Angie is the mom of 5-year-old Avery Grace, who has apnea and feeding challenges. Angie is a public speaker (with her company, Speaking By Grace), a stay-at-home mom and wife to her husband, Paul. The family lives in North Dallas.
2:20AM Avery’s pumps are beeping so I go untangle the lines and stumble back to bed.
4AM De-access Avery’s central line and change her diaper. I crawl back to bed to try to get a couple more hours of sleep.
6AM Paul’s alarm goes off—he hits snooze and snuggles next to me for a few more minutes.
6:18AM Paul gets up to face a new day.
6:45AM I drag myself out of bed so I, too, can begin a brand new day!
7AM Kiss my precious husband good-bye and finish getting ready.
7:30AM Do my devotions and spend time alone with God.
8AM Check e-mail, make my to-do list for the day, call my sister and spend a few minutes chatting while getting Avery’s food and drink ready for feeding therapy.
8:30AM Avery is awake, so I snuggle with her and we talk about our day. She informs me that we must eat breakfast first, so we unhook all lines and head to the kitchen.
8:45AM Avery decides she wants to have a picnic breakfast and watch TV. I decide that sounds like a great idea and remind myself that television can be very educational!
9AM Help Avery with her chicken nuggets and yogurt. (When your child doesn’t eat by mouth until she’s almost 3 years old, you don’t care what she eats for breakfast!)
9:20AM Draw up Avery’s morning medicines and administer them through her G-tube.
9:45AM Get Avery ready as she instructs me on how to not pull her hair while putting it in pigtails with the perfect bows to match her outfit!
10:10AM Leave for therapy.
10:30AM Feeding therapy is full of drama while Avery gags with each bite of peaches.
11AM Occupational therapy is full of more drama while Avery lies on the floor and tells us she is too tired for any more therapy! Oh, the fine line between disciplining and truly knowing her limits! Today, she is disciplined and there is no more computer time for the rest of the day. Such a sad, sad day (for both Avery and Mommy) when the computer is taken away!
11:45AM Head to our next appointment with our hematologist and pick up lunch on the way.
1:15PM Meet Daddy and get checked in to the Center for Cancer and Blood Disorders, (CCBD).
1:30PM Get Avery’s labs drawn from her central line.
2PM Labs are still not back, so we continue to try and entertain Avery while in a 10-foot-by-10-foot exam room!
2:30PM See our hematologist and spend almost an hour talking about our plan of care for sweet Avery.
4PM Arrive back home and lay Avery down for a quick nap. I make phone calls to our home infusion company, insurance company and call in refills for several prescriptions.
5:30PM Paul arrives home, and together we go wake sweet Avery up from her nap. Watching her sleep takes my breath away and I stand by her bed with tears in my eyes as I think about all she has endured.
6:15PM Sit down for dinner, pray and spend the next 30 minutes describing our favorite and least favorite parts of the day.
6:45PM As Paul and I are cleaning up, Avery asks if she can play the computer. Uh-oh! No computer because of our poor choices in therapy this morning. The tears start coming and a meltdown is on the horizon! Bedtime cannot come soon enough as this little one is beyond exhausted.
7PM Play games, then Daddy reads Avery her nightly devotions.
8PM Daddy draws up medicines and bathes Avery while I prepare her TPN and lipids and talk to my parents on the telephone.
8:30PM Access Avery’s line and connect her to her TPN/lipids that will infuse over the next eight hours. Daddy gives Avery her G-tube medicines.
9PM We carry Avery and all of her equipment into her bedroom and get her settled into her beautiful bed. It looks so inviting—it is everything I can do not to crawl in with her! We read a chapter in one of our favorite books and then say our prayers. After we tuck her in and kiss her goodnight, Paul and I retreat to the living room to check our e-mails and watch a little news.
10PM Write an update for Avery’s CaringBridge site.
11PM Check on Avery’s pumps, change her diaper and head for bed.
11:30PM Crawl into bed and cuddle up with my sweet hubby. We pray together, laying it all in His hands once again. We both drift off to sleep, all the while listening for Avery’s pumps to beep and hoping we actually get to sleep until 4 a.m. before we have to tend to a line or a pump!