketones test.
Take morning dose of medicine down with some flavored water.
Have a needle-prick for blood-sugar levels test.
Eat some breakfast, usually egg salad with applesauce and whipped up heavy whipping cream.
Take vitamins with breakfast. Half of a chewable multi-vitamin and a whole 600mg calcium vitamin.
Generally she has wet her diaper by now so I squeeze a cotton ball of urine onto a ketones test strip to see if the purple square turns dark enough for her ketones to be in the high level.
I make a cup of coffee and sip on that off and on while she sits in her Bumbo chair on the bed with me while I get dressed and do makeup then we get her dressed and have to be to Jim Thorpe for physical therapy by 10:30.
She does "playtime" with Miss Rachel for 45 minutes - 1 hour and then we drop off banner orders at the post office and head home.
Now we get our first break time of the day. After therapy she takes a 30 minute early nap around 11:30ish because it wears her out so I go and make a much-needed full cup of coffee and check the work phone and emails and maybe get some work done on banners for my Etsy shop.
By the time she wakes up it is close to lunch time so if it isn't too hot yet, we go out back and walk around the yard or take a blanket and lay down with toys and then we get her in her highchair for some Ketogenic Diet lunch! Today it was baby food chicken, baby food sweet potatoes, whipped up heavy whipping cream, butter and applesauce! She ate every bite just as always!
Next, after her food has settled we go into the office and she gets in her jumper while I work on the laptop. When she starts to get bored we head back to the living room for more playing.
If she napped earlier than she probably won't take her big nap until 2:30 so by then Michael is home and has had time to play with her, too! I give her her mid-day dose of medicines with flavored water around 2p and then snuggle her up for her afternoon nap.
This is normally a big nap and daddy joins her to rest from his day at work, too, so Mommy gets some good time in to have lunch and get more work done!
When she finally wakes up she gets a sugar-free Jello snack with a little whipped up cream on top and applesauce on the side!
Then we do more sitting activities and baby-entertaining until it's time to make dinner. One of us (Michael or I) will make dinner while the other feeds Bug her dinner!
After dinner we get some family relaxing time in by taking a small walk around the neighborhood and then some TV time and playtime.
Around 8p Bug gets her bath and then at 8:30 it is her last dose of medicine for the day. Before 9:30p Bug has a homemade Ketogenic Diet approved yogurt snack! Then BED!!! Whew, exhausting just writing this!!!
But that's not the end of it for Mommy! Once she's asleep I get my shower and then I make her meals and snacks for the next 2 days (Michael has been such a great help with this!) and then I clean up the house a bit, work on my banners a bit and hope to be in bed by midnight!
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ReplyDeleteJames