Home of the Four Trans

*I haven’t been taking pictures. But, I do have some cute ones I’ll be uploading in the near future.*

Justin Update:

• He’s been able to scooch around on his bum to obtain toys that are just beyond his reach. He’ll also pivot his body in the direction of the toy. Really cute, and exciting because this is another mode of mobility for him that he’s learned!
• He reaches for mine and Loi’s faces with his RIGHT (affected) hand/arm when we’re on the right side of his body. Also, uses it to push on the light switch to turn the light on and off.
• He knows how to stack one block ontop of the other.
• His new game is putting an object in my hand, only to take it away again so that he could put it back in my hand.
• He’s been babbling more and more. No real words, yet, though. But, I’m trying to work on some sign language with him.
• He knows how to make the “all done” hand sign with his left hand.
• He can finger feed very well, and learning how to feed himself with a spoon in therapy.
• He smiles, and smiles, and smiles constantly.
• He’s not gaining too much weight as he doesn’t eat as many calories as he should. But, I’m working on it. I’m trying to find ways to add more calories to his purees. He loves to finger feed himself, but still has not mastered the chewing part, so he ends up with just a huge clump in his mouth that he eventually spits out.
• When I ask him in Vietnamese how old he is, he flicks up his left pointer finger.
• When he hears any of us say a number or count in either English or Vietnamese, he’ll flick his pointer finger up, then bend all his fingers up and down as if trying to count with his fingers.
• He knows how to bow to greet his elderly on command.
• He nods yes, or shakes no.
• He knows how to whine to get his way. Even, starting on the tantrum thing. Fun. Today, he didn’t want to finish half of his yogurt, so he squirmed and did this Eagle like screech and scream to get out. I took him out, put him in the laundry basic to calm him down as he cried. I walked away, he stopped crying. After about 2 minutes, I returned to the basket to tell him that it was time to eat. He willingly sat in the high chair and finished the rest of his yogurt in peace.
• He experienced his first fever at home, and we made it out OK. So scary, though.

Justin’s Doctor’s Appointments:

Electrophysiology: Justin is using his pacemaker 90% of the time, up from 80% of the time from 6 months ago. His electrophysiologist is not too concerned about this because either way, he is using it pretty much all the time, and he still has his own underlying rhythm. If something were to happen to his pacemaker (i.e.; lead breaks), he’ll show symptoms of lethargy and limpness before his heart would completely stop. So, we would have time to call the docs or take him to the hospital (in theory :)).

This stuff seriously is way to complicated for me to even begin to comprehend. What I’d like to know is if being on the pacemaker would eventually make his body completely dependent on it that his own rhythm would go away. Does that even make sense? I’ll ask this at our next check up in 6 months.

Whatever the answer is, I suppose it does not change the fact that Justin needs the pacemaker. All I can do is pray for his heart to miraculously heal so that he doesn’t need it anymore.
Upcoming Events:

Another one of Loi’s cousin’s wedding on Thanksgiving weekend.  Another reason for all of us to get dressed up, again. We already have a mini tux picked out for Justin, and a pin striped suit picked out for Nathan. Yes, my little darlings will be stylin’.

Nathan crafted his artistic pumpkin at a friend’s birthday party. 

I’ve been MIA lately because Nathan’s been sick. He even missed out on his class Halloween celebration (that included him participating in a parade don in costume and everything! Boo hoo.) He caught some virus that caused his fever to go up to 103 degrees, stomach aches, and vomiting. According to his ped, it takes about 3-4 days after he’s contracted the virus for symptoms to show. First thing that came to my mind was JUSTIN!!! Of course, I was worried sick about Nathan, with him being so groggy and miserable and sedentary…so unlike his usual self. But, the thought of Justin having to go back into the hospital made me even sicker…intubation, IV’s, poking, prodding, and who knows what else…you know how it goes.

I hoped and I prayed.

Two days go by, and I thought we were in the clear. Justin had a little cold that he was getting over, but other than that, he was his usual happy self. Then, at 1AM Saturday, out of no where, Justin wakes up vomiting. Not once, but repeatedly. Loi and I were freaked out! I kept him upright, watched a little TV with him, fed him pedialyte and water. Two hours go by, he seemed to calm down with the gagging, and we put him to sleep. We contemplated going to the hospital, but used our best judgment, and decided not to. It was a weekend, in the wee hours of the morning, and while Justin was vomiting, he looked, and acted as usual. He did not seem to be under much distress. We tried to keep him hydrated the best we could until morning.

Justin was being watched and cared for from above.

We made it through Sunday with purely pedialyte, water, and some solids. By Monday, he was back to formula and his usual pureed diet.

Nathan took a little longer to recover. In fact, his temperature went up that Monday night to almost 104, and he continued to complain about his stomach pains. I was worried that it was some sort of bacterial infection. With some rest, and more fluids, by Wednesday he was back to his rambunctious self…you know, the one that causes tornado like destructions throughout the house?

Today, Nathan enjoyed a game of rolling his CARS and Bob the Builder vehicles through “mud”, aka, Playdoe. 

With all the sickness going around, though, they both had a little opportunity to celebrate halloween and went trick-or-treating.

Nathan pointing out where he’d like to go next as Justin hangs onto his Kit Kat and Crunch bar. The Kit Kat was the first candy he received and refused to let go of it. When I asked for it, he brought his hand behind his back with the intention of hiding it from Mama.

Justin as a football player because it was cold out and his dinosaur costume was a little dirty. I don’t think anyone knew what he was supposed to be, but gave him candy anyway because he is so darn cute!

Fireman Nathan enjoyed a few rounds of MarioKart at his Grandma’s house after trick or treating.

Justin at physical therapy dressed as a floppy eared cat with sequined ears…too cute, couldn’t resist!

Justin the Dinosaur. Enough said.

 Until next time, I hope you all enjoy the change in seasons! I certainly am loving the cool, crisp air of Autumn that is now upon us.

I haven’t kept much track of Justin’s age. In fact, I often forget how old my son is (14 months). There are 2 reasons for this:

1. His Size. He’s been growing very slowly compared to other “normal” babies, that his size does not change enough for me to realize how much time has gone by. We’ve had him in this baby stage for a very long time.
2. My Perspective. I don’t count the days, anymore…You know, the days before the weekend, before Christmas, before birthdays, before his next surgery. I take each day as it comes, and pray that that day and our following days are just as beautiful.

While I do not obsess so much over his chronological age, I do take note of his every development. It’s a joy to see how he’s growing physically, cognitively, and socially.

Here are some highlights:

Roller Baby: He doesn’t quite crawl or walk yet (but, we’re working on it), but that doesn’t keep him from getting into things, and moving from place to place. He loves to roll! He’ll roll to the cable box to push the buttons. He’ll roll to his brother to grab a toy away. He’ll off the bed so his Papa could catch him. We call him our Rolley Poley Ollie!

Babbling: He says a lot of ba, ah, ma. Lately, he’s trying to learn how to say Hi and Bye. I think he has the most beautiful sing song voice. Whenever I sing to him, his face lights up, and he responds by babbling in this cute singing voice.

Waving: He can do the side to side wave, or the backwards to himself wave…on command! Yes! He understands. Very exciting.

Fake Crying/Whining: He’s beginning to know how to get what he wants…by crying or whining. The funniest thing is when he whines to get Nathan in trouble. After Nathan pushes him on the ground, or whacks him with a toy, or throws something in his face, he’ll look for me first to make sure that I had seen what had just happened. Once I start to scold at Nathan, then he’ll start crying for extra effect.

Rolling/Creeping towards a toy fire truck.

Stopped to pose for a picture for Mommy.

Unsuspectingly gets whacked in the head with some very hard balls while posing for a picture. I was in the midst of taking a picture of a smiling Justin when Nathan came up from behind. Things can get rough around here.

Head Shaking: When I ask him a question, I’ll ask at the end, Yes? or No? If the answer is Yes, he’ll nod repeatedly with a smile on his face. If the answer is No, he’ll shake his head from side to side repeatedly with a smile on his face. Again, he understands…Very exciting!

Putting toys in the basket: He knows how to do this on command!

Thank you everyone for following Justin’s journey. Though these milestones may seem so boring to some, they are like little joy nuggets to us, and we want to share them with you.

He’s been through 2 open heart surgeries (BT Shunt and Glenn) in his short time on this earth, and twice, he’s passed on us. But, time after time, he’s given this life to live, and we are grateful for every moment that he has with us, growing and thriving.

I realize some are concerned about whether or not he’s there, with his cardiac condition the way it is, and with the damage from the stroke. I cannot say for sure because I do not know…I don’t think anyone does until he gets older. But, what he’s been showing us are great signs.

Please continue to pray for our little miracle baby.

I helped make a dream come true for my little Nathan.

We showed up to the door of our local fire station unannounced (though, I did speak to the Chief about this a few weeks back, and he said to come whenever!) with a box of brownies in our hands.

The firemen were so gracious in not only giving Nathan a tour of all of their 5 vehicles, but also by allowing him to sit in every single one of them. We even left with parting gifts: a plastic junior firefighter hat, and a sticker badge.

What he really wanted to do was drive it.

He’s so small in this dirt engine.

The following week was fireman this and fireman that.

“What is your problem?,” he’d say. What he really meant was, “Do you need help?”

Then, he’d run in with his fire hose aka vacuum attachment to put out the fire or rescue someone or something.

Helping Papa water the plants with his “fire hose”.

Then, he got really creative.

Nathan as Fireman Dinosaur!

This trip was exciting for me as well. It was such an honor to meet these men who serve our city, and protect us from the fires that come rolling through during the Santa Ana Winds season. I actually ran into a few of them while at the market, and they recognized us. They even remembered Justin’s name (Nathan wasn’t with us). I appreciate this sense of community. I hope Nathan and Justin learn to appreciate it as well.

Being able to experience things like this with my child, and see his eyes light up, and his imagination and understanding of the world grow…and knowing that I was a part of it…reminds me that the daily turmoil that is motherhood worth it.

I don’t know where Justin gained his appetite from, but I’m not complaining! He’s putting everything he can get his tiny little hands on into his mouth.

He’s gained a full pound and five ounces in a month and a half. This is awesome considering he’s gained only 5 oz over 3 months not too long ago. I’m proud to say that my roll of chubs is now a full 18 pounds (per pediatrician at a recent check up).

Here is Justin’s feeding progress at a glance:

The last picture on the bottom is actually of him eating a spring roll. His eyes lit up as I sat down next to him with a plate full of freshly made rolls, and he immediately allowed the watermelon to fall from his hands to reach for one. The little nibbler got nothing more than bits of lettuce and rice paper in his mouth, but loved the experience nonetheless.

“Every day is my birthday!”

“It’s OK, Baby. Maw-mee’s heeeeere,” I crooned to him while changing lanes. “We’re almost there.”

We had just exited the freeway on the way to pick up Nathan from Lifetime, and Justin woke up from his nap. What started as a croaky whine turned into a painstakingly loud “aaaahhhhhh.”

Naturally, I freaked. This kid does not cry unless he’s hungry or in pain. Having been fed an hour earlier, I ruled out the hungry thing, and started wondering what was strangling or inflicting pain on my kid back there. The sun? A toy?

We were stopped at a red traffic light. At this point, the smooth, loud “aaaaahhhhhh” turned into choking ah’s, and I had visions of his lips turning a deep purple as he tried to gasp for air in between his screaming.

“Justin! Listen to Mommy. We are almost there! Stop crying. You need to breathe!,” using my stern voice hoping he’d just listen (smart trying to reason with a one year old, right?).

In the midst of doing so, I missed the entrance to the parking lot of Lifetime. Argh.

“Justin, calm down. We’re almost there,” I pleaded to him.

Finally, a few blocks down, I turned into a shopping center. As soon as I parked the car, I jumped out, with the engine still on, to come to my little boy’s rescue.

I opened the back door to sure enough find that his lips had turned a deep purple. His full head of black hair was drenched in sweat.

I’m even more freaked. His heart was working too hard!

“Baby, I’m sorry,” I began as I unbuckled him, “I love you so much.”

He was pissed. He responded by thrusting his body upward, like a little superman trying to break through the chains of his car seat buckles and escalating the tone of his cry.

“OK! OK! I got you, Baby,” I said as I scooped him out and let him free.

I placed him on my shoulder and his entire body melted into mine. Awww.

After 5 minutes of studying the leaves blowing in the wind, and the patrons dining in the outdoor patio of a restaurant, I decided to give putting Justin in the car seat another try.

“Justin, we have to pick up Nathan, OK? That means you need to get in your car seat (I point to the car seat). Is that OK with you?”

The corners of his mouth turned into a frown, and his eyes squeezed together in preparation for more wailing.

“Justin,” I scolded him, “it’s only another 2 minutes.”

He studied the fluttering leaves of a tree completely oblivious to my words…ignoring me.

I had no choice but to put him in…screaming.

As promised, two minutes later, we were in Lifetime’s parking lot, with me pulling him, purple lipped and all, out of the car seat.

“No, Justin. This is not acceptable,” I scolded him. “You cannot cry like this in the car. You need to breathe!”

Smile.

Scrunchy-faced smile.

I’m in trouble. This kid is learning from his brother.

His body glistened against the sunlight peeking through the blinds of our bedroom window. His hair, still damp, matted against his forehead. He laid on his back with his arms waving in complete disharmony as Mommy fawned over him. He is most irresistable after a bath, as he shows of his rolls and battle wounds.

I play a game of peek-a-boo with him. I place a small wash towel over his face and ask, “Where’s Justin? Where’s Justin?” He’ll pull the towel off his face to reveal a little mischievous smile.

For 9 months since he was born, I wondered if he’d ever learn to do anything other than look at me and smile. I wondered if he was there. All he’d ever do was stalk me with his eyes and smile when I caught him looking.

Now, at 12 months, he comprehends how to play a game.

Not only that, but he can also wave on command to “hi” and “bye.”

He cocks his head to the side in curiosity.

He fights with his brother (note the position of his hand in the second picture after Nathan overpowered the book).

He shows expression in his face (and tolerates tummy time much better now with no crying).

I am a mother beaming with pride!

In related news, his right arm is improving, as is his the function of his right hand (both affected by the stroke). In physical therapy sessions, he is learning to get up on all fours and stand with the goal of being able to get around on his own by Christmas (his therapist is a very optimistic person), either by crawling or walking. His right leg seems to be affected also, and is much weaker than is left, so he does not bear weight as well on that leg. But, no biggie. It will improve with time and practice…and possibly a leg brace.

He favors his left hand, and likes to hold things in it–toys, food, clothes.

When he sees someone around him eating, he’ll start smacking his lips together.

When we give him food in his hand, he just looks at it, and continues smacking his lips together. He doesn’t quite understand that the food needs to go into his mouth first.

There is no doubt that he’s behind his peers in his age group. The therapist’s evaluation reads that he has the skills of a 5-9 month old infant…mostly because he cannot use his right side. But, I do not dwell on this. As you can see, he is showing progress, and is such a light to have around. And, he is still around.

Really, what more can a mother ask for?

P.S.–the pics are for you, Megan!

For those who don’t already know, Nathan and Justin both had the same due date, August 15th. Interesting, right? However, Nathan came out naturally on the 13th, and Justin was induced on the 8th. I’ve always wondered if I had allowed Justin to come naturally if both my sons would have the same birth dates.

Anyway, now that their birthday extravaganzas are over, we are back on track with medical issues. On Friday, they both had their scheduled well checks. To minimize the amount of loading into the car and driving to the doctor’s that we would have to do, I decided to schedule both their well checks for the same day.

Here are the results:

Nathan weighed in at 33 pounds and measured at 38 inches tall, placing him at 60th and 64th percentile, respectively. I’m very happy about this since Nathan is known to be a picky, lazy eater.

Of course, Nathan is not Nathan without his usual quirks. Of all things, he was most afraid to get on the scale to be weighed and measured. He backed his butt up against Loi, arching his back, refusing to get on. So, we resorted to the following measures: First, the 5′8 office assistant had to get on the kid-sized scale himself to demonstrate what would be done once Nathan gets on. No harm was done. Yet, Nathan Boy still refused. Second, Loi tried to carry him on, but he’d pull his legs up, just as he did as an infant when we encouraged him to stand. Though Loi was able to get on the scale, with Nathan wiggling all about, no success was made with the weighing. I returned to the examining room to wait for him, knowing my child well enough to realize that you cannot force or coerce him to do anything. He just has to decide for himself if he wants to do it or not. Soon after, he comes running into the office to find me, and agreed to me carrying him on the scale to be weighed. As for his height, he allowed the pediatrician to walk him to the scale, hand in hand, without a single complaint or wriggling, to be measured. Loi and I stayed back at the examining room confused by our son’s moodiness. So, after all that drama, he had one booster shot. And, guess what? He didn’t make one peep…only a scrunchy face. Typical Nathan.

Justin weighed in at 16 lbs 11 oz and measured 27.5 inches. This was all very concerning to me because that means that he only gained 5 oz in 3 months, and barely grew an inch. His weight is no longer following the curve, but is below it. So, basically, he hasn’t gained any weight.

The pediatrician, Loi, and I discussed his feeding habits at home, and about his recent cold, and teething, and they came to the conclusion that his inability(?) to eat, or lack of eating has slowed down his weight gain. I, on the other hand, am worried that it may be something else. In the past, he’s been able to gain at least 1/2 a pound a month. We are going back to fortifying the formula to increase his caloric intake. We are encouraged to feed him a lot of formula, versus spending too much time on eating solids, although he should have both. We were given the OK for feeding him diary and egg products, but still no nuts or seafood. And, for those wondering, he still needs to be on formula since it will provide him with more calories and vitamins than regular cow’s milk. His ability to digest the cow’s milk is another issue we need to look out for. It seems he may be on the (expensive) Good Start formula for another 6 months.

In a month, we are scheduled to return to the peds for a weight check. Argh. Feedings and weight gaining are such big and frustrating issues. However, I hope that it’s nothing involving his GI tract, although I would like to see a GI doc for his opinion on why Justin may be eating less and throwing up more, now.

Anyway, will keep you posted. Thanks for checking in on our little ones.

August 13th marks two milestones in my children’s lives.

First, it is the day of Nathan’s coming into this world. He is my firstborn and represents true love. I never knew I could love anyone so much until I met him. From the moment I held him for the first time after 10 months of incubating him, 12 hours of labor, and 27 minutes of pushing, I knew I had a special boy on my hands. He turned his head to respond to my mom on one side, and my mother in law on the other when they called him. He also gave me eye contact. What kind of newborn who had just undergone the trauma of entering the birth canal does things like that? Mine, apparently. Nathan has never failed to amaze me since then. Upon meeting, most people think he’s 4 or 5, but, he’s now only 3. He knows how to negotiate. For example, I’ll tell him, “If you eat all your food (he is a lazy eater), you can have 5 m&ms.” He’ll respond with, “How about 10 m&ms,” then raise up both hands to show me 10. Nathan is a person you have to experience to understand how amazing he is. Words cannot describe how humorous and intelligent he is. I thought there was not possibly any more room in me to love another child the way I love him. I thought how unfair it would be for our other children (and if we should have any more) because I would not love them the same way.

Then, Justin came into the world and proved me wrong. We’ve jumped through firey hoops with this one, and would do it all again for him. One year ago on August 13th, Justin had his first open heart surgery that sent us all on an emotional rollercoaster ride. Now, a year later, he is a bouncing bundle of joy who just smiles, smiles, smiles.

My plan was to take the boys to the Aquarium of the Pacific in Long Beach to celebrate (they both love watching the fish swim around and around). But, of course, Nathan had one of his 20 minute tantrums because he was “tired”, and did not want to get in the car. Instead, he wanted his milk in a bottle (yes, he’s still on the bottle. He knows how to drink out of a cup, but loves his bottle because it’s comforting), lay on the couch, and watch CARS. I had packed everything into the car, with one remaining item left to load (Nathan), and he threw everything out, including his favorite white blanket and pillow, soiling it in disgusting dirt, germs, and wood chips (from one of Loi’s projects). I put it in the laundry closet. More crying ensued. Meanwhile, Justin was in my arms, staring at his brother like, “What the heck are you doing?.” There were moments when Justin even flapped his arms in excitement, thinking all the rukus was some game. When his brother did not respond to the arm flapping and squealing, he got confused and started to cry. I loaded Justin back in the car in the garage (to keep him away from the noise), and tried to calm Nathan down. I gathered all my patience up, bent down to his level and told him that I knew he was tired, and that I loved him. I gave him a hug, and that (finally) made everything better. By then, it was already 4 o’ clock, Justin was tired, and I was exhausted, so we all took a nap together.

An hour later, I woke up and prepared the house for our family to come over for Nathan’s 3rd celebration (so spoiled!). Loi came home with the food (prime rib and sides. Yum!) and built Nathan’s present (a bite sized CARS computer desk). After a 3 hour nap, Nathan woke up to opening presents from his aunties. After dinner and cake, Nathan received his gift from us that was hidden under a blanket.

We celebrated Justin’s anniversary by saying “Happy Anniversary.” We didn’t want to take this day away from Nathan.

We have had more parties this year than ever, with each of our boys celebrating their birthdays three times. But, I’m not complaining. I’ll take planning a party to planning a surgery any day!

Here’s to a healthy year for both my boys.

Apparently “technology” is not my middle name. I am a little lame when it comes to uploading pictures to our blog, hence the lack of pictures. I’m still trying to figure out how to use the iPhoto application to upload pics in an efficient manner. Uploading each one by one is a little painful. Over 500 digital images are trapped in our camera waiting to be revealed. I will give them a chance, don’t worry.

In the meantime, here’s a quick update in the life of the FourTrans:

-Justin’s teeth are finally coming in! First the right bottom, now the left. So cute! Lucky for us and him he did not experience any symptoms of teething pain. I was just beginning to believe that his smile would be forever gummy (seriously!).

-Justin had his first birthday party with over 150 attendees with a King of the Jungle Safari theme. It was awesome. Justin also had two heart friends there.

-We experienced our first “vacation” together as a family of four at Disneyland and San Diego for 5 days.

-Upon our arrival home, Nathan got sick and experienced some asthmatic symptoms for several days. We gave him inhaler treatments. He still has a runny/stuffy nose, but has improved.

-That week was spent gathering ideas and materials for his CARS themed party, as his party was scheduled to be that coming Sunday. I hit up Target and Michaels for inspiration and returned home with awesome party favors/activities. We ordered a jumper, ice cone machine, cake, and food.

-Friday, 8/8/08 was the opening ceremony of the 2008 Olympics in China, which we all gathered around the TV for. More importantly, we celebrated Justin’s official birthday with a gathering of family, cake, a birthday song, and presents.

-Sunday was Nathan’s turn to party (for his birthday)! It was mayhem, but I think kids like that sort of chaos where they’re allowed to run around and be free. The jump house was the hit of the party. Justin slept through most of it.

I will post pictures when I have more than 10 minutes of free time. The kids like to keep me busy. Boys!