Home of the Four Trans

Justin Update: Justin is eating much better, now. I think he just woke up one day, and decided, “Hmmm….I think I’ll eat more today,” because, now, he’s crunching on Ritz’s crackers, nibbling on table scraps like veges, watermelon, and, today, a fried cheese wonton. He’s also chugging down his milk 3-5 oz every 2-3 hours. He even looks like he’s grown taller, too.

We caught him eating a fry!

Nathan Update: Today is the first day he’s been to school with NO tears. Yay, Nathan! We are so proud of him. It took him only 9 days to adjust. And, there are no signs of resentment, either. He’s gotten into the routine of falling asleep on the ride home, wake up 2 hours later, eat, then play with his fire trucks until I am able to force him out of the house for a walk, or his Papa gets home. Much less chaos, nowadays, as we are settling into our new routine. We still haven’t had a chance to visit a fire station, though they’ve told us to come by any time. After Nathan wakes from his naps, he, like I said, has to be “forced” to go any where.

Jennifer and Loi Update: We’re on a new business venture with some new products we’re really excited about. We will update here with pictures as we get the website up and going. I am working on the occasional weekend or few each month coordinating wedding receptions. We also celebrated our 5 year anniversary on September 5th by going out to dinner at Traditions by Pascals, a French restaurant. The braised duck was yum!

Young married couple

We’re almost afraid to settle in so, but, we are at this rare point in our journey where we’re allowed a bit of a routine in our daily lives.

Our usual day consists of Loi dropping Nathan off at school in the morning, then heading off to work. I manage Justin at home, get him up, fed, and dressed (sometimes, I do meds, but, Loi usually does this, too), and whisk him off to OT and PT in Costa Mesa. Our sessions last for about 1.5 hours. At the end of the session, Justin is loaded into the car seat, fed, then driven off to pick up Nathan from pre-school. We head home for Nathan’s nap, as Justin plays one on one with me. When Nathan wakes up 2 hours later, we all eat a mid afternoon meal. Afterwards, it is more play, and some cleaning until Loi gets home from work. Then, we prepare dinner, eat, and start putting the boys to sleep.

 

 Playing with one of his favorite toys during physical therapy.

Working on some weight bearing. Not liking it too much, can you tell. But, he doesn’t complain.

Mondays are therapy free, and I am enrolling Justin in some Mommy and Me classes (possibly with music involvement, sounds fun!) that begin in October. On Friday mornings, I’m taking him to a local kids’ gym for some socializing, and additional exercising. He needs to keep stimulated, too!

I try to keep Saturday mornings Mommy and Nathan day, although it doesn’t always work out that way. He’s a teenager, remember? Sometimes, he just doesn’t want to go out with his old lady; he’d rather play with his trucks. But, we were able to squeeze in a trip to Dave and Busters for some arcade games a few weeks ago. Otherwise, I build Legos with him, or join in on some usual boy stuff like running around for no apparent reason, hiding, jumping, and crawling around on the ground playing with cars and trucks. Then, there’s the occasional baseball throwing and batting in the house. I can’t wait to have our own yard for this. My hope is to have him involved in a “Playball” program to improve his gross and fine motor skills, as well as to develop some socializing skills. But, we’re still adjusting to the school thing, so we’ll see about this. The program starts in October, also.

“Woah, did you see that, Mommy?”

Riding on the motorcycle.

Cupful of tickets he had earned!

Side view of house built of Duplox. Note the little fire truck at the end. He made sure I took a picture of this.

Garage for Lightning McQueen

Sunday is typically our family day.

Medical stuff is still on my mind, and sometimes sneaks into our schedules. Next week, we have an appointment with the orthopedic surgeon to discuss the possibility of Justin needing a leg brace to help strengthen his ankle and calve muscles affected by the stroke. I still research about stuff. Every. day. I ask questions. I look for new contacts.

At the same time, I try to allow myself and my family to enjoy every day we have together because I know things can change on a dime. Thinking into October, to tell you the truth, is still a little too far for me. I still check on Justin…repeatedly…while he’s sleeping. Yes, we’re still at “that place.” We’re taking it day by day (as exhausting and annoying as it can be sometimes), creating as a fulfilling life for our children and ourselves as possible.

Prayer Request

Reality is, the world will keep moving even when we want to stop. Being afraid of the future or remorseful of the past can only get us nowhere. So, I follow the example of those warriors who continue to fight when they feel they have none left to give, but, do because they can…with prayer and hope.

Here are two inspiring examples:

Little Hearts, Big Miracles: Dave, a father who just lost his 4 month old son to CHD is a true inspiration to me, and exemplifies how we must move forward, even in our darkest times, for our children and our loved ones. Please pray him and his wife, as well as for their little angel, Johnny, and their 2-year old daughter, Jules.

MarekTimes: There is another heart family in Canada who is mustering up all their strength for their little 4 month old boy, Marek, also diagnosed with CHD and heterotaxy, as he struggles with a weak heart and cold. His heart stopped for 4 minutes last night! Pray for healing of his weak heart, and for his parents to have the strength to endure all that they must for their family.

I hope everyone will have a blessed and beautiful weekend!

“The highchair is for playing, Mama.”

We went to see GI on Monday regarding Justin’s eating troubles.

Based on my account of his eating behavior, this is the GI doc’s assessment:

• he may have had a viral infection that made his tummy uncomfortable (hence the occasional throw up)
• he’s teething
• he’s now one years old, so he is beginning to develop his own preferences for different flavors
• he may still have a bit of acid reflux that will not go away completely until he starts walking
• he does not appear dehydrated or malnourished

What the GI recommends:

• try tylenol to see if this will alleviate any teething pains. If this does not work,
• put him on zantac again for the acid reflux
• put him on an appetite stimulant to get him to eat more (to gain weight in preparation for the next surgery in a year or so).
• come back to see her when Justin is 15 months old.

How Justin’s looking:

• cute
• smiley
• happy
• slowly gaining some of his weight back

How we’re handling the situation:

• feed him yogurt (his favorite food) three times a day
• bottle feed him milk every other hour (at 2 oz per feeding)
• expose him to new flavors. Today, we allowed him to try penne pasta cooked in a chicken broth (then pureed).

We know right away when he’ll eat something. I’ll encourage him to “try it” as I place the spoon in front of his face while he shakes his head from side to side. If he refuses to stop shaking his head, then I’ll place a small dab of food on his lip for him to lick. If he likes it, he’ll open his mouth in a big O for more. If he does not like it, he’ll continue shaking his head. A little bratty, no?
In related news, Justin knows how to bite a cookie, now. Before, he’d just suck on it. I was so excited to see a whole chunk of the Gerber Animal Graham Cracker gone when I pulled the cookie out of his mouth. A moment later, I was a little anxious about whether he’d choke on it. But, then remembered that it melts. And, Justin was pretty good at just sucking on it until it melted. Such a good boy!

We’re continuing to check his weight everyday with our digital scale to make sure he doesn’t lose it. We’ll be seeing his pediatrician on the 16th for an official in office weight check.

We appreciate all the prayers! Thank you!

The leaky valve is manageable, improved even. Maybe just the slightest bit, but that ever-present leaky (AV canal) valve is a little better now than it was 6 months ago.

A little better is better than a little worse. So, how much it has improved doesn’t really matter to me. The severity of its leakage is subjective to the observer, anyway. But, if you must know, Justin’s cardiologist labeled it as mild to moderate.

This was the highlight of our routine visit to see Dr. Rebolledo, yesterday, knowing that Justin’s heart is checking out “stable.” Even if it’s not perfect, but it could be stable forever and ever and ever…that would be perfect!

The remainder of our discussions revolved around heart transplants and seeing other specialists for Justin’s “other” heterotaxy issues (i.e.; asplenia, GI tract malformations).

As always, the recommendation stands that living with his own heart for as long as possible is more favorable than receiving a heart transplant. But, this is my cardiologists’ recommendation (though he is not alone on this).

If I were to ask Dr. Leonard Bailey at Loma Linda University, he might say otherwise. Check out this article dated back to 1990 that includes an interview with Dr. Bailey on the issue of infant heart transplant.

I realize heart transplanted children have their risks, especially with having to be on immuno-supressent medications. I found an article that gave me a better view into the life of a heart transplant receipient, also dating back to 1990.

However, my Googling has failed to find me any recent articles on Dr. Bailey and his views on heart transplants. The latest info I found on him was in a back issue of Glamour dating May 2007. There was a feature article on a young woman named Leilah Dowsari who was the second infant at Loma Linda University to successfully receive a heart transplant, but the first female infant ever to survive it. She was 21 when the article was published. She received not only 1, but 3 donor hearts. The first lasted for 14 years, the second only 3 years, and the third is still keeping her alive.

I’ve also read about Nicholas “Eddie” Anguiano, then called Baby Moses, who underwent a heart transplant at Loma Linda University. He was the first male infant to receive a human heart transplant and is, now, also 22.

Remember, these young people underwent a procedure that was incredibly new at the time, back in the 1980’s. And, think, how much technology has changed to better the lives of those who must undergo transplant, now.

These are, of course, not medical reports that I’ve read, but, insight into the world of heart transplantation.

One reason I think Dr. Bailey may not seem so vocal about his views on heart transplantation anymore is 1) he’s getting older, thus having less motivation to put his family and his personal life in jeopardy when presenting this possibly controversial view about transplant 2) the three stage procedure and it’s survival rates has improved dramatically in the past 15 or so years that it may benefit the patient to just live with his own heart (as noted in this medical article about heterotaxy and the Fontan), 3) heart transplantation is such a “norm” now that it does not create enough “buzz” in the media.

Justin’s cardiologist is optimistic that Justin has a survival rate of 15-20 years before we will discuss transplant. That’s a long time. Too long for me to even think about. I’m still trying to hang on to him by the day. And, in 20 years, will his body qualify for a heart transplant with all the blood products he received, scar tissue, being an asplenic…But, hey, 20 years is more than 1, or 2, or 5, or 10…

Anyway, I should know by now that life cannot be planned, predicted, premeditated. Sure, we’ll live our lives each day, making plans on how to live it. But, ultimately, what lies ahead is something we cannot conquer until we get there first (as said with such confidence by a person who’s not there, yet. Ha!)

We’ve come this far, baby, and we’ll keep going.

Justin at his first birthday, um, banquet. Mama really outdid herself.

While I was shoveling spoonfuls of a chopped salad from Corner Bakery into my mouth, I noticed a quiet Justin staring at something behind me. I followed his gaze to a little boy, about one, leaned forward in his stroller. His dad was feeding him with a fork some grains of rice mixed with shreds of chicken. He tap, tap, tapped his sock-wrapped feet on the foot rest. He wanted more.

Justin smiled in amusement.

“Yes, dear,” I thought. “Food is for eating.”

I had spent the past 20 minutes spoon feeding him a 4 oz cup of banana flavored YoBaby yogurt. The fact that he’d even eaten anything at all was enough to make me jump for joy. The fact that he’d eaten the entire cup was even better. I’d been sitting in a cloud of bliss for those few moments following the feeding when I’d caught sight of that little boy.

Then, I realized how behind my kid was.

Guilt followed.

As it began to creep up my throat, aching my cheeks, threatening tears, I turned to Justin to give him some extra loving.

But, here’s the thing: he didn’t have a care in the world. The kid was just bouncing his his stroller, kicking his feet, scrunching his face.

I picked him up anyway, pressed his body close to my chest, and kissed him a million times all over his squishy cheeks.

Guilt subsided.

My kid is happy.

Isn’t that all I ever wanted for my children?

Yes.

So, we filled the weekend with some normal fun kid things:

 Swinging like a big boy!

 Look! No hands…mama’s hands, that is.

I hope you all had a nice, long weekend also.

It’s 3 o’ clock in the afternoon, and I’m just taking my first bite of food all day. It’s Jack in the Box egg rolls, fries, and a chicken fajita pita. Not exactly healthy gourmet, but I’m too hungry to even care.

Justin’s eating issues (yes, they’re back) are wearing me out.

Justin hasn’t been eating for the past week, and it’s gotten worse. Today, he’s nibbled down a total of 5 oz of formula, and I had to practically force feed him half a bowl of cereal. He’s lost half a pound in the past 3 days, according to my digital scale. Every time I bring a bottle to his mouth, he’d shake his head from side to side, keeping his mouth tightly shut.

I spent the past three days trying to make an appointment with GI for him. The earliest at CHOC was in October. After speaking to the nurse, though, they scheduled him in for next Thursday. His failure to thrive is concerning to them. I called Children’s Hospital of Los Angeles. I wanted their doctor’s opinion, also. They called me back today, and scheduled me for an appointment two weeks out.

Just by looking at him, you wouldn’t suspect anything is wrong. He smiles, laughs, does his physical and occupational therapy exercises, rolls around, and overall is just content. I’m sure the reps on the phone and the doctors think I’m crazy, that I’m just looking for trouble.

Truth is, the reason why I’m not freaking out as much is because he’s so content. But, the fact that he’s not eating, and is now losing weight has me very concerned. I’ve learned that when things get bad, they do so very quickly. So, I’m anxious to get him to a doctor to get some tests run to see what’s going on in his little body.

Please pray that he’ll be able to sustain until his appointment with GI next Thursday (that’s a whole week away!), and also that whatever is causing his ailment may be found and fixed.

Thank you!

“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!

Justin had a jam packed schedule on Thursday. Here’s what happened:

8:30AM: He woke up for his feeding, played, took a bath, dressed, and was stuffed into the car seat.

9:30AM: We left the house for the Neurology clinic near CHOC.

10:00AM: We arrived at the clinic. Justin watched some older kids play on a table toy, ogled a smoothie and smacked his lips as he watched the 9 year old girl sipping it.  We engaged in some conversation with the little girl and her mother about Justin’s chubby cheeks and their medical conditions (she has Cerebral Palsy and had experienced 2 episodes of seizures in her lifetime. Scary!). Justin kept smiling and waving his little hand (he’s learned how to wave “hi” now).

10:20AM: We get a spot in the examining room. Justin was weighed (17lbs, 4 oz on a digital scale with clothes, splint, and diaper on) and measured (26.5″). I mentioned that that the measurements at the pediatrician’s was different, but that it’s different wherever he goes. So, close enough, I guess. Either way, he hasn’t grown much.

10:30AM: Neurologist walked in. She asked if anyone was concerned with how small he is for a 12 month old. Well, I’m concerned, but his pediatrician doesn’t seem to be, and he doesn’t see cardiology until September. She said I should maybe talk to GI and a dietician to get him fatter. I told her that I expected him to be small, but I am more concerned that he’s not growing much. Will call GI. She assessed him, and these are the results:

• He seems to be cognitively on par for his age
• His hand seems better improved, but he still needs to continue with therapy
• He needs to see an orthopedic surgeon for his right foot that seems to bend to too far to the right. The surgeon can decide whether to fit him for a brace now or later to keep that ankle in the right position. This will be used only when he’s in therapy learning to walk, or when he starts walking. I’ve discussed this with the therapists before and they thought he was too young. Having a brace on this early may hinder other muscle developments. Neurologist felt it would be more beneficial than not.
• He may or may not regain full function of his right side. She cannot predict this. But, he will definitely be left hand dominant, and his right hand will just be a helper hand.
• She would like for him to get an MRI to confirm the reason for stroke, but because he has a pacemaker in, this is not possible unless the pacemaker technology improves to where it will be able to tolerate the magnetic field.

11:45AM: We left the Neurology clinic to feed Justin in the car. He fell asleep while drinking because he was so tired.

12:00PM: We headed to a nearby Barnes and Noble to kill some time before having to head back to CHOC for physical and occupational therapy. I picked up some books, passion fruit lemonade tea, and a 2 square inch block of rice krispies marshmallow treat. Read a little and had a few moments of me time before heading to the line to pay for our things. While in line, I also impulsively grabbed 3 boxes of assorted Godiva for his therapists because we’ll be leaving them soon (boo!) for another program funded by the California Children’s Services (CCS), which is free. Justin continued to sleep in his stroller.

12:30PM: We left to head back to CHOC for his 2 hour therapy session. Little Boo didn’t even cry once.

3:00PM: I fed him in the car in the parking structure. He tapped the bottle with the plastic bottle cap, amusing himself while he gulped down the bottle…a whole 3 ounces.

3:15PM: While Big Brother Nathan was in the care of “Lifetime” (he was taken to “work”), this allowed us some time to visit Great Grandma (G-Ma) before having to pick him up.

3:30PM: Cried upon seeing G-Ma because he probably thought I was going to pass him over to another person, again. He just wanted some Mommy time. Justin sat in my lap, eyeing G-Ma, smiling, batting his arms, waving his left hand, scrunching up his face into smiles while we talked, then, finally allowed her to hold him. She was thrilled to be holding the little miracle baby. She encouraged me to pray, and to continue to believe. The fact that Justin is here, today, is already a miracle in itself, she reminded me.

4:45PM: We headed out during rush hour to pick up Nathan.

The next post will be about how he coped with this busy schedule!

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.