I think I wrote one of these posts awhile back, but things change so much that I wanted to do it again. Blogs are great for record-keeping! Ruthie's days are always somewhat off due to her various therapies (I'm working on getting everything lined up at the same time of day...a process in itself) but this is a sample of her typical day when we don't have to be out and about.
Always more fun when written in Ruthie's frame of mind! =)
6:30a - Momma comes in to turn off my continuous feed and flush my tube while I sleep on (hopefully)
7:30a - Momma comes back in to give me my morning meds through my tube and change out the feeding bag on my IV pole. I'm debating waking up...
7:45a - The Princess awakens! I am SUPER happy to see Momma and/or Daddy (sometimes I get both! I'm so lucky...) coming to my crib. They unswaddle me and I enjoy a few stretches before I schmooze them into picking me up. I get my diaper changed (I would never make it in a bladder-bust contest, and Momma is currently on a mission to find a nighttime diaper that will fit me) and my apnea belt taken off and put away until tonight. Momma takes off my "button-buddy" (g-tube flannel pad) and washes my tube site. Then she lets me pick a new button-buddy - I always choose a pink one. Momma (or Daddy, though he might be embarrassed to say so) will sing one of my favorite songs, "Head, Shoulders, Knees, & Toes" while I get dressed. Momma does my sensory brushing and joint compressions on my arms and legs, then all of my oral motor exercises while I chew on her and make babbling noises.
8:00a - Momma makes a morning bottle and encourages me to drink it. I don't want to, so I shove it away and smile really big so she'll pick me up instead. She puts my milk in the feeding bag and turns on the pump. Then she takes me to the kitchen so I can play with Ella Funt in my highchair while she makes & eats breakfast.
8:30a - I'm still happily squealing at Ella Funt and staring at her intensely, but she won't talk back. I whine occasionally to make sure Momma knows I'm still here. She turns off my pump at 8:30 and disconnects my tube to flush it out. Then she cleans out the feeding bag and makes sure it's ready for the next feeding. It has just dawned on me that I have no idea where my paci is so I make sure Momma knows that I want it....now!
8:45a - Momma takes me to the living room to play on my playmat. She puts me up on my reflux wedge but I really wish she wouldn't. I want to SCOOT, so I do. I wiggle around until I find the perfect place to grab all of my toys. I make loud noises to them but they don't answer me. I try to fit my toy cow into my mouth but it doesn't work so I start to complain. I realize yet again that my pacifier has disappeared, so I squawk loudly until Momma gives me one. We practice my neck stretches and sitting up (I LOVE to sit up! I'm such a big girl!) and rolling over and grabbing my feet....all kinds of things that babies my age are supposed to do. We talk about all kinds of things and I make sure she knows I love her by giving lots of smiles.
9:00a - Momma says I have that "look" in my eyes. I don't know what she's talking about but I sure do wish she would put me in my bed so I could sleep a little. Fortunately, she does. She picks me up and cuddles me while she takes me to my room. I get a diaper change and swaddled, but lately Momma is only swaddling one arm. I'm not sure what's up with that but it doesn't affect my naps so I guess it's no big deal. She turns my lamp off and my awesome sound machine on and lays me in my crib. I squawk once to make sure she doesn't forget my lovey and paci, but she doesn't. Then she tells me she loves me and I should sleep well and then she leaves the room.
10:00a - Momma comes into my room to start my next feeding, but I'm so deep in dreamland that I never knew she was there.
10:30a - Momma comes back in to turn off my pump and disconnect me so she can flush my tube and wash out the feeding bag.
11:30a - I wake up. At first I'm not very happy about it, but Momma comes to get me pretty quick and I'm happy to see her. She unswaddles me and scoops me up to snuggle for a few minutes. Then she changes my diaper and does my brushing/oral motor/neck stretches again. We go to the kitchen and Momma puts me in my Bumbo seat on the table so she can try to give me that yucky baby food. She encourages me to take little bites. Sometimes I do, sometimes I don't. As soon as I gag, the feeding game is over. Sometimes I can take as many as 12 bites, but sometimes I don't get past the first one. Afterward, I get to play with Ella Funt!
12:00p - Momma helps me with my brushing and oral motor exercises again and offers me another bottle. I refuse it with smiles, so she puts it in the tube. Then Momma and I play in the living room for awhile. I get to watch a little Mickey Mouse and that always makes me happy!
12:30p - My feeding is done! I get unhooked and my tube flushed, and I finish watching cartoons while Momma cleans out the feeding bag. Then, if it's a nice day, I get to go to the park near the house for a nice walk.
2:00p - Naptime! (And feeding time, too.) The usual - diaper change, swaddling, hooking up tubes, and I usually pass out before Momma is even out of the room.
2:30p - Momma comes in to unhook/flush my tube. I know how cute I must be sleeping so soundly with my lovey held up against my face and a death grip on my paci. (Gotta make sure nobody tries to take it from me in my sleep!)
4:00p - Time to get up! Momma changes my diaper and does my brushing/oral motor. She offers me a bottle and while I think about it, I decide not to accept it, so in the tube it goes. This is time of day where I usually prefer my paci not leave my side, much less my mouth. I play in a variety of places, some days I'm happier in my highchair, some days it's my playmat, some days it's my swing while watching Mickey Mouse.
6:00p - I decide I would like one more quick nap before I go to bed for the night. Momma changes my diaper and does my brushing/oral motor and neck stretching exercises, then swaddles me for my last nap of the day. Once I go to sleep, I've been told she sneaks back to give me my night-time meds.
6:30p - Time to get up again. I usually protest b/c I love to sleep. Momma says sometimes I complain a lot after this nap, but it's only because I wish she hadn't woken me up. I play with Ella Funt in my highchair for awhile while Momma cleans up the kitchen and gets my bath ready. She also starts my continuous night feed.
7:00p - BATH TIME!!! My favorite! Oh, I LOVE my bath time! I'm just learning how to splash and one of these days I will succeed in soaking Momma's shirt. (Shhh, don't tell her that's what I've been trying to do.) I get my face and my ears scrubbed and my hair washed, then Momma pours water over my tummy with a cup because she thinks I like it. Truth is, I LOVE it! I try to catch the water with my hands but it's so slippery! All too soon, Momma starts draining my bath water and I have to get out. :( I get all dried off and Momma puts lotion on me and a fresh diaper. Then I have to put on that pesky apnea belt again. I'm pretty used to it though, and I love grabbing the wires when Momma's trying to get them threaded through my diaper tab and through the hole she made in my pajamas. I don't think she finds it as amusing as I do. Usually by this time I'm pretty cranky because I know it's bed time and I'm tired and I want my paci. I get my pajamas on and my hair brushed, then I get all swaddled up and cozy. Momma turns out my light and turns my sound machine on. Then -- best part of the day -- she hands me my lovey and my paci and we sit down in the rocking chair to snuggle until I fall asleep.
It's tough being little but I feel so loved. =)
Here I am giving the stare-down to Ella Funt b/c she won't answer me!
:-)
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