Days get to be so normal and predictable for me that I forget that those normal days aren't going to last forever. So I thought I would write about what a normal day is like for us right now. Just so when it's over, I won't forget what used to be so normal about it.
I wake up, sometimes before Benson gets up and go downstairs and exercise. But since Hoff has been here, I haven't been doing that. So Benson usually comes into wake me up when Jared opens the garage door to leave for work around seven or 730. (oh but before that, Jared kisses me goodbye and asks me if I need the car today. If not he takes it to work.) Benson and I come down and eat breakfast, Cheerios for him, Life for me, and usually an egg. Then we usually go shower before Claire gets up, or if it's not a shower day, I usually clean up while Benson plays. I also get Claire's five medication's ready and her morning milk.
Claire usually wakes up around 9 o'clock at which time Benson and I play in her room until she's done with her dialysis depending on how early we started at the night before. We have to get the 12 hours in. I take her blood pressure, heart rate, give her her meds (Benson helps me push them through her tube) and give her milk through the G-Tube. When she's done with dialysis, I weigh her, wash her face (especially her left eye since she still has a plugged tear duct) and get her dressed. Then I clean up all of her dialysis stuff and get the new set ready for the day. Then our morning officially begins as everyone is ready for the day. It's usually 10 o'clock by now we play, we clean, we do whatever we do, and then Claire takes a nap around 11. Benson and I play until dad comes home for lunch around noon.
It's a great break up for my day to be able to have Jared home for lunch. It's fun to all be together. After lunch, around 1 o'clock when Claire is waking up, we do her first day exchange for dialysis. This consists of hooking her up through her peritoneal dialysis catheter, letting her drain whatever extra fluid was in her from the night before, and then filling her back up again with the peritoneal solution. Then we are able to disconnect her and enjoy a few more hours of the day until the next exchange. It only takes 10 to 20 minutes to do each exchange. After her exchange, we usually run whatever errands we need to do for the day before we attempt to put Benson down for a nap around 2:30. He's almost to the point of not napping, but on the days he does, it's great! I give Claire her second helping of milk through her G-tube and we enjoy some one-on-one time while Benson is either napping or having quiet time.
We do Claire's second day exchange between 4 and 5 o'clock and then enjoy the evening with Jared since he's not in school for the summer. It's been nice to have him home. I'm going to be sad when he hast to go back to school in the fall. We all eat dinner together and Claire gets her third serving of milk. I also attempt to feed her baby food in the highchair while we all eat her dinner. She takes a few bites (probably just to make me feel good) and then just enjoys watching us eat.
I try to slow down with the household chores I've been working on through the day at night time and just let all of us enjoy being together. Sometimes we'll go on walks in the early evening before we start Claire up on dialysis for the night around 7:30. She gets her fourth serving of milk and her nightly meds then. We change her dressing on her catheter, do her blood pressure, heart rate, and weigh her again before starting up. Currently she's on it for 14 hours through the night. Benson comes into her room to get ready for bed, as she is really not ready to go to sleep by 7:30. Like to stay in her room and keep her company and play with her as long as we can until she's ready for sleep. Benson is great at entertaining her!
One of us puts Benson to bed while the other one stays with Claire and gets her ready. We try to have the deed done between eight and 8:30, so Jared and I can have some time to ourselves. We clean up dinner, work on the computer, and every now and then, get a scoop of chocolate ice cream and waste some time watching TV. I always feel guilty after that, because it really is a waste of time, but somehow the ice cream made it all worth it!! Jared and I try to be up in our room by 10 o'clock. We start Claire's nightly milk feeding at 10 o'clock. This is set on a pump that runs slowly all night long. Then we have to set our alarm for 2 AM to put a fresh dose of milk in to finish the night off. She gets 9 ounces of milk through the night on a pump that runs for eight hours. Before bed, Jared and I read scriptures together, pray, brush our teeth, floss, and talk about the day.
In a nutshell, that's what our normal days have been looking like for the past few months. Always changes, excitement, and adventures to be had. But for a typical schedule day, that's what it would be.
I have a feeling that this normal day we've been having lately will be changing real soon.
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