Blood boiling

So this whole measles outbreak makes my blood boil.  Normally when science and politics meet, I check out.  Usually it doesn't effect me and/or I believe it will all work out.  But measles? People who choose not to vaccinate their children?  My blood is boiling and here is why.  90% of unvaccinated people will get measles if they come into contact with it.  Children under the age of 1, those who are allergic to an ingredient in the MMR vaccine and those who have a compromised immune system cannot receive the vaccine and rely on herd immunity to protect them.  And this group of people are those who are more likely to not just get these viruses  but face very serious complications from them, even death.

Well guess what?  I have an immunosuppressed child.  He can never receive the MMR vaccine (or varicella or any other live virus vaccines).  Megatron is completely exposed to these highly contagious viruses.  And as a parent, the thought that other parents choose not to protect their own children, therefore exposing my child, breaks my heart.  It makes me angry because I have spent the past 18 months doing everything in my power to keep this child alive.  And for him to have survived liver disease only to be put as risk for a virus that was nearly eradicated from the western world makes my blood boil.  I don't care if I have friends who choose not to vaccinate or if they feel like everyone has the right to choose what they do with their bodies.  I absolutely agree that we should question everything we put into our bodies and shouldn't blindly follow what big politics/big pharmaceuticals tell us what is safe.  However, there is overwhelming evidence that show vaccines are safe. Evidence from multiple sources from all over the world, not just from the pharmaceutical companies.  They do no cause autism.  Yes, there are isolated cases of terrible, terrible reactions from vaccines.  And to those who have suffered from something like that, my heart breaks for you as well.  But overall, it is my belief that vaccines are safe.

You have to prove your pets have all their immunizations before you can take them to a kennel.  Many schools are either nut-free or have nut-free areas in the cafeteria.  Both scenarios that I whole heartedly agree with for what its worth.  We hold pets to a higher standard of health care?? If your kid can't bring a peanut butter and jelly sandwich to school, then they shouldn't be able to bring a highly contagious, yet highly preventable disease.

Here's where it gets tricky for me.  Megatron could be a carrier of the measles (as anyone who is not immune).  And we wouldn't know it for days, potentially weeks.  So yes, when he starts to attend school, he could potentially bring it to school.  So the line is blurry there.  Obviously I think schools should require immunizations for all students who can safely be vaccinated.  If you don't want your child vaccinated, then you need to find an alternative method of education.   If every other kid was immunized, then Megatron's risk of exposure would drop drastically.

And once Megatron is in school?  Say someone in the building does come down with measles (or mumps or chicken pox).  Megatron would have to leave school for the entire incubation period to make sure that there are no other cases and that he is not infected. This happened in a school district nearby.  All unvaccinated children had to stay home for 28 days after one child was diagnosed with mumps.  So Megatron and kids like him have to suffer because of someone else's choice.  It just doesn't seem right.

I hate that this has come to be an issue again.  Now, of all times!  I have an immunosuppressed child for whom I would do anything to protect. These diseases were eradicated and were brought back because of one doctor who lied in a report and started this insane anti-vax movement.  These people brought them back and they now put immunosuppressed people unnecessarily at risk.  And that makes my blood boil and my heart break at the same time.

I didn't provide any sources for my facts in here because only about 20 people read my blog and they are either pro-vaccine already and know this information to be true or are anti-vax and probably wouldn't click on any links anyways and will probably stop following my blog.  Hopefully this post will make them stop and rethink their stance and cause them to do their own (legit and science backed) research.

End soap box rant.

2,015 in 2015

If all my friends jumped off a bridge, I might also.  Not really.  Well, maybe.  On New Year's Eve, this 2,015 miles in 2015 Challenge started popping up on my Facebook feed.  The challenge was to run or walk 2,015 miles in 2015.  You could do it on your own or with a team.  Sounded intriguing and a way to keep motivated even when I'm not training for a race.  And with Megatron in the mix, its just harder to race as often as I did before. 

So at least a dozen or so friends were all up the the challenge so we broke off into smaller teams.  I am on a team with two other lovely ladies and we each plan to cover at least 672 miles.  I've never tracked my mileage before.  I make training schedules for races, stick to it and that's it.  Everything else is just for fun.  It's funny that I've been doing this for 10 years and have never once tracked my mileage.  Anyways, its roughly 2 miles a day.  And certainly I can reach that given that most of my workouts are 4 miles or more, right?? Yeeeah.

We are one month in and I'm realizing this is definitely a challenge! Haha.  Some weeks are tricky because I'm on my own a lot with Megatron and now that there is snow on the ground, I can't get outside with him in the stroller.  I've put in quite a few treadmill miles recently.  And I HATE the treadmill.  And some weeks, like last week, Megatron had three medical appointments in three days.  And for some reason, they are exhausting for both of us so by the time he goes to bed for the night, the last thing I want to do is get on the treadmill.

But, I made a commitment to my team so it will happen!  My total mileage for January was 54 miles.  And given that The Pilot was away for about 25 of the 31 days in January, I was happy with those 54 miles, even though I fell 2 miles short of my monthly goal.  I'm not too worried since I'm training for a May half marathon and my mileage will start going up weekly starting this week.

My coach is a bit of a slacker but he's also very tolerant.  He napped through a very chilly 5 miler recently.  I'm so glad I invested in the weather shield for the BOB because it keeps the wind off and when he's bundled up, it's nice and toasty in there. Give him a sippy with his hypoallergenic formula and a snack up with allergen free "cheerios" and he's a happy boy.

Sleepy Megatron

I feel a tad bad for having such a good laugh at Megatron's expense but watching him fall asleep while in his high chair might just make up for all that liver failure drama he put us through.

After I took his lunch plate away, he just tipped his head back and was out.  Even was snoring a little!  Had a fit when I cleaned the lunch off his face but within about a second of laying him in his crib, he was sound asleep again.

And then there was this day...both lunch and dinner were a struggle.  He plays hard and then crashes!

A Year At "Home"

I wrote this post for our family blog but with so many year end recaps floating around, I thought I would share here what our year looked like.  It wasn't a year of juggling work, a baby and training.  It was a year of survival, of learning to administer IV meds and tube feedings at home and hoping for a new liver for our baby.

One year ago (on Decemeber 31), I left my job with every intention of finding something with a more flexible schedule.  We also knew something might be up with Megatron when I gave my notice because his spleen continued to swell. Within hours of leaving my office for the last time, Megatron was was admitted to the hospital.  And that kicked off the year of the hardest job I've ever had: "stay at home mom to a medically complex baby."  So much happened early in the year that I hardly remember the details.  It was a couple days in the hospital, a couple days out, then back in.  It felt like this happened over and over and over forever but it was really "only" about two months.  It wasn't until I went back through my 2014 planner to transfer dates into my 2015 planner that I was able to grasp just how much we went through this year...and this was just for Megatron.

We drove over 5000 miles for treatment.

We attended at least 89 medical appointments/procedures.

We spent 50+ days in the hospital.

We dealt with nine weeks of 3-5 times daily vomit.

We spent a total of eight weeks in Pittsburgh.

There were two calls to 911 and two ambulance rides.

Don't forget the two helicopter rides.

There were two major surgeries.

Most importantly though? One new liver.

I didn't earn an income and yes, that was hard not just on the bank account but it was also emotionally hard.  I never wanted to be a stay at home mom.  But that's how it worked out and I'm so thankful it did.  Can you imagine trying to manage everything above while also working?! Ha!

Our sweet boy, despite the recent challenges, is thriving.  We've been able to devote our attention to not just his health and healing from two surgeries but also to making sure he caught up/stayed on track developmentally. You would never know he spent 50+ days laying on his back in a hospital crib, either too sick or healing from surgery, to do the much needed tummy time.  You would never know he was cut open from limb to limb...twice...because we worked hard in physical therapy to teach him to overcome weakness, underdeveloped neck and back muscles, and abdominal muscles that were severed.   You would never know any of it by looking at him.

I'm sure the last 17 months aged the rest of us by a decade and it shows on our faces but it was worth it.  The drained bank account was worth it.  It was worth it because now we, and the rest of the world, will have the joy of getting to know this sweet boy.

I have no expectations for 2015.  Whatever the year throws at us, we will just keep taking steps forward.  Even if we take some backwards steps from time to time, the goal is cumulative steps forward.

The Fun Never Stops!

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

The afternoon after surgery....couldn't get comfortable.  He was also trying to pull out his IV and NG tube which is why his elbow was restrained.

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

After several days of him only wanting The Pilot, I finally got some baby cuddles.

Once we all survived several painful days though, he healed well from the surgery itself. It did take him a few days to regain his appetite and when he started eating after the surgery, he started vomiting.  Four to five times a day. Every day. For NINE weeks.  

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

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

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

Nothing helped and after a exhausting and puke filled Thanksgiving weekend, Megatron had lost too much weight. He was admitted to the hospital and had a feeding (NG) tube placed in his nose to do continuous feeds to help him gain weight while the doctors hunted down the reason for the vomiting.

This is our first hospital stay with a toddler and not a baby so we visited the toy room to play.

We have had a feeding pump at home before (pre-transplant) so the hospital felt comfortable sending us home after an upper endoscopy and three days inpatient.  We had a new learning curve once we got home.  Megatron was hooked up to the feeding pump continuously and naturally this is when he decided to start walking.  We spent several days following him everywhere he went, carrying the pump and bag of formula.

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

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

We went to the allergist and had a large skin prick test done.  They pricked his entire back and both arms with potential allergens.  That showed allergies to egg and peanut. So we can add back the other foods, right?  No. He's still showing some kind of reaction in his blood stream. And that has the doctors somewhat stumped. 

The second skin prick test this little dude has gone through.

But he had fun spinning the doctor's stool in the allergy clinic

And that's where we are right now.  He still has the feeding tube in place but we aren't using it. We are desperately trying to get him to drink the formula by mouth so we can have the tube taken out.  We have two appointments this coming week and we hope to have more answers. At least with his liver disease, we always knew what we were dealing with.  This latest challenge has too much unknown for my comfort level.

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

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

Looking all sweet and innocent with his little feet crossed.

Mission: Undo What the Baby Did: Update 7

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

By far the best workout was on Saturday.  I RAN 8 miles.  Not a run/walk but a RUN.  We stopped for a minute or two for water half way and walked through another water break closer to the end.  I was with my L2R gang and they really pulled me along.  They pulled me along so well that my pace ended up being at half marathon PR pace for me!  It was one last hurrah before we did head to Pittsburgh for Megatron's surgery.  It felt so good to hang out with friends for a good, challenging workout before heading into the stress of another hospital stay. What didn't feel good?  Sitting in a car the day after that 8 miler for 4+ hours as we headed for Pittsburgh.  Ouch.

And the week of October 6?  Nada. Unless you count standing next to a hospital crib or walking between the hospital and Ronald McDonald House.  Megatron had his abdominal muscles sewn back together on October 7.  The surgery went great but recovery was rough.  It was painful for him and very difficult for my husband and I to watch.  For about 3-4 days, it was hard.  Really hard.  As in, worse than the transplant hard.  But, each day got a little better and now we are back home to recover in the comfort of our own home instead of the hospital and then Ronald McDonald House.  And now that we are home, I can get back on the workout wagon!

Mission: Undo What the Baby Did: Update 6

Trying to make up for last week's discouragement, I woke up on Monday morning determined to turn it around.  As soon as I knew Megatron's afternoon nap was eminent, I strapped him into the run stroller and got to work.  The weather was perfect.  A couple miles in, something startled Megatron and woke him up but since he was being still, I figured he was still resting so I just kept going.  And going.  I stuck close to home since he was awake and I wasn't sure how long I had until his patience was out but he just hung out.  I kept pushing.  And I finally hit 6 miles!  That is the furthest I've gone pushing the stroller.  I also realized that it only took me 2 minutes longer to run 6 miles than it did the last time I hit a stroller run distance PR (5 miles).  I went an entire mile further in only 2 minutes longer!  While I may be discouraged by my lack of weight loss, seeing such a huge pace improvement was the confidence boost I needed!

 
Now that I have a sidekick with me, sometimes you just gotta stop mid run to check out the construction equipment.   The city is dredging our neighborhood pond, which happens to be a major rain water runoff pond for the city.  Downside to it is there is a ton of equipment rolling around on my path that I take for all of my stroller runs.  So far I've always been able to pass but they are making a mess of the asphalt.  Fingers cross they fix it!

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

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

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

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

Early 90s awesome!

Still crazy....it's like time never passes.