Home of the Four Trans

This picture is a metaphor for how we live life around here–as a balancing act. Love it. Love them.

Here’s a quick update on Justin’s medical stuff.

March 20, 2009: Justin paid a visit to his pediatrician for a routine Synagis injection to help prevent RSV. This was the 10th time he’s received Synagis, as he receives it from November-March during RSV season, every season, and it becomes more and more painful every time…for him and for me! I hugged him a little tighter this time, I think as much for me as it was for him–I’m getting weak from seeing my boy cry from pain and fear so much in his 19 months of life.  The sweetest thing, though, was his pediatrician gave him a tongue depressor as a consolation prize. It’s just a wooden stick, but it made Justin feel better because he stopped crying right after receiving it. It’s the little things, you know?

March 23, 2009: Orthopedist Appointment. No news here. Justin does not have any contractures in his leg/foot or arm/hand. No bracing at this point, and we are to continue with therapy. I expressed my concern about Justin’s slow progress with developing his right side, and the Doc said that he’s doing fine.

“He has a lot of time to learn how to walk,” Doc tells me, “up until 8 years old.” After that point, if the child does not know how to walk, then he/she will never know how to walk.

Interesting, right?

Not so interesting is our insurance drama. The office doesn’t accept our new insurance because it doesn’t pay the docs well. So, we paid 60% out of pocket since the office gave us a discount. I’m beginning to think we should go the HMO route. Argh.

March 25, 2009: ICEC Cognitive Evaluation. The scores aren’t in, yet; But, his teacher said that Justin wasn’t able to perform some tasks, so I assume he’s probably behind for his age group.

That’s all, folks. We have a GI appointment to look forward to next month. I’ll keep you posted.

Brothers geared up and ready for a race!

Justin voluntarily used his right arm and hand, today. He actually understood and was aware of his right arm/hand.

Up until today, Justin refused to use his right hand/arm to do anything, and would often pull it back into a tight L position, bending at the elbows, and his hand would be in drop down position from the wrist or curled into a tight fist . His therapists have told me that while he’s working hard on an activity, he will retreat to these positions because he has less control of the right side which prevents him from relaxing it.

We’ve been working on bilateral play (using two hands to do things), weight bearing, deep massaging, sensory activities, and most recently the brushing technique to help him become more aware of his right arm/hand so that he would know that it exists so that he can use it.

The stroke he had back in January of 2008 damaged an area of the brain that controls his right arm/hand and leg/foot (possibly language/speech, also). It is our hope that, through occupational and physical therapy, he will be able to ‘re-wire’ his brain, and essentially build new synapses or connections to replace those that have been damaged.

The progress has been slow. It has now been 1 year and 2 months since he had experienced the stroke, and there is still little function or use of that right side. He tended to treat the arm like it doesn’t exist. If he did notice it, it was treated like a completely separate object from his body.

In the past two months, Justin has learned to combat crawl using both arms; He’ll appropriately swing his right arm forward to move forward. But, his hand continues to be neglected as he leaves it bent, and will not bear weight through his hands. He’s also learned to bring his hands to mid-line, clap with open left hand hitting fisted right, and sign ‘more’.

However, whenever I ask him to use his right hand/arm to perform an activity, he will often tighten that right side up. He would sometimes refuse, pulling that arm away. Whenever he does an activity on his own, he will ignore the right, and find other ways to perform the activity with his remaining limbs (left hand/arm, right and left leg/foot). He’s actually learned to perform some activities with just his left hand and left foot, like pressing buttons with his left hand, and on the same toy, spin an object with his right left foot. His therapists have commented on how smart he is for being able to compensate for what he doesn’t know he has.

Well, given our history with him, can you imagine the glee that filled my stomach when Justin actually repeatedly followed my direction to place his right hand on the steering wheel of his car?

I would place his right hand on the steering wheel, and tell him, “The right hand has to help you drive the car.” When he dropped that arm down, I would stop the car, and repeat this action. I’ve tried this technique over and over, again, and his arm/hand would just tighten into an L position so much that I could not even stretch his arm to reach the steering wheel.

Today, his right arm and hand were looser than usual, enabling me to better pull his arm to reach, and open his fingers to place it around the wheel. After two tries, whenever I reminded him where his arm/hand should be, he actually started placing his hand/arm in the correct position when it fell off (his grasp is still not very strong)…on his own! There were several times when I didn’t even have to remind him, and he did it. So very exciting.

He did so well that I took him out for a car ride two times, today, already. The second time around, he was also able to follow direction.

There is no way to prove this, but I must attribute some of this success to the brushing technique. We started this on Wednesday, and already, I see the difference in the tone and awareness of his right arm/hand. With the brushing technique, I also perform joint compressions immediately after, with deep massaging to finish it off.

He hasn’t done much weight bearing through his arms this week, and missed two of three days of therapy because he was sick. Prior to last week, he did not have therapy for 3 weeks, and did minimal weight bearing at home (again, sick Nathan and Justin). This is not to say that I do not think that the therapy sessions have not contributed to his awareness, but that I think the brushing technique has brought it to another level.

Another exciting update: Yesterday, Justin got up by himself (unassisted), repeatedly, from supine (on back) to sitting. He was able to do the same on his right several times!

His most recent developments encouraged me to start a journal that I wish I had thought of doing before. I’ve been taking notes on techniques, and journaling on his most major developments, but, I haven’t dedicated a journal to therapy. My hope is by doing so I will better communicate with his therapists about his developments, and allow me to organize my observations and his progress.

Yay, Justin!

Before leaving for the ER (Image provided by Photographer Nathan)

Justin doesn’t have a spleen. This means that any sign of infection, especially a fever, must be given immediate medical attention. Our infectious diseases doctor advised that we have him sent out for a blood culture and have Ceftriaxone (strong antibiotic) injected to protect him for the next 72 hours if he is in fact septic.

The 101 degree fever Justin had would not have been as alarming to a ‘normal’ kid’s parent. For these ‘normal’ kids, it would involve a call to the pediatrician, motrin or tylenol, and some wait and see. For asplenic Justin, a fever cannot be taken lightly. If there was a bacterial infection in his blood, it could become fatal very quickly if not treated in a timely manner.

Because it was 6:30PM by the time I had taken his temperature, and his pediatrician’s office was closed, our only choice was to take him to the ER for the standard procedures: blood culture and cetrifioxone.

I absolutely abhor the ER experience. The waiting rooms are full of sickies, and there is a tremendous amount of waiting involved. When I registered Justin in, I made it be known that Justin does not have a spleen and he had a fever. The nurse said she’d let the people in the back know.

I watched the clock. It was 8:10PM by the time I finished filling out the paperwork.

There was not a single, safe corner in the entire waiting room that I was able to hide to shield Justin from the coughies. I held him against my chest. I tried to convince him to wear a face mask. He just held on tightly to his toy cow and looked suspicious of his surroundings.

I allowed 15 minutes to go by before I approached the front desk, again. Every minute we were there in that waiting room, Justin was exposed to more germs and risk of infection. I reiterated that Justin does not have a spleen and asked if there was another space we could go to to wait if a room was not ready.

The nurse took us in 2 minutes later. She took Justin’s vitals, asked about his medications, and symptoms. He was weighed. 8.5kg. Justin cried the entire time while looking straight in my eyes, probably wondering why I was allowing strangers to touch him in such a violating way.

Then, more waiting. This time, we were in the hallway of the Emergency Room, where there was less foot traffic and people.

Justin seemed to cheer up a bit as he played with a car we found in my purse…until, he vomitted…through his mouth and nose. All over my black sweater and dark jeans. I kept him upright against my chest and patted his back as he screamed in horror.

Justin had just dozed off to sleep with his head pressed against my chest when a room was finally available to us.

They brought us in and hooked Justin up to monitors, which, of course, caused Justin to wake and scream. Poor thing. By this time, it was already 9:15PM, and all he wanted to do was sleep.

Questions about his medical history and symptoms ensued, including a time line of his doctor’s visits in the past month. The ER pediatrician explained the possible reasons for his vomiting and fever (urinary infection and stomach virus), ordered a urinary analysis, abdominal x-ray, blood culture, CBC, and CRP. He would also have an IV for a fluid drip since he looked dehydrated to her. Then, more waiting…for the orders to be filled, and results. Everything came back negative.

He was given Rocephin, an antibiotic, through the IV, anyway, just to cover the bases since we did not know the results of the blood culture.

It was 11:30PM before we were discharged.

When Justin was placed in his car seat, though, he was a completely different kid. He smiled, and the liveliness in his eyes came back. He started kicking his legs in excitement. While in the hospital, he was anxiety ridden, cried at a single touch of any stranger, and stared suspiciously at anyone who entered the room.

By the time we had gotten home, it was 12 AM, and Justin was wide awake. He was just glad to be home. And, so were we. What a day!

This is what Justin was doing at 12:30AM:

Justin Self Made Video

Never a dull day, that’s what we say here in our household.

Nothing could have prepared us for the ER visit we had in the evening; Especially since the day had gone relatively smoothly.

Nathan had actually gotten up earlier than usual, and was able to arrive at school 15 minutes prior to starting time. He was dressed in a green striped shirt with dark blue denim and wore his white Pumas that had a hint of green on it. This is the best he’s been dressed in awhile. On a usual day, he wears one of his many CARS shirts.

Loi and I had prepared a tray of sugar free, vegan, carob chip cookies for his St. Patrick’s Day class party.

When I picked him up at noon, he was carrying his bowl of cookies smeared with white frosting and green sprinkles (So much for sugar free) against his chest, announcing as I walked through the door that “one is for Mommy, one is for Papa, and one is for Nathan.” Note: None for Peewee because he’s “too little to eat cookies”. Nathan, too, was decorated: shiny, green shamrock sticker on the corner of his right cheek with matching construction paper and black yarn necklace.

Justin and I had spent the morning playing because he did not have therapy. It was, then, Day 3 of not-so-hot eating, and he was still vomiting 1-2 times a day, going on week 3. Though he was more clingy than usual, he was smiling, happy, and energetic.

I drove Justin to pick Nathan up at noon. Per Nathan’s request, we headed near Loi’s work for lunch at Corner Bakery. Justin watched the small brown-feathered birds peck at our crumbs on the ground as we all chowed down our lunch. He waved and bounced when the birds flapped their wings to fly away. He would switch his attention to the three tiered, two story fountain flowing just a few feet away. Nathan spoke of leprechauns leaving notes in his classroom, and how he was not able to catch it as he scooped spoonfuls of homemade seashell pasta and cheese into his mouth.

The day was a perfect sunny 76 degrees, with a slight breeze.

We only headed home because Nathan was getting tired, and I did not want to risk a melt down.

On the ride home, Nathan fell asleep. Justin was wide awake. After carrying Nathan to his bed for his afternoon nap, I came back out to our attached garage to carry Justin into the house. Only, Justin had other plans; He wanted to ride his cars. He whined, pointed, and leaned his entire body toward the direction of the cars until I placed him inside his red buggy.

After helping me apply sunblock to his skin, we worked on some bilateral play as I placed both of his hands on the wheel while I steered him around the front of the garage. He looooved it. Even made some car noises as we ‘drove’ around.

After 20 minutes of play, Justin came in for a bottle, played for a little longer, and napped. When he woke up, I noticed he was warmer than usual, and took his temperature. 101 degrees. It was 6:30PM by then, and the pediatrician’s office was closed. I knew our only choice was the ER, and I hated this option.

“Great,” I thought, “here we go, again.”

I called Auntie Diane over to take Nathan out for dinner at Chik-fil-A because it was free kids’ night. Based on Auntie Diane’s report, Nathan had a blast.

Here are a few tidbits:

Scene 1

N: “Yi Diane, I like hanging out with you.”

D: “I like hanging out with you, too.”

N: “And, Justin, too, right? Because we’re you’re…(paused to think)…Your sons?”

D: (laughs) “You’re my nephews.”

N: (laughs because the term nephew was funny to him)

Scene 2:

It was 9PM and Nathan wanted ice cream for dessert. Auntie Diane was hesitant because she knew Mommy and Papa would not be happy about it. Nathan’s response: “But, you don’t have to tell them, right?” Of course, Auntie Diane said that she would. And, he got the ice cream. Nathan is trying to understand the idea of lying. At this point, he’s still telling us everything, even when he knows he’s done something wrong.

Scene 3:

At Chik-fil-A

Nathan Update: I guess it wasn’t a stomach bug, but something else. He got over it in a day. We allowed him to stay home from school, though, just to be sure. He missed his play date with his BFF, Austin, but enjoyed his time with Mommy, for sure! He never gets sick of me…except when he doesn’t like me.

Justin had therapy, today..

Loi made us yummy Eggs Benedict. So fattening, but so delicioso!

Justin met with his infant stimulation teacher. He’s learning to match colors, shapes, and things. Doesn’t quite get it, yet because he’s too busy playing with the car that teacher brought along. He also learned body parts, although he knows some of it in Vietnamese, but not English (head, feet, hands). He’s learning animal sounds. His favorite are “mmmm” (cow), “baaa” (sheep), and kissing noises (fish).

Justin’s teacher noted how “generous” Justin is because he’s always sharing his toys. This is true. He likes to share with another person whatever he has in his hand. If there are multiple people, he makes sure that each person gets something. Whenever Justin’s teacher gives him two toys, he makes sure to give one to me and one to her. That leaves him with none! So cute.

Nathan likes to join in the fun, too. While the teacher was explaining the idea of stacking and why kids do it, she mentioned Legos and blocks. Nathan went to fetch his cart of blocks, and pulled it over to her for Justin. So cute! (BTW: kids like to stack things, and put things away as a way to put order to their environment. This usually follows their messy play stage, where things are taken out and are everywhere!)

I made a sweet gingery tofu. And, another concoction that involved tomato paste, mushrooms, onions, celery, ground turkey meat, heavy whipping cream, and herbs. There is no name for it, but it is yummy with rice.

The highlight of the day was taking Nathan to the library to get his first library card. It was 7pm by the time we finished dinner, but it didn’t matter. Nathan was so excited as he talked about it all day. I had made plans for this to be our adventure of the day.

We walked in, headed straight for the desk. I filled out some forms, my info was entered into the computer, and voila! Nathan was given his first library card. While I was printing his name on the back of the card, Nathan pulled out his Lightening McQueen wallet so that he could put the card in when I was done. His chin reached exactly on top of the counter. He was like a little man.

Once we were done, we headed upstairs to the Children’s section where he proceeded to find the cars-related book he had checked out the last time we were there. I couldn’t remember the title. In the process of looking, he found 3 other books that we ended up checking out. All had pictures of cars on their covers.

We read through 2 of the 3 books while Justin made ga ga eyes at another girl teen across the table from us. I followed his gaze to find that she was smiling and waving back. Such a flirt! I said it was time to leave when Justin got fidgety (after all, it was his bed time, and I was taking them out! Bad Mama! Oh, well. It’s all about the experience. Who knows what tomorrow will bring.).

Nathan couldn’t wait to show his Papa his new books and card. He even had a plan on how he would present all his new findings to his Papa.

“First, I’m going to take one book, put it behind my back, then I will say, ‘Surprise,’ and show Papa. Then, I’m going to go back to the car, get the other book, and put it behind my back, and surprise Papa….”

He’s very methodical.

Anyway, love my time with my boys as always.

This post is about Justin’s therapy services.

Justin has started at a new therapy unit closer to our house this week. He’ll be receiving 30 minute sessions of each occupational and physical therapy, 3 times a week. This therapy we’re receiving is through California Children’s Services (CCS), a government funded program, which means we don’t have to pay a cent out of pocket (unless you count the taxes that are pulled from Loi’s pay check every month, and the taxes that we have to pay at the end of the year).

Justin is eligible for these services until he is 21 years of age, since he has a chronic heart condition, suffered a stroke, and had multiple surgeries (hence extensive hospital stays) that put him at risk for developmental delays. The occupational and physical therapy provided by CCS are available to Justin so that he can take advantage of the services that will allow him to grow into an independent human being, self reliant.

Sounds great, right? No money out of pocket, “free” services, achieving independence. Well, there’s a catch. These services provided by CCS have strict guidelines about the goals they can set for Justin.

Here’s what I have issue with:

First, a little bit about Justin’s medical history. Justin is developmentally delayed, overall, compared to other children his age group. The main reason for this is he suffered a stroke that affected the left side of his brain, that controls the right side of his body. Because of the impairment of the signals that are sent to that area of the brain and back, he does not have full awareness of his right arm, hand, or leg. He is limited in how and if he can move those areas of the body. Most of time, he neglects to use his right side because he has learned to compensate by using only the left side of his body.

In addition, the evaluations done by a CCS occupational therapist show that he has lost sensation in certain areas of his arm, which makes it difficult for him to even register that he has that other arm to use; he cannot even feel certain parts of his arm. The evaluations done by both CCS occupational and physical therapist also show that his leg is weak; he does bear or shift weight on his right leg.

Because he cannot or does not use the right side of his body, he is delayed in achieving the appropriate gross and fine motor skills other children his age can do (i.e.; walk, crawl, bilateral work).

My problem is this: CCS guidelines for setting goals are based on achieving self care, even if it means just using one side of his body. The entire reason we started therapy was to improve the right side that was affected, help him regain the function and awareness. Along the way, we were hoping to develop his gross and fine motor skills, as well. But, because their goals do not address his right side at all (I mean, at all! I’ve read the evaluations, and discussed it with his therapists numerous times), the therapists can quantify that’s he’s passed a goal even if he’s not using the right side to assist with a task (eating, undressing, getting up or down).

I recently learned from the new occupational therapist that CCS guidelines does not allow them to set “sensory integration goals”. I had asked if she could do more sensory exercises with Justin since the latest assessment does show that he has sensory loss in his arm. She told me that she had the tools such as vibrating toys and a swing that they could use, but she is not allowed to write sensory integration goals. And, they would not work on sensory activities unless it affects Justin being able to reach the self-care goals.

I had been with the other CCS therapy unit for 6 months, and time after time, I had requested that they work on his sensory, helping him rebuild his right side awareness because I did not understand how he could pass his goals if he did not. They assured me from the first time that I raised issue with this that through weight bearing, splint wearing, and constant hand over hand assisting would help him become more aware of his right side. Everything they said was true based on my talking with other therapists and his neurologist.

However, I also know that gaining sensation, the ability to feel, back to the body is another task in itself. And, it is important that he does. Relearning hand function is also another feat in itself, and requires special attention and techniques. At CHOC, there is a hand specialist.

My biggest issue is that this strategy of setting goals will not allow Justin to grow to his full potential. He is not given enough opportunity to build his right side of the body.

So, what am I going to do about it? As I always do, continue asking questions and learning.

I may sound like a broken record, sometimes, but I continue to ask the same questions over and over. As I do, I learn something new, every time that leads me somewhere to find/provide better care for Justin.

For example, I address Justin’s sensation and bilateral work concerns with his infant stimulation teacher (whom he meets with once a week). She offered me information on the brushing technique, to improve sensation and circulation.  She showed him how to play with playdough, paper, and other toys that would encourage him to use his right hand. Since then, he’s learned how to voluntarily open and release his right hand, though not consistently.

I’ve asked his therapists to show me different stretches to work with him to improve the tone in his arm and leg. I ask him how and why those stretches and excerices work to make sure I understand why I do the things I do for him.

Even if the standards and guidelines may prevent them from addressing his right side, I still ask his therapists of the different techinques I can use to improve his hand and leg function, so that I can do it with Justin at home.

What I  really want to do is to return to CHOC for his occupational therapy services to gain new ideas and techniques on improving sensation and function on his right side, and to improve his ability to work bilaterally with his hands.

Our insurance only covers a limited number of therapy sessions per year for Justin. Each 50 minute therapy session at CHOC ranges from $500-$700. Regional Center of Orange County (RCOC), another government funded program, will not take on Justin’s case for physcial/occupational therapy, although CHOC is one of their therapy units. The case manager at RCOC said that Justin is more of a CCS candidate because he has the stroke history (but, he has the heart history, too!!!). I’m thinking I could appeal this, but I’m wondering if I should since Justin could only receive services from them until 3 years of age, anyway. Is it worth the trouble?

The other concern with putting Justin through more therapy is it takes away from his normal life. It is not just the time that he is in therapy, but I must also account for the time that he’s strapped in the carseat while I’m driving, there and back. He spends much of his day in a high chair eating, also. Then, there’s the doctor’s appointments with his 8 specialists, pacemaker check once a month… So, I have to find time for him to be just a regular, little kid.

Where’s the balance?

OK, where am I going with this? I am peeved about the CCS guidelines, as they have not always been this way (budget cuts?). Not only that, but at the fact that I’m fending for myself and my kid. The services are free (sort of. We pay taxes!); Either, I take it or leave.

My kid has been through a lot, continues to go through a lot, we pay taxes (lots of it), I work with my kid on the techniques at home, I have to find ways to get my kid in the system because our income doesn’t qualify enough for various government programs. We don’t make enough (correction: we are not bajillionaires) to pay everything out of pocket. We are limited with what our insurance covers.

So, where does this leave us (me)? Frustrated and tired. I just want to freakin’ love my baby, and not have to fight all the time.

I’m sorry to sound like I’m complaining. But, this is a sad fact with raising a child with special needs in this country, if you’re middle class. Having Justin is the only reason why I’d ever want to be a Bajillionaire (and, nope, I don’t think being a millionaire is enough). This is only a glimpse of the financial burden that we carry for Justin’s medical care. To have the best of the best of the best care for my kid, I need to be a Bajillionaire.

Here’s where I won’t complain: I wouldn’t trade my Justin for anything in this world. Period.

Now, any advice/experiences that you’d like to share? I certainly need it.

Update on the boys’ health: Justin is recovering, I think. But, he’s still vomitting once to twice a day. His bowel movements are better…no diarrhia (sorry if TMI). This may be due to a stomach bug, according to his pediatrician. Nathan, on the other hand, no doubt has a stomach bug, poor thing. He’s been complaining of an ‘owie tummy’ since 2 days ago, and today he started vomitting. He also can’t eat or drink anything, poor thing! He’s been on the couch sleeping in between his vomitting since he got home from school. Boo hoo.

The hard part is trying to keep Justin from getting infected. Justin is everywhere, now. He’s getting pretty good at his combat crawling (using both arms, I might add), and is more efficient in getting from one place to the next. His favorite thing to do nowadays is picking teeny tiny stuff off the floor and putting it in his mouth…um, germs. His second most favorite thing to do is slide open and close the pantry door to inspect the inside contents, then pulling it all out…on the kitchen floor where there is a lot of foot traffic. The days of plopping him in one spot to play is over! He loves rolling and combat crawling all over the floors and getting into things. Every mother’s dream and nightmare at the same time!

I went on a disinfecting spree, today, and am trying to contain Nathan to one area, the couch. I usually establish a quarantine area, his room, but he refused to move from the couch. And, he looked so sad and sick, so I didn’t force him. Tomorrow may be a different story.

It’s taken me a few days to update on our cardiology appointment because I’ve needed a little while to reflect.

We’ll start with the GOOD news. Justin’s leaky AV canal shows less regurgitation than a year ago, post bi-directional Glenn. His cardiologist labels it as mild to moderate (remember, this is subjective to the observer. The point is it has improved from moderate-severe.) His oxygen, or saturation levels, were at 85-90 percent. Although normal kids run at 100 percent, this is high for Justin. His blood pressure was low, with the systolic at 69, and 73, depending on the left or right leg. But, the mean was normal. The cardiologist was not concerned about this because the leg does not always give accurate readings. And, I assume his lack of worry is also due to  everything else looking decent. The medications that he is required to take for his heart, Lasix and Captopril, are at the same dosage. He will also continue on baby aspirin and amoxicillin. The other highlight of the day was to see Justin measure in at over 30 inches. 6 months ago, he was at about 27 inches.

Now, the BAD news. Justin is not gaining weight particularly well. He measured in at 3oz less than he did 6 months ago. He is completely off the charts, and even off his own curve. I also noted that Justin lost about 1.5-2 pounds due to his recent illness. That is A LOT of weight for someone so small. Cardiologist suggested we meet with GI clinic to see if he could get a milk drip at night to increase his caloric intake. Justin needs to be at about 13 kilogram, or 28.6 pounds, to be eligible for the next open heart surgery, the Fontan. He officially weighs at a mere 17 pounds, 3 oz. Unsure of when the Fontan is normally performed, I asked the cardiologist at what age. The answer: 3-4 years. I was actually surprised to hear this, as I thought it was more like 2-3 years of age, based on the post-Fontan blogs that I follow. This gives us a little more time to help Justin gain weight (well, hypothetically, anyway.).

OK, are you ready for the UGLY? I call this the UGLY segment because it just is on many levels. The discussion that I am about to discuss with you left me quite blue for 2 days, and I had to ask myself if how I was feeling was how depression feels like. I’ve never gotten to this point. And, I was quite disappointed in myself. I’m OK, now, but I really had to pull myself out of it to function for my kids.

Ever since Justin’s last cath/pacemaker/surgery/stroke ordeal, I’ve been left quesy with this neverending question of why. Notsomuch as in, Why did this happen to me or my child? But, more like, Why did the series of events occur as they did. The cardiologist’s answer is we will never know why. The important thing is that he is safe, now, with the pacemaker, and we’re doing the best we can through therapy to help him regain his abilities damaged by the stroke. What happened to Justin was very unusual, something that no one could have prepared me for. Cardiologist said that children with heart anomalies like Justin’s are expected to have complications that may lead to a pacemaker dependency or stroke–sometime down the years of their lives. But, never could he have predicted that Justin would be devasted by both before the age of 2 (but, really, it was 1 year old. Justin was only 5 months old). As a cardiologist, he’s seen a lot, and for him, Justin is unusual.

I’ve come to accept the IS  in our life, in Justin’s life. I do not retrace my steps to the past because I cannot let go of what has happened. I have dealt with it. I see the smile on Justin’s face, and I think, “He’s happy. That’s all I ever wanted for my child. And, that’s all that matters.” I take Justin to therapy 3 times a week, and meet with his infant stimulation teacher once a week. This is all normal to me. At the same time, I am thankful that Justin should have such opportunity. May I remind you that Justin is 19 months old, and cannot crawl like a typical 8 month old child can. He is just learning to stand on his own. He cannot walk. Normal 19 month old children run. Yet, I do not compare because I see the progress, though slow and slight, that Justin is making. I am proud of my child, and thankful for each day that he wakes and smiles at me.

I retrace my steps to the past because I am afraid of the future. There is this haunting thought in my mind, every day, that wonders if that last cath/pacemaker/surgery/stroke ordeal is a sign of something going on in his body that has not yet been rectified, that could lead to…I will not say it.

Towards the end of our cardiology appointment, I asked the cardiologist for literature on heterotaxy. Apparently, the literature would be too technical for me to understand. I asked him if there were any studies done about heterotaxy. He said yes, but mostly on the genetics aspect of it. I asked him if there was anything, anything else at all that I should know about Justin and heterotaxy. Tests that could be done. The questions started getting more general because I started getting desperate, hoping I’d get an answer somewhere. Finally, I asked a more specific question about his lungs, and whether or not he knows if they’re abnormal (as many of children with heterotaxy are). Could doctors tell through a chest x-ray? Cardiologist told me he hasn’t looked at that, yet, but he wouldn’t be surprised if there is abnormality in the formation of his lungs.

What does this mean, I ask? How does this affect how healthy he is? My readings and research have helped me understand, if nothing else, that heterotaxy is very complex, involving many or all systems of the body–cardiovascular, pulmonary, immune, digestive. And, he finally answered with something that I was trying to get at: all the systems work in synergy. “Exactly!”, I thought. So, how could we isolate only the heart as a malady, and not consider how every other system that is poorly formed in his body affects his heart, and the other way around. Shouldn’t other specialists work with the cardiologists in understanding these heterotaxy cases?

By this point in the conversation, I was ready to stop because I realized the enormity of the task I was about to ask of him. But, I didn’t. I asked him to help me. I asked him to share with me any information that he may get from knowing Justin’s condition and through his literature and observation of other heterotaxy children. To help me prepare or predict what may happen the next time around.

I realized how almost an impossible of a task it is. It may take beyond our lifetimes to know….why and how the body works in this synergy. The human body is complex. Basic elementary biology taught me that.

I was just so…afraid…of the future. I always want to be in control. And, suddenly, I realized that I’m not. Even, now, as I type, this thought brings tears to my eyes.

When I accepted this child as God has given him to me, I had accepted the great uncertainties, pain, and heartache that would follow.

In the two days after the meeting, I felt entirely hopeless. Hopeless of the future. I realized that it was the worst place to be, thinking like that. But, I was sad of the imminent truth.

What pulled me out of this rut? I cannot tell you that moment of epiphany. What I can tell you is that the more time I spend with my children, the more I learn of patience and graciousness. Each day is its own miracle, and I should not be so greedy as to ask for so much more.

Justin is the future. He lives a life that many could not have imagined until 30 years ago.

I continue to be thankful for each day, and take it as it comes. I cannot live being afraid of what could be, when what I have is a living miracle.

P.S–This does not mean that I will stop asking questions, and learning more about heterotaxy and Justin’s condition. I hate to say this, but it means I will expect less from his doctors. I think my expectations were set too high. Anyway, life is more worthwhile when you are appreciating rather than worrying.

I wouldn’t exactly say I come from a family of gourmet chefs. My parents worked quite often while my siblings and I were young, as is the typical life of immigrants back then. While my parents were at work, my Grandma raised my second sister and I, and we enjoyed her home cooked Vietnamese ham, rice, egg rolls, stir fry and sauteed this and that, and various noodle dishes from little tots until our pre-teen years. It seemed effortless the way she threw our meals together, and it always tasted so yummy. Until this day, at the age of 96, her cooking is still unsurpassable.

When she left us to move in with my youngest uncle as he took on the duty of caring for his elderly mother, she left with her homemade meals, also. There were those traditional extended family meals that my Grandma contributed to every Saturday or Sunday where all my aunts, uncles, and cousins gathered around the table of someone’s house for dinner after Mass. But, the days of daily home cooked meals were over (until I got to college).

My parents were busy trying to keep a roof over our heads, and provide food on our table. Priorities, I understand that.

But, I sure missed homemade meals. And, nightly family meals.

Fast forward a decade and half later. I am the parent struggling to care for my children. But, my circumstances are much different than theirs back then. I don’t have to struggle in the same way they had, having to find work with limited English and education or trying to build a home in a foreign land.

I am a privileged, college educated stay-at-home mom while my husband puts his smarts to work. My husband has a similar background to mine, as his parents are immigrants, also.

There were many missed family meals and time. But, our parents’ sacrifices gave us opportunity.

Our parents’ sacrifices gave me the opportunity to bake red velvet cupcakes with my dear 3.5 year old, Nathan, today. At 3 o’ clock in the afternoon while Justin was napping. And, chicken filled rice paper egg rolls for snacking. And, chicken pot pie for dinner.

I had never thought of myself the cooking type. There was a time when I prided myself in not knowing how to cook (hint: I ate out all the time). Don’t ask, I don’t get it either.

Once we started our family, though, my ability to cook became very important to me. I have come to learn that it is through food that you can bring and keep your family together. I think my mother-in-law does this best.

So, I watched Food Network. I secretly watched my mother-in-law cook her secret recipes. I tried to emulate dishes I enjoyed at restaurants. I looked through recipe websites for inspiration. I cooked.

Then, one day, when I least expected it, I was called a gourmet chef. By Justin’s occupational therapist. She had noticed all the special meals I prepared for him.

The greatest reward, though, is when Nathan complements my cooking with, “Mmmmm, yum! I like this food.”

It’s all love, Baby.

I’d be lying if I said I am a wonderful cook. Loi actually is. But, I’m trying.

So, here we come full circle with me struggling in my own way as a parent, trying my best for my family in the best way I know how. And, with hope that I’m building opportunity for them to have a better life than mine.

P.S–Justin’s cardiology appointment went well on Tuesday. But, I needed a day to gather my thoughts before sharing. Thanks for the prayers!