5:00 am: alarm goes off
5:27 am: I actually get out of bed
Make coffee, shower, get dressed, make Lily’s breakfast, Harper’s breakfast, pull Lily’s allergy meds, pull Harper’s meds for the day…she has a shoebox full, no lie!
In the midst of the above morning routine, at 6am I wake up Lily who does not actually get up until 6:30am
7:00am: Dress both girls
7:30am: Load everybody up and drive 22 miles to Southlake for a doctor visit
9:45 am: Leave Southlake with a slightly more comfortable feeling about where we are with Harper and Lily’s health and wellbeing. Drive 25 miles to Grand Parire because my husband Dustin used my car last night and left his wallet inside.
10:20 am: Drop off wallet and give Lily the cash in it as payment for the extra trip! HAHAHA That’s just how I am. I’ll gripe about this until I do something stupid I want him to hush up about! 🙂
10:40 am: Stop at Hobby Lobby to get Velcro to help modify one of Harper’s many splints!
11:00 am: Home. unload, fix Lily’s lunch, my lunch (wow I get lunch today) and Harper’s lunch!
11:15 am: Nurse struggles to feed Harper lunch and medication. Lily eats turkey, grapes and a cheese stick with water while watching Olivia.
11:30 am: Strip the sheets from the girls’ beds and toss them in the washer. I eat “Against All Grain Pesto Pizza” and a Perrier while writing an email and setting up feeding therapy with Our Children’s House of Baylor.
12:00 pm: Move sheets to dryer and put blankets in washer
12:15 pm: Grab Harper’s therapy bag with all her splints and load everyone up
12:23 pm: Arrive at Easter Seals North Texas Occupational Therapy Session
1:15 pm: Head home after a session spent working on Harper’s sensory issues to texture and touch
1:30 pm: Nurse leaves after unloading Harper and finishing up her charting
1:40 pm: I contemplate staying on the floor lying comfortably next to Harper… but decide I must finish my day!
1:45 pm: Change Harper’s diaper, give her some water, have Lily use the bathroom and head back out the door
2:00 pm-ish: arrive at my prior place of employment, Bio Aquatic Alpha Energy Labs, to have my portion of our Special Needs Trust notarized and copied. Scan Harper’s recent medical records and have a friend email the records to me. Have my sister who works there this summer load up 8 used buckets to take to a friend as a favor
3:00 pm: leave Bio and head to friends house to drop off buckets on the way to take Harper back to the Chiropractor….in therapy she seemed to have issues with her neck on the right side.
3:30 pm: Comfort Harper in the waiting room during a 6 minute SEIZURE before Harper sees Dr Glass for another adjustment. She just had an adjustment yesterdaywhen she had her jaw put back in place…an effect of seizures. It’s okay… it was needed, and all is well
3:50 pm: Head back home! This time I will stay there for the night
4:15 pm: unload everyone at The Howard House! Move the blankets to the dryer and put Harper’s clothes in the wash. Empty the dishwasher and start dinner. Lily gets bacon cooked on the stove (because she does not like it microwaved) raspberries, blackberries and a cheese stick. Harper gets the apples from lunch she was being difficult about.
5:00 pm: Feed Lily and Harper. This time I decide to put Harper’s supplements through her tube and see if she will eat!
TaDa! My girl opened her mouth EVERYTIME! So she will eat… just not her meds! Okay That’s a problem! but I’ll let Feeding Therapy help me deal with that. I’m just glad she ate.
5:30 pm: Lily gets a bath, clean up from dinner, leave Harper to digest. Take the blankets from the dyer and put Harper’s clothes in. Put the sheets on Lily’s bed while Harper’s aide fixes Harper’s bed. Thank Goodness for help!
6:00 pm: Lily gets out of tub, Daddy’s Home!
6:40 pm: Daddy will bathe Harper while Lily and I take Petey on a walk down the street and back… in our bare feet 🙂
Lily is not much of a barefoot walker because she says her feet get dirty. I think she stayed on her tippy toes the entire way! I grab the mail on my way back in.
7:00 pm: Now that the kids are bathed the towels go in the washer. In case you haven’t picked up on things Tuesday is when I clean all the kids things (clothes, towels, sheets). Lily practices her piano, I sort mail, Felicia holds Harper. Harper pulls her tube out about half way and we reinsert.
7:20 pm: I make my dinner and Dustin talks to me about his day. I hear wawa wa wa wa wa… JK 😉 I eat while Dustin cooks his dinner. Dustin eats… and I wonder why I ate so much.
8:00 pm: We sit looking at our empty plates thinking should we check on Felicia and the kids or… just let it be! 🙂 We decide it’s story time. I put the dishes in the dishwasher and Lily picks out her book to read. Yup, she’s a reader!
8:10 pm: (only because it’s summer or she would have been in bed by now) Lily reads Biscuit Visits the Big City.
8:30 pm: Lily brushes her teeth and is off to bed. Harper gets another tube of water and her relaxation supplements.
9:00 pm: Felicia heads out. Again, Thank You for the help, Felicia, and Harper’s nurses. Dustin attempts to hold Harper but her hypersensitivity is really kicking in so I put her to bed.
9:10 pm: Send 3 emails
9:27 pm: Sit to write out my day for you!
10:02 pm: I’m done and I’m going to get a drink of water and go to bed! Tomorrow comes early and stays busy! 🙂