Weekend full of ben-chures

As Elijah would say, we went on two "ben-chures" (adventures) yesterday. We finally got to the splash park. Elijah loves that place. He now goes down the "bear swide" all by himself!



Sam was indifferent. He explored when we first got there, but then just wanted Mama. And food.



We took a little snack break and continued watching Elijah make friends. ADULT friends, that is. He approached just about every adult in the area. "Hi! What's your name? I Elijah!" As usual, he ignored all of the children.



After our spwash park ben-chure, we went home to take a nap and then headed to my cousin's house to see some family we hadn't seen in a while. Elijah fell hard for a toy race track, so he cried half the way home. "Waaannnt to cooome back to Tweeeeevor's hooooouuuuse...pwaaaaay wif caaaaar twaaaaaack."



We might head to the dropzone for a bit this afternoon, but haven't decided on that yet. For now, Sam is napping, Elijah is making food with play-doh and I'm catching up on blogs.

A quick couple of tidbits..

Elijah had been talking a lot about his "baby sister Sam." Dan and I kept correcting him, saying, "No, Sam is your BROTHER." Elijah kept insisting that he was right. Then I realized he was talking about his babySITTER, whose name happens to be Sam. So his babysitter Sam is his "baby sister Sam."

I realized today that Sam has absolutely zero interest in television. When Elijah was his age, he was already a full-blown Veggie Tales addict.

When I called Dr. G to get Elijah cleared to go swimming, he said it was fine for him to be in a pool but that he should do no diving. I started laughing hysterically! Diving?! The boy who won't take a 2-inch step down without holding onto someone's hand? Ok, Dr. G, I'll make sure he avoids that. :)

I have a super funny photo to share that I haven't gotten off my camera yet. I won't totally spoil it, but I will just say that Sammy constantly likes to show us how strong he is. :)

Catchin' up

Catching up on writing down some cute things the boys have been up to lately..

Sam is starting to say words aside from MAMA DADA and BALL. Last night I had him saying CHEESE (food, not cheesin' for the camera...yet!). The other day he was attempting BLUEBERRY. It sounded like BUH-BUH. If I ask him what a cow says, he will say BOOOO! If I ask him what a duck says, he will say GA! GA! GA! We're working on other animal sounds. He's been doing this for a while now, but if Dan leaves, Sammy will open and close his hand and say, DA-DA DADA, which in Sammy speak means, BYE BYE, DADA.

Elijah is doing well with potty training. If we stay on top of reminding him, he can stay dry all day, even through naps. Poop? Still zero progress. I started trying to "persuade" him with lollipops, so now he gets fixated on that to the point where it is maybe doing more damage than good. The first thing he does upon getting out of bed in the morning is gaze longingly at the bowl of lollipops. This is followed by a huge dramatic show filled with tears and the whole works. "I want wowwy-pops!" I tell him that I want poop in the toilet. So he sits on the toilet and tries soooo hard to make himself go. "MOMMY! HELP ME POOOOOOP!" So, the lollipops aren't helping. Not yet.

Sam is walking EVERYWHERE. It is now his main means of getting around. It is so stinkin' cute. Elijah never went through the wobbly walking stage, so it is really fun. I took the boys to the park last night and loved watching Sam wobble up and down the sidewalk. While attempting to eat rocks. :)

Elijah is very attached to his stuffed monkey Nemo that Auntie Debby gave to him before surgery. He takes Nemo (along with Ladybug and "soft bwue polka dot bwankie") out of bed with him every morning. Nemo sits downstairs with us all day, and he even accompanies on park excursions. The other day I caught him rubbing Nemo's head and saying, "Awwww. Nemo so soft. I wubbing Nemo's hair. Awwww. I wuv Nemo! Nemo wuvs Elijah!" :)

Sammy = CLINGY. If we are in public (if anyone besides Dan, Elijah or me is within sight) Sam refuses to be set down. He often gives people the "hairy eyeball," as my friend Heather calls it, from the safety of Dan's or my arms. He will stare people down with the most serious face, never blinking or averting his eyes.

I feel like we haven't gotten out much this summer because, well, we just haven't. Between our weekend dropzone visits and everyday life and post-surgery blues, we just haven't done much. I've been trying to make more trips to the park (Sam suddenly hates swinging..??) and I'm looking forward to getting my boys to the pool and zoo, as well.

That's all I know! More later..

If only it weren't blurry...

Videos from OHS #3

Before surgery, after Versed.. :)



The first time we got to see him after surgery..



Sleeping, that first night..



Sammy came for a visit..



Playing with his favorite hospital toy, which happened to be a....toy hospital!



Discharge day!

The newest cooking network star

Elijah has needed his share of discipline lately. This kid is SO. STRONG. WILLED. The way we need to discipline him daily is the way my parents had to discipline me...I don't know, twice. One of the things he has learned to do when we are talking to him after a time-out is to distract us. One of his distraction methods involves crossing his eyes. It drives me crazy!



Most of the time when I'm with Elijah, I am smiling. Here is something that has made me smile lately..

I occaaaaaasionally like to turn on a cooking show. A few weeks ago, instead of asking to watch Despicable Me or Little Einsteins, Elijah has started asking me if he can watch a cooking show. :) He even knows all of the hosts' names. He knows that Paula Deen likes to say, "Y'all," and he knows that Rachel Ray likes to make burgers. The other day he said, "Hey Mom, will you please check if 'Guy's Big Bite' is on?" Ok, I didn't even know that was the name of his show!

I do enjoy lounging on the couch with my oldest boy to enjoy a cooking show with him, but what inevitably follows our viewing is a re-enactment. Elijah goes into the kitchen and gets out bowls, spoons, measuring cups, tomatoes, cheese, sugar, whatever his little hands can reach. I will hear, "Ok, y'all, now we want to add one cup of sugar. And a wittle bit of cheese. And there, we will pop it in the oven!" This is all great and cute unless it coincides with dinner-time, when his meal becomes part of his show and his apple sauce is being mixed in with his milk, which has been dumped into his mac & cheese.

The other day I was making something in the kitchen, and E decided he wanted to make something right along with me. So he did his little cooking routine and asked me, "Mom, what show is THIS?" I said, "Hmm, I think it's called the Mommy-Elijah Cooking Show!" He thought that was great, so now every time he "cooks," he tells me that I'm watching the Mommy-Elijah Cooking Show.

Someday we will make that happen! :)

A weekend at home

I'm glad the little boys and I decided to stay in our COOL house and not go to the dropzone this weekend. We missed Dan, of course, but it was nice to be home on a weekend for once. I actually caught up on things like laundry, dishes, cleaning and POTTY TRAINING. The poop still does not at all click. 0% clicking. Aside from that, and those fun messes, Elijah can keep his underpants dry ALL DAY LONG. Even if we run errands and take naps. We'll keep working on the other.

One of our sweaty weekend excursions was the Flying Cloud air show. I have taken Elijah to this air show every year since he was born, so it's a special event for us (or, maybe just me). I got a killer workout pushing the double stroller through bumpy and sometimes muddy terrain. Elijah adored his time in the bouncy maze. So much that we had a little tantrum when it was time to leave. Sam chilled in the stroller, as always, and absorbed it all without a peep.

We visited some friends at Children's this morning. Our little friend Eli had his third OHS last Tuesday by our very own Dr. M. It felt so good to give his mama a huge hug. There's nothing like a heart mama bond. I also think it's good to bring E to the hospital for visits so he knows that hospital time doesn't always equal torture time. He did great with being there! He was actually excited to go (??) and kept asking if we could go back to room four-one-one-zero. I cannot believe he remembers his room number from over a month ago, but more than that I cannot believe he wants to go back.

That's all for now. I hope you all had a great weekend! Here are some photos from the air show on Saturday..

Cardio check

I took Elijah to his cardiology check-up today. He was nothing but cute for three-quarters of the appointment (don't ask about the other quarter of the appointment). When he was getting his echo, he said about a hundred times to the ultrasound tech, "Where's Dr. Moga??" Finally she said, "You want to see Dr. Moga, huh? Let me find him!" She made every effort to find him, but he must have been in surgery because he never showed up. She went to his office, sent him an email, sent a page... That's ok, E was pretty excited about seeing Dr. Gremmels.

We got nothing but good news. We are dropping all medication (woooo!), we don't have to go back for 4 months (woooo!) and E's next heart cath won't take place until next spring (woooo!). In addition to that, his heart function, based on the echo, looked great. His new valve looks much "happier," but his pulmonary arteries are still small. They will always be small, which is the reason why heart caths will unfortunately always be a part of his life.

I showed Dr. G Elijah's bald spot and asked for his thoughts. He thought it looked like ringworm (hmmmm), and thought that because he has so much hair (he had to dig and dig to find it) we just have not seen it until now. Hmmmm....who knows.

I have been wanting so badly to leave a voicemail message for Elijah's pulmonologist ever since surgery. He devised a "plan" for Elijah that would reduce the risk of him having croup post-extubation. This happens to be a doctor that Dan and I (and Elijah) LOVE. Honestly, he is one of the most amazing, caring individuals we have ever known. He has gone above and beyond his call of duty with our boy. His PLAN kept our boy from experiencing croup post-extubation...after open heart surgery! This is something that we didn't think was possible.

But it happened. Our Dr. K pulled through and drew up a plan that basically saved our little boy. I have felt emotional about him since surgery, and just incredibly grateful. I constantly wish I could give him a giant heartfelt squeeze. He didn't have to help us in this way, but he did.

I happen to know one of his nurses, through a sister of a friend of a friend. She gave me his pager number and I knew it was finally time to leave him a message. I thought it would be ok, but it was a bit difficult for me still. "Hi, Dr. Kurachek. This is...Meeeeeggggaaan Poooo------rrrrtaaaa calling. Uhhhhmmm.....Iiiiii am calling to just.....you know, thank you, for, you know, being so....aaaaaa-----wesome, and for caaaaaaaring so much for our son and for....sniff sniff.........devising such an ammmmaaaazzing...wah wah wah....plan for him..." It went on and on and it was a bit embarrassing. I hung up regretful, thinking he would think I was crazy.

Two days later, on my way to the dropzone with my boys, my phone rang.
"Hello?"
"Hi, Mrs. Porta?"
"Uhhh, yes?"
"Hi, this is Dr. Kurachek!"
"Ohhhh. Hi, Dr. Kuracheck!"
He told me that he was grateful for my heartfelt message, but mostly he was calling to make sure I was ok. :) It was a good conversation. He counseled me through some feelings (he is an intensivist, as well as being a pulmonologist, so he sees it all). It was nice to chat with him.
I told him at the end, "Dr. K, we love you and Dr. Gremmels and Dr. Judy and Dr. Moga! Not only are you amazing doctors, you are all amazing human beings." He said, "Wow! Can I put that on my resume? That's the nicest thing that's ever been said about me!"

It's true. Elijah has been blessed in so many ways...one of them being that he has THE BEST doctors looking out for him.

I will sleep peacefully tonight. More about that later....it has been a peaceful, healing week.

Sam, the Walker

My assistant

My boys

Photos, funnies and a walking boy!

First of all, I have to share with you all that SAM IS WALKING! He still falls and stumbles, but he can take 10-12 steps at a time. It is soooo cute, and he is sooo proud of himself when he does it. YAY SAMMY! We are out of tapes for our video camera, but I have it at the top of my to-do list this week. I will record his walking cuteness and share soon!

This is Elijah's angry face. This usually comes out when he is yelling at Sammy, unfortunately.



How could you ever be angry with this sweet boy?



Elijah is still doing wonderfully since surgery. His energy continues to amaze us. I can still only see the one bald patch on the back left side of his head, and I'm praying that is all we will ever see.



E has a cardiology check-up a week from today with Dr. G. He will get an echo to check heart function, and I'm sure we will re-evaluate meds and blood pressure, as well.



Dan has been doing a lot of skydiving, but mostly when people are strapped to his chest. I was able to capture one of his rare solo jump landings the other night.



And here is my favorite photo from last weekend. When I went into our trailer to peek on the boys, this is how I found Elijah sleeping.



I have been keeping a mental list of Elijah funnies that I will try to remember (soon Sammy will be talking and I can add his funnies, too!)..

I have had to start limiting bedtime stories and songs for Elijah because his kiss requests take up so much time. "Mommy, kiss my nose, forehead and hair." I do, and he reciprocates. "Ok, now kiss both cheeks and mine chin." I do and he reciprocates. "Ok, now kiss mine eyebrows, ears and eyewashes." I do and he reciprocates. "I wuf 'oo, Mom. Good night, Mom."

Speaking of bedtime, Elijah has come up with a pretty cute standard prayer that he says every night before bed and that Dan and I add onto when he's finished. It goes, "Dear Jesus, Thank you for this day. Thank you for Mommy, Daddy, Sammy, Elijah. Thank you for Elijah at school and Elijah at Sandy's (daycare). Thank you for cars to drive, food to eat, toys to pway, toys to share." He usually tacks on at least one random thing at the end, like, "Thank you for doors and drawers," or "Thank you for pictures and windows."

He has still been asking for tons of snuggles. He likes to lay his head on the blue pillow on the couch and have me put a blanket over him and then lay next to him and wrap my arms around him. Then he'll say, "Mmmmm, I wuf 'oo, Mama. I wuf 'oo sooooo so much."

That's all I can think of for now...more later!

4th weekend

I just put both boys down to sleep for the night in our "tway-wer." I have major blog work to catch up on while they fall asleep and while Dan finishes jumping. This week has been a bit insane for me. I feel, for about the third time in the past three months, like I have hit my emotional and mental rock bottom. When I found the bald spot on Elijah's head, that sent me to a very dark place. I have never felt so sad and defeated and discouraged before. I spent most of my week sulking and crying. Everything has officially caught up with me. I feel exhausted beyond words. I can feel it in my back, stomach, chest, brain, heart, soul, everywhere. I am tired to the core.

So last night I packed up the boys and headed to the dropzone, our escape place. I love being here. The fresh air and friends and country life does wonders for my spirits, but I don't get great sleep here which I'm sure doesn't entirely help my situation. The good most definitely outweighs the bad.

I noticed yesterday in the car on the way here that Elijah was twirling his hair tightly and repeatedly in his fingers. I have never seen him do this before. Could it be the reason for the hair loss? I suppose. A perfect bald circle, though? Not sure. I am keeping a close eye on it, and praying all will be well. So far I can just see the one bald patch. As my wonderful dad told me on the phone the other night, "Elijah is one of the most beautiful people I've ever known..inside and out..and I will love him no matter what happens to his hair." I love my dad.

Elijah is counting himself to sleep right now...in Spanish! He got bored with counting in English, so now he's onto a new language. He can get up to catorce and gets stuck. Not bad!

Sammy had a great day. He crawled all over the place and drove his Jeep (soooo stinkin' cute) and made about 100 people smile.

Tomorrow we have some great friends stopping by the dropzone for a visit. I can't wait to see them! I pounce on anyone who wants to spend time with us these days! I hope you all have a wonderful and safe 4th weekend! Thank you all for checking in on us. We love you..