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.

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!

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!