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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, th
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. |
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