And HELLO NOLAN! Nice to have you back!

For now, we’re on a roll. We signed Nolan up for a little music class that a friend is teaching out of her house. It’s delightful, and she is doing all kinds of music appreciation with them. Today they had a little performance of the songs they learned. Unfortunately, we got there a little late and Nolan was a little out of sorts because of it (not to mention in desperate need of a haircut). By the end he warmed up, though, and had a good time. And he got a recorder to bring home (Oh joy!) which promptly broke upon us arriving home (Oh darn!).

What a Mug

I have mulled over this post for quite some time now. I’ve vacillated on what to say, how to say it, and whether it should be said at all. And to be honest, I’m not sure I’ve come to any conclusions other than I have to go with it. I should have a record of my feelings here and now. Because here at the Winters’ home, we’re officially heart sick.

About a year and a half ago, in June of 2009, I took my kids in for their well-child check-ups. At the time, their pediatrician noticed they both had heart murmurs. They didn’t seem overly concerned, and we got lost in other conversations, and the topic was dropped. Then, a few weeks later I had to take Mylie back in for another reason. At that time, the doctor mentioned again about her murmur and thought we should get it checked out. I reminded him that at our last appointment, he had been a little more concerned about Nolan’s murmur, so he gave it another listen and requested for me to take them both to a cardiologist, just to have it checked out.

About a month later I took both kids in for Echocardiograms (ECHOs). While Mylie’s murmur was benign, they were concerned about a thickening in Nolan’s heart, and wanted us to come back for a follow-up in about 8 months. The cardiologist seemed pretty relaxed, so I thought it was a fairly insignificant diagnosis.

Fast forward 8 months to March of 2010. We take Nolan back in for another ECHO, and meet with the doctor. He tells us that his initial assumptions had been confirmed and that  Nolan has Hypertrophic Obstructive Cardiomyopathy (HOCM). He explains that a part of his heart muscle, in between the ventricles, has become overly thickened, and is somewhat obstructing the bloodflow between the two chambers, therefore causing the heart murmur. And then he asks if I have any questions.

Questions? I don’t know. I don’t even know what you’re talking about. I’ve never heard of this disease before. What questions am I supposed to have? I mean, the only thing that comes to mind is, is it serious?

It turns out it is indeed very serious.

Hypertrophic Cardiomyopathy is one of about 4 types of Cardiomyopathy. It is the leading cause of sudden death among athletes.  Pediatric Cardiomyopathy occurs in about 12 children out of every million, and unlike other congenital heart conditions, there is no surgical treatment or cure that can repair the damaged heart or the stop the progression of the disease.

There is a vast amount of literature on adult cardiomyopathy but not all of the information is relevant to children diagnosed with the disease. Unfortunately, there has been little research and focus on pediatric cardiomyopathy over the years. Consequently, the causes are not well understood. According to the Pediatric Cardiomyopathy Registry, less than 25% of all patients have an identified cause despite rigorous, standardized evaluation. What is known is that the underlying causes of cardiomyopathy in infants and children may be considerably different from that diagnosed in adolescents and adults with similar symptoms. Pediatric cardiomyopathy is more likely to be due to genetic factors while lifestyle or environmental factors play a greater role in adult cardiomyopathy (Children’s Cardiomyopathy Foundation).

A diagnosis at a young age usually, but not always, signifies a serious heart condition that requires aggressive treatment. The concern lies in the uncertainty of how the heart muscle will respond with each additional growth spurt. With some older children, the condition may stabilize over time with the aid of certain medications or surgery. In severe cases, small children may experience progressive symptoms quickly leading to heart failure. This presentation contrasts with most diagnosed adults who may only have minor symptoms without serious limitations or major problems for years (Children’s Cardiomyopathy Foundation).

Luckily, for us, Nolan appears to be very asymptomatic. He does tend to tire more easily than his peers, though not significantly. When he gets worked up or gets sick, he develops a very palpable and very rapid heart beat. And our biggest blessing is that at least we know. So many kids who have this disease do not know about it until it’s too late.

So, I suppose that the reason this post has made it’s way to the blog at this time, is after 18 months, it’s finally sunk in that this is real, and it is not going away. We have recently been in for our 3rd ECHO, and there’s been no change. He still has too much heart, and that’s just not a good thing. Luckily, it hasn’t progressed, but the doctor has decided that it’s severe enough to put him on a medication. The medication (a Beta Blocker) won’t cure anything, but will hopefully manage is heart rate, and slow it down, so that it doesn’t overwork itself. The biggest threat to his life is electrical malfunction.

So with this last visit to the cardiologist, along with the prescription for life-long medication, I’ve finally started the grieving processes. I am grieving for the losses he has no idea are in store for him. Life as we know it has changed. He won’t be able to play competitive sports. He won’t be able to fully participate in gym class, and probably won’t be able to keep up with his peers. He may have to carry around an external defibrillator. There is a high likelihood that at some point in his life he will have to have heart surgery (either a myectomy, or an internal defibrillator or – worst case – a heart transplant). I’m grieving that he’ll be on medication for the rest of his life (and he’s only three). And I’m grieving the loss of my perfectly healthy wonderful little boy.

But on the other hand, I’m celebrating. How lucky we are to have found out now, before it’s too late. How lucky that he is young enough that I can steer him in artistic pursuits, and toward golf, and bowling. How wonderful that he won’t have to “give up” his favorite sport. How lucky that we have the medical technology for the types of surgeries he may need, and for the genetic testing to know if the rest of us are at risk. And how lucky we are for our faith in the gospel of Jesus Christ that we can know that he is being cared for by the perfect physician – and one who loves this little boy even more than I do. And in the meantime, I get to love him with everything I’ve got. Because I ♥ This Guy. And THAT is the best blessing.

After Christmas he didn’t let the idea drop, but his friends were all out of town until this week. So, both Mylie & Nolan each got to have one friend over to help in the demolition. Now please understand, this is the Costco kit, out of the box. We did not make anything from scratch. It is stale and hard and probably full of preservatives and any number of disgusting things. And it tastes AWFUL. It’s not even kind of good. It’s truly vial.

Somehow, that doesn’t matter to kids… at least not ours…

The countdown begins... the excitement is palpable...

Demolition begins

Delicious and nutritious.... NOT!

Oh the carnage!!!

We had so much fun destroying and eating the house, we’ve decided to make it an annual tradition. However, with more advanced warning, maybe we’ll make our own gingerbread next year, lest the children’s stomachs turn to cement bricks.

Now that we made the house both Mylie and Nolan are already talking about when they get to break it up and eat it. He wants to invite his friends over to eat it after Christmas. Can you imagine a bunch of 3-year olds eating hard, stale, disgusting gingerbread with hard frosting?

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Getting to the performance wasn’t too bad and I thought being there 30 minutes early would have given us enough time to get a cupcake at Cupcake Jones before the performance. Unfortunately parking was a bit of an issue and Mylie kept complaining she had to walk far. Once we got parked I had to carry and run with her to make it on time. The show was excellent, especially Miss Hannigan. It was hard to tell if Mylie had a good time because she just seemed to be tired the whole time. She also missed out on the cupcakes. Maybe next time.

For Nolan’s date night on Saturday we went with Karli’s aunts and uncles to Gospel Christmas put on by the Oregon Symphony and some local talent. This has been a tradition for her family for some time now but she was unable to come due to just having Oliver. Since Mylie got to see Annie the night before, I thought I’d give Nolan a try to see how he did at a performance. We went right after Mylie’s performance at Zoolights (see part 3) so he was already tired and the show did not start until 7:30 PM and went until about 9:30 PM. It also had a few extra encores. He actually did quite well the first half and even clapped many times but the second half he was very tired. He still stayed quiet and did a good job waiting. Folks around us were quite impressed with him too. He seemed to like the music but probably was a bit overwhelmed by the whole thing.

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Before his birthday party he got to “open” his present from us. It was not wrapped because it was a Strider bike, which is basically a small bike without pedals. It is great because he can learn more of the balancing than worrying about pedaling. Slowly he seems to be learning it but hopefully the weather here can clear up so he can go at it again.

We decided to have a simple birthday party with everything that has been going on. We rented a gym for about an hour where the kids could play on trampolines and a foam pit. Unfortunately the gym was not set up very well for 3 year olds so the instructor had a hard time controlling them. When trying to get them to follow orders, I kept muttering under my breath, “They are only 3.” I think the kids still had fun. After the gym we went upstairs and had cake and Nolan opened his presents.

These past few weeks it has been amazing to see how much Nolan has grown. He has been a lot of fun and hopefully the terrible threes (I believe 3 is worse than 2) for him will not be the same as they were for Mylie.

And what Halloween would be complete without a rabid frog prince?

Our Halloween was a full one, with Trick-or-Treating around the shopping center on Friday afternoon, our Ward Halloween Party (over which I was in charge) on Saturday, and Trick-or-Treating in the neighborhood on Sunday. That was more than enough to wear this old pregnant lady plum out.

Nolan, for his part, was still relegated to the Parent-Child swim classes. Can I just tell you how much I despise these? For starters, they are at our local swim center, which is fine for casual swimming, but I have not been too hot on the instruction. (Mylie takes at a private neighborhood pool, and Nolan will next year). And I HATE the set-up. I hate that they have swimming lessons going on at the same time and in the same pool as Water Aerobics, with the loud music and mic’d instructors. And I hate their changing facilities and don’t even get me started on the atrocious parking.

But I was sly as a fox this year, and signed him up for evening classes so that Nick would be available to take him. I may have added in some sob story about not wanting to be in a bathing suit pregnant, but Nick (being the good dad and all around good guy that he is) would have taken him anyway. Nolan had a great time and loved the class, but had a hard time waiting until the very last day to get to go down the water slide. Funny enough, once he got to go, he HATED it. We think it was more about being required to wear the flotation device than the actual slide though. He does not like to be inhibited in any way. So, in the end, we were all glad he got to take the “lessons”, or as I call them… moderated free swim, but I definitely look forward to next year when he can start in at the other pool at take real lessons. (Who knew I was such a snob?)

Floating on her back without human assistance = HUGE step forward

Visualizing the jump

And... JUMP!

Hey Mom! You should try this, the water's great!

I would be smiling, except I've got this annoying vest on...

Yeah, that feels nice.

Waterbug

Telling Mylie all about it

Syncronized Smilers

1. How could I not? Look at that face!
2. He’s a snuggler and he let’s me (on occasion) rock him for no good reason at all.
3. He loves to be carried everywhere. Okay, really, most of the time that annoys me. Especially because I’m carrying another baby around with me all the time. But when I stop and think about it, I do really appreciate it.
4. He gives the best kisses.
5. He is totally independent. I just admire that in a kid. Except for those times when I tell him no and he decides he’s big enough to do it anyway.
6. He’s got a great sense of humor.
7. He absolutely adores his big sister, even while he’s standing his ground with her.
8. He’s got a hugely long attention span for a 2 & 1/2 year old… especially when it comes to trains and cars.
9. He can now pronounce “Mylie” perfectly, but still chooses to call her “Lolly.”
10. He loves to sing. And does it well. And can match pitches. And that just thrills the little music nerd inside me.
11. He gets worked up easily, but calms down just as easily.
12. He now says, “I love you mom.”

Are you sure about this, dad?

He’s down!

No wait, he’s up!

Race ya!

This is the most fun I’ve ever had… except for that time I got to jump in the mud.

Nothing like a good mouthful of dirt

And the ever famous puddle jumper:

Come on in, the water's fine!

But Nolan recently got an opportunity to top them all. A few weeks ago we got to go to the Tulip Festival in Woodburn. Since winter is insisting on lasting FOREVER, it had been raining for weeks, and we were well aware that there would be mud. And I came prepared. Of course… I don’t think anything quite prepared me for what actually took place.

Upon arrival, he immediately discovered the duck races, leading of course to a total and complete soaking of his jacket.

We had to take a little ride around the farm on the cow train in order to dry off.

But then the real fun begins…

Testing the Waters

Mud Puddle Target Aquired

Ooooh, this is good stuff!

No turning back now...

Mud totally rocks!

Mylie was there too... just a bit more... cautious

This was the best picture pose we could come up with

With all the muck, I thought I needed at least one pretty picture

Lil' Rascals in search of more mud

Wanted to get a nice family shot... had to crop all the mud-stained clothes out of this one.

At this point, the mud has soaked through his pants into his diaper

And we top the adventure off with a nice face plant in a puddle

But wait, check out the lady pointing and laughing at him as he passed

The Walk of Shame back to the car... Mom refused to carry him!

And yes, in case you’re wondering, I did (amazingly) come prepared with a whole new set of clothes. I did not, however, have any rags or towels, and burned through almost a whole container of baby wipes trying to get him to a clean enough state for said clothes. It never fails to amaze me that this funny, mud-loving boy could actually be related to Mylie, who has to get up to wash her hands at least twice during most meals. Funny kids.

And the prize winning shot of the day:

The Gang

Both Karli and I have wondered when this day would come for our little boy. Possibly it has already but I saw it quite obviously today. Somehow all boys know how to make anything turn into a gun. Mylie was eating her dinner while Nolan was playing in the living room (he was already done with dinner). All of a sudden I heard “pquew, pquew” (how would you spell it?) coming from both of them and they each had a crayon and were shooting each other. It is amazing how kids learn from their surroundings but I am not sure from where this one came. I don’t even know which one started it first. I tried prodding to find out where they learned it but Mylie did not confess to anything.

Now, I was one of those kids who could turn anything into a gun. I also remember playing toy guns with other boys in our neighborhoods and had quite the fun time. One day we even had a shoot out where we got to choose the toy gun and what part of the body we get shot at. The one who “died” the best got to take his turn and choose the next toy gun and body part. I even made a wooden toy gun in my wood shop class. Imagine the public schools allowing that now.

My point is I am not an overly concerned parent but it’s just another step in our kids’ development. Even though I don’t want to encourage the behavior, I find it fun to see how their imagination works and reminds me of myself as a kid.

During Nolan’s haircut, he looked like a scary monster.

During Nolan’s haircut, we realized how dark his hair has become. No more little blond baby.

During Nolan’s haircut, Nolan used the comb to check us to make sure the length was suitable.

After Nolan’s haircut, he was just about too cute for words.

Nolan’s newest biggest accomplishment is discovering how to get out of nap times. And not just, “I don’t want to go to sleep so I’ll stay awake in my crib”. Oh no. He wants to get everyone out at nap time.

On Thursday, he came up with this brilliant scheme:

Just before I was about to put him to bed, Mylie comes running into my room as says, “Nolan did something bad.”

“Oh? What?”

“And I did something bad too.”

That’s when I knew I was in trouble. “What did you do?”

“Just come see.”

So, I came into the kitchen to this scene.

I almost lost it, but something stopped me. Instead, I took a deep breath and said, “Well, you better get down and play in it and have fun, because you’re going to be cleaning it up. And it WON’T be happening again.”

Did I mention the outfit he’s wearing was actually black when I put it on him that morning?

They had an excellent time pretending it was snowing in the kitchen and bringing all their toys in to join the party. After almost an hour, I finally called the game, and threw them in the tub (which made a sickeningly thick corn starchy water). Naptime was further evaded with an immediate trip to Target, and we are now the proud owners of one of THESE babies on our pantry door:

So, after one napless day, I thought he’d be due for a good nap on Friday. So, to really tire them out, we went for a bike ride. Okay, I was the only one getting tired out since I was riding the bike and they were in the trailer. For a treat, I took them to Taco Bell. Nolan finished his lunch first, and really wanted out of the high chair. I agreed on the condition that he wouldn’t run around or else he would get back in.

It worked. For a minute. And then he decided running up and down the booth seats was too irresistible. I told him to come back; he declined. I counted down from five. When I reached one I went to grab him, causing him to sprint back (along the seat) to his spot. He was just about there when we had one of those slow-motion moments as I watched him trip over Mylie’s leg, and tumble with his face headed right toward the edge of the table. He barely grazed it, but by the time I got to him there was already blood all over the place, and he had filleted a small piece just outside his lip quite nicely.

Ugh. Did I mention I was there on a BIKE?! I tried to get the bleeding to stop with him still screaming. Then, leaving all our trays on the table, I hauled both kids outside, got their helmets on, put them back in the trailer, handed Mylie a napkin and told her to hold it on Nolan’s lip while we rode, unlocked the bike and trailer, attached the trailer back on the bike, and took off to my friend’s house (the poor woman I call any time my kid punctures himself). She was nice enough to take a look at him, stash my bike and trailer in her garage, and then haul both of her own kids into her car where we threw Mylie in the back seat and shoved Nolan on the floor of the front seat so she could drive us back to our house. Once there, we loaded up in our van and headed the 20 minutes to the doctor’s office, where we waited another 30 minutes to be seen. Of course, by the time the doctor saw it, his lip was too swollen to derma-bond back together. We decided against stitches, so…. we left. Neat. Turns out the cut is small enough that stitches would have made almost the same size of scar so….

At least he got himself out of another nap.

I couldn’t get a great shot of the little monster’s lip, but you get the idea.

Seriously, boys are a different breed. After four and a half years of girl, I have not once had to consider stitches, and now in the last 2 months I’ve had to consider it twice with little brother. This kid might make me crazy….

Lolly and Neeno are the terms by which these two have come to be known in our house. The nicknames are really not nicknames so much as, it’s how Nolan pronounces their given names. And we think it’s downright cute. These two partners in crime have started to worm their way back into my heart. We had a really long year brief stint recently where, although I loved them very much, I didn’t really like them a whole lot. In fact, there were a lot of days I didn’t much like to be around them at all. It was one tantrum after another, and competitions over who could do the most damage to my ear drums with Mariah Carey-style screaming. And then there’s the whining. I swear, before I had preschoolers I thought, “Well, just don’t give them what they want when they whine and they’ll learn not to do it.” Yeah… I guess that may be true, but I didn’t realize preschoolers are such slow learners!! Even though I have NEVER given in to a whine, it’s still an ingrained tactic. It must be part a part of our genetic makeup as humans.

But that’s all starting to change.

Both kids have discovered a new parental tactic which gets them far more than they ever dreamed possible… politeness! Lolly has taken to randomly telling us thank you for things. “Thank you for making me this yummy dinner, mom,” or “Thank you for playing with me today.” Sometimes she’ll throw in a real zinger: “I had a great time being with you today, Mom.”

Neeno also says thank you for just about everything, including diaper changes.

Me: “Nolan, can I change your diaper?”

Neeno: “Geek ku Mommy.”

Lolly: “Nolan, do you want to be my pet kitty and have me boss you around and lead you around with a leash?”

Neeno: “Geek ku, Lolly.”

Truly, it’s just about the sweetest. thing. ever.

The other heartwarming trend that is appearing is how much these two love each other. Since Lolly was never really baby-crazy like a lot of first-born girls, she didn’t really ever dote on Neeno. So, they were close enough, but nothing special. Lately, it seems, though, that a new relationship is budding. Perhaps it’s stemmed from sharing a room, or perhaps it’s the northwest weather which keeps them locked inside the house for way too many days in the winter. Whatever it is, it’s beautiful.

These two have so much fun playing together. And they like the same things, which is amazing to me for a brother/sister pair. Lolly LOVES to play with Neeno’s trains, and Neeno loves to sing and dance to Lolly’s show tunes. And though their play time is punctuated with regular intervals of screaming and chasing each other down for a toy that one or the other has stolen, they quickly resolve it and move back to their games of make-believe.

So… I’m happy. I was really feeling down for awhile, like I had done something to cause my children to be bratty, ungrateful monsters. Turns out, it’s just another one of those phases that “they” don’t tell you about. It just happened to be a REALLY long phase at our house. But boy am I looking forward to this lovely new chapter!