Sunday, December 28, 2014

The Fun Never Stops!

The blog fell off my radar obviously.  I've been overwhelmed at where to start since so much time has passed and so much has been going on.   After Megatron's surgery at the beginning of October, things have been challenging.  The surgery itself went well, but the days that followed were hard.  Really hard.  It was a very painful recovery for our sweet boy.  Just like after his transplant, it took a lot of medication to keep him comfortable.  But even with narcotics and an epidural, it was really painful for him but also painful for my husband and I because there wasn't anything we could do. 
The afternoon after surgery....couldn't get comfortable.  He was also trying to pull out his IV and NG tube which is why his elbow was restrained.

He was more comfortable sitting up...with some help from The Pilot.  Megatron fell asleep like this!

After several days of him only wanting The Pilot, I finally got some baby cuddles.
Once we all survived several painful days though, he healed well from the surgery itself. It did take him a few days to regain his appetite and when he started eating after the surgery, he started vomiting.  Four to five times a day. Every day. For NINE weeks.  

At first we thought it was anesthesia related. Sometimes the gut is stunned and needs time to "wake up."  Then we thought his stomach was crowded from having his abdominal muscles sewn back together.  But the vomiting continued.  He had an upper GI done.  Then a gastric emptying study.  We added meds.  We added Pediasure. 

Let me go, I totally know how to work this machine!

Nuclear boy!  This was the same room we had the scan that ultimately led to his original liver disease diagnosis.  He was only a month old then though and slept through the entire scan.  This time?  He wanted to know exactly what was going on.

Nothing helped and after a exhausting and puke filled Thanksgiving weekend, Megatron had lost too much weight. He was admitted to the hospital and had a feeding (NG) tube placed in his nose to do continuous feeds to help him gain weight while the doctors hunted down the reason for the vomiting.
This is our first hospital stay with a toddler and not a baby so we visited the toy room to play.
We have had a feeding pump at home before (pre-transplant) so the hospital felt comfortable sending us home after an upper endoscopy and three days inpatient.  We had a new learning curve once we got home.  Megatron was hooked up to the feeding pump continuously and naturally this is when he decided to start walking.  We spent several days following him everywhere he went, carrying the pump and bag of formula.

One of us slept in his room every night because he kept rolling around and would get tangled up in the tubing.  Everyone was exhausted.  Between the lack of sleep, the piles and piles of laundry from all the vomiting, the worry and then the time in the hospital, we were all fried.

A couple days after being discharged, we got the results of the biopsies taken during the endoscopy. Everything at that time pointed towards food allergies.  Widespread food allergies.  We had to eliminate dairy, nuts, soy, wheat and egg.  We went into survival mode yet again.   What on earth do we feed this child?!  The formula going through the feeding tube was meeting his nutritional needs but the goal is to cut the tube feeds as soon as possible.  We didn't want him to forget his oral skills.

We went to the allergist and had a large skin prick test done.  They pricked his entire back and both arms with potential allergens.  That showed allergies to egg and peanut. So we can add back the other foods, right?  No. He's still showing some kind of reaction in his blood stream. And that has the doctors somewhat stumped. 
The second skin prick test this little dude has gone through.
But he had fun spinning the doctor's stool in the allergy clinic
And that's where we are right now.  He still has the feeding tube in place but we aren't using it. We are desperately trying to get him to drink the formula by mouth so we can have the tube taken out.  We have two appointments this coming week and we hope to have more answers. At least with his liver disease, we always knew what we were dealing with.  This latest challenge has too much unknown for my comfort level.

I will say that despite all that has been going on since October, our little man keeps smiling and doing normal toddler stuff.  At 17 months, he's all toddler boy: sticking his fingers in his nose and anywhere else they will fit, putting everything in his mouth, flashing an ornery grin when he's up to no good, etc.   We just keep reminding ourselves that at least he's not in liver failure anymore!

"I'll turn your world totally upside down."  That's an understatement!

Looking all sweet and innocent with his little feet crossed.

Friday, October 17, 2014

Mission: Undo What the Baby Did: Update 7

For the week of September 29, I got in 3 hours of exercise.  An hour short of my goal but my week was a little screwy.  We were supposed to head to Pittsburgh mid-week for Megatron's abdominal closure surgery but the surgery ended up getting rescheduled.  It threw me for a loop so I tried to cram in some exercise in the last half of the week.

By far the best workout was on Saturday.  I RAN 8 miles.  Not a run/walk but a RUN.  We stopped for a minute or two for water half way and walked through another water break closer to the end.  I was with my L2R gang and they really pulled me along.  They pulled me along so well that my pace ended up being at half marathon PR pace for me!  It was one last hurrah before we did head to Pittsburgh for Megatron's surgery.  It felt so good to hang out with friends for a good, challenging workout before heading into the stress of another hospital stay. What didn't feel good?  Sitting in a car the day after that 8 miler for 4+ hours as we headed for Pittsburgh.  Ouch.
And the week of October 6?  Nada. Unless you count standing next to a hospital crib or walking between the hospital and Ronald McDonald House.  Megatron had his abdominal muscles sewn back together on October 7.  The surgery went great but recovery was rough.  It was painful for him and very difficult for my husband and I to watch.  For about 3-4 days, it was hard.  Really hard.  As in, worse than the transplant hard.  But, each day got a little better and now we are back home to recover in the comfort of our own home instead of the hospital and then Ronald McDonald House.  And now that we are home, I can get back on the workout wagon!

Friday, October 3, 2014

Mission: Undo What the Baby Did: Update 6

Trying to make up for last week's discouragement, I woke up on Monday morning determined to turn it around.  As soon as I knew Megatron's afternoon nap was eminent, I strapped him into the run stroller and got to work.  The weather was perfect.  A couple miles in, something startled Megatron and woke him up but since he was being still, I figured he was still resting so I just kept going.  And going.  I stuck close to home since he was awake and I wasn't sure how long I had until his patience was out but he just hung out.  I kept pushing.  And I finally hit 6 miles!  That is the furthest I've gone pushing the stroller.  I also realized that it only took me 2 minutes longer to run 6 miles than it did the last time I hit a stroller run distance PR (5 miles).  I went an entire mile further in only 2 minutes longer!  While I may be discouraged by my lack of weight loss, seeing such a huge pace improvement was the confidence boost I needed!
Now that I have a sidekick with me, sometimes you just gotta stop mid run to check out the construction equipment.   The city is dredging our neighborhood pond, which happens to be a major rain water runoff pond for the city.  Downside to it is there is a ton of equipment rolling around on my path that I take for all of my stroller runs.  So far I've always been able to pass but they are making a mess of the asphalt.  Fingers cross they fix it!

After the 6 miles on Monday, a Jillian Michaels workout on Tuesday and two restless nights, I was dragging.  I still made myself go out the door though on Wednesday morning.  Megatron fell asleep quickly and I realized that I need to pay attention and recline his seat when he falls asleep so he doesn't slump over so badly...

It felt like I was running through molasses.  My pace was significantly slower than it was on Monday.  But I trudged through 4.5 miles before he woke up and I was ready to call it a day.

Thursday brought another Jillian Michaels workout but I cut it short after 45 minutes so I could pack a suitcase...

Because on Friday morning I was leaving on a jet plane!  After calling Southwest Airlines in January and crying while I canceled my flight to Orlando for the half marathon, I had unused funds available towards another ticket.  So I booked a flight to Denver to see my BFF who was going to meet me in Orlando.  We didn't get to do the half together but she was up for anything while I was in town.  In addition to just thoroughly enjoying her and her husband's company, we went for a run.  I was kind of wanting to get in 8 miles but due to heat and the altitude kicking my butt, we did just under 4 miles.  Hahaha.  Oh well.  I had a blast.  She brought her dogs so they were kind to me and we took breaks while they did their business and then took a few swims in the river we were running next to.  While hot, it was a beautiful day.  It was also a great way to see downtown Golden, CO.  I've been to the Denver area several times now and love it!  Everyone is active and outdoorsy, plus the communities support the active lifestyles with lots of multiuse trails, bike lanes and water bowls all over the place for the four legged companions. :) It was also the perfect way to catch up with my bestie.  And reenact a photo we took about 15 years ago.  This time instead of wearing matching sweatshirts in he the Smoky Mountains, we wore matching technical shirts in the foothills of the Rockies.  We don't have matching perms or glasses anymore but that's probably for the best.
Early 90s awesome!

Still's like time never passes.

Wednesday, September 24, 2014

Mission: Undo What the Baby Did: Update 5

I'm behind in my updates again so here's what the past two weeks of Mission: Undo What the Baby Did looked like.

Week 1: I'm still hitting my hourly goal for the week.  This week was 5.75 hours.  That was even with taking 2 days off.  Usually I've only been taking one day off each week.  Megatron was visiting his grandparents so I was buzzing through a mile long to-do list.  The very first thing I did after he left though was a Jillian Michaels workout.  I told you I'm determined to undo what that baby did to my body!  I also had a big victory.  I had my longest run since December!  The morning after Megatron left with his grandparents, I hit the road!  I ran 8 miles!  EIGHT!  The weather was PERFECT and I felt great.  I know I could have easily gone further but I knew it wouldn't be smart so I stopped.  I felt so strong the entire time which was reassuring that all the hard work I've been doing lately is paying off in some way.

Lovin' the cornfields in my hometown. :)
While Megaton was on "vacation," I spent one entire day cleaning and then went on a date with The Pilot but I also got in 13 miles total while he was away.  Thirteen miles while he was away meant 13 miles WITHOUT pushing the run stroller!  Happy mama right here.

I even got in an additional 5 miles once he was back from his grandparents' but The Pilot spent the morning with him while I went running with the local Moms Run This Town group.  That brought my mileage for the week to 18!  I can't even remember the last time I hit that many miles in a week.  Probably before my pregnancy.
But first, let's take a selfie! (Photo borrowed from MRTT page.) :)
I also spent some more time with the evil Jillian Michaels and made progress with the arms and abs challenges.  I still struggle with doing "real" sit ups and I am still doing modified push ups though I try to put my knees further away from my arms whenever I can.

Week 2:  I hit a bit of a wall this week.  I was pretty discouraged when I went to the doctor early in the week.  I've only lost about 2 pounds over the last several months despite kicking up the workouts several notches.  My bad cholesterol and triglycerides are also still high which frustrated me since I've cleaned up my eating significantly since we returned home after Megatron's transplant.  After reviewing my exercise routine and diet with the doctor, among other things, its becoming more apparent that my bad cholesterol and triglycerides may be out of my control and are genetic.  My good cholesterol and everything else looks great (looks better than it did in April) and since I don't have any other risk factors, the doctor decided it wasn't so high that I need medication as long as it doesn't get any higher.  Hopefully I can keep working on losing more weight which may help those numbers as well.  The whole ordeal was frustrating though.

In addition to that, Megatron has several medical appointments, including one sedated procedure, which is always stressful.  Nothing major, its just stressful and tiring.  I dealt with most of it on my own so by the end of each day, I was exhausted.  I was soooo ready for The Pilot to return home after 4 long days away.  I only got in one run and it was only 40 minutes while The Pilot stayed home with Megatron.  Ultimately what happened was in order to meet my goal of 4 hours of exercise in a week, I had to cram most of it in over the weekend once The Pilot was home to help out.

So I ended the week with 4.25 hours.  Just barely squeaking in there.  Blah.  It happened though.  And even though I was ready to call the week a wash and not even attempt to reach 4 hours, I sucked it up.  The Pilot pitched in and cleaned up the dinner messes after Megatron was down for the night so that I could spend quality time with Jillian Michaels.  I am so thankful that he has been so supportive during Mission: Undo What the Baby Did. 

Monday, September 8, 2014

2014 Emerald City Quarter Marathon

Better late than never.  On August 24, I ran/walked the Emerald City Quarter Marathon (6.55 miles).  This was the first race I actually "raced" since having Megatron.  There have been two 5k races but they were more for fun and about the mission of the respective charities (Arthritis Foundation's Jingle Bell Run and Lifeline of Ohio's Dash for Donation).

I did this race back in 2011 and remembered it being hot, humid and gross.  Why did I sign up for it again knowing I hate hot, humid weather?  I don't know.  Well, really it was because I was in desperate need of a race.  I wanted to do something my pre-baby-had-a-transplant self did.  Plus my friends were jumping off a bridge doing the race, so I signed up.

Me and Katy, pre-race smiles!

So guess what the weather was?  Hot, humid and gross.  The only thing that saved me from overheating and crying in a ditch was the fact that it was overcast almost the entire race so the sun was intensifying the heat.  I was so very thankful I didn't lose my mind and sign up for the half marathon!

Just like the last time, I struggled with shin splints in the beginning but after a mile or so that eased up. And just like with about every race, it took me about 3 miles before I truly felt in a groove.  Katy did the race with me and we chatted while doing a run/walk combo.  I'm still not back to running for consistent stretches so I just did my best to run as long as I could and then take a walk break no longer than a quarter mile.  For the most part that worked.

In the last mile, I was really starting to feel the heat and was ready to be done but I got a little extra pep in my step when two friends, Krista and Kristina, came flying past us on the half marathon course.  Yes, they both did the half marathon faster than we did the quarter.  No, I don't hate them for that.  ;)  They are amazing role models.  They run like the wind, have 7 kids between the two of them and are some of the strongest, caring and kind ladies you will ever meet.  Plus, seeing them fly by gave me some extra wind to carry me to a strong finish.

Katy lit a fire under my butt and made me run it in to the finish...starting the last run much sooner than I would have if I had been alone.  And we did have a great finish.  1:34!   I was pretty surprised to see such a "fast" time for my first real comeback race.  About 9 minutes slower than 2011 but considering all that has gone on in the last year, I was very proud of that time.  And as always, it's a blast to spend time with friends.  Especially friends who have supported me both on and off the race course...

Right before the race started a group of friends gathered around me and I was pretty sure they were about to tell me I had toilet paper stuck to my shoe since I had just returned from the portapotty.  But instead, they presented me with a medal.  They wanted to recognize that while I didn't get to do my planned comeback race in January and didn't get the Disney medal I was after, I got the best medal of all, my little Megatron.  Isn't this the sweetest thing you have ever seen?!  I love them all so much and am so thankful they are in my life and have really stepped up to help me cope through Megatron's challenges.

Mission: Undo What The Baby Did: Update 4

Given that it is Monday again, I'll update my progress from the past two weeks.

Week 1: Success!  I got in 5.75 hours of activity.  I did one stroller run/walk (5 miles) and was pooped.  I really wasn't planning on going that far but Megatron fell asleep later than usual (nearly 3 miles in) so I had to keep moving until he woke up from his nap.  I might be a rookie parent but I know enough not to wake a sleeping baby....even if it means putting in more miles.

I also did a 5 miler with some training buddies a few days later and I was so proud/excited that I was able to cover the same distance I did with the stroller but 11 minutes faster.  11 minutes!  It's amazing how much harder it is to push the stroller.  It also helped that I was with people for a couple stretches of my stroller-free run and was able to run longer and take shorter walk breaks.  Thank you Lisa, Jim and Kami!  You pushed me without even realizing.  Well....Lisa probably realized because she had to yell at me to start running after a walk break.

Week 2: Success!  I got in 6 hours of activity.  My most yet since keeping track and probably the most I've done in a week since the beginning of my pregnancy.  I was pleased to see how much this week added up to because I was pretty fatigued all week and not very motivated.  I somehow managed to force myself to get something in 6 out of 7 days.

I only did one stroller run/walk (4 miles) due to the heat but I did spend an hour and 45 minutes with Jillian Michaels this week.  I'm now on day 22 of the abs and arms challenges.  I'm really starting to hate planks but I'm still plugging away.  It was also a very fun week.  My hubby joined me three days in a row.  The most fun was a 45 minute hike with him and Megatron.  Love these boys!

In addition to the fun hike, I had a BLAST racing on Sunday!  I did the New Albany Walking Classic 10k.  My half marathon walking PR is at the New Albany race but I haven't walked the 10k since 2006!  Thinking back to that race, SOOOOO much has happened.  I didn't have a blog, a husband or a baby.  I'll post more on the race soon (so behind on race recaps!!).

I've completed 4 weeks of tracking my progress both by writing it down and blogging about it and I think both have kept me much more accountable.  Looking forward to adding it up each Sunday evening but not having the pressure of having to do a set workout each day is working.  I have to be flexible with Megatron in the picture but having a weekly goal instead of a daily goal seems much more obtainable to me right now.  I've been doing some kind of activity 6 days a week which is a huge improvement over the random 1-2 days here and there, with some weeks lacking completely.  I went ahead and printed out another 4 weeks of fitness calendars so I can keep it up.  My goal is still at least 4 hours each week but I'm seeing that 5 hours is still very reasonable.  As I get closer and closer to finishing the 30 day arms and abs challenges, I need to start looking for something new to do.  I like having the option of a quick 10-20 minute workout I can do on busy days, bad weather days, or days I'm just not into it. 

Sunday, August 31, 2014

Day in the Life: Megatron at 13.5 months

It's been about 3 months since I did a "day in the life" post so I thought I would do it again.  Mostly for myself.  Time seems to be flying by lately (I mean, this kiddo is SIX months post-transplant this week!) and I don't want to forget these baby days.  So here is what we did on August 28.

My alarm went off at 6 am but thanks to an hour long Jillian Michaels workout the night before, I was sore and exhausted.  I finally dragged myself out of bed around 6:20 am and shuffled my way downstairs to get Megatron's meds ready.  The past couple weeks he's been sleeping soundly in the morning and we have to wake him up to take meds at 6:45.  I hate waking him up but luckily he's usually pleasant.  Today though?  He was tired.  As soon as I picked him up, he laid his head on my shoulder.  Something he rarely does.  

After meds and a bottle (7 ounces still but now we are mostly on whole milk with a splash of formula-mostly just using up the last canister of formula), he's usually ready to play but today he was very clingy.  He wanted up, but not really.  So I put him down.  Then he tried to bite my leg.  
He finally entertained himself by emptying his diaper bag while I made breakfast for myself.  When he got quiet, I looked over to find him trying to pick a piece of dried food off the floor.  Looks like I missed it with the mop the night before.  Gross.

After chasing him away from the cat water bowl and from trying to pull a lamp over, he finally played with his toys while I ate.  After I was done, I took him upstairs so I could get dressed.  We have some toys in our bathroom but recently he likes to play with the hangers that are on the floor waiting to go to the basement with the laundry.

We went back downstairs and played with toys until it was ready for his second breakfast.  I made him a whole grain waffle with butter and some bananas, a cup of whole milk and one of his after breakfast meds.  
Yup, a Valentine's Day bib.  Might as well get more than one day of use out of those holiday items!  He looks proud because he finally figured out the sippy cup and loves to do it himself.
As soon as I cleaned him up from breakfast, I put him in the Pack'n'Play so I could run to the garage to set up the run stroller.  I also ran to the backyard to dump the water from his baby pool.  We were splashing around the day before when a pop up storm rolled in.  By the time I got a chance to go dump the pool, it was prime mosquito time.  I am already recovering from being a buffet for the mosquitoes a couple nights ago, so I left the pool in the middle of the yard.

I came back in to find Megatron chewing on the rail of the Pack'n'Play.  Teething and boredom makes for a slimy play pen.  He smiled and inhaled sharply as I picked him up.  It's his way of saying he was excited I picked him up and got him out of baby jail.  I put him in the run stroller, handed him a toy and we were on our way.  Normally he falls asleep within the first half mile, but at mile 2.5 he was still awake.  He finally fell asleep a few minutes later, but I really only planned to go about 3 miles.  I had to keep going because I knew he wasn't asleep enough to be picked up and taken to his crib and stay asleep.  I was really losing steam by 4 miles so I did a lot of walking that last mile.  I was about to just go home and sit on the front porch while he slept, but he woke up sooner than usual, so I started to head for home.  We got in a smidge over 5 miles.  And I was feeling it!  
I feel bad picking him up when I'm all sweaty so I kind of held him out and plopped him in the family room.  He played while I attempted to stretch.  So sore!  More from Jillian Michaels than the 5 stroller miles I think.  I took Megatron upstairs and put him in the baby jail that is in our bedroom while I took a quick shower.  When I got out of the shower, this little face was peering at me from around the corner.  I sprung him from jail again.  He crawled around the bathroom and played with hangers....they make a lot of noise when they hit the hollow bathtub....while I finished getting ready.
Time for some laundry.  We went to the basement to get some laundry started.  Back upstairs I had to pin him down for a diaper change.  He tries to escape every.single.time.  I've tried books and toys, diaper changing supplies, cat toys, everything to try to get him to stay on his back for the diaper changes but no such luck.  He's wild.  

We read some library books (he actually sat through 4 books!) and played a little more until it was time for lunch.  We had some leftover pasta so I added a little Romano/Parmesan cheese to his (we are still trying to add calories wherever we can for him).  We also had some mixed veggies with edamame, and grapes for him.

While we ate, I iced my knee, which decided it was cranky.

After I cleaned him up from lunch and put him on the floor, he made a bee line for his new car seat which is still sitting in the living room.  I think we have a climber on our hands!  He face planted into the seat and crawled right in.  He tries to climb on everything!  He didn't get the memo that he's only 27 inches tall and a little too short to climb on too much.  That doesn't stop him from trying though. 

Since he only slept about 30 minutes in the stroller (instead of his usual hour), I was worried about him being cranky for his 2 pm physical therapy appointment.  I take that back.  I was worried he would fall asleep on the car ride there and I'd have to wake him up after a 10 minute cat nap.  I decided to leave early so he could sleep longer.  I brought a book to read in the car.  It was a perfect plan.  Ha!  For once, this child didn't fall asleep in the car.  I kept driving around thinking he would be asleep any second.  Nope, he just sat there, squealing.  I finally gave up and headed to his PT appointment.

We haven't been to PT in a month because he's been doing so well.  She wanted to see him again to make sure he was staying on track with his "emerging" skills: crawling on hands and knees and walking with assistance.  She was amazed with his progress!  She had him crawling and climbing on obstacles to gauge his strength.  He really doesn't need her help anymore, but they are going to keep him on their service until after his abdominal closure surgery in early October.  He might need some help catching back up after surgery.

After the 45 minute appointment, kiddo fell asleep in the car within minutes of pulling out of the parking lot.  Luckily he was still conked when we got home and I easily transferred him from his car seat to his crib where he slept for an hour.

While he was asleep, I worked on a few things on the computer, including printing a cover for a photo album we are in the process of making for him to look at.  

Once he woke up, he got pinned down for another diaper change before heading downstairs to have a small bottle and to play.  We are slowly decreasing that bottle and will replace it with a snack soon.  Once he was done, he was more interested in walking around than playing. He's getting more and more stable but still needs to hold on with both of my hands.  Sometimes he will take a few steps while holding one hand but then he starts to whine and reach for your other hand for help.  

I got him distracted with the box of ribbons that I showed him back when I did the last "day in the life" post while I made dinner.  Tonight we had grilled cheese but it was fancy!  Provolone, muenster and spinach.  I've been trying to sneak more spinach in our food because he recently stopped taking an iron supplement and because we are raising him vegetarian, I want to make sure he's still getting enough iron through his diet.  He also had a hard boiled egg, veggies and banana.  I had a salad too.

He was a clean plater!  And only a few pieces of corn made it to the floor and that wasn't intentional.  They stick to his fingers and fall out.  :) Notice the cat in the background enjoying a few minutes of rest without worrying about Megatron trying to "pet" her.

After getting cleaned up from dinner, we took some selfies.  He loves to look at himself on my phone.  I love his onesie.  

One can only take so many selfies so we headed outside to play on the swing set.  I love that the swing set is in the shade in the evening so we can go out without being blinded by the sun.  He likes to swing, but he's still a little small and starts to slump down in it.  He also loved going down the slide and walking barefoot in the grass.  He got a kick out of me holding him and then pushing the empty swing and watching it go back and forth.  I have no idea why but he was giggling every time I grabbed it and then let it go again.

I try to have him inside and heading towards the bath by 6:15 at the latest so he's all ready for meds and his bedtime bottle at 6:45.  He loves the water and now that he can stand, he likes to stand and the edge of the tub and watch it fill up.  This picture cracks me up because he wanted so badly to climb in.  He kept raising his right leg but obviously he's short and wasn't going to get anywhere.  

After the bath, it was back downstairs to get his meds and bottle ready.  Evenings are getting easier and easier.  We only have two meds given through syringes and one pill.  This is a lot fewer syringes at night than a couple months ago.  Progress!  At 6:45 I gave him his meds and then a bottle.  Again, it's formula and whole milk mixed.  He's still drinking 7 ounces before bedtime and when he gets up in the morning and since he's still so small and needs to gain weight, I'm not in a hurry to get rid of those bottles.  Plus he's still very interested so we will just transition from the bottle to drinking from a sippy cup for those "meals."

After he finished the bottle, I took him upstairs and read him a book, turned on his music, put him in his crib and didn't hear from him again until 6:45 the next morning.  Well, sort of.  He sleeps through the night but he's a noisy sleeper.  He sometimes randomly cries out, sometimes for a minute or so but then settles down again on his own.  I've read that some kids taking the same immunosuppressant have sleep disturbances, but he almost always falls right back to sleep so I don't have go to him.

I wasn't as productive around the house because of my run and then his PT appointment so I got to work after he went down.

From 7:30 to 11:00 pm I raced around:

I got some laundry started.  I called my mom while I picked up toys in the family room.  I unloaded and loaded the dishwasher.  While I cleaned the kitchen counter, I looked over and realized that the cat was watching PBS.  I had flipped on a documentary, Earthflight, all about birds.  Needless to say, the cat was in love.

Once the kitchen was clean, I made another mess.  I realized the bananas I had were looking really sad, and I doubted I'd have time the next day so I went ahead and made a batch of banana chocolate chip muffins.  Yum!  I also threw in another load of laundry.

While the muffins were in the oven, it was time for my least favorite chore: washing syringes.  Of all the chores associated with the baby, I hate this one.  It's not hard, it doesn't take that long, it's just something I really dislike doing.  Once they were all washed, I stuck them in the drying rack and moved on.  More laundry!

I washed up the mess I made from the muffins and then moved on to clean up the kitchen table, Megatron's booster chair and the floor around his chair.  That child can make a heck of a mess during meals.

Once everything was clean and I dealt with more laundry, I finally sat down to stuff some cloth diapers.  The cat tried to help but ultimately sat down to watch as I put the absorbent inserts into the diapers.  It's a mindless chore that I can do while relaxing in front of the the TV.
All ready to be pooped in!  :P

I finally went upstairs to go to bed.  I laid down and read for a few minutes to help turn my brain off.  I also reassured myself that The Pilot would be home the next afternoon.  Usually after a couple days of being on my own with Megatron, I start counting down the hours until I have some backup.  And after two really hard workouts while he was gone, plus taking care of Megatron, I was exhausted!

Wednesday, August 27, 2014

Mission Undo What the Baby Did: Update 3

Last week went much better than the week before.  I had over 5.5 hours of exercise.  I had a race at the end of the week but I tried hard to not slack off before the race.  I did skip the abs and arm workouts the day before and the day of the race but I got them in the other 5 days.  I was even able to progress each day with the abs and arms challenges.  They are definitely getting harder each day but I'm doing my best to hang in there with the schedule.

I also tried a Jillian Michaels yoga video.  It was HARD!  I had to modify A LOT of the moves and had to take a few breathers.  She moves fast through each move to burn more calories but it was a little too fast for my fitness level but also for the speed my brain can compute what she is doing.  I also somehow managed to pull a muscle in my hand during the workout.  Seriously?!  It took a couple days before I could do a push up with an open hand!

I was feeling a little run down so rather than trying another high intensity Jillian Michaels, I opted to do the post-natal rescue video twice.  It's much slower pace and focuses on strengthening the core but also incorporates some leg work that I've noticed has helped with some tightness I've had in my hips.

On Friday, Saturday and Sunday I got in some great mileage!  14 miles to be exact!  Friday was a family 3.5 mile walk.  Other than spending time together, the best part was that The Pilot pushed the stroller!  Saturday might as well have been a 4 mile swim.  For once I wasn't exaggerating and it really was 100% humidity.  It was about 70 when we got started but it felt like 90.  Katy pushed me through it though and we did a lot of running and finished just under an hour, which put me at pre-pregnancy pace....for walking but hey, it's progress.

Sunday was the jackpot though!  It was my first "real" race since having Megatron.  I've done two charity 5ks for great causes but this was a chance to race.  It was a quarter marathon, so about 6.5 miles.  I'll hopefully get a full race recap written soon but it was an amazing morning!

And since this is an undo what the baby did post, how about a picture of the guilty party.  He likes to steal my food.  This time he stole my nectarine and started gnawing on the core.

Tuesday, August 19, 2014

Mission: Undo What the Baby Did: Update 2

I fell a little short of my weekly goal (at least 4 hours of exercise) last week.  I came in at 3.5 hours.  I only missed one day completely and if I would have planned a little better, I would have been right at the 4 hour mark.  We were road-tripping on Friday and I should have just done a quick workout before we hit the road for home but I didn't.  Oops.  Next goal: plan ahead!

I did spend 30 minutes on the treadmill at the hotel while we were away.  And it was about 100 degrees in the fitness center.  Maybe that counts for extra time??  I was dripping as I walked back to my room which was luckily not too far away and I didn't run into anyone. Not that it would have mattered, the hotel was full of gaming convention attendees and airline employees.  There's only one airline employee that I ever try to impress and he was sitting in a hangar somewhere proving he knows how to operate the windows in the cockpit so I knew I would be cleaned up before I saw him again.  Anyways...

Why, oh why do they put mirrored walls in hotel fitness centers?  I do not need to stare at myself while I sweat buckets.  Also unnecessary?  The windows behind me that faced the lobby.  I do not need all the hotel guests looking at my sweaty back!
I made it to day 9 of the arms and abs challenges but it's getting hard!  My theory is if I don't successfully complete a day, then I have to try it again.  Once I finish it, then I move on.  That means I did have to repeat a couple days (and then missed Friday completely).  Ultimately it will now take me more than 30 days to complete the challenges but it seemed like cheating if I don't actually complete each exercise outline on a given day.

On Saturday, I got my butt kicked by Jillian Michaels.  I attempted one of her hour long workouts again.  The first attempt I only made it 45 minutes before I waved the white flag.  This time I stuck it out the entire hour.  There was only one move that I could not do at all.  As in, my brain couldn't even figure out how to attempt it.  And then I did have to use her modifications quite a bit.  But I survived an hour.  I was dripping though!  And then when I tried to walk down the stairs afterwards, my quads were shaking.  Fun times.

Not so fun?  Doing that Jillian Michaels workout at 8:00 pm and then making plans for a 4 miler at 9:00 am the next morning.  The plan was to do a pretty solid run/walk but after I woke up and realized every fiber of my being ached, I knew I would have to just get through the miles.  Katy met me at my house, I strapped Megatron into his stroller and we were off....very slowly.  We only did two run breaks and walked the rest.  But it was over an hour of exercise and even though I was sore, I still got it done.  Plus, I got to have adult conversation which is hard to come by when I'm home alone with Megatron. 

Monday, August 18, 2014

One Year

One year.  It's a miracle that we are still standing. It has been the longest, yet fastest year of my life.  It's been the most heartbreaking, yet joyful year of my life.  It's crazy how it could have been all those things at once. I've heard people say about parenting that the days are long but the years are short.  I cannot think of a more accurate description, particularly because of our circumstances this year.

It started with my unexpected early delivery of Megatron.  That seems like a lifetime ago.  I remember thinking at the time that those first 24 hours of his life were the most difficult thing I had been through because I wasn't allowed to see him.  Ha.  I can barely remember what it felt like.  Both because of the medications I had to be on but because we have been through SO much since then.

Ten days after he was born, my beloved grandma and whom Megatron was named after, passed away.  Then there was Megatron's diagnosis and prognosis.  Then The Pilot's uncle passed away after a very short illness.  Then Megatron's first surgery.  Then I found out my dad was living a lie and was making morally questionable choices.  Choices that made me feel it was important to shelter myself and Megatron from, so I had to distance myself from my relationship with him.  Like an ocean between us kind of distance. Then my brother's family lost a furry member of their family, one of their cats.  In our family, cats are family and when any member of the family hurts, we all hurt.  Then I had to walk away from a career I truly enjoyed because we saw the writing on the wall.  We wouldn't be able to balance my travel schedule with The Pilot's schedule while taking care of Megatron's complex medical needs.  Then my parents sold the house where I spent my formative years and ended their marriage after 41 years.  Again, when one member of our family hurts, we all hurt.  My heart was breaking not just for myself but for my mom too.  Then Megatron's liver started to fail.  I had to abandon my annual trip to Disney for the marathon because my sweet boy was in intensive care. He developed life threatening complications from his liver disease.  We came within days of losing him.  Then, in the greatest act of selflessness, The Cousin gave Megatron part of his liver.  Then my mom's cat passed.  He was a kitty that we got when I was still in high school so he was just as much my cat as he was her's.  Things slowly started to get better.  Megatron finally started to grow and thrive.  He didn't look sick anymore.  We got to come back home after 6 weeks in Pittsburgh.  We have still had a roller coaster since Megatron's transplant, from another hospitalization and three more trips to the emergency room, to nutrition setbacks and minor rejection of his "big boy" liver but overall, things really started to settle and we worked on finding a new normal.  Then, two weeks ago, we had to say goodbye to one of our cats.  It was very sudden and heartbreaking.  This was the kitty who we assumed would be Megatron's buddy.  Wherever the baby was, DC was nearby.  I think he sensed Megatron's special needs and was there to "protect" him.  It felt like once again, we had been punched in the gut.

It felt like with each heartbreaking event, the Universe was trying to knock me down a peg; Like the Universe was trying to break me.  While from the outside, it may have seemed like I was holding up well and keeping a positive attitude but in reality, it felt like the weight of the world was crushing me.  On multiple occasions this year, I questioned what I had done in this life or another, to deserve all this.  I questioned if I had somehow knocked my karma out of balance.

Some days I still feel that way and it's a challenge to realize that our family was given two incredible gifts.  Megatron and his new liver.  But each day I become more and more thankful.  I believe that Megatron was born early so he could meet my grandma.  I think my grandma held on long enough to meet him.  I think he came early so that he could be a joyful spot through all of the grief that our family was about to experience.  I think the heartache we experienced from his liver disease showed our family not to take one moment for granted.  We hug tighter.  We say I love you way more than we ever did before.  We are closer than ever.  We learned what it means to be selfless after seeing what The Cousin did for us.  After seeing that donor blood saves lives, some of us overcame fears and donated blood.  We do our best to pay it forward whenever we can now.

I see so much kindness in people around me now and that is my reminder that we survived this because of the kindness of others. Sure, at the end of a long day, even an incredibly fun day, I sometimes lay down in bed and sob.  How are we still standing?  How and why did all this happen? Sometimes I'm still angry that my one year old baby is on 8 medications.  That three times a day I have to give him medications and then wash the countless syringes.  That I have to argue with pharmacies and the insurance companies.  That I have to be "that" parent who sanitizes everything in arm's reach of the baby when we are in public places because his immune system is suppressed.  That my dad walked away from the life and family he created. That we lost so many amazing family members this year.  But then I hear Megatron breathing or sighing in his sleep over the baby monitor and I'm put back in my place.  We were given a second chance with him and I need to accept those challenges.  So I flip through a couple pictures of him and see his smile.  He's been through more challenges in one year than most people face in a lifetime.  Yet he's still smiling.  And I smile because he's here.  And he's thriving.  See why I think this baby was a gift to not just me and The Pilot but to our entire family?

So with each day I do my very best to focus on the amazing aspects of our days.  I try to focus on how far Megatron has come.  Six months ago, we nearly lost him and now he's crawling and will be walking soon.  Sometimes I fail miserably but others days I want to shout from the roof tops.  "LOOK at my baby!!!  He just climbed up the stairs!  He just learned to use a sippy cup!!  He's amazing!  He almost DIED and now look at him!"  While I brag endlessly on social media about him, I try to refrain from blurting out to strangers in the grocery store that he is a miracle and just let them comment on what a peanut he is.  I just smile and nod.  Of course he is special but I don't want him to grow up feeling different.  He will live in a medical world but I want him to feel "normal," whatever that is.

I'm so thankful we did monthly photos of Megatron this first year.  Even though one was taken in a hospital and one was taken 2 weeks late because we were in a hospital.  Even though he looks so sick in the 7 month picture (2 weeks pre-transplant) and so skinny in the 8 month picture (2 weeks post-transplant).  I'm glad we recorded our year even though it was traumatic. We won't ever get the first year back, so even though some of it looked so scary in pictures, I'm glad we documented it anyways.

It's been a hell of a year and if I could change it, I would.  While we have learned to appreciate life more, I would still take back Megatron's liver disease if I could.  But I can't, so I will try hard each day to focus on the good things in our world.  And I will focus on restoring some karma in my life!  Because I still think it must be out of whack!

Happy First Birthday my sweet boy!  You are one hell of a fighter, that's for sure!
Megatron at his birthday party...with his smiling, plush liver that my brother and his family found online.  He loves it!  And see that thing sticking out the top?  That's the hepatic vein and he loves to chew on it.