Home of the Four Trans

Apparently, I’m not the only one thinking about working and jobs, lately. More on this, soon.

Nathan had a conversation with my sister, Diane, today while I was out with Justin at an OT/PT session. This is the conversation that transpired between them as retold to me by my sister:

N: My mommy washes my clothes everyday.

D: Everyday?

N: Yeah, that’s her job.

D: (in a doubtful tone) Her job?

N: (Nathan picked up on the tone of voice and figured his answer was wrong). No, I mean, Mommy’s job is to take care of Justin.

D: What about you? Mommy takes care of you, too.

N: No. My job is to play.

D: What’s Papa’s job?

N: Papa’s job is to go to work every day (with emphasis on “every”)

D: What’s PeeWee’s job?

N: His job is to go to therapy.

I admit, I had to chew on this a bit.

At first glance, this story that was meant to be funny may actually seem sort of tragic. First of all, Nathan’s responses showed how he obviously picks up on how I am much more attentive toward the second born than him. Second, with Justin going to therapy so often, he actually thinks that that is what Justin’s life is all about. Third, I probably don’t involve him in the house work enough that he thinks it’s all my responsibility!

When I put this conversation into context, I realize what my boy was trying to say. This morning, I was working on folding two loads of laundry. In the meantime, Nathan was attempting to play a solo game of cars. Justin wanted in, but Nathan said no. So Justin, climbed all over his brother, and fighting ensued. In between folding shirts, I was pulling the brothers apart from wrestling. I asked Nathan to help me put away the laundry so that we could finish quicker. I had told him that when we’re finished with the laundry I will be able to watch Justin so that he can play in peace. He didn’t agree, banned Justin from all his cars, and more tackling ensued.

I pulled them apart at one point when Nathan was ontop of Justin (ontop of his pacemaker in his abdomen), and separated them, with Justin in our bedroom with me, and Nathan outside in the hallway. I was upset, and Nathan knew. I had made specific rules about not kicking, punching, or hurting Justin in the abdomen area; he didn’t listen. Nathan started to cry for Papa to play with him. I don’t know what came over him, but 5 minutes later, when I had already finished putting away the laundry minus a few socks and towels, Nathan told me he wanted to help. ARgh!

I think his real job is to drive his mother craaazy! Well, at least once a day. Luckily for us, once we got that morning episode out of the way, we had a lovely day learning about bullfrogs, barking tree frogs, and the red eyed tree frogs. We colored, snacked, ate lunch, had my younger sister, Diane over, and went swimming.

Giving myself a moment to reflect about Nathan’s conversation with Diane allows me to understand my child better, and that, dear Nathan, is also my job.

It’s only now that I speak of Summer as she leaves us for another year. Our time with her had been well spent, without one day or moment wasted. Pool, beach, Legoland, weekly dinner bbq by the pool, Mommy and Me classes, splashing at a water/sand park, impromptu July 4th San Diego vacation, movie in the park, drawing with chalk on the sidewalk, watercolor painting, water balloon throwing, bubble blowing…

Oh, Summer, how we’ll miss thee!

We’ll remember Summer for many things, but most of all, for our first family vacation as a four.

It was tiring, I’ll admit (we packed just about our entire house into the car), but worth every bit. It was with this trip that we embraced the many blessings we’ve been graced with.

Last year, it was San Diego, a drive only one hour from where we live. This year, a bit braver with our little Justin, we ventured with a car to eight hours from our home, traveling through Santa Barbara, San Luis Obispo, Monterey Bay, and San Francisco, cities all within vicinity to hospitals with experienced CHD care.

It is this road trip that I’ll remember Summer fondly by.

My children were both alive and well, wrestling, tackling, and arguing with each other for that matter.

My younger sister came along for the ride. She couldn’t believe how “bad” Justin was; the word she really meant to use was “mischievous.”

He fought with Nathan for toys and Mommy’s attention, mostly. He’s not bad, he just did typical two year old younger sibling stuff.

It was also during this trip when we realized how much Nathan had grown up from the newborn we brought home those few years ago. He’s become quite independent and fearless. Those days of hanging on to Mama’s pant leg are gone.

He explored and touched things without hesitation, whereas before he would sit and observe things to the nth degree, understanding an object’s ins and outs before  even thinking of approaching it. In this photo, he was not only splashing, but throwing water into Loi’s camera, which he got scolded for. But, the picture did turn out pretty cool. His questions, as always, were never-ending (some things don’t change, and I hope this part never does!)

He learned to sit still for a few photos before…

He splashed in the freeeezing cold water of the Pacific Ocean along the 17 mile drive and Carmel Beach, each time venturing further than the last. Luckily, my younger sister was there to run by his side so that I didn’t have to.

Justin became a budding photographer, following after his brother’s footsteps, of course (I should share some of Nathan’s pictures sometime; he has great perspective).

Best of all, as corny as it may sound, we were all together.

Thanks, Diane, for being there and capturing this moment for us.

Summer had been kind. Oh, how I’ll miss thee!

Yes. Everyone.

Even at the Korean restaurant, to the lady who asked us what we’d like to eat, at which he responded, “I’m four,” and splayed all four fingers on his right for her to see.

“Ohhh!,” she replied enthusiastically. “Today is your birthday?”

He nodded his head with sharp certainty.

As if that were not enough, he repeated again, while scooping bits of free frozen yogurt into his mouth, to the lady at the cashier who was tending our change, “I’m four.”

I could tell, by that time, my son felt quite special being four. As an mother adult,  I could not understand the significance of turning four. I mean, four is a pretty big number, and it is another year closer to turning into a kindergardener, and him going off to college, and leaving his Mama…But, it’s not exactly five, you know?

It was not until I saw my little boy climb onto his first big boy bike for the first time when I realized how much my little boy has grown into his own. And, boy, how age four suddenly became so special to this mom. A year ago, when we had contemplated getting Nathan a bike, he was noticeably uncoordinated and too short for any of them. This year, when I watched him climb onto the bike with such ease, and pedal away without any assistance, it was like seeing my boy grow right in front of my eyes. In fact, his preference is to go fast! As far as reasoning with him about hurting himself if he drives too fast? Forget about it. His plan is that as long as he has his helmet and pads on, he’ll be fine. And, so it begins…

This year is also the first year Nathan understands the concept of birthdays, meaning birthday equals presents and special treatment. He requested to go to Disneyland, but not really for Disneyland. He had noticed that both my sister and mom received birthday pins for their birthdays, so he wanted one, too. Afterwards, he wanted to shop for his gift. Then, by 10pm, when it was time to head home, he wanted a treat. He chose a box of jumbo sized, chocolate dipped Mickey ears pretzels that ran along the lines of $16. I said no. He replied in his know-it-all tone with, “It is my birthday.” My sister and I looked at each other with our eyebrows raised and smiled with our mouths open–in disbelief. Luckily for us, Nathan also acted like his grown boy’s age, and agreed to put it back in exchange for a the small Mickey ears pretzels. Four years will give a boy that sense of maturity…ha!

It’s like I knew it was coming, but it came so fast I didn’t know what hit me, until it did. My baby boy grew up. He’s four.

Here’s my advice from one mother to another: cherish your time with your children because they sure grow up fast. I should know. Did I mention I have a four year old, now?

I love you, Baby! Yes, you’ll always be my baby…Love, Mama.

Hi, Family and Friends!

Thanks for checking in. I’ve been neglecting the blog for several reasons, but mainly because I wanted to devote my time to my children and savor every bit of the summer with them while they’re in great health. So, excuse me for the lack of updates.

I’d given Justin a break from medical stuff (i.e.; doctor appointments and tests) for the month so that he could enjoy the things little boys are made of. I enrolled him in a Mommy and Me music class and gym. He especially loves the social aspect of the classes, but also enjoys the core lessons of each of his classes as well. In music class, he loves to sing, dance, learn new hand motions to new songs, create sounds with different instruments, and exercise his tonal understanding. In gym class, he enjoys me rolling him into somersaults, climbing up padded stairs, popping bubbles, whacking balls, and scooting around on his bum.

For those who are wondering, Justin still cannot walk, or crawl for that matter. He spends most of his time scooting on his bum, and has gotten quite efficient at it. However, he has learned to pull up to standing with his one unaffected arm, and cruise around chairs and tables.  He is noticeably eager and willing to walk independently, but that darn right leg is not cooperating. He still shows weakness in his right ankle and foot, thus the lack of stability and support to walk independently. He is able to take steps with my assistance, and tends to take advantage of my help by running as far as he can. Because he is not bearing weight into his right leg, he is not taking quailty steps, and appears to be flying most the time. His physical therapist is recommending a brace, although his orthopeadist (the one who writes the prescription for the brace) does not. I, his mother, see benefit in putting him in a brace even if he may be dependent on it for life because it will allow him independence and opportunity to grow cognitively.

Despite his inability to walk or use two hands/arms equally, he continues to grow cognitively and emotionally. He’s been verbalizing more in addition to using some of his sign language, pointing, grunting, facial expressions, and babbling to communicate. Lately, he’s been doing a pterodactyl type screech to either get attention or when he doesn’t get his way; we have implemented the “time out corner” technique to minimize this. He is quite mischevious these days, and getting quite good at manipulating to get his way. For example, when I put him in the corner this evening for whacking and eye-poking his Papa, he immediately climbed onto me to hug me and rested his head on my shoulder, then chuckled, like he knew he was going to get away with it. When I pulled him away to explain to him why he needed to be in the naughty corner, he immediately crossed his arms and bowed his head, and said “Ah” (a customary way for children to greet their elders in our culture). He knows that when Nathan gets the corner, before he is allowed to move from it, he is required to cross his arms and say sorry for whatever it was that he did wrong; essentially, he was trying to skip all the steps and get to the end.

Upset because he did not want to take a picture!

Sucking on the lollipop that pacified his tantrum. Bad Mom, I know.

Justin has gotten more attached to me, now.  He prefers Mama for everything from putting him to sleep to feeding him his bottle or holding his cup; He’ll cry and scream if Loi tries to help. He is quite independent with feeding himself with a fork or spoon, as well as bringing a cup to his mouth, but since he sees me feed Nathan, he screeches for me to feed him, also. He’s gotten quite competitive with his brother, not allowing his brother any time with Mama.

Justin is a troublemaker. He hits his brother, gets into pantry doors, swipes his brother’s toys, climbs over his Papa and talk during reading time, hang over the arm of the couch only after I tell him ‘no’, and was caught red handed playing with the toilet water (you heard that right. Toilet. Water). This is all new to us because Nathan did none of these things. The worst part is Justin has such a sweet face that he literally can get away with anything. He only needs to bat his long lashes, and flash his sweet smile, and I’d melt. But, so would not be fair to either of them.

Most importantly, Justin is an incredibly happy and friendly little boy. He wants to make friends and be friends with everyone. When we go out, it’s hard to get him to stop staring and smiling at people. He has a technique of getting people’s attention by staring at them, waving, and smiling, even if they’re not looking at him. Of course, eventually they do. During one of our restaurant outings, he reached his hand out from his high chair to touch the people walking by. There were a few times I could not stop him in time.

Justin is just a really sweet kid. When I sneeze (which is quite often when my allergies act up), he says “bleh u”. When it is time to say good-bye, to anyone, he waves and says, “bah, bah,” then does the sign for thank you while saying “thay u”, then blows a kiss. When he has food in his hands or on his table, he insists on sharing by pushing food into my face to eat, or taking crackers out by twos so that he can give one away. It’s hard for me to keep from kissing and hugging him all day long.

A few of his favorite things: Baby Einstein, books, dancing, cars, and music.

He weighs about 21-22 pounds at 24 months, and measures about 31.5 inches long.

Thanks, again, for checking in on us!

There was a time (like, 6 months, ag0) when I wondered if Justin was even there, cognitively, that is.

Lately, he’s been blowing my mind away with his comprehension skills, as if to say, “Mommy, why did you ever doubt me?”

During his physical therapy session, his therapist was playing a game with him while encouraging him to bear weight through his legs, and walk. His PT asked him to find the matching animals, and bring them together. Of the four attempts, he got three right! Lion, elephant, and crocodile. I was sooo excited!

He’s learned to access the main power strip for the entertainment/TV area, and turned it off (because he’s a rebel like that). Later, Nathan wanted to turn on a DVD, but could not figure out how to because all the power was off. I told Justin, who was (dis)organizing our stash of DVDS at the time from across the room to turn on the TV for his brother. Justin slowly lowered himself down to sitting position, scooted over to the entertainment area, and pointed threw the sliver of space the power strip was hidden.

Nathan asked, “In there?”

Justin responded with a smart nod and, “Yeah.”

I was, again, blown away!

He’s been studying a poster board full of his pictures that Loi created for him for his birthday. Today, I asked him to show it to his uncle, whom we call “Boy”. As a test and brain exercise (because I’m sneaky like that), I asked him to point out pictures based on my descriptions. I’d asked questions like, “Where is the picture with Justin and Papa?”, “Where is the picture with Mama? Papa? Brother?”. Then, it got harder: “Where is the picture…

…with Justin swinging?

…with Justin wearing shoes?

…with Justin wearing sunglasses?

…with Happy Birthday (with a birthday cake)?

…with Justin wearing a hat?

…with Justin and the choo-choo train?

He got most of the questions correct. But, what amazed me even more so was the fact that he knew how to call my brother, “Buh!”

After answering a difficult question correctly, he urgently tapped my brother on the shoulder and said, “Buh!, Buh!, Buh!,” to get his attention to show off what he’s learned.

Wow, blown away!

Ok, just one more, and it’s a good one.

The two little boys were playing on the ground. Nathan was trying to finish a peg puzzle (that Justin had gotten for his birthday), and couldn’t find the last piece. I said to Justin, “Justin can you give  Cuh-Cuh (big brother) the fire truck, please?” The piece was somewhere behind Justin, and I didn’t really expect him to a) know which fire engine I was talking about, and b) have the attention span to look for it. But, he knew exactly what I was talking about, and exactly where it was, and brought it straight to his brother!

BLOWN AWAY!

Okay, so he’s 6 months behind, cognitively. But, he was also too tired to even function his first six months of life. The important thing is he’s motivated and bright…and, I’m so proud of him!

We had a speech consultation with a language and speech pathologist this week, and she is recommending him for speech therapy! Yay! Our local regional center needed her recommendation before agreeing to write up a contract for the services for Justin. And, I must say, Justin is a very smart little boy.

August is the month of excessiveness, for my boys, that is.

Depending on who you ask, I can be a pretty simple person. Take a look in my closet, and you’ll see, it’s full of basics–black, white, blue, and grey stretchy tees, tanks, and skinny denim jeans. Look at my face and you’ll see–bare or faded makeup. Have I always been this way? No. Those who knew me pre-mommyhood will testify: I loved my clothes and makeup. Especially the dressy, sexy kind, and always with blush. Yes, I was that kind of girly girl. **Sigh** Anyway, I digress. The point is, I am a simple person. I am.

Ask me what I want in life, and I’ll say–my family. Ask me where I want to live–with my family. Ask me why I wake up every single morning–for my family. Get the picture?

So, if I’m as simple of a person as I say I am, why do I always teeter towards excess every single birthday party? I mean, I know, I spend way too much. It’s almost embarrassing, really, but I can’t help myself. My boys’ birthdays are the days that they were bore into this world, and became the sons of me; before them, I was just, um, me. Every year, I attempt to bargain hunt,  cut down more and more of the amount of money I spend. I realize how many of those less fortunate than us are out there in this world, and I’d prefer to donate our money, than spend so excessively on frivolous things as parties. Still, my children’s lives are reasons to celebrate.

Here are a few of my creative ideas on planning the LEGOS themed party this year:

1. Because their birthdays are only 5 days apart, I’ve decided to do a combined party. To be fair, I have/am celebrating each of their birthdays on their actual birthdays with cake, song, decoration, and gift. Nathan is in school, so I will be providing a snack and goodie bags for his classmates, also, on his day.

2. I’ve decided to make their big birthday cake this year. My estimated cost is about $30-$50 for a cake that serves about 50-80. Not bad, right?  This is the inspiration for the cake I’m planning to make. Wish me luck. I am not artistic, and I am a novice baker. Wish my guests luck, too, because they’ll be eating it

Courtesy of KrazyKakeBakers.

3. My invitations were kept low-key. For Nathan’s classmates, I created the invites on Photoshop, personalized it, and printed it on photo paper for enhanced quality. I ended emailing a lot of people because I waited so last minute to invite our guests (oops, sorry!).

4. I took a designated trip to Target. Because the boys’ birthdays fall around Back-to-School shopping season, I knew I’d be able to find great deals on school supplies such as crayons. Each box of 24 crayons was only .20. That is, twenty cents. Um hmm…awesome deal. I will be giving these away as party favors. Also, toward the end of summer, many of the toys go on sale. Last year, my sister in law found explorer backpacks for only $5 each, with compass, binoculars, whistle, the whole works; this worked well with our Safari theme.

5. Because Nathan had requested for a LEGOS theme, I scoured the internet for ideas for entertainment, games, party favors, and decorations. I collected many of my favorites, and set out to purchase the most economical items I could find to fulfill just some of those ideas. This year, because my party planning began too late into the game, I did not have the option of eBay shopping. So, I went to our LEGOS Store, and found some great deals (i.e.; mini RACERS set for only $3.50; tub of duplos for only $30; Nathan’s race car cake topper that will also double as his present for $8.50) Also, because I am a Legoland passport holder, I received an additional 10% off  my entire purchase. The icing on the cake was this: for every $75 I spent, I received a FREE annual passport to be redeemed by November of 2009; this is for me to give away if I so desire!

6. The party favors will also double as their activity/games tools. I am printing out coloring sheets from the LEGOS website for the children to color with their new crayons. I am holding a mini RACERS building contest (ideally, if the little ones cooperate), then with those RACERS, we will have a race!

7. In the works: making my own pinata. Although, I question whether this is worth it since I don’t know what to stuff it with (not candy).

8. Scattered legos and duplos for kids to free play.

9. Bounce house (not a part of the theme, but always fun)

10. Balloon artist (again, not part of the theme, but fun!)

This is all I’ve got that makes sense so far. I will update after the party.

Here are a few pictures from last year’s SAFARI themed party:

The guests were greeted by the door witha giant lion head made by my sister and friend. We had each guest take a picture with their face peeking through the lion head cut out. We immediately printed these pictures, inserted them into homemade “passports”, and gave it to our guests.

Each child guest was presented with”gear” for their safari. Backpacks were found at Target for $5 each.

We provided a “map” of the activities available to them during the party. We set this “map” at the beginning so everyone could get an idea of what was in the party area.

Pawprints made of ivory paper that I printed for free at our complex’s business center led the way from the entrance to party area.

The “lion’s den” made of cardboard boxes found in the back of furniture stores were a big hit. The inside was decorated with glow in the dark stars and lights. Animal sounds added ambience. Kids loooved it.

Crafty foam animals kept the kids busy as they waited for all the guests to arrive (found at Michaels Craft Store).

The baker did a wonderful job on the cake based on my sister-in-law’s description, and ideas. It flowed with our theme seamlessly.

My most talented neice designed this banner with a trusty printer and cardstock paper.

Our little family on a joyous occasion.

As you can see, there were many details that went into Justin’s 1st birthday party. That first year had a rough beginning, and by the one year mark came around, we had so much to be thankful for. We wanted to invite the world and thank them for supporting us, and at the same time, ensure that they had a great time. I made it a point to have as many personal touches as possible, thus enlisting the help of family. It turned out to be a magical day, with slideshow and all :). This year, of course, will be much more low key.

P.S.–For those who do not know, I belonged to the wedding industry for 9 years before I took on my role as Stay-at-Home Mom full force. My ties to it and its people are still close, thus the access to a large banquet style facility.

Two years ago, Justin made his grand entrance into the world with a giant wail. I’ll never forget the way he immediately became calm when he saw and heard his Mommy for the first time. He was screaming with his nauseated newborn voice while getting measured, weighed, blessed, etc. But, the moment he sensed his Mommy’s body and voice, his wailing stopped. He comfortably settled into my arms, quiet and content. By that time, everyone but my sister, mom, mother-in-law, and Loi were allowed in the room. Everyone else was outside, and was questioning why Justin had suddenly stopped crying. It was because of me.

A few minutes later, we were separated for six hours (the number of hours it took for the stupid epideral to wear off. The epideral that was administered when my baby was already down, and ready to go. The epideral I was pushed to get. Ugh.) before seeing each other again. I remember watching the clock wondering how my baby was doing. I remember my sister bringing me a picture she had taken of Justin as he was pushed down the corridor to  NICU at the Children’s Hospital next door, with his eyes wide open, curious of the world around him. I remember the sadness I felt, even days later, for not yet having seen my child’s eyes opened. The next time I saw my newborn baby, he was surrounded by a respiratory therapist and nurses because he was under respiratory distress as a side effect of the medication that was given to him. At that time, the first time I had to spend with my new baby, he was intubated and connected to tubes, wires, and machines; his eyes were still closed. I remember the tears I shed for the pain my child suffered. I remember singing to him, “You are my sunshine.” I pecked him on the forehead. I rubbed his tiny fingers between mine. All the while, he continued to sleep, comforted by his mother’s warmth, I’m sure.

A few hours after our time together, he was prepared for transfer to Children’s Hospital in LA where his surgery would take place. I remember how he cried in his sleep while the transfer team prepared him for the helicopter ride. He squeezed my finger with his whole golf ball of a hand.

I remained at home in Orange County resting, healing, and pumping while Loi bonded with Justin.

I came up four days later, the day before his first open heart surgery. I held my baby, with his eyes still closed…and, didn’t want to let go. But, I had to. As I looked through the images of the pain my child suffered following his arrival into the world (pictures that are difficult for me to see, and I’m sure will be even more so for you), a feeling of heaviness fell upon me, as it did back then; no child should have such a cruel and cold reception into the world; no child should be away from his mother’s cradling arms for so long.

I did not see his eyes until days after his heart surgery.

Now, two years later, he’s by my side, like a joey to a kangaroo, and I take not one moment for granted. His wails have been replaced by urgent calls of  “Mama! Mama! Mama!” And, those eyes, the ones I had achingly longed to see?  I knew there was something special about them. His neurologist once said, “The eyes are the window to the soul,” and somehow, Justin’s spoke to her. An aunt once commented on how his eyes look straight to your heart. When we go out, he draws people to him with his bright eyes while batting his lashes. Yes, they are special, almost as special as the person who sees with it.

So, how do we celebrate such a life that has touched us so deeply? How do I create a day to express to him how very special he is to us. Because of our (my) fear of what the future holds, I tend to cram the days of our lives with mini celebrations by way of outings and adventures. I pack the days with wrapping my arms around him and kissing him and telling him how special and cute and wonderful and amazing and lovable he is. I cook for him. I let him be, explore, smile, dance, laugh, watch tv, eat ice cream, scoot around with just a diaper and shirt on–because to live life is to celebrate it, right?

Well, on his birthday, I gave to him the only way I knew how–through the labor of my love. I spent 4 hours total on his double layer, 9″, marshmallow fondant chocolate cake (it was my first time ever baking something so fancy hence the hours of labor). I beat, mixed, kneaded, rolled, cut. I spent another hour printing, cutting, gluing, and stringing his personalized birthday sign together. I filled balloons with helium. Whether or not he understood the significance of his day, I wanted him to see the festivities that surround it. Loi helped make his birthday hat, wrapped his present, and most importantly kept the kids away on a special trip to McDonalds for breakfast (so they could play on the playground, also), and a couple of trips around the block so that I could create the “surprise” for Justin. Nathan helped decorate the birthday table with his cars, and was so proud of accomplishing his “mission”.

Although he did not say it, I know Justin understood everything was for him. He was so happy to see his “pat, pat” ( his words for “Little Einstein”) cake, and squealed in delight. While we sang “Happy Birthday” to him, he clapped. At the end of the song, he knew he needed to blow out his candle, and he was successful (after several attempts)!

Opening his one and only present was a hit.

We spent the day at Jumpin’ and Jammin’, an indoor playground facility. Justin spent most of his time in the toddler area, scooting around, watching other kids, and trying to interact with them. He also spent some time with Nathan collecting balls and loading up the shooters.

Loi and I just wanted to spend time with him as a family, with all of us together. As simple as that sounds, being together is a treasure we cherish deeply because our past experiences have proven that we may not always have this luxury.

We ended the day with a birthday bath, and of Justin trying to show us how old he is, now!

I hope my little one knows how much he means to us. Happy Birthday, My Love!

P.S.

Justin was torturing his brother for some of the day, hitting him with cars, and taking apart his LEGOS. I had to put him in a corner at one point. It was his day, but I had to do it. Learning the concept of discipline is a part of living life, yeah?

Thanks for checking in on our little man and allowing him into your lives.

Disneyland (with my mom for her birthday. Millionth time for Nathan, second time for Justin. Many firsts for all.)

Dentist (one cavity for Nathan, a follow up in 3 months for cleaning and check up for both boys. Justin needs to be on meds (maybe) for cleaning).

Orthopedist (still no recommendation for an ankle brace. I’m getting a second opinion)

Cherry Picking (2 hour drive, 10 pounds of cherries, 30 american dollars, priceless experience)

Funeral (so sad, i could barely sleep, she was only 42, survived by a 6 year old son)

The First Last Day of School for Nathan (can’t believe we made it through the year! i am so proud of my firstborn!)

Nathan’s Last Playdate of School Year

Nathan’s First Birthday Pool Party (Nathan played with some of his classmates the kiddie pool because he does not yet know how to swim, his lips turned blue (yikes!) so I pulled him out after 1.5 hours. A few adventurous boys splashed in the main pool, and one almost drowned (YIKES!))

Graduations (a neice from K, and a nephew from 8th. I almost cried at the 8th grade graduation ceremony, but really tried not to. 8th grade is where childhood ends, and adulthood begins, or so I see it. And, time flies! I knew this boy when he could barely speak and still in diapers!)

Pacemaker Check (the usual telephonic thing done every month. It is getting harder to keep Justin quiet and still. He goes for the phone receiver every time, and screams AH! if I don’t let him.)

Movie in the Park (we saw only half of Tale of Despereaux because it started getting cold. But, the experience was quite romantic, even with kids)

Celebrated Father’s Day (Loi worked during the day, but we enjoyed some pool time and a family dinner with my parents and siblings, and opened Father’s Day gifts (cards and favor coupons) from Mommy and Nathan. I didn’t have time to have Justin make anything (bad mommy!)).

Dermatologist Appointment (Justin developed one tiny speck of a mole that I wanted checked out. Nathan has a lot of moles that I wanted checked out. All clear. Dermatologist also noticed how improved Nathan’s eczema is; it is only on his feet and hands.)

Celebrated the Ordination of a Priest (who was also my childhood friend. I asked him to pray for my family and Justin).

Wedding (groom is loi’s cousin, lovely couple, beautiful speech by groom, boys splattered my champagne satin colored dress with milk and orange juice, Justin made an outburst during the speech when all was quiet.)

Out and About at an Outdoor Shopping Mall (Fashion Island, where Nathan fell into the Koi Pond while playing a game of ‘chase the birds’ with another little girl. I had just warned him for the 10th time to stop running around the pond when he rounded a corner and fell in sideways. The pond was only 12 inches deep, but still, so dirty. In retrospect, I should have made him leave, but he had made a friend and I was so proud of his improved social behavior…Nathan is the bookworm type, and Justin is, well, still learning to be more like his brother in that department.)

Therapy Sessions for Justin (he’s made some progress that I will describe in a future post)

We’ve certainly been busy. While things can get stressful at times, I’m happy that I can maintain a sense of normalcy for my boys with all the medical things that go on in their lives. Nathan may not see as many doctors as Justin does, but he certainly is affected by the medical hoo-ha that surrounds Justin’s life–therapy, doctor’s appointments, ER visits. I’ve also been enjoying my time with them. They’ve been growing and doing all sorts of cute stuff.

Here’s one before I leave you:

N: Mom, I will love you for free.

Me: (confused) For free?

N: Yea. I will love you for free.

Me: For free? Aww, thank you, Nathan for loving me for free.

N: Yea. I will love you for free for only one thing. If you let me sleep in Mommy’s bed.

Me: (I knew there was a catch) Thank you for loving me for free. But, you have your own bed.

N: (Smirks)

Nice try buddy!

Thanks for checking up on us!

A not-for-profit organization called California Heart Connection hosts a picnic once a year for the last 9 years as a way to bring together  Southern Californian heart families to exchange practical and inspirational information about their experiences. The founder of this organization has a child with Hypoplastic Left Heart Syndrome.

I am so grateful for her efforts in organizing this event because the event not only allowed the parents to create contacts with one another, but it also allowed the children to interact with others that have had the same experiences as them.

At Justin’s age (22 months), he cannot quite comprehend the trials and challenges that he’s faced, already, in his tiny life. Also, it is true Justin fashion to flash his signature squinty eyed smile and wave, even to strangers; he’s just a happy, go lucky kid. So, I suppose being among other heart kids doesn’t quite faze him at this point in his life. He just wanted to play. For example, while sitting on a floor mat surrounded by miniature cars and airplanes with Nathan, he noticed another child plop down on the mat across from him. He hurriedly scooted over to make friends. Now, the funny/sweet thing about this interaction was the way Justin tried to catch this other boy’s attention. Because he cannot quite produce “real” words, yet, he just sat there cocking his head to one side, and sticking it into the boys face, all the while grunting, “m, m, m,”  to get the boys attention. He also picked up a toy and tried to give it to the boy; sharing is his other method to make friends.

As his mom, it was nice to see him play with other kids his age that stand about his size, and not towering twice over him. It was nice to talk to other parents that inherently understood the underlying worry and issues that come with having a child with CHD, and not have to worry about the other person feeling sorry for you or your kid. It was nice to see that we aren’t alone. 

Nathan also enjoyed his time putting, and running around on the playground.

We met single ventricle women two in their twenties, one of them married, one in her fourties. We met children and adults who had pacemakers. We discussed surgeons and specialists, medications and treatments, insurance and government aid. We (2 other heart moms and I) decided that our children, who are about the same age, will go to Camp Corazon together.

I did not meet one family whose child experienced a stroke, though.

Here are some heart family quirks I recognized at the picnic:

One mom pointed out the chubs in her son’s leg, and was so proud because he had been eating so well while on an appetite stimulant (like me and Justin!).

Another tentative mom discussed a leaky valve that her son has that has gotten worse (like Justin’s had prior to OHS 2), causing his O2 sats to drop, which will require surgery to remedy (Justin’s leak cannot be fixed, but alleviated with medications).

Another mom cried because she felt lost, not knowing what to do with her insurance situation, and finding the best medical care for her daughter (at one point or another, I think heart families agonize over this detail in the grand scheme of CHD).

Parents of a 14 year old boy with a Tetralogy of Fallot diagnosis just discovered the syndrome connected to his heart condition through genetic testing. After years of learning disabilities, speech impediments, and developmental delay, they finally found out why (although Justin’s heart is the greatest concern to his health, it frustrates me that his doctors use his heart as the culprit for many of his ailments). 

I got a glimpse of CHD from the patient’s perspective:

They don’t remember the surgeries they had as kids.

The 14 year old boy with Tetralogy of Fallot had his last surgery at 9, and does not remember anything about it, other than he had the surgery.

A twenty something woman remembers how many procedures she’s had in her lifetime (11), but does not actually remember her surgery.

The don’t resent their parents.

I met a CHD patient in her twenties, who is now a nanny for a CHD boy. She described how sad it is for her to have to hold down the boy when he needs to get a shot. But, she doesn’t remember that her parents had to do the same to her when she was little.

They think, “Whatever, Mom.”

One patient’s mom explained to me how she worries about her daughter riding on a bicycle because she has a pacemaker in her abdomen, and if she were to jam herself against the handlebars, it would not be risky. The patient just waved her hand at her mom as if to say, “Whatever, Mom.”

By the end of the four hour day, the kids were getting restless for their naps. We gave each other hugs, and exchanged phone numbers and email addresses. All in all, it was a fruitful day, I thought. We met some wonderful, inspiring people.

Neurology

The doc said something quite poetic in response to my worry that Justin is cognitively behind: “They say the eyes are the window to the soul. When I look into his eyes, I see [great potential].”

Although poetic, I am not so sure I am convinced with the logic.

Anyway, I cannot quote the end exactly because both Nathan and Justin were a great distraction during the entire consult as they were chasing each other around the cube of an office, fighting over a remote control car controller, that did not have batteries. As usual, I was holding Justin under his armpits as he attempted to catch is brother with his left arm.

The distraction, though, provided the doc an opportunity to observe how Justin interacts with his brother, and his environment. She noticed how alert and motivated he was. His eyes followed his brother throughout the room. Even though he couldn’t walk very well, he was determined to get what he wanted. He was tireless! We were in consult for 1 hour and 15 minutes, and they were at it the entire time!

In her opinion, based on her observations and the area of Justin’s stroke, regardless of what the tests have shown, he is not cognitively affected by the stroke. She is confident in saying that he is able to process the information presented to him even if he is not displaying his understanding. This may be due to his personality, or lack of interest for a learning method. For example, he does not like to focus on books or flashcards. She suggested that we do more social activities with other kids his age or enroll him in daycare so that he could learn from other children, and be exposed to more things in a different setting.

I had some concerns about seizure activity, and described those episodes to her. She said the descriptions do not fit those of seizures, but she referred us out for a 20 minute EEG, anyway. If Justin does have seizures, there is a 50% chance that the EEG will pick it up, so the test itself is not that accurate. I contemplated whether or not the procedure was necessary, and she insisted that we do it just to know.

I inquired about speech therapy, and she encouraged us to have the pediatrician write a prescription for him so that he could have a head start.

Ophthalmology

Justin’s infant teacher had concerns about Justin’s vision since he’s been having trouble pointing out familiar objects in books and on flash cards. It is actually not uncommon for children who’ve had injury to the brain to experience some sort of field cut in their vision. 

The examination (that included prying Justin’s eye open with what I’ll describe as eye prongs while he yelled an screamed) showed the following:

-a bit of astigmatism in the left eye, which is normal for his age. I’ve learned that the eye is one of the last organs to grow in the human body, normally changing shape until about mid twenties.

-he responded to light and objects presented in front of him, and to his peripheries.

The doctor feels, at this time, that Justin’s vision is OK. However, according to him, a formal field cut test cannot be performed until about 7-8 years of age. So, he may have it, but they cannot tell for certain at this time.

I have learned that the field cut test may actually be done at about 3-4 years of age. At this point, I think Justin is seeing enough doctors, so I will not pursue another doctor’s opinion until I see further delay in his ability to recognize objects.

Upon entering, I had handed the doctor a “cheat sheet” that included Justin’s diagnosis and medical history, a roster of  all his doctors, and medications that he’s currently taking (he really appreciated this and told me that he was thoroughly impressed). Referring to that sheet, I asked him how any of his other ailments may affect his vision or eyes. He told me that with cardiac patients, there is a risk of developing broken vessels in the back of the eye (?). He vaguely mentioned this, then said that his vision should be the least of my concern. I told him, “Yeah, it is.” But, it is still a concern that I worry about because it pertains to Justin’s health.

But, onward we go.

UPCOMING EVENTS

Justin and Nathan has dentist and dermatology appointments coming up this month. Stay tuned for that! 

Don’t worry, I let my kids have fun, too. I’m looking into swimming lessons for the kids for the summer. I am also taking a tour of the local early intervention contracted institutions (ICEC) this week to get a feel of their group therapy/parent participation preschool for Justin.