Thursday, June 9, 2016

Megatron Update: Medical Stuff

Despite Megatron being healthier than he's ever been, things have been busy lately in terms of his medical care and development and I haven't really talked about that much on the blog.

Last month we had his annual exam in Pittsburgh with his transplant team.  All but one of the surgeons and even our usual nurse coordinator were all out at a conference (which they didn't find out about until after we made all of our plans, including The Pilot requesting vacation time). But we still got to see some familiar faces and there were all super excited to see how big Elias has gotten and just how well he's been doing.  His lab work has been really stable, even as they lowered his immunosuppressant.  It's not just a hair over "undetectable."  Normally they like to have the level a little higher but his liver and kidneys are happy and that is the priority.  His EBV level has been creeping up again (which is always a concern because if left untreated, it can lead to a type of cancer) but as soon as they lowered his immunosuppressant, the EBV came back down.  Up until now, it's always seemed to be a little bit of calculated risk.  Keep the immunosuppressant as low as possible without seeing the liver numbers go up.   But now, they have something really exciting (for families like ours anyways) to help determine risk.

Right after the transplant, we enrolled Megatron in a research study that one of his surgeons was doing.The goal was to create a blood test that would determine the "level" of a post transplant patient's immune system.  It essentially tells them which patients are at higher risk for rejection.  So Megatron was part of that research and recently, the test has been approved for use!  So when we were in Pittsburgh, they drew what looked like a gallon of blood from him.  Some for the various research studies, some more his routine monthly lab work, some for annual lab work and then some for the new test.  A few days after we came home, we got the results of the new test.  Megatron is now considered low risk for rejection and that means he can continue to stay on the low dose of immunosuppressant as long as his liver stays happy.  They also ran a more detailed test on his kidney function and that looked great too.  His immunosuppressant is very hard on the kidneys (as in many patients eventually need a kidney transplant) but his seem to me trucking along just like his liver.  Nothing but great news!

The nurse practitioner commended The Pilot and I for following the post-transplant "rules" as well as taking advantage of the resources available to us to make sure Megatron is catching up (speech, occupational and physical therapy, nutrition, etc.)
was doing.
Speaking of nutrition, it's been over a year since we met with a nutritionist about Megatron's diet.  When we first did the top-8 elimination diet, his local GI doctor wanted to make sure we were still meeting all of his nutritional needs.  There was certainly a learning curve but we were managing.  Megatron has grown A LOT since then so it was time to take a look at what he's been eating and compare it to his current nutritional needs.  I kept a food diary for a week and gave it to the GI clinic.  I was so excited when the nutritionist called me and she was excited with how well he's eating.  We are RIGHT on target with meeting all of his nutritional needs.  Even with protein!  Even though we had to abandon a vegetarian diet for him when he was diagnosed with eosinophilic gastroenteritis, he's still only getting animal meat a handful of times over the course of a couple weeks.  But lentils and quinoa are frequent staples in our house and those provide lots of protein and iron so we are meeting those needs through plant-based foods.  The nutritionist was really impressed at the variety of foods we are offering and the fact that Megatron eats really really well both in terms of quantity and the food itself.  He's not all that picky and there really aren't any vegetables that kid won't eat.  She said it was refreshing to see he hardly eats any processed food.  That phone call really made all of the hard work worth it.  Because as a type-A mom, I'm always worried that he's eating enough of the right foods.  I mean, it's obvious that something is working because he's growing but with such a restricted diet, it's hard to know if we really are feeding him what's best.  But she assured me that we are doing great.

We also got another pat on the back from our local school district.  Our state's early intervention program will end next month when he turns 3 (3!!!! Start the crying now!) so the school district is now preparing to take over.  They recently did a multi-step evaluation process with us and we just had our meeting to discuss the results.  Basically they did find him to have a speech delay and when the school year starts in the fall, they will offer him a weekly speech therapy session at our home elementary school.  Which is great because it will get him used to the school and give us a chance to get to know the school administrators and therapist so when kindergarten rolls around, the transition will be easier.  The great news about the whole evaluation process was that they do not feel his delays will effect his ability to learn in a traditional classroom and he doesn't need their special needs preschool.  While he did score below average in a few areas (specifically expressive language/speech and some gross motor skills), there is no reason to believe he won't be caught up by kindergarten.  We weren't particularly worried about this, but our goal has always been to just take advantage of the resources available to us to help him catch up.  And honestly, this kid loves going to the hospital's outpatient facilities for things like labs and speech and then going to the preschool for the evaluation.  He is really cooperative when it comes to interacting with adults (other than with family, with whom he can be a typical pain in the @$$ toddler) and they always make it fun. Plus, he doesn't know any different.  The school psychologist mentioned it a couple times that he was very sweet and empathetic, a trait that many toddlers simply haven't learned yet.  Another thing that didn't exactly surprise us but was nice to hear from a professional, was that some of his receptive language and cognitive skills scored him into the 4-year-old category.  Meaning our little man is very smart, he just has a hard time getting the words out of his mouth to express those smarts.

I can't even explain how good that feels.  Especially since before transplant, there was a real fear that the toxins building up in his body because his liver wasn't working were starting to effect his brain, which is very common in patients in liver failure.  It was a real enough fear that Megatron has had a head CT and MRI.  But based on what the school evaluation told us, little dude is smart and his body is just taking it's time to repair itself and catch up from his traumatic first year of life.  They also pointed out that we have done everything right when it comes to helping him catch up but also making sure we are exposing him to books and talking about letters and numbers all the time. So even though most days it feel like I have no idea what I'm doing, the professionals seem to think I'm doing just fine by him. Talk about a sigh of relief!

Megatron has still be getting some somewhat intermittent private speech therapy as well as occupational therapy through the early intervention program.  The progress has been somewhat slow but it's there.  And it's been an absolute blast interacting with him now that he's speaking more and more.  Don't get me wrong, there are lots of moments when I have no clue what he's trying to say but I'm usually his translator and can figure out what he's talking about.  He's also getting more and more confident when it comes to navigating the world.  He's slowly figuring out how to run and climb.  He's just doing everything in his own time.  I sometimes get a little anxious/impatient because as his mom, I naturally want him to fit in and be able to keep up with kids his own age but I also don't want to rush him.  I missed out on that sweet and fast newborn/baby stage because he was so sick so I'm trying to enjoy this time that he's still little and not quite up to full speed like other kids his age.  I don't want to miss a thing because I already missed out on too much!



Saturday, June 4, 2016

My friends are all doing it

They aren't exactly jumping off a bridge but close enough. They are all signed up for a local triathlon and when the opportunity presented itself to register for a fraction of the current price, I figured, why not?!  I mean, I'm already training to swim the 1/2 Ironman relay and I'm training for a September 1/2 marathon, so why not add in some cycling and do a triathlon this summer.  Sounds logical.

About as logical as me being the Ironman relay swimmer.  I can't exactly swim and ride my bike with Megatron.  Which means I have to 1) get creative with my training and 2) be very flexible with when and where I train.  There are the 5:30 am swim practices.  I still randomly run on the treadmill at 9 pm.  My mom has watched the rugrat while I went for a 25 mile bike ride.  Whatever it takes.  The downside to the cheap registration fee (it was transferred from another athlete who can't compete now), is that it's for an Olympic distance tri.  I've only done that distance once before and it was SIX years ago.  Yowza.  The sprint distance might have been a little more realistic but go big or go home, right?

My goal is to finish.  I'm not even going to attempt to try to finish faster than I did 6 years ago.  It's not unrealistic to do that just based on my weight loss and current fitness level but I know full well that I'm not training exactly how I ideally would to do my very best.  My life is nothing like what it was for that first one (I wasn't even married yet!) and now Megatron comes first 95% of the time.  I have to squeeze my training into that 5% of time.  :) 

I've been having fun though.  I've been knocking out the 1/2 Ironman swim distance (1.2 miles) roughly every week or so, so I know I can finish.  I recently did a 25 mile bike ride.  It was slow and steady but it wasn't awful (especially since its only my second ride in FOUR years).  While I was still slow, I noticed that I was able to stay in a harder for nearly the entire ride.  I have 3 gears in the front and four years ago I was always hanging out in the middle ring.  This last ride, I stayed in the big ring except for a big hill.  My legs are certainly stronger than they were back then!  Hopefully I can get in some more decent rides to work on increasing my pace just a little.

Obviously I can now run the 6.2 mile run at the end.  It will feel like running on Jello for the first 1/2 mile but I know what to expect now.  As long as I leave some gas left in the tank after the ride, I should be able to run the bulk of the the 10k.  Six years ago, I was only just starting to run at all so it was still very difficult just to run, let alone after swimming and cycling, so there was a lot of walking going on.  So I would hope to have a stronger run this time around.  Honestly, my biggest concern is the weather.  The race is in 6 weeks.  You know, mid-July.  Heat and humidity have always been my nemesis so we shall see.  That is out of my control so I'll just do what I can! 

I'm really looking forward to the race though.  It's far enough away that I'm not nervous yet but it's soon enough to be excited. I'm also enjoying the break from nothing but running.  I also like that the swim trainings are on week mornings.  It's much more likely that The Pilot is off on a week day than a weekend so I've enjoyed working out during the week without having to push Megatron or have the baby monitor turned all the way up.  My training perspective sure has changed over the years!

Friday, April 8, 2016

Crafty Lady

Anyone who knows me already knows this but I am a total "Pinterest mom."  You know, that mom that makes DIY toys for my kid and hand makes gifts and party decorations.   I mean, I made him an elevator out of a cardboard box last year (with The Pilot's help).  I'm secure enough to own up to all of my "labels," including Pinterest mom.  I don't apologize for it because I was a crafty lady before I had Megatron.  I've always been creative.  Opening a new box of Crayola crayons was pure heaven as a kid. Who am I kidding?  I still love a brand new box of crayons. I read this article that put into words who I feel about being a "Pinterest mom." I didn't make 20 feet of paper chains for Megatron's 1st birthday party because I thought he would like it or remember how festive his party was.  I made them because I like to do that kind of thing.  I don't think anything of it when I go to a party and someone hangs up store bought party decorations. I'm not judging anyone for not making random crafty things like I do because not everyone is crafty or has the desire to be.

Before I started my journey as a stay at home mom, I was an event planner.  I frequently used my crafty skills to add personal touches to the events that I planned.  I frequently would bring projects home with me at the end of the day so I could use my craft supplies to add some flair to board member gift bags or vendor thank you cards.  I didn't have to, I wanted to because that's just who I am.  So now that I don't have a professional outlet, I craft at home for my kid.  I give handmade gifts.  I make stuff just for myself.  I make stuff because it gives me an outlet from the monotony of staying home and raising an extra special kid.  Time spent crafting is "me" time.  It's no different than when I go for a run really.  Running and crafting helps clear my head and makes me feel whole again.  It's no secret that I've had a hard time adjusting to staying home with Megatron.  It wasn't part of the plan and I knew I wouldn't be completely fulfilled "just" staying home with him.  I'm making the most of it because I know it's the right thing, right now.  I'm finding a much better balance of getting "me" time and making sure Megatron isn't running with scissors and is happy and healthy.  That's because I'm making more time for running and crafting.

So now to where I do that crafty stuff...

When we first walked through the house we ended up buying four years ago, there was one bedroom that basically sold the house for me.  We liked the first floor but when we walked up the stairs, there was a bed room that screamed "craft room!"  Yes, it really did.  If you are at all creative, you know what I mean.  At my condo that I owned when I met The Pilot, I had a craft space but it was in the basement without any windows. Not very inspiring.  This house had an extra bedroom upstairs with a big, east facing window.  We knew we wouldn't need it as a bedroom and The Pilot was happy because I was happy (smart man!) so we bought the house and bam, I had my own craft space with a window!  The craft room is also my "Disney" room where I hide all my treasures so people don't walk into our living room and feel like they are in the middle of a Magic Kingdom gift shop.  Not that there is anything wrong with that, but I did marry someone who simply tolerates my love of Disney.  And if he let me have my Disney collection all over the house, I would have to agree to have model airplanes all over the house.  Marriage is all about compromise, is it not?  So my Disney collection decorates the walls and shelves of the craft room but the furniture itself was a random assortment of college particle board shelving and hand-me-downs.  It was all mostly functional but it didn't feel like a grown up, inspiring space.

In the fall, The Pilot and I borrowed a larger car and made a (kid-free) trip to Ikea (currently, the closest store is about 90 minutes away so it's a production to go there).  I was hoping to find a new craft table.  I figured I would end up with an inexpensive desk and that would be that.  Until we got to the kitchen section of the store and I saw a giant kitchen island.  I fell in love with it.  The Pilot knew it.  We went back to the desks and I sat at probably a dozen different desks but I kept thinking about that island.  It cost more than we had planned to spend and I was about ready to settle for a simple desk when The Pilot gave the thumbs up.  It was going to be both my Christmas and birthday present....for the next 3 years but I was so pumped.  That bad boy went home with us.  It took us awhile to put it together because it was a 2-person job and finding free time when The Pilot and I are both home was a challenge.  So we finally got it put together.  What we didn't realize when we bought it was that it was an unfinished butcher block work surface so it would need sealed first.  OK, no biggie.  Except once we got the sealant and read the instructions, we realized it was a couple months long process.  What??  I wanted to do crafty stuff NOW!  But if we spent that much on the table, it needed to be done right so the surface didn't warp. So every couple days, I lightly sanded and added another coat of sealant. Until finally, FINALLY! The table is assembled, sealed and ready for crafting!
Those bins under the table hold all my fabric.  The bottom shelf has all of Megatron's "quiet" activities.  The things we take on car tides, long doctor visits/procedures and restaurants.  :)

I decided that a new table meant the entire room needed a mini make over.  One big thing that this bright room last lacking was lighting.  Even though the window is great, I often have to do my crafting once Megatron is down for the night.  I've been using 2 lamps but they cast all kinds of shadows so it wasn't ideal.  Luckily I come from a family of electricians.  My uncle and cousin came over and ran electricity through the attic and installed a ceiling light for me!  I am ridiculously excited about this!

I made a new window treatment because the old one was left over from the condo and really didn't do anything to jazz up the room so I bought a 1/2 yard of fabric and made a simple valance.  I also wanted to tie in the fact that it was a creative space and not just a Disney room with a craft table.  So I customized some cardboard letters from Hobby Lobby to spell the word 'Create' on the wall.  I used fabric scraps, buttons, washi tape, paint and paper to make each letter different. 

The closet is full of my craft supplies but was a little out of control so I purged a lot (that's a post for another day!) and re-used some storage containers from other parts of the house to get a little more organized.  I tend to hoard anything that I think I can make something out of so my stash gets out of control easily.  I had an entire box of scraps of ribbon...but you'd be surprised how often I end up using random pieces of ribbon!  So I wrapped the scraps around craft sticks, pinned them and placed them in a jar on the table. Now it's a pretty way to keep them organized.
 Any respectable type A human owns a label maker.  These are more for me but one can hope that clear, labeled bins will one day help Megatron put his own crap away.  One can hope....
If you are crafting with kids, I highly recommend a vinyl table cloth.  I bought one at Target last year on clearance after Easter and I cover our kitchen table whenever Megatron is painting (which I still do with him strapped into his booster seat.  I am type A after all, I can't have complete chaos when paint is involved.)

 
This over the door organizer was actually a wedding gift.  We got a gift certificate to the Container Store and I found this. It's  designed for a pantry but it's perfect for holding paints and glue!

For the most part, I like my supplies to be out of sight but there are certain things I like to have at my reach at all times (scissors, tape, tape measure, pens, my nicer paint brushes).  I found a tin to keep those things in on the table also.  It also keeps those things out of Megatron's reach (for now at least).

During a previous Ikea trip, I had fallen for a little metal cart but at the time, I couldn't think of a reason I needed it or a place to put it.  But this trip though, I got sucked in and realized it would be a perfect addition to the craft room.  I like to have access to supplies I need but don't want them on my actual work space so this teal cart is perfect.  The lower shelves have things for Megatron and I left the top shelf empty to use while I'm working on a project.

When we went to Ikea, we also wanted to find a small table and chair for Megatron.  I wanted him to have a space to sit at in the craft room too.  I had this fantasy that we could both be in the room, crafting together.  I wasn't sure if he would be into it but I figured a little table would have decent re-sale value if he didn't use it much. I'm soooo glad we did find a little table because it does work!  Megatron does sit and stand at the table and work on crafts and other "quiet" activities. Not for long but long enough for me to get organized for my next project.


Sitting at his table working on fine motor skills...pushing pipe cleaners through a dollar store colander.
We put his table together first so for awhile there was a mostly empty room with a tiny little table in it.  It was nice to put a few things on the table him though and work on the rest of the room.

So that's a good portion of the room.  The other side of the room is still a bit of a mess.  It's been acting as my purging staging area.  Anyone who has read The Life Changing Magic of Tidying Up will understand, but like I said, that's a post for another day. We also have plans for one more Ikea purchase to transform the space from "college mismatch" to "a creative grown up works here."  Gotta keep saving the pennies for that though.

Tuesday, April 5, 2016

2016 Superhero Run

Megatron and I ran a local 5k last weekend.  It was only a couple miles from my house (if I was training for a long distance race right now, I probably would have run TO the race, done the race and then run back home) and it supported one of the local high schools...which I happened to graduate from a really really long time ago.  None of my usual crew was doing the race so I decided I was NOT going to make it a fun run, even though it was called the Superhero Run.  I was going to run all out and see what I could do, despite having to push the stroller.

After I unloaded the stroller and Megatron and his breakfast and his meds (naturally the race started right at the time he needed his immunosuppressant, but we are both used to meds on the run these days),  I put on my superhero tutu... Back up!  I was also wearing socks with capes and wings, a Wonder Woman shirt and a crazy headband.  This was all part of my Halloween costume but Megatron ended up with a nasty cold and cough the night of the Halloween party we had been invited to so I never got to wear it.  So I was pretty excited to wear it for the race.  And I fit right in.  Lots of people, adults and kids alike, were wearing various superhero costumes.  I clearly take my running very seriously.
Yup, capes AND wings!
It's like a jazzed up Pope mobile.
Unfortunately though, when I did a warm up run, the tutu just wasn't working.  I knew it would drive me nuts, even if it was only 3 miles.  I decided to still keep things festive so I tied the tutu around the handle of the stroller.  Ultimately it still drove me nuts during the race but at least it was manageable while running. As we headed towards the start line, I realized I had left my Garmin at home!  Ack!  I've never ever forgotten my Garmin for a race!  I probably could have driven home to get it but I had a great parking space and I knew I would need it after the race because I had a feeling Megatron would throw a tantrum when it came time to leave.  And anyone with a tantrum-ing toddler knows you sometimes need a quick escape path! So I decided to just run based on feel (something I suck at) and do my best to not slow down.  


He was all snuggly and warm inside there.  He just chilled and enjoyed his breakfast while I worked my tail off!
The race was pretty small (around 200) and I could kind of tell who the "serious" runners were based on where they lined up at the start.  I decided to start pretty close to the line because one, there was still a gaggle of kids in front of me but there were tons more behind me.  And I knew that I did not want to get stuck behind too many kids, not because I didn't want them to slow me down but more because I was afraid I'd accidentally hit them with the stroller.  Kids tend to run super fast for 20 feet and then STOP.  Then they do that over and over again the entire race.  I'm short.  Kids are short.  When I'm pushing the stroller, I can't see the front wheel  so if someone stops or slows down suddenly in front of me, I can't always judge how much space I have. 

The first 100 yards were on a really narrow sidewalk and I was worried it was going to be a looooong race because I was already getting trapped behind slower people but it was too narrow for me to pass and I can't off road with the stroller (that sucker is super top heavy and tips easily).  Luckily the path widen so it got a lot easier to pass.  I tried not to go out too fast but I was anxious to spread out a little so I could focus on running and stop worrying about running over kids.  It was crazy windy that morning so I was just waiting for the course to turn into the wind.  That's when I realized that it wasn't the head on winds that I needed to worry about.  It wasn't constant wind, we were getting random, strong gusts and it was the gusts coming from the side that caused me all kinds of trouble.  The wind would gust at the side of the stroller and pull me right along with it.  There were quite a few times I had to push using both hands.  Have you ever tried running with your arms tied to your sides?  It's hard.  Your arms propel you forward so not being able to swing at least one of my arms made it extra difficult.  Luckily the course was winding around so we changed directions enough that I eventually would get a break from the gusts. 

It was an out and back course and that was something else that was a challenge with the stroller.  The path narrowed again but it wasn't an issue because the crowd and spaced out but the turn around was a cone in the middle of the sidewalk.  I had to do a complete U-turn with the stroller on a narrow sidewalk.  I had to slow to almost a walk so the stroller wouldn't tip and when I did, no one could go around me because it was so narrow.  I went as fast as I could without tipping the stroller and picked up the pace as soon as I made it around.  I don't think anyone was too bent out of shape about it because there were some kids right behind me and when I got a look at some of the adults who were behind me, they just seemed to be shooting the breeze with their friends and kids.  No one back there was there to "race."

I thought I would be more thrown off by not knowing my pace since I didn't have my Garmin but that didn't bother me so much.  What I really wanted to know was how much further I had!  The course had a 1 mile marker but that was the only one I saw and to be honest, it didn't seem like it was accurately placed.  I couldn't quite judge how far I had left to know if I should slow down so I could make it to the finish without a break or if I was close enough to give it the gas.  I just kept hanging on and hanging on until I saw the finish.  One benefit of it being a small race was the fact that I started so close to the front.  I knew that I would only be a couple seconds off the clock time.  So when I came hauling into the finish line and saw the clock, I knew I had a PR.  I wasn't sure how much of one exactly but I knew I had done it!  I beat my Band on the Run time!

I really gave it the gas when I could see the finish so when I did cross, I was super winded and felt a little sick.  I walked a little but by then, Megatron knew we had finished and was starting to whine about getting out.  I had promised him he could get out when I finished running.  Luckily they had set up a bounce house at the finish so I took him out of the stroller, shoved him inside the bounce house and tried to catch my breath and not puke.  Funny thing about the bounce house was that there weren't any other kids inside and Megatron is too small to actually make it bounce. He's still a little too uncoordinated/weak to stand up to bounce but he likes to just sit down and let the bigger kids bounce him.  So he just sat in the middle looking around, waiting for another kid to come in.  Luckily one finally did so he was happy.  I recovered and he surprisingly, came out of the bounce house without me threatening him like I usually do (home boy LOVES to bounce!).  Probably because he knew that meant he could do to the playground next.  The race was at a local park that has one of his favorite playgrounds.  I promised we could play after the race and I was quickly regretting that promise.  The wind was picking up and it was COLD.  I was starting to freeze after getting sweaty during the race.  After only 10 minutes, I was shivering so bad I had to haul Megatron away to the car.  He was not very happy.  Oh well, mama couldn't feel her hands!
Standing...not bouncing. 
Once in the car, I cranked the heat and pulled up the race web site on my phone.  I love race technology/chip timing these days!  Instant race results! "Back in the day, I remember when 5ks weren't time an if they were, you had to rip a tag off your bib at the finish line and they recorded the time that way," said in an old lady voice!  I was able to see my results while still sitting in the parking lot.  33:33 was my finish time...over 4 minutes faster than my previous PR!!  I was pretty damn surprised.  So surprised that I questioned the accuracy of the course.  I thought for sure it had to have been shorter than 3.1 miles for me to have been that much faster.  But someone else who did the race said that their Garmin showed 3.09 miles.  That's close enough to accurate in my book and I probably did go further because I passed quite a few people.  Maybe it was the wings on my socks.... My strategy of going fast and hanging on for as long as I could paid off.  Naturally thought I'm curious how fast I can run a 5k without the stroller!

I doubt I've ever placed that high in my age group!!

It's like riding a bike...in water

I went swimming this morning.  At 5:30 am.  Because in a little over 4 months, I will be doing the swim leg of a 1/2 Ironman.  That's a 1.2 mile swim in open water.  Oh, and did I mention that the last time I swam laps was 3 years ago?  I even blogged about it because I was 22 weeks pregnant at the time. 

I was pleasantly surprised again (like I was back then) at how things went in the pool.  I thought for sure I wouldn't even be able to make it one length of the pool before I tried to inhale while underwater or needed to hang onto the side of the pool.  But that didn't happen.  It really is like riding a bike, you don't really forget how.  It all came back to me and all the running has certainly helped my cardio because I was even able to do 200 yards before I needed a break.  Don't get me wrong, I was crazy winded and I definitely wasn't going fast.  I was even using my open water trick of rolling to look at the ceiling to take an extra second to inhale (that is much more calming in open water because looking at the sky has a different effect than looking up at an old natatorium ceiling).

Overall, it was a great swim.  I have the opportunity to swim with my team two days a week but because it's at 5:30 am, I'll only be able to attend when The Pilot is home.  I doubt I'll find a babysitter willing to come over at 5 am to stay with Megatron.  If only the baby monitor worked 18 miles away...I was back home before he even woke.   Hopefully I'll still be able to go a couple times a month until the weather warms up and we start doing more open water swims.  I know I won't win. I know I won't place.  I doubt I'll be the last one out of the water, but even if I am, that's ok.  My only two goals are to not drown and to finish the 1.2 mile course under one hour.  That's the time cut off.  If I don't finish, I'll be disqualified and my teammates can't even start their legs of the race.  And that's not gonna happen!

Monday, February 29, 2016

An Ode to My FuelBelt

My FuelBelt and I have been on quite a journey!


It's been with me for nearly every mile (except the stroller runs) I have covered on foot for the last 10+ years.  I don't usually track yearly mileage but I can say with certainty that it has THOUSANDS of miles on it.  It's held strong through (at least) two full marathons, (at least) ten half marathons, half way through a pregnancy, weight gain and weight loss.  It's been there for my race walking days, my run/walk days, my triathlon days, my "oh my gawd I hate running but I love running but I hate it" and during my great comeback of 2015.  It has been present for every single one of my PRs to date.  It's carried my water, my ShotBloks, my phones, my inhaler, my Chapstick, a marble (in case I lose my own), a PB&J sandwich one time, back up safety pins from when I was coaching (inevitably someone would forget theirs), sunscreen for the EXTRA long coaching days, my gloves and arm sleeves for when I overdressed and started peeling gloves off.  The bottles have been replaced twice.  The caps have been replaced once more. One bottle was sacrificed in the great Porta-Potty incident of 2014. I've had to cut fraying fabric off of it.  The FuelBelt even carried a banana for more miles than I'd care to admit while coaching in Cleveland.  There were even bets placed on how long the belt could carry that banana.  I lost the bet but it wasn't the belt's fault.  There was actually a medical emergency that I ran to help and the banana was run over by an ambulance.  True story.
RIP banana.
That FuelBelt has been damn faithful to me.  Which is why it pains me to have to retire it.  A couple weeks ago I went for a run and it would.not.stay up.  It literally slid off my waist, over my butt and would have gone right to the ground had I not caught it.  I had to hold it up while running back to my car where I abandoned it and went back out to finish my run.  My 40 pound weight loss (!!) has proven too much for my poor FuelBelt.  No amount of adjusting will keep it on my waist anymore.  :(

You've done good though, my friend!  I'll always have fond memories of our time together.  But it's time for you to rest now.   I hope you view this transition as a wonderful send off into the sunset and not like you are getting replaced by a younger, prettier model.  But you kind of are.  I took a new FuelBelt for a 5 am running date recently.  And the bright and shiny new belt stayed in place.  The new belt still has big shoes to fill, and needs to prove it's worth still, but staying in place is the first hurdle any FuelBelt of mine must tackle.  Here's to the next 10 years of my athletic adventures!

Friday, February 26, 2016

Two Years S/P

Two years!  It was two years ago today that Megatron got his new big boy liver.  I really don't think I can put it much better than I did when I wrote last year's "liver day" post. Here we are though.  This year was even better than last.  Our challenges this year have been 95% normal toddler stuff!  Dealing with tantrums and new found independence, trying to understand his evolving English skills.  We are almost on autopilot when it comes to his transplant related things.  Sure, keeping track of meds and insurance and lab work is a lot of work but it's become second nature now.  It's just part of our routine.  It gets old some days but honestly, it's a lot like doing laundry or washing dishes.  You don't want to do it but you have to do it, so you just do.


Megatron's liver is still plugging along like it should!  A liver that's in it's 30s but is thriving in a 2 year old's body.  What a wild concept.  Never for a moment do we take for granted what an amazing gift The Cousin gave to our family.  I have my days like any parent does.  Days I'm exhausted and my patience is all out but even on those days, I don't lose sight of the fact that without the gift Megatron received, he wouldn't be here.  I wouldn't have the privilege of being Megatron's mom anymore.  And boy is it a fun job sometimes!  There are just enough fun and sweet moments with him that make all the hard times worth it. The Pilot and I are having a blast right now with Megatron.  He's interacting with us more than ever and his speech improves daily. He's such a funny little kid and we know we are so lucky to be his parents.  We are lucky that he's tough as nails and somehow held on despite a failing liver.  We are lucky and thankful that we had a very medically uneventful year!

As I hope we continue to do each year on Megatron's liver day, we have been making the rounds to try to do two things: Thank the people who have helped us on this journey, and take the opportunity to share our story with the public and stress the importance of being a registered organ donor. We couldn't have survived this without help or without organ donation! We've been mailing thank you cards and celebrating with those closest to us.  I recently spoke at a Ronald McDonald House fundraiser.  And Megatron?  He's being treated to Daniel Tiger LIVE!  If anyone has toddlers, you will know that this might be the highlight of his life so far.  Never mind that new liver, just show him is favorite Mr. Roger's Neighborhood friends. Like any normal, healthy toddler!