Here’s a quickie: Nathan found a tambourine somewhere on the ground, and quickly ran with it to find Loi.

N: Papa, where are the wipes?

L: Uh, let me see. Why do you need wipes?

N: Because I have to clean this for Pee Wee so he can play with it.

We have made it a habit to clean every single toy with an antibacterial wipe before allowing Justin to play with it. Nathan is learning as well. Really, though, how sweet and cute is this! He also sanitizes his hands before touching PeeWee (when he’s in a good mood), and gives strangers the evil eye if they crouch in to touch Justin. It may not seem like it, but Nathan is very protective of his brother.

Another quickie: While at the electrophysiologist’s office, Nathan noticed the nurse producing a pulse/ox, and a cuff from the little cart that carries the blood pressure machine. The moment he realized the nurse was putting the cuff on Justin, he looked at me and said in an uncertain tone, “Mommy?” The nurse and I quickly explained to him that she was not going to hurt Justin. I tried my best to tell him what was going on at each step of the way. He was much more relaxed for the rest of the appointment.

Nathan is really growing up.

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’.

Meeting with the ID doc helped clarify my main concern of what to do when Justin develops a fever. We discussed how to get through the ER without having to wait if Justin develops a fever (by announcing that he has NO SPLEEN), what to expect at the ER (blood must be drawn for a blood culture and an antibiotic injection must be given to protect him over the next 17 hours as the culture grows to show if he has an infection). After giving him the antibiotic injection, we would be sent home to wait for the results. If there is an infection, he would need to be admitted to the hospital for treatment.

Of course, the ER is secondary to the doctor’s office. If we’re able to get to the doctor’s office, we should do so first. The same procedure would be done at the doctor’s office.

He urged us not to treat Justin with Tylenol or Motrin to reduce his fevers. Justin’s ability to produce a fever is like a smoke alarm telling us there’s something going on in his body. He does not want us to turn this off with medicine. It is crucial that he is seen right away when he does develop a fever so that the doctor can take the necessary precautions. It is also important to watch how his fevers develop. The fever should always improve, and not spike upward (let’s say from 101-104) in the course of 4 days. If it does, we need to report it to either him or his pediatrician.

I asked if the fever itself could harm Justin. He answered no. There are some children who develop febrile seizures with high fevers, but that does not necessarily damage a child and his brain.

Because Justin is up-to-date with his immunizations (minus the Hib booster and MMR), and is on a prophylactic amoxicillin, he is protected from the main forms of encapsulated bacteria, mainly, pneumococcal, meningcoccal, and influenza. However, not all. Prevnar (vaccine for pneumococcal) protects him from only 5 different strains.

The ID doc made a point to say that 99% of the time asplenic children develop fevers, it will not be a result of an infection. But, for that 1%, we must be careful all of the time. He stresses that once the child has an infection, and we do not take the necessary measures to care for him, he can go downhill very quickly.

This doctor is much more aggressive in his treating method than the other (not ID) doctors that I’ve encountered. As I listened to him, I understood why. During our meeting, he explained that he has been in the business for 17 years, and he’s encountered 2 asplenic children who have contracted an infection…one didn’t make it through. His perspective is that unless a doctor’s experienced how it’s like to treat a child, and watch a child with no spleen fight a bacterial infection…and see one not make it…they will not understand why it is important to be aggressive from the get-go with treating these children.

With that said, he also acknowledged how “intelligent” our pediatrician is, and will understand if he has his own method of treatment. Although the ID doc’s method is “extreme,” according to him, he’d rather be safe than sorry. But, each doctor will have his own opinion.

We also discussed Justin’s immunization schedule which he will dictate and send a copy to our pediatrician. He explained that Justin will be on amoxicillin until he’s 5 years old. Between the ages of 5-17, his immune system will still be weaker than normal, but strong enough to fight off the bacteria, so, he does not recommend the amoxicillin during those years. If he does develop a fever, then we are to take him to the doctors or hospital right away. The course of treatment at that time will depend on how he is from a clinical standpoint, and we’ll discuss further as we approach that point. By around 17-20 years old, we can worry less, though the risks are still there. His body, by that time will be a little stronger (not taking into account his heart condition).

He gave me a copy of his “bible” that he refers to on treating asplenic children (photocopied pages from his reference book) that he told me to give to every single one of Justin’s doctors, and all those who are treating him. He asked me to bring it to the hospital as well.

I am grateful for having met this doctor. He had great compassion and imparted me with more knowledge than I had before meeting him. I hope by sharing it with all of you, you’ll gain a better understanding, and encourage you to ask more questions.

From the beginning, doctor after doctor have shied away from having discussions with us about Justin’s asplenia. I would ask, and they would tell me that it’s not a big deal, essentially. According to them, the immunizations and amoxicillin are enough to protect him.

Perhaps it is part of my nature to always want to know more so that I can prepare. I was on the brink of annoyance with the brush off, but really pushed the issue and was referred over to infectious diseases by Justin’s cardiologist.

Will all this information and fever plan completely shield my child from harm’s way? No. Does it allow me a better understanding of how to care for and protect my child in the best of my ability? Yes.

I’m a mom, and I’m just trying to do my job.

We ended the meeting with the ID doctor telling me this: “The best way to protect your child is to have a good mom. And, you’re a good mom, a terrific mom. Keep him up to date with the immunizations and keep up with the amoxicillin. He’ll be fine.”

I don’t like being called “super mom” or being told how great of a mom I am (because I’m not. Let’s face it, we all have our moments). But, from him, I’ll take that remark as a compliment because it is coming from a medical professional who acknowledges the role of a parent in her child’s care, even if she’s not a doctor. Thanks, Doc.

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.

The boys have been keeping me so busy, I don’t get a chance to update as often as I’d like.

They actually keep me so busy that sometimes I’d rush out of the house with food stains on my clothes, hair in disarray, and shoes that don’t necessarily match my outfit. But, I could care less! Getting out the door is my main goal.

Timing is everything around here. If I don’t get the boys out of the house during that sliver of a window when they’re both in high spirits, then I can just forget about it.

It’s funny because there are days that are better than others. But, when it’s bad, it’s so obvious. I was at the park earlier this week, sitting on the bench with Justin on my lap while watching Nathan climb up a wall of faux rocks. A grandmother of the child Nathan was playing with took one look at me and my mess and commented, “Having two boys must be tough, huh?”

I guess I really looked like crap!

While at a baby shower, I was discussing disciplining techniques with a friend who has a 5 year old boy. I was in dire need of some advice on handling Nathan (more on that in a minute). Another friend overheard our stories about our boys, and asked, “Is [having boys] really that bad?”

I’ll let you be the judge.

While I agree that children’s temperaments vary, I also find through observation and talking with other moms that young boys can be a bit more challenging to discipline.

Boys tend to express themselves through physical action. Girls would talk or cry.

Case in point: We go to Babies R Us to shop for a baby shower gift. He finds a toy as tall as he, and as heavy as his baby brother. The double stroller I was pushing clearly did not have enough room in it for his wanted toy. I told him that we would not be buying it. He retorted with, “Yes. we. are.” Then, proceeded to drag the box throughout the store, backwards, with two arms, for the remainder of our trip. I was so afraid of a meltdown, I called my sister who lives 5 minutes away for some backup. I don’t know how I did it, but I was able to coax him to leave it behind without my sister having to come. In the end, he agreed to come back for it. Phew!

My niece, who is Nathan’s age, on the other hand, could whine for hours about a toy if she didn’t get it, even after leaving the store. With Nathan, things have to be resolved in the store, or he’d walk out with it.
What wears me out the most is that Nathan can also get pretty aggressive.

Case and point: Nathan notices I’m playing a game of peek-a-boo with Justin. But, he wants my attention to himself. He’ll do one of 2 things:

1. Come up from behind me, wrap his arms around my neck, and put all his weight on my back, making me fall over. This is to show me how much he loves me, and to show Justin how much I’m Nathan’s Mommy.
2. Do a run-by attack on Justin: push him down, throw a toy in his face, whack him on the head, jump on him.

Overall, there is a lot of screaming, yelling, and defiant behavior. Everything must be done his way.

His tantrums can stem from something as ridiculous as me allowing him only 2 crackers instead of 3, to something as serious as not wanting to sit down at the table to eat his food. He’ll actually start throwing his food on the ground.

How we discipline him:

1. Warning: We’ll give him to the count of three to do as we ask. If he does not comply, we

2. Send him to his room (we tried the corner, did not work). I hold the door handle to his room from the outside. He yells and screams from inside, trying to get out. After 2 minutes, I come in to ask him if he’s ready to calm down and talk. If not, I continue to leave every 1 minute until he’s willing to calm down.

3. Once he calms down, we ask him to describe what he did wrong. Then, apologize to the person he did wrong to.

Part 2 of this discipling technique is the most grueling because not only I, but the rest of the household must listen to him yell and scream.

Last week, something came over him, and this technique did not work. He yelled and screamed for at least 30 minutes, and Loi was fed up. I deliberately ignored the entire ordeal as I made dinner. My sister’s boyfriend was out in the garage and heard the whole thing. He later told my sister that it must have lasted for 2 hours. That was how bad it was. I eventually had to step in. He calmed down, apologized to Loi, agreed to eat his dinner. We walked away for a few minutes, came back, and this is what we found:

The next day was just as bad, only I didn’t have Loi to fall back on because he was at work. The persistent yelling and screaming had me wanting to pick up and leave to somewhere far away so I wouldn’t have to hear it!

That night, I had had it! He had woken up yelling and screaming at 2AM because he wanted to watch TV. Loi and I gave him a warning to calm down, and go back to sleep. He only screamed louder. So, we just did it; Loi unplugged and removed our only TV from the house.

Soon, IT stopped. He got the message that we were not kidding around. Since then, we’ve had more peaceful nights, better mornings, and calmer temperaments. Still, no TV. And, I think I’ll keep it that way for awhile. There’s always www.hulu.com.

This is not to say we still don’t have moments such as this:

He flooded the restroom by using a plastic Easter basket to pour water out of the tub…repeatedly.

Nathan’s boyish behavior can really send me over the edge on days. I’m lucky to have my brother and sisters nearby to relieve me of some of the boy duties when it gets to be too much for me. All I have to do is call them (thanks, guys!)

I also try to remind myself to breathe because sometimes, I just gotta ride the storm.

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.

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 have also been taking more pictures to accompany my words. Taking a photograph, in the past, to me, takes away from enjoying the very moment in that moment. My mind set was that while peering through life from behind the lens, I lose a sense of what is then and there while struggling to capture the perfect picture.

Something has changed from within me. I’ve come to realize how valuable a picture can be when you’re no longer in that moment. It provides you with a real-live glimpse of your history. I want my boys to know their history. Perhaps, one day, I may want to be reminded of our history.

With love, I pour my soul into these journals accompanied by photographic detail. This is a gift, I hope, that will withstand time and trends (so, maybe I should pick up a journal with archival paper?).

Here, I give you a glimpse of our life in a day this past Sunday:

Nathan plays a little soccer…

…in his very yellow Crocs (that he had picked out on his own, I might add).

We had some frozen yogurt (Chocolate with fruity pebbles and chocolate syrup for Nathan, plain and strawberry tart with strawberries for me)…

then, watched the ducks go by. “Come here, ducks! Come here!,” Nathan would say. When that technique did not work…

…he used a whistle. “This is the last time, OK, Mom?,” he says as I asked him to whistle so that I could get a picture

We visited the pumpkin patch.

We tried to get a family shot (without Loi because he was working), and it turned out just as it should. Nathan was distracted by the fire engine that he did not want to get on. I’m cracking up in the back, and trying to maintain a portrait appropriate smile at the same time.

There is that fire engine, again.

After a bit of hesitation at the top of this huge inflatable slide…

…Nathan took a forced plunge down the slide. Thanks Auntie Diane for pushing him down. Now, that’s tough lovin’. Once he hit the bottom, he quickly got back up, brushed his bum, and ran back up the inflatable stairs.

After the third slide down, he headed over to the jumphouse for some free for all jumpin’. Well, not really free because it cost me $2.

-

All the while, the little Justin sleeps.

After so much excitement, we had some downtime in the teepee. “I don’t like this ride,” Nathan says. “Let’s go.” So, we did.

Before we left, Nathan got to play with the biggest tractor ever.

Then, we said good-bye until next time, and left passing these red tractors lined all in a row that will eagerly await for our return.

He’ll laugh to make me laugh. Then, he’ll ask, “Are you happy, now?” This usually occurs after he realizes that he’s done something to upset me.

A teenager

“Hi, Mom…Can you get that for me, Mom?…I’m sorry, Mom…Right, Mom?” No more Mama or Mommy. It’s just Mom, now. *Tear*

When his Auntie Diane asked him what he wanted for attending his first day at school, he responded, “I want a car so that I can drive to school.”

An architect

His Auntie Lynn gave him a toolbox for Christmas. He loves it, and puts it to good use when helping Loi with his projects in the garage.

A blur

It is almost (almost!) impossible to get a decent picture of him. He’s either making clowning faces or running about.

The time that’s gone by since we brought this OG PeeWee into this world has also been a blur. I can’t believe he’s a preschooler! Going to school!

A tornado

Sometimes, I think there’s no point to cleaning up because in a just a moment, it would be a mess, again. Nathan loves to pull the laundry out of the baskets, throw freshly folded clothes all about, rummage toys out from his room, and scatter it about the floor because it’s fun! He jumps off couches, whirls throughout the rooms, and then will usually land on me…or into me.

A procrastinator

Me: The water’s ready, Nathan. Let’s get in.

N: No, wait. I need to get my cars.

Me: OK, Justin’s ready, he’ll go in first then.

N: No, I want to go in first.

Me: OK, get in, then.

N: But, wait…

He finally gets in. But, when it’s time to come out…”But, waaaiiit. I need to show you something.”

A collector of cars, trains, construction vehicles, firetrucks

My firstborn

My love

My son