Wednesday, May 27, 2015

What Do You Mean It's Not Asthma?

Last month I had what I thought was an asthma flare up.  It's not uncommon for me to have a flare up in the spring when I also have trouble with my seasonal allergies.  But I just couldn't shake it.  My doctor called in prednisone, which usually helps pretty quickly.  Except it didn't.  And my rescue inhaler wasn't working.  So for the first time since being diagnosed with asthma 25 years ago, I went to the emergency department.  They gave me a breathing treatment and a heavy duty dose of steroids in my arm.  I felt much better. 

I wish that was the end of the story.  In reality, I've had multiple flare ups in the last couple years.  I went from well controlled asthma to having horrible flare ups.  They often happened around Megatron's surgeries and other challenges so the doctor thought it was being induced by stress and we agreed that it would calm down now that our life is a little more calm.  But the thing is, our life will always have some amount of stress when it comes to Megatron. 

And here's where one of Megatron's doctors stepped in.  I had texted her when I was having the asthma attack and couldn't decide if I should go to the ED.  She ultimately told me to go, which I did.  But then she texted me that she set up an appointment for me in a couple days.  She is "friendly" with a pulmonologist, who basically had me diagnosed before I even showed up in his office.    It was a good thing too because the morning after the ED visit, I was right back to having trouble breathing.

At the appointment my pulmonary function test showed completely normal lung function.  Someone having trouble breathing and has a normal pulmonary function test is NOT having an asthma attack.  I have vocal chord dysfunction.  So I guess when I really stress out, my vocal chords try to close up, making it very difficult to breathe.  Say what?  All these years thinking it was just asthma?  That threw me for a loop.  I probably do have asthma, but it's most likely not as bad as I've always though (or even as bad as my primary doctor thought).  VCD is triggered by acid reflux and stress.  Two things I have had buckets of since Megatron was born.  So the goal is to try to lessen those triggers but I have also met with a speech therapist.  The speech therapist will help me with vocal cord exercises and help me learn the difference between asthma issues and vocal cord issues.  That is going to be really important because if it's my vocal cords, the rescue inhaler isn't going to help at all.

So luckily it isn't serious and it's already starting to get better.  One downside was that the ED visit came 5 days before and the pulmanologist visit and diagnosis came 3 days before my "big time PR" attempt at the half marathon distance... be continued.

Wednesday, April 15, 2015

Side Effects of Big Time

Before Megatron's last surgery in the fall, I was on Mission: Undo What the Baby Did.  That hasn't really stopped, it's just now called Big Time PR.  The goal being to reclaim my pre-baby body but also to reclaim a bit of the person I was before Megatron's health went into the crapper.  I'm running a lot now.  I've been running 13-20 miles a week since the new year.  The 2,015 in 2015 is a huge help keeping me motivated but also training for my Big Time half marathon PR is keeping me in gear.

The downside to focusing on running so much, I'm not mixing it up enough to confuse my body enough.  I don't seem to lose much weight unless I'm doing lots of different types of cardio.  The thinnest I've been since college?  During my triathlon training seasons.  I think the swim is what kicks my metabolism into gear the most.  Even though running is my focus right now, I am still seeing some side effects. 

I lost a good 7-8 pounds a couple months ago due to some very unpleasant food poisoning.  The few times that has happened before, the weight returns as soon as I'm able to eat again.  This time though?  I haven't gained any of it back.  While I would have much preferred to lose that weight it a less traumatic way, I'll take it.  But that was a couple months ago and the scale hasn't moved since. But something else moved.  My belt.  I recently started to cinch my belt one hole smaller.  I think while the scale isn't moving much, my weight is shifting.  I think my legs are getting much stronger from all the running and I'm finally starting to tone up in some areas.  There is still A LOT of work to be done but it is nice to finally see some physical changes after so much hard work.

Another side effects involves a pair of jeans.  Let me share a timeline of my favorite jeans.  I wore them through my first trimester before needing to switch to maternity jeans.  Then, I was able to get back into them when Megatron was about 3 months old.  Then Megatron's transplant happened and I lived in a hospital with crap food way too accessible or at Ronald McDonald House where I really only had access to a microwave and its hard to eat healthy with just a microwave.  The stress also had me making very poor food choices in general.  The jeans haven't fit since I gained the baby weight back during the transplant recovery process.  That is until last week!  I can get back into my favorite jeans!  Yes, losing another pound or two would make them feel even more lovely,  but they button and I don't look like two pigs fighting under a blanket (name that movie!).  I am so happy!  Jeans have been a challenge lately.  I've in between sizes.  The jeans I've been wearing are getting loose and baggy but the next size down is just a bit too tight still and causes a major muffin top.  So when I randomly tried on my old jeans and they pulled right on, I nearly had a party in my closet.  I even made Megatron give me a high five.

So here's to progress!!

Sunday, March 29, 2015

Big Time

Back in September I was mulling over the idea of registering for the Cap city 1/2 marathon in May.  It's pretty expensive (overpriced in my opinion) but it's cheaper than traveling to a big race (Oh" Disney, I miss you!).  Still, it seemed like a big chunk of change just to run around town.  I chatted it over with The Pilot and he gave me the thumbs up to spend the money and register...with one condition.  I had to train for a "big time" PR.  Those were his exact words.  I naturally had to ask what he meant by "big time" and he simply replied BIG TIME!  Uhhh.... What if I get injured the day before?  What if it's 90 degrees on race day (we all know I hate heat!)?  He didn't care as long as I trained for a big time PR.  If we were going to drop big money for me to run around town, it wasn't going to be just for fun.  I would have to earn it!  Challenge accepted.  I registered right then and there.

I didn't officially start training until the first of the year but it's been full on big time ever since!  A huge factor in keeping my mileage up when the weather was awful was the 2,015 in 2015 challenge.  I couldn't let my teammates down by not getting my miles in.  So between the weather and The Pilot's schedule, I spent A LOT of miles on the treadmill after Megatron was asleep.  The trouble with my treadmill was I'm fairly certain it's not very accurate.  The miles and my times just didn't seem right.  I randomly got outside but it was often pushing the run stroller so again, I wasn't getting a very accurate idea of what my pace was looking like.  

Finally the weather started to get a little better and I've had several outdoor runs.  There was even an 8 miler pushing the stroller.  That's nearly 50 pounds of stroller and toddler!  I felt pretty badass...and exhausted.  I was darn near crawling at the end.  But had to go home and chase after said toddler for the rest of the day.  My pace wasn't awful considering how hard it was but it wasn't anywhere near PR pace.  I do think that was good mental training.  Megatron whined for the last 2 miles when I really could have used a pep talk instead.  But with each outdoor run, I started to realize I was pretty consistently averaging just over or right at PR pace.  I also had a couple runs where I realized I still had a little gas in the tank when I finished....meaning I needed to step up my game and push harder.

And I think I did that especially on my last 2 long runs.  I did 8.5 miles last weekend right at my PR pace and then yesterday, my 10 miler average pace was 15 seconds faster than my current PR pace.  I was super excited to see that one!  What was incredibly helpful in making that happen was running the first 6 miles with 2 ladies who run faster than me.  They said I was setting the pace but in reality, I was just hanging on with them.  But that's what I needed to do, because even though my body was trying to tell me to slow down, my brain decided to override and hang on!  I even had a 4 miler recently where my average pace was 11:59!  An 11!!!  For all of those runs, I left it all out there.  I know I have more in me, I just have trouble tapping that extra speed on my own.  I somehow am able to keep up with people for longer than I realize.   I'm starting to think I might line up with a pace team at Cap City and hang on for as long as I can.  Right now I'm thinking a 2:45 half is pretty reasonable.  That would be a 4 minute PR.  Hopefully that's "big time" enough! :)

Friday, March 20, 2015


Today is a day where my perspective  on parenting, and life in general, makes it hard to relate to other parents with "normal" kids.  Generally I don't feel this way because no one wants to see their kid upset or hurt.  And most days, despite my perspective, I can feel for parents who are stressing over common parent worries or stresses because I feel those things too.    But I would give anything for my kid to be upset or hurt simply because he's getting vaccines or is teething or is cranky because he didn't sleep well. For us though, it's because he's spent 70+ days in the hospital, he's been "poked" for lab work more than 130 times, etc.  Because of that perspective, it is sometimes hard when I see other parents having a hard time watching their kiddos receive vaccines.  A quick shot?!  Seriously?  My baby has been cut open from limb to limb THREE TIMES.

So why am I feeling like this today?

Megatron started vomiting again 2 weeks ago.  We were attempting to reintroduce foods and it appears it has failed.  We eliminated the foods again but the puking has increased.  It's been 5-6 times daily for the last 4 days.  We spent another frustrating 2+ hours at Children's today, no closer to understanding what is wrong.  We have a diagnosis, two actually, but we don't know why.  They can't treat it unless they know why.  It is so rare that there isn't a lot of information out there about it and it has everyone stumped.  No, this isn't just about the puking.  He's had wonky lab work since October.  His liver looks great, it's his white blood cells that are out of whack. And leaving this untreated can cause damage to other organs, the heart especially.  After living through an organ transplant with Megatron, when I hear a doctor telling me there is something wrong that may cause damage to his other organs, I suddenly feel like I can't breathe. There are a couple rare causes that require more invasive testing.  We've tried to avoid it because no one wants to put him through more than he's already been through but it looks like we may have to go that route.

Today, I have no patience for petty problems.  Today I have no sympathy for people going through normal childhood ailments with their kids. Instead I'm frustrated that my child has done "rare" from the day he was born.  Everything that has been wrong with him has been so rare we've had to go out of state for treatment.  It's so rare that we now have FIVE doctors (8 if we count the entire Pittsburgh team).  And none of them quite know what to do.  That's unsettling.  And frustrating.  And has me feeling lots of hatred towards all things liver disease.

I know this will pass.  I feel strongly that we will get this figured it out.  Not today, not tomorrow but someday.  And then I can go back to pretending I'm a normal parent and can commiserate with other parents that our kids are teething or won't eat their dinner.

Friday, March 6, 2015

Day in the Life: 19.5 months

It's been quite awhile since I've done a "day in the life" 6 months ago.  Wow, has a lot changed! I had fun taking pictures all day, though it did slow up the process.  But it was a day we didn't have any plans other than cleaning up after making messes all day the day before (laundry, groceries, paying bills and running 5 miles meant that nothing got cleaned or straightened up all day).

I got up around 6:30 (well, 5:45 when the damn cat started pawing at the door wanting to be fed...45 minutes early).  I fed the cat then  mixed up a batch of Megatron's "milk."  Due to his restricted diet, instead of any type of milk product (dairy or plant based), he drinks "medical food."  Tasty.  Not really.  But after A LOT of work back in December, we got him to drink the strawberry flavor.  Anyways, he could certainly drink a plant based milk that doesn't contain any of his restricted foods but because of his restrictions, its hard to meet all of his nutritional needs through food alone.  So he throws back the hypoallergenic formula. And now that powdered formula is back in our house, our kitchen island always looks like we have some kind of drug habit.  There are usually traces of powder everywhere.  Sigh.

I sat on the couch with a neglected cat while I ate my breakfast and watched the news. Megatron woke up early the day before (by about 35 minutes) so I had no idea when he'd get up.  Eventually, right around his usual time, 7:30 or so, he started babbling.  I got up and got his meds ready. One is refrigerated so I don't get them ready until I know he's awake.

A recent trip to The Container Store and I now have a nice and tidy med organizer!  So much better than our previous basket with plastic cups shoved in it).  My type-A personality hasn't died completely since I stopped working outside the home.
When I opened his bedroom door, he immediately scrambled to stand up and started shouting "Dada! Dada!" and I responded, 'no, it's me, mama."  He's done this every day of The Pilot's current trip.  I try not to take it personal that he always wants The Pilot while I also try not to be sad that Megraton obviously misses him. I tried to pick him up but he said no and decided he needed to give his Mickey Mouse a hug first.  He also calls Mickey Mouse "mama." He then decided he was ready to get up and I laid him down to change his diaper and get him dressed.  He recently found a baby sign language book on the shelf and started carrying it around.  He likes the cover because there is a photo of a baby and he carries the book around saying "bebe."  So he "read" his "bebe" book while I tried to get him changed. Once he had a clean diaper on though, he escaped.  He went back to his crib and tried to reach for his pacifier (which he is only allowed to have while in his crib). He turned around and yelled for me to help but no such luck.  I was trying to catch him to get him dressed.  He then took off in the other direction and plopped down to read a book...upside down. I reached for him again and he took off again.  This time he needed to shake the IV pole that we still have in his bedroom (but aren't using.  I'm afraid I'll jinx it if we take it apart and take to the basement). 
Shake! Shake!
I finally captured him and put his clothes on, then headed downstairs for his breakfast.  We reintroduced wheat into his diet and boy did that open up lots of possibilities for us!  He was able to enjoy mini blueberry waffles with some honey on them as well as his favorite fruit, and cantaloupe. He also took his meds really well.  We have good days and bad days since we had to had back an iron supplement.  It tastes terrible and he doesn't like it so he says no a lot and turns away or won't open his mouth.  Since he did sleep a little later and he took so long to capture to get him dressed, he was still in his high chair when my phone alarm went off indicating it was time for his immunosupressant.  We recently switched from giving it at night to giving it in the morning and so far its working out much better.  It's a different med though and this one tastes bad too so we have to give it carefully so we maximize how much ends up down the hatch.

After hosing all the honey and cantaloupe goo off him, I set him free while I cleaned the kitchen (which was still a disaster from yesterday).  He was a busy bee while I worked (stopping to make sure he wasn't getting into too much trouble and to take pictures).  A couple days ago he stole a hanger from the basement laundry area and has been waving it around at me.  He also recently discovered when he's wearing "slippery" clothes (soft, cotton fabrics), he can lay on the kitchen floor and push himself backwards.  He's easily entertained. He went down his slide a couple times and then wandered to his books and "read" to himself.  I love love love when he does this all on his own.  And sometimes he will grab my hand and have me sit, then he climbs onto my laps and wants me to read to him. 
He decided he needed to be just a little closer to me to do his reading so he brought his book into the kitchen to point and "read" some more.
While he was all over the place, I washed syringes (still my least favorite "chore!"), loaded and unloaded the dishwasher, hand washed some dishes, swept and mopped the floor under Megatron's chair, realized our homemade floor cleaner was almost empty, mixed up another batch (super easy and inexpensive by the way), put a blind cord wind up on one of our living room windows that has a freakishly long cord, realized Megatron was in the pantry trying to open a new bag of veggie straws, shooed him out and into the family room while I cleaned the stove top, took out the trash and finished up in the kitchen. Also during this time I found myself actually saying: "Stop licking the floor!"  "Get your mouth and fingers away from the trashcan!"  "Did you just actually lick the pantry door?"  "Why are you chewing on my pant leg?  Are you part dog?" I wish I was exaggerating.
That's when I realized what else Megatron had been up to while I was busy in the kitchen.  I cleaned one room only for him to basically blow up another room.  THIS is what stay at home moms DO all day.
If you look closely at Megatron, his arms are in the air.  He was "dancing" to the Pandora station I had playing.
I knew he was getting bored based on how frequently he was bouncing from one thing to another so I asked if he wanted to go upstairs.  He RAN to the stairs and started shaking the baby gate. I took that as a yes.  I let him climb the stairs on his own...which takes forever!  He wanders from one side of the stair case to the other, inspecting all of the beat up woodwork, and picking at invisible lint and/or wads of cat hair.  After what felt like an eternity, we made it to the master bedroom where all of the laundry I had done the day before was waiting to be put away.  Megatron "helped" for a little while.  And by help, I mean he kept taking things I had already sorted and put them back into the baskets.  He eventually wandered off, getting yelled at to stay out of the plants before emptying a bag of travel shampoo bottles and scattering the bottles all over the bedroom.  Then he got stuck in a chair and yelled for help....this child!
We were upstairs longer than I realized and while he was content upstairs, as soon as we came into the kitchen, homeboy was HUNGRY!  In that top left picture below, he isn't crying.  He's yelling at me.  Pleasant.  I made him a sunflower seed butter and jelly sandwich and sweet potato fries.  He also had baked beans but I was dolling those out.  If not, it gets EVERYWHERE and he also won't eat anything else.  He loves baked beans. "Ba beeees," (yes, it comes out sounding a lot like babies) he kept demanding. This is also the first time I gave him such large pieces of a sandwich.  After suspecting I might still be treating my toddler, who has a mouth full of teeth, like a baby and after asking a couple other mamas with kiddos his age, I decided to give it a try.  He was confused at first but seemed to figure it out.  But he didn't each much of the sandwich though.  Not when there were "ba beeees" on the table.

After I got the kitchen cleaned up (again),  Megatron was content to drive a Thomas the Train toy around the kitchen so I worked on prepping a lentil and rice casserole for dinner.  I love this casserole!  It takes awhile to bake but other than chopping the onion, you just dump everything in the dish and put it in the over.  Once it was ready for the oven, I tossed it in and took Megatron upstairs for his nap.  I knew he was ready because he randomly started using his word for his pacifier (We call it a paci and when he says it, it comes out baba).  He only gets the paci in his crib and this is the first time he's used the word outside of his bedroom so I figured he was ready to nap.
After Megatron went down (easily as usual) for his nap, I did something I don't think I've done since he was born.  I sat down on the couch, ignored the mess around me, and read.  A wonderful friend mailed this book to me when she was done and it sucked me in immediately!  I stayed up way too late the night before reading and knew that if Megatron slept long enough, I could finish it.  And I was dying to know what happened! 

Love her books and I think this might be my new favorite of hers.
Naturally I got sucked in again and was startled each time the oven timer went off to remind me to stir the casserole.  And with perfect timing, the casserole was done, I had just a couple pages to go and then Megatron started babbling over the monitor.  I was a happy mama!  He slept for a little over 90 minutes, I got dinner done AND I finished the book. 

After I got Megatron up from his nap, we spent some time coloring a thank you note.  We had an appointment coming up with his GI doctor so we are taking a thank you for her and the rest of the clinic staff.  After trying to eat the crayons, it was time for a real snack.  We sat together and munched on a snack while watching a Sesame Street clip on the PBS Roku app.  Then it was back to busy busy.  He played with a current favorite...the baby grooming kit that has the fingernail clippers, nail files and things like that.  I have no idea why but he loves to take everything out and sometimes put it back in.  I had to say multiple times "don't eat the alcohol pads! Stop licking the bulb syringe."  Once that novelty wore off, he moved on to carrying a ball around that is bigger than he is.  It's pretty funny to watch because it often knocks him off balance and he looks like he's been drinking and is randomly carrying around a giant playground ball.  He does decide he wants to play with me and we take turns rolling and bouncing the ball.
We FaceTimed with my mom for a couple minutes but it was time to heat up dinner.  Since I made dinner during nap time, I just needed to reheat it and add some veggies.  Easy and quick!  Though not quick enough for Megatron.  Who started heckling me again as soon as I got into the kitchen.  He also decided it was time to mess the the cat's food bowl for the millionth time to decide if mama STILL yells at him for doing it.  Yup!  I told him to get out of her bowl.  He promptly melted onto the floor and put his face down to "cry."  But as soon as he heard my phone snap a picture, he sat up and looked at me.  Faker.

Dinner was was also a test.  The last time Megatron ate the rice and lentil casserole, he had a pretty significant (to me at least) reaction.  His face got red and his lips puffed up.  A dose of Benadryl and it went away within 20 minutes.  The allergist looked over the recipe and then tested Megatron for allergies to some of the spices used (we already knew he was fine with rice, lentils and tomatoes).  They all came back negative so the allergist gave the ok to try it again.  He was just fine.  Must have been a random incident last time.
Still getting the hang of the spoon and fork deal.  He seems to scoop better with his left hand but when he tries to put it in his mouth, he rotates his wrist and dumps food on himself.  He has trouble scooping with the right hand but has better aim for his mouth.  Practice makes progress!
No one is crying over spilled milk here.  Just lots of pointing.  Neither of us knew what happened.  The sippy cup JUMPED off the table, bounced off his chair and the lid flew off.  Whatever.

After dinner, I cleaned up the kitchen (again) and got the dishwasher going.  I gave the kitchen floors a quick sweep and then a once over with the mop....with Megatron following me, trying to play with the mop.  I could tell Megatron was losing steam.  It's hit or miss around 6 pm.  He's either perked up from dinner or he is still clingy and cranky.  Today he was a little clingy and was content to sit on my lap while I stuffed the inserts into his cloth diapers.  We are still doing cloth, just not full time.  Maybe 50/50?  Some weeks its only disposables at night and then other weeks I'm lucky if he is in a cloth diaper twice.  I just still haven't found my groove but some is better than none.  And I'm fairly certain the cloth diapers have paid for themselves so far.  That means anytime I use them now, it's free! 

Once the diapers were put away, I asked Megatron if he was ready for his bath.  He scrambled for the stairs and started shaking the baby gate.  I guess so!  
Figuring out how to pour water on himself.
He likes to "pinch" the water. bath foot tasting.
After Megatron's bath, I pinned him down to brush his teeth. :(  Ever since the allergist recently pried his mouth open to take a look, Megatron won't let us easily brush his teeth like he had previously.  But teeth brushing is non-negotiable, especially since he takes iron and it turned his teeth grey last time he was on it.  Once he was crying and I was sweating from the teeth brushing, it was time to relax and read bed time stories.  We read two books instead of the usual 3-4 because I'm attempting to get him to sleep a few minutes earlier each night until the time change.  With any luck, he won't be too out of sorts.  He's never had trouble before but previous time changes were when he wasn't on such a consistent schedule so an hour change didn't matter much.  This particular night though, he was quiet by 7:10 pm. Score for mama!

Once I straightened up the family room, I changed my clothes and hit the treadmill.  AGAIN.  The weather lately and The Pilot's schedule has had me tethered to this machine for the last month+.  But, I am getting my miles in and I'm right on track for reaching my 2,015 in 2015 goal. Without the 2015 challenge and working towards a half marathon PR, I highly doubt I'd be spending this much time on the treadmill.

I did 3 miles and then hit the shower.   Once I was cleaned up, I started working on this blog post. I was still working on it when The Pilot came home.  We caught up for a few minutes then went to bed!  And as usual, I was exhausted!

Thursday, February 26, 2015

One Year S/P

In the medical world, s/p means status post.  For awhile, Megatron's diagnoses was biliary atresia status post kasai procedure.  Now, it is biliary atresia s/p liver transplant.  And today, we are one year s/p liver transplant.  I can't even believe it.

Starting on February 26, 2014, our world started to have glimmers of hope.  Everything prior to that was by far the worst, most painful and scariest time I have ever experienced.  But because of the selfless act of one person, it all turned around.  Liver disease was trying to steal my then 7 month old baby from me but in an act that I wasn't capable of, The Pilot's cousin saved Megatron's life by donating a portion of his liver.  A "beautiful" piece of his liver according to one of Megatron's surgeons. A liver that for the last 365 days has worked hard to remove all of the toxins that had built up because of Megatron's faulty native liver.  A liver that has kept working despite Megatron's body trying to reject it last summer.  A liver that has given Megatron the opportunity to grow into a normal, thriving, ornery toddler.

I am even more overwhelmed now by The Cousin's gift than I was when we first heard he was getting evaluated and then found he was a match.  I think the reason for that is before transplant, we lived hour by hour.  There was no time to sit and reflect or process what was happening.  It was happening too quickly.  We went from having a relatively healthy baby at Christmas to being added to the national liver transplant list one month later and then a month after that, having a liver transplant.  Plus, when we were in the thick of it all, we couldn't/wouldn't see how bad it was.  It wasn't until months later that I went back and looked at the photos did I see just how bad it was. Megatron was dying.  It sort of felt dramatic to think/say that back then, but it was true.  At 7 months old, Megatron was only about 12 pounds and nearly a pound of that was fluid and blood that wasn't circulating.  You could see every bone in his body as his skin just hung from him.  Yet his abdomen was terribly distended and was tight and hard.

Two days before and bones
Two days before transplant with a distended belly.

Then The Cousin reached out and said he was going to Pittsburgh to be evaluated to be a donor.  We were in shock.  But also still in and out of the hospital so we couldn't even think straight let alone think about it being a real possibility.  Then, a few days later it was confirmed he was a match and surgery was scheduled.  It happened so quickly.  And we are thankful it did.  Megatron was out of time. 

Even when transplant day arrived, it was like time stopped yet was on fast forward at the same time.  I remember not wanting to let go of Megatron that morning.  I wanted to hold him forever.  But I knew he needed a new liver and he needed it fast.  So I handed him over to a team of surgeons and nurses.  Somehow I had managed to mentally prepare myself for the wait.  We knew it could potentially take up to 12 hours for the surgery so I planted myself in the waiting room and waited.  What I didn't prepare myself for was after transplant.  I had not one thought of what would happen after I walked out of that waiting room.  I didn't dare allow myself to think of anything after the surgery.  There was too much of a risk for it to not work.

The morning after his transplant.  He looks scary and beautiful to me.  Because despite all the tubes and wires and the giant incision, he is pale, pink and no longer distended.
That shriveled up green thing on top is Megatron's native liver, compared to a healthy child's liver on the bottom.  He's a miracle and a fighter by every definition. He survived with that thing in him. And was strong enough to survive transplant.  I look at that and my heart aches for what he went through.  My heart aches that more people aren't registered organ donors.  My heart aches that The Cousin was so selfless that he risked his own life for my child.  But as the pathologist who showed us Megatron's old liver said, that liver is no longer in my child.  We can say goodbye to that bad liver and move on. 

I think as a parent, its natural to dream of your child's future.  What are they going to be like as their personality develops?  What will they look like?  What will they be when they grow up?  I stopped thinking about those things in January 2014.  I stopped stocking up on the next size clothing.  I stopped stocking up on diapers when they went on sale.  I couldn't.  It wasn't that I didn't have hope.  I had tons of hope!  The thing was, we were aware enough of what was happening and the statistics, that there was a very real chance that this would not end as we had hoped. I think going through that experience has changed me.  How could it not?  I think a small part of my brain will always be traumatized.  I think a bigger piece of my heart will always be broken.  I think my heart will always start racing and my stomach will be in my throat when I hear the beeping of an IV pump or a feeding pump.  Or a helicopter flying low.  Or an ambulance racing by.  Or the lullabies that one of Megatron's toys plays because we played them for hours upon hours in the hospital before and after transplant.

Smiles!  Two weeks post-transplant and getting discharged from the hospital!
But despite all of that, my heart is so full.  I'm finally starting to catch myself wondering what Megatron will be like in a year or when he gets to kindergarten.  Will he like school and books like his parents?  Will his hair get darker?  Random things like that.  I also feel I had a huge milestone (breakthrough maybe?).  I bought Megatron a pair of shoes from a buy/sell group on Facebook.  They are brand new and were a great price.  They were also a size 8.  Megatron is barely in a size 4 right now.  It seems like such a silly thing but for the first time in over a year, I've allowed myself to envision Megatron growing up.  I can see past the current hour.
11 months post transplant. Silly, sweet boy.
We've had a lot of ups and downs this year but none of it was as traumatic as the two months before transplant.  Yes, his abdominal closure surgery in October was horribly painful for all of us, the vomiting that lasted for 9 weeks in the fall nearly sent me over the edge and the feeding tube in December seemed like a big setback.  But none of it was life threatening.  They were bumps in the road compared to pre-transplant life.  Our perspective on life has changed dramatically this year.  We celebrate small and unconventional milestones around here (Hello learning to sit and crawl without ab muscles!  And heck yeah for having the NG tube removed!  Reducing and discontinuing medications?  Party worthy! Going up a size in diapers after NINE months in the same size?  Write that down in the baby book!) and very rarely take for granted normal and/or silly milestones.  Megatron went splashing in the cat's water bowl again?  I discipline first and then quietly snicker and smile because he CAN get into trouble.

Megatron is here to do all the ornery things that little boys are supposed to do.  And even on the hardest days (and anyone with a toddler knows, there are some hard days!), not a day goes by that I don't think about The Cousin and what he did for our family.  Every single day I think of his selflessness.  It makes me thankful that my Megatron is here to be ornery.  It makes me try hard every day to take care of Megatron to the best of my ability.  It makes me try hard to be a good person and set a good example for Megatron.  Because how else can you thank a person for giving a part of their body to save the life of your child?  There never are enough words to express that gratitude (though I don't think I'll ever stop trying).  But there are my actions.  I will take care of Megatron and his new-to-him liver.  I will teach Megatron as he grows up how to take care of himself and respect the gift he was given.  And each year we will celebrate his liver day!  And celebrate The Cousin's amazing gift. And each year on his liver day, we will tell Megatron his amazing story.

Tuesday, February 17, 2015

SAHM Stereotype?

I'm a stay at home mom now, so aren't I supposed to troll around on Pinterest all day?  Horrible stereotype right there!  To be honest, most of my pinning took place while I was pregnant and had no energy.  So I pinned crap and then never did any of it because I was so tired from being pregnant, then had Megatron premature and then there was that whole liver failure ordeal.  But now that things aren't so life and death, I've been acting on my pins.

It started innocently enough with a couple recipes.  Some were winners, some were complete failures. Then I moved on to toddler activities.

Paper towel tubes taped to a door so Megatron can drop pom poms down the chute.  Of course then I got paranoid that I'd have to explain to his GI doctor that "yes, I know you saved his life and then I let him swallow a cotton pom pom" so we don't play with this very often and really its only good for about 5 minutes of entertaining at a time.

Then I busted out the power tools.  Megatron is the proud owner of a busy board.  This took me a couple weeks.  It started with a piece of plywood that I used my 7th grade shop class teachings to spray paint...our garage floor has a yellow tint to it now. 

Then it was a trip to Habitat for Humanity's ReStore to buy some various hardware.  Megatron loves thermostats.  I have no idea why but he can find one anywhere we go and will point and grunt until you pick him up and show him.  So yes, his busy board has a thermostat.  He also loves a good light switch! There is also a hinge, a springy door stop, a wheel and some slide locks.  And to make it slightly more educational, house numbers to practice counting to four.

Mom, this light switch doesn't DO anything.
But this door stopper makes a funny sound!

So serious.
My very own thermostat!
Playing...or working on his squats?
The busy board was a hit and worth the time, effort and money.  He randomly plays with it still and I think he may continue to do so.  He hasn't quite figured out the slide locks so I hope we still get some play out of it before we pass it along to someone else to enjoy.

My next project is in the works and involves repurposing some decorations from our wedding as well as some kitchen cabinet doors from before we remodeled our kitchen. 

So that's the extent of my Pinterest projects.  It's only taken a year of "unemployment." Hehe.