Wednesday, June 4, 2014

A Day in the Life: Megatron at 10.5 months

This post is more for myself and maybe even Megatron to go back and read years later to see what our days were like.  This is what we did today, June 4.  It was a "typical" day in that we didn't have any medical appointments.  It was spent mostly hanging out at home.

6:00 am:  My alarm goes off.  I attempt to be awake before Megatron so that I can have a quiet minute to myself and get his bottle and morning meds ready.  But yesterday I was exhausted after a very stressful couple days with not nearly enough sleep so I laid in bed for awhile.

6:15 am: I was in bed doing some "interneting" when I heard Megatron starting to babble over the baby monitor.  I went downstairs and prepared his bottle and meds while he cooed and babbled to himself.

6:30 am:  I went into Megatron's room and he instantly kicks his legs down onto the crib mattress (which he does when he's excited someone is there to get him up).  He then does his new party trick, rolling over very abruptly and pushing up.  This is a move we've worked so hard to accomplish in physical therapy so it warms my heart every time I see it, even though it's getting more and more difficult to change his diaper these days!  I change his diaper and clothes (he peed through his diaper.  He slept for 11 hours and his diaper just couldn't contain what he had to offer.)
Can you imagine waking up this happy??

6:45 am: My phone alarm goes off to tell me it's time for his morning meds (most importantly, his immunosuppressant, which has to be given every 12 hours without much wiggle room).  He does great for almost all of them.  By the last one though, he's ready for his bottle and starts to squirm and fuss.  This is when it gets hard for me because I have to hold him down....and he's getting stronger.

6:50 am:  I give him his morning bottle.  He inhales an 8 ounce bottle!
 Between 6:45 and 7:15 am each morning, it's a bit hectic feeling since everyone is starving.  The cats hover over me while I sit on the couch feeding Megatron. 
After he lets out a huge, manly burp, I put him in his Bumbo chair to play while I fed the cats and myself.  He can sit up on his own now but tends to fall backwards since his abdominal wall is still open from the transplant.  He doesn't have the abs to catch himself when falling back.  So if I have to walk away, I either put a bunch of pillows behind him or put him in the Bumbo.  He tends to be a little pukey after he eats so the Bumbo helps keep him upright for awhile.

7:15 am:  Everyone has been fed so I sit down to wrangle Megatron while I trim his finger and toe nails.  I swear it feels like I just did it and they grow like weeds.  I thought it was hard when he was a newborn but dang, that was easy because I could do it while he was asleep.  Now its like wrestling with a greased pig.

7:30 am: I take Megatron upstairs to play while I get ready.  He hangs out playing with toys while I brush my teeth and put in my contacts.  When I'm ready to hop in the shower, I put a blanket and some toys down on the bathroom floor and let him roll around.  Just today he discovered that the hollow bathtub makes a loud sound when he kicks the side of it.

Note the "baby catcher" behind him.  :)
The legs have been in constant motion since the transplant.
8:30 am:  Once I'm dressed, I take him into another room and sit on the floor and do some physical therapy exercises with him.  To him, it's just playing but I manipulate his arms and legs to get him to engage certain muscles.  His gross motor delays are only because he spent so much time on his back in hospital cribs so he's catching up quickly.  He's learned to sit and put weight through his arms when leaning side to side or to the front just in the last 3 weeks.

8:55 am:  I empty the diaper pail in his room so that I can take it to the curb for trash day and so I'm ready to put him down for his nap.

9:00 am: Nap time!  I change his diaper and he goes down easily.  The second I close his door, I am off and running.

9:10 - 10:45 am: 
  • I called an insurance adjuster back. Megatron and I were in a minor car accident on Saturday. Yet another thing involving this child that took years off my life.  We weren't hurt but my car is pretty mangled on the driver's side.
  • I threw in a load of laundry.
  • I scooped the litter boxes and then took the litter and the diaper trash to the curb.  The poor trash men and our trash can full of poop.  
  • Scrubbed my hands like crazy with soap and water.  :P
  • Mixed up a batch of Megatron's formula.  Normal formula mixed per the instructions on the package contains 20 calories per ounce.  My little guy needs all the calories he can get so we have a recipe to mix it so it has 26 calories per ounce.  The recipe is impossible to make single bottles so I mix it in batches of 24 ounces.  And since it is concentrated, that is two extra scoops of formula per batch than if it was 20 calories.  He eats 25-30 ounces a day of formula so we go through A LOT.  A container of Similac lasts us 4-5 days.  At $24.99 a pop, I am mastering the art of scouring the internet for coupons, combining them with Target sales, promotions and coupons to get the best deal possible.  I expected this kid to eat us out of house and home when he got to adolescence but within the first year?  Yikes.
  •  I sanitized some toys that had either fallen on a dirty floor or had been traveling around with us over the weekend.  We are currently using a hospital-grade sanitizing wipe for things like this since he has a weak immune system. 
  • Chatted with The Pilot for about 3 minutes in between his flights. 
  • Worked on a couple blog posts.
  • Folded a load of laundry and got another started in the washer.
  • Listened to Megatron start babbling again after only an hour asleep (normally morning naps are 2 hours) and wished and hoped he'd fall back asleep.
  • Loaded the dishwasher.
  • Took some yogurt out of the freezer so it would be thawed to give to him at lunch.
10:45 am:  After listening to him happily talk to himself for about 15 minutes, I went into his room.  He squealed in excitement when I opened the door.  I changed his diaper and took him downstairs.

10:55 am:  I gave him one of his mid-day medicines.
He was trying to look at one of the cats walking by.  Nevermind the Valentine's bib.  :)
11:00 am: Lunchtime.  He suddenly has a hollow leg, which is a great thing since he was a little slow to gain weight in recent weeks.  He put away yogurt, cantaloupe, shelled soy beans with butter and a few bites of my Spanish rice and black beans.  I had the Avett Brothers Pandora station streaming through the TV and it cracked me up because when he heard the banjo at the beginning of the Avett Brother's Live and Die, he spun around to look.  He did the same thing for Neil Young's Heart of Gold.  He has good taste in music.
11:45 am: (Meal times are slow with this kid!) I put him in his Bumbo to play with toys while I cleaned up the lunch mess.

11:47 am: I realize he has figured out how to silently escape the Bumbo chair because when I walked by, he was laying on the blanket playing with the toys that would have been out of reach in the Bumbo.  I promptly take the Bumbo in the other room so we can pass it along to someone younger.

11:50 am 12:00 pm:  I carry Megatron to the basement to do another load of laundry.  I seat him in the clean clothes laundry basket.  He sits and plays with the clean socks and looks confused as to why he's sitting in a basket.

12:00 - 1:00 pm:  Megatron and I play with toys upstairs.  It amazes me how long his attention span is.  He opens and closes the lid to a toy at least 20 times.  As he plays, I start to dig through the bin of toys, pulling out things he has outgrown so I can pass those along as well.  He starts to get fussy so I think another nap is needed soon.  He gets a diaper change and a bottle.

1:10 pm:  Afternoon naps are hit or miss.  They can be anywhere from 30 - 120 minutes.  I cross my fingers for the latter since he didn't sleep quite as long in the morning.

1:11 pm:  I run down stairs to do more laundry.  I was hoping to get some cleaning done during the nap but the insurance adjuster calls me back and I spend the entire nap on the phone. :(

2:30 pm: Megatron is babbling in his crib.  I leave him be for a few minutes while I deal with laundry yet again.

2:35 pm:  I open the door to his room and get another squeal of excitement.  This kid cracks me up.  We head downstairs and I grab the Bumbo since I decide I want him sitting facing me for a few minutes.  I show him the Beads of Courage he earned in the last month (we picked them up when we were in the transplant clinic in Pittsburgh recently) and he watched as I added them to his collection.  He was enrolled in the program when we were in Pittsburgh for his transplant.  Each time he has a medical procedure, he earns a bead.  Each bead represents something different such as a "poke," an ultrasound, a blood transfusion, an emergency, etc.  He even has a special transplant bead.  The Pilot and I earned a graduation bead for learning how to take care of our special man post-transplant.  It will be a way for us to share with him when he's older just how much he's been through.  It's also a visual of how far we've all come.
New beads on the left, ALL of his beads on the right.  He's earned close to 200 since his birth!

2:45 pm:  Megatron helps me with more laundry.  I hope The Pilot doesn't notice that there might be some baby drool on his clean socks.

2:55 pm:  I had saved a baby wipe box that we got when he was a newborn to use as zoo animal enrichment a sensory box. I filled it with some pieces of ribbon (that were actually taken off the leftover programs from me and The Pilot's wedding).  Free toy = 20 minutes of entertainment!  He was fascinated by sticking his hand in the box of ribbon.  Then he'd hold an end in each of his hands and pull until eventually one hand would let go.  He then moved on and was playing with the lid of the box.  I showed him how to push the button to make it open and he seemed to catch on quickly.

3:15 pm:  We take some selfies because this kid loves to look at himself on the phone.  As always, the drool is a nice touch.

3:30 pm:  Cuddles and another bottle followed by more playing.

4:00 pm: I gave him his mid-afternoon medicine.

4:30 pm:  I packed him up in the car and headed to the airport to pick up The Pilot.  It's only been a few days of having one car and it's already old!  It took us nearly an hour and twenty minutes to drive about 25 miles.  Boo.

6:30 pm:  We picked up Subway on the way home and ate quick while Megatron munched on puffs and more cantaloupe.  Normally he would get more of a dinner when we aren't running so late but he has to have a bottle immediately following his medicine (so it absorbs the same each time) so I didn't want him to fill up an not eat his bottle.  Right now the high calorie bottles have a higher priority over table food.

6:45 pm:  He had his evening meds, including his immunosuppressant.  The evening meds are more difficult to give because he knows that is when he gets a multivitamin.  It's smells and tastes terrible.  And now he's smart enough to recognize it and almost immediately starts to fight it.  Tonight doesn't go as bad (the multivitamin isn't all over him and me) so we can quickly move on to his bottle.  He chugged nearly 8 ounces.  Normally he's pretty sleepy by the time he's done but tonight he was wound up.  I let him "climb" around on me for a little while but then The Pilot took him upstairs to read some books.

7:15 pm:  Megatron is in his crib but still chattering and rolling around.  He doesn't cry though so we leave him be and eventually he settled down enough to fall asleep.

7:30 pm:  I clean up the kitchen some and mix another batch of formula.  The Pilot comes down and unloads the dishwasher while I vacuum the family room.

9:00 pm:  We are loosing steam but we both stay up to try to get caught up on blog posts.

10:00 pm:  Exhausted and done for the day!

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