March for Babies

Wednesday, August 6, 2008


Amanda has been up since 7:30am.  We saw her Occupational Therapist this morning at the house at 8:45am.  At 10:00am I applied the EMLA cream which numbs up the skin over her port so when they accessed her at the lab she wouldn't feel it.  We checked into the Day Clinic at 11:00am.  She played with the train, she played with the Superman car which is fun but makes the most horrible racket you want to throw the thing out the window.  She played with the train some more, she played with the kitchen, she played with the other train, she ran around just for the fun of it, she played with the train again, she ate lunch, she was seen by the doctors, she climbed in and out of chairs, she sat for a few moments to listen to a new Elmo book but got up before it ended.  Grammy and I wanted to know how the story ended so we continued.  She played with the train some more, she opened and closed the toy cabinet doors. She played with "Bee's" keys.  ("Bee" is not actually the woman's name but she played a game with bees in it with Manda one day and ever since she has been known as Bee.  There is no escaping it.)  She played with the computer, she played with the doll house, she played with the train again, she played with the controllers to the video game even though they were not hooked up and so, did nothing.  She went full-tilt all day long.  At 4:45pm we got her room assignment.  Yay! Our own room meant she could start watching her Elmo DVDs!  She got her dinner tray which had some mighty tasty looking roasted turkey, garlic mashed potatoes and green beans.  She ate a bit of each plus some melon and pretzels.  She played with the drawer in her room putting Meow and Elmo in, shutting it, opening it back up, taking them out, then starting all over again...until she slammed her fingers in the drawer and we had to end that game. She played with the rocking chair in her room long enough for Daddy to decide it was a death trap and we should request a more solid chair that sits a bit closer to the ground. She played "slide" in her crib meaning she would stand up holding onto the bars and let her feet slide out so that she would fall on her bottom shouting, "Wheeee"!  This of course was also outlawed by Daddy.  She sat on our laps only grudgingly while we read some books and then it was lights out at 8:45pm.  It has been a LONG day. Daddy went home and Manda and I got ready for bed. 
Did you see any mention in the previous paragraph about a nap?  Hmm?  No?  Of Course You Didn't!  She has not napped ALL DAY!  Oh, and when I said lights out at 8:45 don't think for a minute she actually went to sleep.  I couldn't even get her to lay down!  It became a battle of wills which included her slinging both Elmo and Meow across the room, she took off her socks and threw her ice on the floor.  The IV poll started beeping a warning that there was a problem with the tube.  Oh yeah, the problem was she had twisted the tube up into a kink and was CHEWING on it!  You see, the last time we were here we got a room fairly early in the day so she had settled into her surroundings before bed.  The next day she had her biopsy and after that she didn't feel well, sore and tired, so she pretty much just stayed in bed and watched her videos the whole time. She doesn't feel that way this time.  She's getting her chemo tonight, they are still loading her full of the pre-medications.  We will both sleep through the IV of the actual chemo meds.  I say that, the IV pump is directly next to my couch/bed and makes a constant rattling/clicking sound as it goes through its paces.  Between that and 4:00am vital signs, she will probably sleep better than I will tonight.  So, at 10:10pm she has finally chosen to lay on her right side with Meow over her shoulder so that she can look out through the bars of the crib and see both the TV and me.  She is not quite asleep yet but heading in that direction.  It took some rocking with Mommy in the "Brown Wood" rocking chair (she needs to describe it every so often to make sure we are all up to date on the chair's identification) to get her to settle down.  Once my left arm lost all feeling I decided it was once and for all Night-Night Time.  This time, she believed me.  I think she was feeling a bit out of place and nervous about the strange bed again. Once I had made up my mind that it wasn't a discipline issue but rather a make-her-feel-comfortable-in-this-strange/scary-place issue things improved quickly. (Mommies learn something new every day too!) 
So, now that we are all caught up, I need to go to sleep too since I did not get a nap today either and I foresee another long day ahead tomorrow.  Shshshshshshsh, night-night.

Mere :0)



Miss W said...

Wishing you both the best tonight and tomorrow -- may you both get some dearly needed rest! As always, you are in my thoughts and prayers. Much love!

Milenka said...

She really just amazes me with her ceaseless energy and spirit. You're in my thoughts.