Saturday, May 13, 2017

A Grief Cycle

My journey to becoming a mom has been filled with a lot of emotions but the one I never expected (and who would really?) was grief.  The amount of grief that has surrounded me since becoming a mom is undeniable but yet here I am, fours years into it and I'm still trying to manage that grief. Like my PTSD symptoms, the grief sneaks in when I least expect it.  The pool where Megatron takes his swimming lessons has become an emotional minefield for me lately.  There are several women who have toddlers in classes during the same time slot at Megatron and they also have infants.  While their big kids are in the pool, they are always chit chatting with each other about how old their babies are and what milestones they are experiencing.  Some days I just feel left out because I appear to be the only mom there with an only child.  And then some days my stomach is in knots, I have a lump in my throat and I hold back tears the entire time he's in the pool.  When class is over, I rush Megatron out of the pool, to the showers and then out of there as quickly as I can so I can redirect my attention.  Why?  Because those moms are experiencing normal, healthy babies and I completely missed out on that experience.  One week, I overheard a woman tell another that her baby was 7 weeks old.  My first thought?  Megatron had his first major surgery when he was 7 weeks old.  Another week, two women each had a baby on their laps and the babies were cooing and smiling and interacting with each other.  The babies were both 6-7 months old.  For me during that time, my baby was in acute liver failure, was living in the hospital and was waiting on the only thing that could save his life, a liver transplant.  He rarely cooed and smiled.  He was isolated to his hospital room or our house so he wouldn't get sick so there was no interacting with other babies. Another time a mom was sharing how her baby had a low fever and mild reaction to a vaccine and it was so scary.  In my head I was rolling my eyes .  Scary?  Scary is being told that your child is going to start vomiting blood and when that happens, call 911 because babies can bleed out in a hurry.  Scary is your baby being on a transplant list and fearing that the organ won't come in time.  I've even had a similar reaction to someone sharing their delivery experience.  I was very unexpectedly induced 5 weeks early.  My delivery was the exact opposite of what I had hoped for.  My pregnancy ended in fear.

Once I shake off the tears, I'm almost always very agitated for several hours because I'm angry that I am still experiencing these emotions.  Megatron is going to be four.  He's (relatively) healthy and thriving now.  Why am I still so rattled by others having a completely normal parenting experience?  I'm angry because I don't what his medical history to turn me into a bitter person.  I am genuinely happy for others when they welcome a new baby.  I enjoy hearing new moms talk about their babies, because yes, I did experience a few of the normal things like diaper blow outs, nursing challenges and sleep deprivation.  I don't ever want a friend who is a new mom to avoid talking to me about their babies.  I don't ever want to dismiss the fears a fellow mom experiences with a new baby.  They are legitimate and real.  I just have such a different experience and perspective though that I tend to struggle with certain topics.  Sometimes I feel like I can't relate to other moms because of the perspective I have.  I feel like I don't fit in.  But because Megatron is thriving now, I don't really fit in with special needs moms either.  We still have our challenges but they are minor compared to 3-4 years ago.  They are minor compared to what a lot of other parents are facing now.  But because of this weird place in the middle, it can be isolating.  Which is probably why I still struggle with so much of this.  I'm alone with my thoughts way too much.  I even have random guilt because Megatron is doing so well.  Why us and not someone else?  Why is another post transplant kiddo having so many complications when we have faced few?  It's this awful cycle I get in sometimes.  It's like your stereotypical "mom guilt" but kicked up a few notches.  I feel guilty for thinking not so nice things when people have healthy kids.  And guilty when I realize I have a somewhat healthy kid now and there are so many parents out there who are waiting for an organ for their kid or aren't having as much post transplant success as we have had.  It's maddening really.

While I have my moments when I am mentally rolling my eyes about someone whining over a normal, non-life threatening kid experience, I feel like our experience with Megatron has taught me empathy.  I think before becoming a mom, I was able to sympathize with someone else's struggles, but now, I am able to empathize.  I am also much more aware of how seemingly normal, every day experiences can look very different to different people based on their perspectives.  Mother's day is a great example.  Pre-Megatron, Mother's Day was simply a day to honor my mom; to shower her with some extra love and attention.  But now my heart seems to feel all the friggin' feels, all the time.  Now it is not just a day to give extra thanks to my mom and for Megatron to hopefully one day learn to do the same for me.  I am now very aware that it's a day that may be extra sensitive for those who want more than anything to become a mom but haven't been able to yet.  It's a day that is painful for those who have lost their mom.  It's an excruciating day for the mom's who have lost their children.  Instead of just thinking about picking up a Mother's Day card for my own mom, I want to go hug everyone I know that is experiencing a situation like I described above.  While empathy is a good thing, I may have it to the extreme and it may not be a healthy emotional weight to carry around.

So here I am in this weird cycle of grief and guilt.  After 2 years of therapy, I'm finally able to sleep most nights without having horrible flashbacks to that first year of motherhood.  I don't hyperventilate when I see a medical helicopter or hear and ambulance siren.  That's serious progress in regards to my PTSD diagnosis.  I do still struggle with washing my hands at the hospital because the smell of the soap still transports my brain to back when we were basically living in the hospital. I'm at least able to actually use the bathroom at the hospital now rather than trying to avoid it at all costs so that's progress too. But its finally time to tackle all of this grief so it doesn't consume me.  I don't want to pretend the last four years didn't happen and I don't want to waste my time and energy wishing that it had all gone differently but I do want to lighten this emotional weight.  It's heavy and I'm tired.  It's time to start letting it go.  I need to start being a little kinder to myself and acknowledging that what I'm experiencing is a normal reaction to the challenges our family has faced over the last four years. Not only is is normal but there is nothing WRONG with feeling they way I have been.  I've been focusing too much energy at being angry with myself for feeling this way.  Like I didn't deserve to grieve because ultimately my child did survive.  How can you grieve someone you didn't lose?  Turns out you can grieve more than the loss of a person.  The loss of a certain experience can be just as emotionally painful.  I haven't had the motherhood experience that I had expected so it's time to accept that, grieve the loss of what could have been and keep moving forward.

If acknowledging that this grief is normal is step one, then step two must be admitting my feelings to others.  I try to put on a strong front most of the time but the reality is is that there are days that are a challenge from the time I wake up until I crash at night.  The reality is that there are some weeks I don't want to take Megatron to swim lessons because I don't want to hear the other moms gush about their healthy babies.  Also part of my reality is to plow ahead no matter what.  I refuse to let my emotional baggage to hinder my ability to parent (I don't always succeed but I don't quit either).  In my opinion, it's not an option for Megatron to not take swim lessons so I sit there in the waiting area like a ball of nerves for 30 minutes every week.  My therapist and I will continue the hard work so that I can maybe one day sit there and feel relaxed.  Or maybe even coo at those cute babies or strike up a conversation with their moms.





Monday, May 1, 2017

2017 Cap City (not quite) Half Marathon

I've been training really hard since late January for another half marathon.  When I created my training calendar, I hadn't intended to work towards a PR.  I just wanted to have a goal that would help me work off the weight I put back on during the holidays.  But as I moved through each week of the training schedule, I was steadily increasing my pace.  I didn't do anything different this time around other than I was maybe running slightly more miles each week.  But I was starting to see times in the high 10s pretty regularly.  I then started seeing averages in the low 11s and high 10s even for the longer distances.  My current half marathon PR had an average pace of 11:45 and here I was seeing 10:45 a couple times a week.  Even with the consistent training though, I wasn't really thinking much about a PR.  I was signed up for the Cap City 1/2 marathon but since I've done it a couple times before, I know its a difficult course.  There are quite a few uphills in the first 5 miles.  Nothing compared to Adams County but they are still hills and hills aren't as convenient to find here in Columbus when it comes to training.  I always say I'm going to make a better effort to hill train but then never do.  It is what it is.

The week before the race, I caught wind of the forecast.  88 degrees.  WTF?  We haven't acclimated to warm weather running yet here.  A week might as well be like predicting the weather a year from now so I let it go and focused on eating well and getting a couple short shake out runs in.  Then I started hearing rumors that the forecasted temperature was dropping.  Awesome!  But then rain entered the picture.  And not just rain but thunderstorms.  You can race in rain but not lightning.  The night before the race was quite the light show.  There was tons of rain, thunder and lightning.  I laid out my race clothes, along with a poncho and crossed my fingers that it would blow through faster than expected.  Despite this being my 16th half marathon, I hardly slept.  Partially due to the weather and partially due to nerves.  And when I woke up on race morning?  Pouring rain.  I didn't even want to get out of bed.  But when you fork over that much money for a race (plus a $30 parking ticket while picking up my race packet, which I am appealing), you kind of have to show up.  So I got dressed and headed downtown.
Faking a smile because I was dreading going outside!
Luckily it stopped raining for the hour before the race while I was waiting around with my friends.  I was trying to be optimistic but the radar looked awful.  More storms were coming.  Could we run fast enough though?

We had fun waiting for the race to start at least.
The race started and I was soaked with sweat in the first mile.  The humidity was pretty bad.  But I felt ok and tried to remind myself I was going to need to drink more than I had in training due to the humidity.  Around mile 3, it started to sprinkle.  And then rain.  But it didn't last too long.  Miles 4-5 were sort of dry.  Then it started up again as we turned back towards the south and had a good view of downtown.  Ugh.  Normally when I run, I zone out and gaze at the ground about 15 feet in front of me.  I looked up though and couldn't help but notice a giant dark wall of clouds over downtown.  We were running right towards it.  With each step closer to downtown, it started to rain harder.

Somewhere around mile 7, I saw my brother, sister in law and nephew.  I was so surprised!  My mom was at her house watching Megatron.  The Pilot was home sick.  I wasn't expecting any of my family to be out there, especially given the weather!  But there they were.  That helped me get my pace back up (I had been in the 10:30-10:45 range until we turned towards downtown when for some reason, I couldn't seem to stay under 11:15).

Not long after I passed them though, a huge bolt of lightning lit up just south of downtown. Everyone running near me screamed and/or groaned.  We just kept going, not really sure what to do.  I was running with the co-worker of a friend of mine and it was her first 1/2 marathon.  I started to feel bad because I was beginning to wonder if the race was going to be stopped for the lightning.  We made a left turn and all of the sudden, people started shouting, "it's over.  The race is cancelled."  It was so confusing though because none of that was coming from anyone official.  So we just kept running.  And at that point, there was no where else to go.  We were in a part of downtown where there were only parking lots and vacant buildings.  Then a police car drove by and the officer was using his microphone telling people the race was cancelled and to seek shelter immediately.  The problem was there was absolutely no shelter right there. So we kept running.  It was POURING by this point and the wind kicked up.  There was thunder and lightning all over.  The person I was with knew her family was waiting for her to pass by not too far from where we were so we just kept running.  She finally saw them so we stopped.  I gave her a hug and said how sorry I was that today wasn't going to be the day to finish her first 1/2.   She stayed with her family and I started running, but this time up on the sidewalk.  But that was mostly because the street was flooding.  Like up to your ankles flash flooding.  Somehow we had made it far enough back downtown that I knew the starting area (and the gear check where I had left a bag with warm clothes and flip flops) wasn't far away.  Just as I was about to turn off the course and cut over the block back to the gear check, a police car pulled up and angled itself in front of the road, not allowing runners to go any further.

The rain let up a bit as I ran to gear check.  Which was a cluster.  There was only one volunteer that I could see so everyone was just hunting for their own bags.  Luckily I had plastered my bag with neon pink duct tape so it was easy to spot and grab.  As I was walking away from the gear check, they started making announcements telling people that everything was cancelled and to seek shelter immediately.  They lowered all the tents that had been set up for the post race party (pizza, beer, champagne and margaritas were supposed to be there) but people were swiping whole pizzas from under the tents.  I was soaked and starting to get cold so I just left and started making my way to the parking garage.  I ended up on the road where the finish line was.  Which was a mistake.  People were still finishing and getting their medals.  Which was just frustrating.  I could have jumped in and gotten a medal but I didn't want one.  I had only run 8.5 miles after all.  As I passed by, the announcers were repeating over and over, "seek shelter immediately.  There is lightning in the area.  Do NOT touch any of the metal fencing (which was lining both sides of the street/finish chute)."  I was only a 1/2 block from the parking garage so I figured it made the most sense to just keep moving.  Once down in the underground garage, I got my phone out (which I had thankfully put in a ziploc bag in my fuel belt) to text my family that I was safe in my car.

This is what was coming right at us once the race started.  
Getting out of the garage was also an adventure.  Because so many people were leaving at the same time as opposed to spread out over a wide range of finish times and the roads still had barricades for the race, traffic was a mess.  I paid to get out of the garage but sat quite awhile on the exit ramp, which had turned into a river.  It was an underground garage so the ramp sloped down and water was rushing down it.  I just hoped my sub compact car wasn't going to float back down the hill!  Once out of the garage, I realized that the weather had gotten much worse.  It was a monsoon.  It was raining so hard, the wind was blowing, thunder and lightning was everywhere.  There were people running all over the place.  Some just huddled in doorways.  As I finally made my way out of the thick of the traffic, I realized how bad the roads were.  There was flooding everywhere!  It took me a couple blocks to figure out where I was (I just kept driving trying to get away from the race course and the traffic) but luckily I wasn't too far from the highway and was able to hop on and head home.  Once up on the highway, while it was still pouring, there wasn't the flooding going on like there was downtown.

When I walked into the house, I was still soaked all the way through and was starting to shiver.  The Pilot gave me a sad look and I went right upstairs for a looooong, hot shower.  I then spent a couple hours sitting on the couch in sweat pants.  I had made arrangements to have Megatron stay with my mom all day because I was planning on being completely spent from running a PR.  Instead I was just freezing cold and my body was stiff from being so wet and cold for so long.
Soaked and sad.
So half marathon #16 didn't turn out but man, what a story!  We were at the playground the next day with Megatron and someone saw me wearing the race shirt and asked me how far I made it.  I think that will be the question when anyone refers to the 2017 Cap City 1/2 marathon: "How far did you make it?"  I found out later that, with the exception of the people who finished within the first 1:15 or so of the race start, a lot of people ahead of me were diverted and finished with 12-12.5 miles.  I feel better knowing I wasn't *that* close.  Haha.

I think if it had just been an average race and that I wasn't really within striking distance of a PR, I probably would have just shrugged it off as a great story and focused on some shorter races I have lined up for the summer and then another 1/2 marathon in the fall.  But for those 8.5 miles I did run, I was nailing the pace.  And after seeing so many PR times this training cycle, I really want the chance to see what I can do in a race.  So after taking the longest shower ever, I started searching for other 1/2 marathons that I could do.  Flying Pig was out because there's no way I'd PR on a hilly course.  I really really didn't want to do Cleveland because I boycotted that race years ago plus registration was up to $110.  Ummm, no,  There is another local 1/2 but it wasn't until June and I was worried about the heat.  The next option was the Indy Mini in Indianapolis. I would have the option to drop Megatron off with my in-laws on the way there so that was one big hurdle out of the way.  Then the rest fell into place by the end of the afternoon. A friend offered to let me stay with her and I could head down to the race with them.  It was a done deal.

So this Saturday, I'll get a re-do.  Everyone cross your fingers and toes that I can stay healthy this week (The Pilot has been sick for a week) and that the weather cooperates!

Sunday, February 19, 2017

Megatron: Medical Update

I figured I'm long overdue for a medical update on my little munchkin also.  He's been doing really well.  He's 3.5 now and still hanging out around the 25th percentile for his height and weight.  So he's not a gentle giant, but he's certainly not an itty bitty little guy anymore either.  In fact, he's a hair over 38" tall now because he was able to ride the Seven Dwarfs Mine Train on a recent trip to Walt Disney World.  Yup, it's time to start comparing his height to the height stick at amusement parks instead of constantly at a doctor's office.


His liver had been super happy for the last year+.  His immunosuppressant level has been kept really low and his body is tolerating that well.  That means he stays pretty healthy.  He's had some colds that take him awhile to shake but he eventually got over them.  He's had some lingering skin issues that we dealt with over the summer.  It clears up and then comes back.  We starts meds, it clears up and then comes back.  It's been pretty frustrating.  Especially since he ended up with a skin infection because of all the broken skin.  He's had another flare up the last 2 weeks so we may have to make another trip to the dermatologist.  So far the culprit seems to be that he's allergic to his own bodily fluids so he licks his lips/around his mouth, the skin breaks down and then makes it a prime location for an infection to go wild.  He also has eczema all over his arms and legs.  We can't seem to figure out what's causing that in the winter.  In the summer, we assumed it was heat/sweat.  But in the winter, we aren't so sure.  I think it's another food allergy we just can't seem to pinpoint.

Speaking of food allergies, that's still ongoing as well.  He was diagnosed with eosinophilic gastroenteritis (EG) in December 2014 and we eliminated the top 8 allergens (egg, wheat, dairy, soy, tree nuts, peanuts, fish and shellfish, plus banana because it showed up on a skin test).  Over the last 2 years, we've been attempting to reintroduce the foods one at a time until we figured out what exactly he can and can't eat.  It hasn't been quite that straight forward though.  Egg was an immediate fail a little over a year ago (vomiting on the 3rd bite).  Dairy has been considered a pass because other than the occasional eczema, he hasn't had any GI symptoms since adding dairy.  My instinct wasn't convinced he passed but we've left it in his diet.  We also attempted wheat but he failed that on day 10.  The results were a little cloudy though because we also introduced soy in that 10 day window.  In hindsight, that was a mistake.  We recently tried soy again and it seems to be a pass as well.  So in 2 years, we've only added back dairy and soy.  Last month we found a new allergist to try to come up with a much more clear and concise plan for adding back foods.  The new doctor ran new blood tests on all the foods to see if anything had changed from the last allergy panel 2 years ago.

That's when we got the news we weren't expecting.  I think because Megatron has been so stable the last year, I've finally let my "PTSD liver mom" guard down a bit.  Without realizing it, I had my hopes way up for the blood test results.  I was so certain that the results would look good and we could maybe face a future with just an egg and wheat allergy.  So I took it very hard when the results came back the way they did.  His blood reactions to all the foods looked worse than they did at diagnosis, with the exception of seafood.  The one food group no one in our house eats (remember that The Pilot is 100% vegetarian and I'm still maybe 75% vegetarian but I've never liked seafood).  I held back tears as the allergist went over each food with me over the phone.

Basically, we will NOT be testing any nuts or wheat for at least another year, when they will check is lab work again.  Egg is still off the table but that was a given since we had already witnessed how quickly he reacted to eating egg.  That made me so sad.  I really thought we might be able to try peanut butter.  He ate it right after his 1st birthday but hasn't had any since.

On paper, he looks allergic to dairy.  But he's been eating dairy in small amounts and seems to be tolerating it.  The allergist felt my instinct was correct, that his body is reacting slightly, but because he doesn't drink dairy products (he still drinks a medical formula at meals), his body is somehow tolerating the small amounts of cheese he is eating.  And now that he can talk, he's been able to tell us a couple times when his throat is "itchy" after drinking chocolate milk or eating some kind of dairy heavy food so we've started to avoid things like that.  The doctor didn't feel like we needed to take dairy back out of his diet but did agree that if we "tipped the scales" and started letting him drink cow's milk, that his GI symptoms would likely return.  We have no desire to do that, especially since he's thriving on the formula.  Soy also looked elevated on his lab work but not as much as dairy so she agreed that we could keep soy in his diet for now too.

The other bummer is that she wants to see another endoscopy.  There is no way to know what is really going on with his EG without seeing his GI tract.  We won't schedule that until after viral season (we avoid the hospital during viral season as much as possible because of his compromised immune system) so I have some time to mentally prepare.  It won't be fun.  He won't be allowed to eat for 8 hours and then coming out of anesthesia was hard on him last time.  He was one angry little monkey.  It was emotionally draining.  He doesn't remember the last time, but I do.  Sigh.  Anyways, if it looks worse, we may have to take soy back out of his diet.  The last endoscopy was done after about 6 weeks on dairy and she felt if dairy was causing trouble, it would have looked worse during that scope and it didn't.  Plus he's still GI symptom-free.

That leaves banana.  I save it for last because that is the one food that Megatron requests now.  He knows he can't eat the other foods but he's said several times "mama, when I'm a big kid, I can eat banana." Talk about heart breaking.  How do you explain that to a 3.5 year old??  There is no manual for this.  During the first appointment with the new allergist, he asked her (and the nurse) if he could eat banana.  This is the first time be's been verbalizing his food desires.  His lab work was elevated from a couple years ago but wasn't as high as all the other foods.  Also, banana is more likely to cause an allergic (immediate) reaction than an eosinophilic (delayed, internal) reaction.  Because of these factors, she is willing to do further testing.  So the plan is to schedule an appointment to take Megatron to the allergy clinic and do a skin test for banana first.  If it looks ok, then he can try a piece of banana and we will wait to see what happens.  He's smart enough and observant enough to know that this is the plan.  I haven't scheduled the appointment yet (we were on vacation and then I had the flu...and I've been procrastinating on all of it because I'm afraid of the results.  You know, if I'm going to be really honest about it.).

So I'm really disappointed with all the allergy news.  I had really hoped we had already found his allergens and that we could add the other foods back and we could move on.  But that doesn't appear to be the case.  This little guy still has to face daily challenges.  Well, if I'm going to be real, I'm the one facing the challenges.  He doesn't know that he's any different yet.  I'm the one still trying to figure out how to cook safe meals for him.  We are the ones that sacrifice meals in restaurants because most places don't have safe options for him.  The challenge is on us to teach him what he can't eat, how to recognize it and say "no, thank you" when offered food he doesn't know what is in it.  We've been practicing that at home but it didn't work yet in the "real world" recently.  He managed to get a banana slice at "school."  He put it in his mouth before the teachers noticed and had him spit it back out.  He's still learning.    And with so much talk about banana lately, he probably either thought it was ok because an adult gave it to him or he didn't recognize it because it wasn't in the peel.

I've tried to keep all this in perspective. He's healthy.  He's growing.  He's not in liver failure.  It's hard to do that sometimes though because it would be nice if there wasn't always a medical challenge waiting for us around the bend with this little guy.  I do my best though.

How has it been so long??

The blog has definitely fallen to the back burner.  There just aren't enough hours in the day.

I've been trying to create a spreadsheet of the races I've done so I've been going back through my blog.  It's getting harder and harder to remember just how many races I've done now so its time to start keeping a list!  I'm not even going to attempt to try to figure out all the shorter distance races from 10 years ago but I'm at least trying to fill in the half and full marathons.  Full marathons was easy to fill in since there have only been 4 but the half marathons is proving to be a little tricky.  I know I've done 15 half marathons now based on going back through old blog posts, etc.  But I'm missing one or two.  I know I did them because I'm pretty sure my count is acurate, I just can't figure out which races I'm missing on my list.  They were the early ones, so I'm trying to recall back to 2005-2006.  Just a few life events have happened since then....

Anyways, I'm trying to catch up on some race blogs posts so I have some record of the races. Especially the races that I ran as someone else.  Not that I've gone that a couple times...but if I had, it would make it very hard to look up race results.  Sigh.  So I'm hoping to get a few posts up show that I haven't completely disappeared.

Adams County Run with the Amish

Better late than never??

I ran the Adams County Run with the Amish 1/2 Marathon on September 24, 2016.  It was 1/2 marathon #14. I was really looking forward to traveling with my friends (about 2 hours southwest of Columbus) and getting a 24 hour "vacation" from real life.  Something doesn't quite sound right about that when I consider running a 1/2 marathon a vacation.  But when you have a 3 year old at home who never stops talking, getting to spend time with grown ups is amazing, no matter what we may be doing during that time!

I knew this race was going to be a challenge just based on the location.  Southwestern Ohio has hills. Lots of hills.  Especially when you consider just how flat Central Ohio is.  It's hard to get much hill work in during training in Columbus.  Having said that though, I had a plan to train on the available hills.  But that plan just didn't work out how I had hoped.  So while I went into this race with adequate distance training, I knew I wasn't fully prepared for the hills.

Testing out the Amish furniture
That ended up being an understatement.  This was by far the most difficult race course I had ever done.  The 1/2 I ran while pregnant might have been slightly more difficult since I had the first trimester fatigue to content with, this one kicked my butt just as much.  I realized quickly that I couldn't run down hardly any of the hills.  There were too steep and it hurt my knee with each steps.  So I ended up running as much as I could but then walking down every hill.  Not the best strategy but that's what I had to do to keep going.

The night before the race, we all met up at a local Amish bakery/furniture store where the Amish had the most amazing pasta dinner I've ever had.  We ate in a barn and it was bare bones but it was by far the best pasta I've ever had in my life (probably not hard to beat store bought.  I doubt I've ever had homemade pasta before and this was obviously homemade).  I was just enjoying being in the company of my friends and none of them made me cut up their food and they didn't throw noodles at me.  After dinner we made our way to a state park about 30 minutes away.  We ended up renting several cabins for the night.  Normally I would be in bed early the night before the race but we ended up staying up way too late but had a blast.  Have I mentioned how excited I was to have grown up time??

The next morning we were up early to carpool back to the race start.  I loved how basic everything was.  When you've done as many races as we have, you don't always need fireworks and a a live band at the start.  So we were impressed with the hand drawn course map and the horses hanging out in the pasture across from the race start.  It is a beautiful part of our state, that's for sure!




Three of us started together but by about mile 6 or so, we all had split up.  My friend Kim was race walking and was easily out walking me on the downhills.  Given how small the race was, I had a feeling she could place in the race walk division if she stopped waiting for me so I told her to leave me behind.  I knew I would finish.  I felt fine, the course was just hard.  Plus there was also a full marathon so that meant I had plenty of time to finish the half.
Hills for days
The race was fully supported by the Amish Community in the area so they organized all of the water stops.  The water stops were great and there were plenty of them, which surprised me because it was such a small race (fewer than 500 people to my knowledge).  There wasn't the yelling and cheering I'm used to at the big city races but it was a nice change of pace (no pun intended).  I really enjoyed the first 1/2 of the race.  The hills were a challenge but manageable.  It was right about the rime I was thinking "this isn't so bad" that we hit an uphill that I was convinced was 3 miles long.  In reality it was probably less than a mile but it was so long and so steep/  I had to take a break when I finally got to the top...

The second 1/2 of the course really felt like one hill after another.  I still felt ok other than being tired (spending time with friends was still worth the extra late bed time, no matter how tired I was!).  At one point during the race, we saw some friends driving the course.  They either weren't racing due to injury or did the 5k so they came out to check on the rest of us.  It was a little strange to be in the middle of farm country and then a mini van full of friends comes driving around the bend honking the horn and yelling out the windows.  It was perfect though!  Towards the end, there is a short out and back section of the course which was nice because I got to see some of my friends that were ahead of me.  Seeing familiar faces goes a long way when you really want to be finished!

Even more friends were lined up in the last mile and by that point, I was walking more than running. Everything hurt.  Seeing them was another welcome sight.  They got me up one last hill and my friend Sarah crossed the finish line with me.  It felt like I had been out there for 3 days but I somehow managed to finish under 3 hours.  2:56:50 was my final time.  Not my worst!  Haha.

The finish line is at the same Amish Bakery that the pasta party was and when you have a bunch of hungry marathoners finishing a race, you load up on baked goods.  Oops.  I probably didn't burn that many calories. b The race "medal" was realy unique also.  It was a wooden "basket" made by a local Amish person. Their name was on the back even!



It was such a fun trip!  Unfortunately they aren't hosting the race again next year.  I'm not sure if I would do it again but I'm sure if all my friends were in, I'd go along with it.  It wasn't THAT terrible.  Ha!

Saturday, June 25, 2016

Megatron Update: Fun Stuff

I did a medical update on Megatron but he's also been having lots of fun being a normal kid lately too!

Last month we went on our first post-transplant family vacation.  The last time the three of us went anywhere other than Pittsburgh for a medical appointment was when Megatron was just 3 months old and we went to Disney World.  We used The Pilot's flight "benefits" and flew standby to Denver.  It was an adventure to say the least but we made it there and back and aren't too traumatized.  We had so much fun!  It was a huge undertaking to make arrangements to have all of this food either shipped in advanced, packed in a cooler that we carried onto the plane or purchased by my friend, Lauren, who we stayed with in Denver.  Megatron did great despite the time difference and being all off schedule.

Airplanes have the same effect on him that cars do!
We don't travel light.
Denver Children's Museum.
We all had a blast at the museum.
Red Rocks
We also had another zoo adventure with the organization, A Kid Again. This time he was big enough to ride a couple of the kiddie rides at the zoo, which were free for the A Kid Again families to ride. He loved it!  I on the other hand was a little motion sick.  I can't spin in a circle anymore! Usually Megatron is asleep by 8 pm but for the special night at the zoo, he was still going strong at 9! As we were heading towards the exit though, he had the opportunity to pick out a prize but he didn't want to get out of the stroller.  He just whispered that he wanted mama to pick it out for him.  He finally hit a wall and was worn out! He plays hard and then sleeps hard!
If the African lion looked hot, you can probably imagine how hot we were.
Checking out the sting rays.
Feeding a giraffe.


Exactly.
Just the fact that it's summer finally has added some fun to our days hanging out at home plus we are getting out and about more than ever.  Despite being so heat sensitive, we try to get outside as much as we can.  He sure sleeps better on the days he gets some outside play time!

Our neighbor had put an old, beat up Cozy Coupe on the curb several weeks ago and since it still rolled, I snatched it.  It had marker all over it and looked like it had been dragged around the concrete on its side so The Pilot used his model airplane painting stills and gave the Cozy Coupe a new look with a can of spray pain. We now have an Army "jeep." 

Playing in a sprinkler for the first time.
Chillaxin' at his cousin's lacrosse game.
Exploring a new park with one of his cousins.


Not so sure about the wobbly bridge.
Taking his art work very seriously....
Or not.
Family time!
I think the skinned knees are here to stay for the summer!
While Megatron is s typical, moody, irrational almost 3-year-old, it's never lost on me when he gets to experience something for the first time.  We weren't guaranteed any of these moments with him so even something as seemingly small as running through a sprinkler, it actually a huge deal in my heart.  It's fun watching things through the eyes of someone experiencing everything for the first time.



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 now 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!