Home of the Four Trans

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

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

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

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

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

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

Nathan’s Last Playdate of School Year

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

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

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

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

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

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

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

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

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

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

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

Here’s one before I leave you:

N: Mom, I will love you for free.

Me: (confused) For free?

N: Yea. I will love you for free.

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

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

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

N: (Smirks)

Nice try buddy!

Thanks for checking up on us!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The don’t resent their parents.

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

They think, “Whatever, Mom.”

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

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

Neurology

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

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

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

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

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

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

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

Ophthalmology

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

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

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

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

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

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

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

But, onward we go.

UPCOMING EVENTS

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

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

Since we’ve had Justin, we’ve learned to enjoy the simpler things in life. Big vacations to faraway places do not play into our plans as Justin is limited to where he can go in altitude and proximity to hospitals and medical care. As residents of sunny Southern California, though, we’ve found there to be endless opportunities for exploring and excitement here in our home state.

Mall

It’s been awhile since we’ve been to South Coast Plaza. Aquariums, parks, and Legoland have taken the place of shopping, but, we had a birthday gift to shop for at the Disney Store this particular Friday, so off we went.

Warm croissants and pastries from Vie de France, carousel rides, balloons, and toy stores. Need I say more?

These balloons are $6 each! My kids didn’t ask for one, thank goodness. But, they sure are pretty to look at!

Justin was not so sure about the carousel.

After one round, he warmed up to it, and wanted to go for a second time! After the second time, he didn’t want to get off! After he got off, he kept pointing at the carousel, and grunting to insist that I take him on, again. Didn’t happen.

Nathan had fun, he really did. He just hates getting his picture taken. Don’t know why…

Justin and Nathan playing at the train table. Notice that Justin is standing and playing by himself! Yay!

Again, the brothers playing side by side. Notice how Justin is standing by himself and playing with his unaffected arm. Yay!

I don’t get why the kids are so intrigued by the escalator. I think they went up and down all 3 flights. But, it’s sure good for providing them with sensory input.

On this trip, I’ve noticed how much more independent my children have become. My once trusty companion, the double stroller, is, now, more of a cumbersome contraption. I found myself unable to keep up with Nathan as he swerved through the aisles in the toy store because the stroller was a darn wide load! Justin didn’t make it any easier as he preferred that I hold him under his arms as he walked through the aisles, following his brother. Eventually, I ditched the stroller to a side, and kept up with the kids at the train and race car track tables.

Upon entering the toy store, we met a nice father who later introduced us to his 3 year old son who has Down Syndrome and endured an open heart surgery. The father had noticed Justin’s scars when his shirt lifted a bit as he reached for a toy.

I knew he had seen more than he had bargained for when he allowed a “Wow” to escape his lips. I ignored it, not knowing how else to respond. Then, about a half minute later, he said, “You know, my son had heart surgery when he was 3 months old.”

The ice broke, and it turned out that we live in the same city. He told me how well his son is doing, health wise, and is trying to catch up cognitively. They had plans to travel to Japan the next day. After having his son, he and his wife had a pair of healthy twins.

I thought, “Wow, life does go on.” It does. We breathe, laugh, smile, explore, contemplate, move on, LIVE, every day.

He said goodbye and good luck, and I was so grateful. This really set the tone for the remainder of our weekend.

Beach

Can you believe that we live 25 minutes from the coast, but have not traveled to the beach for 2 years? Part of the reason is my phobia of the sun and the damage it could incur on our skin and health. The other part is because Justin is on certain medications that make him more sensitive to sunlight (i.e. sunburn). However, we lathered ourselves with sun block, topped our heads with brimmed hats, and headed out to the sea-side.

The kids kicked their feet in the water, Nathan chased waves, we dug our feet in the sand. In between, we lounged on our Lightening McQueen beach towels and munched on BBQ Lays Potato Chips and Rold Gold’s Pretzels.

It was only 2.5 hours that we spent on that beach, but I know it left such a positive impression on Nathan that he asked to do it, again, the next day. Maybe next week…

Justin looking out into the ocean.

Nathan preparing to scoop up some wet sand.

Can you find My Boys?

We sure are a colorful bunch

That evening, we attended a birthday party at Chuck E Cheese’s.

The remainder of the week was family time, and graduation parties.

Upcoming Events

This month, we’re looking forward to cherry picking on some local Cherry Orchards, movie in the park, and family clay time (Mommy and Nathan only). Maybe, a trip to the Discovery Center to learn about robots, if Nathan is up to it.

This week, Justin has neurology and opthamology appointments for routine check ups.

Thanks for checking up on us. I hope you all have a wonderful week.

My siblings, Dad, Loi and I decorated my parent’s backyard with flowers and hanging umbrellas for a Mother’s Day brunch.

Loi made a lox and cream cheese pizza appetizer.

The main dish: Eggs Benedict. Mmmmmm

A refreshing fruit platter as one of the desserts.

My boys with their Grandma.

The boys with their Mama (this was the best picture I could get with both of them next to me).

My younger sister, Yvonne, my Mom, Nathan, and me.

Justin being Justin.

Loi tasting his sauce for the eggs.

Justin is a little ham. He knows how to pose for the camera, now.

We visited my Grandma who helped raise me. She has so many grand and great-grandkids, I’ve lost count; But, she remembers and loves all of them. She is the definition of Super Mom/Grandma/Great-Grandma.

My family gathered back at my place after we came home from Sunday mass for another Mother’s Day meal (my mom ordered Vietnamese food). From L to R:  Chris, Dad, Nathan, Loi, Justin, Me, Mom, Yvonne, Diane.

Although Mother’s Day 2009 was quite a busy day, I would not have wanted any other way.

On Monday, we had Mother’s Day dinner with Loi’s family. Unfortunately, I was not able to get any pictures, and Justin was sick, so he didn’t attend.

Sorry this is so late, but I wanted to wish all of you Mamas and Mamas-to-Be a Happy Mother’s Day everyday!

JT trying out Mama’s sunglasses. He insisted on putting these on by himself, then exclaiming, “Cheeeeee!,” to encourage me to take a picture of him.

May 9, 2009: LEGOLAND Round 2

Our view of Legoland’s version of the NY skyline.

JT enjoying his time…

…as he watched on his brother

…taking another driving lesson at the Junior’s Driving School.

NT is getting pretty good at driving. He can even drive one handed. Yikes!

Justin isn’t tall enough to ride the helicopter into the sky (plus, there’s a restriction for people with heart problems as indicated on the sign. Note: ask cardiologist). But, he didn’t mind.

NT braved this ride during Round 2. He even took over the controls and didn’t let Papa touch anything!

JT only wanted to be carried; He does not like being confined to the stroller. This is Loi taking over JT carrying duty, and JT looking back to make sure Mama didn’t wander off somewhere.

The T brothers working on some Legos.

JT actually attached some to the board on his own, while standing on his own! Yay!

NT smiling proudly with the finished product.

It’s easy to get lost without a guide to show you the way. For me, my children are my guides. They give me daily reminders of the things that matter, and those that don’t.

Nathan teaches me patience. I still have much to learn about this one, and he knows it, as he constantly tries to test me. I’ve learn to choose my battles. So what if he decides to go on a walk in the public looking like this:

It’s cute. And, quite frankly, I don’t care that people stare. He’s exploring his creative side.

Justin tells me to not sweat the small stuff. Things will happen beyond my control. Even if I try my best, I cannot control what happens to him. In the grand scheme of things, it’s OK to fall, sometimes. We just have to remember to get back up.

Nathan reminds me that there is nothing to fear but fear itself. Five months ago, he would have begged me to help him up that net. Today, he did it all on his own, over and over again.

Justin reminds me to smile. No matter how painful life can get, there is always a reason to smile. He shows me this every, single day.

My children remind me that they came from me, but ultimately do not belong to me. I must not hold on too tightly.

Weight/Growth Issues: Justin has grown about 2.5 pounds in the last 2 months, and now measures at 29.5 inches. He lost about a pound during his illness, but gained it back, plus some. We officially started him on an appetite stimulant that was originally concocted for allergies. It is actually an antihistimine that causes drowsiness and hunger. As usual, I had some apprehension about him starting a new medicine in addition to the 4 that he’s already taking, but he needs it.

Electrophysiology Appointment: Justin met with his EP, today, for a pacemaker interrogation. I still do not truly understand EP, and know that in this lifetime, I never will. I suppose all I need to know is that he has heart block, but still has an intrinsic rhythm because he has two sinus nodes. Theoretically, if a lead were to break, we’d have time to treat it. He’s also using his pacemaker about 94% of the time.

For the past year, I’ve been engulfed in Justin’s heart and heterotaxy condition that I hadn’t taken the time to research on the effects of his cardiac surgery related stroke.

I think I hit an all time low last week when I saw so little improvement on Justin’s right affected arm/hand and leg despite the three times a week sessions for the past year. Like any mother, I wanted the best for my child, and I didn’t think I was providing enough for him to reach his potential.

On this particular day, when I had hit a low point, I had observed in therapy how much Justin wanted to walk, but couldn’t. He had made all the necessary movements, but his body was not cooperating. He’d step forward on this left, then on his right, and collapse to the right because he didn’t have the strength, balance, or proper foundation in his right foot. My child was working so hard, but his body and brain could not make the connections to do what he wanted it to do. I felt defeated despite all the options that laid ahead of me: intense therapy sessions, ankle brace, second opinions, sensory integration therapy, constricted induced therapy. I didn’t know who to trust, or which programs to entrust my child in.

That night, after the boys had laid their heads to sleep, I sat in front of my laptop and cried. I had felt like the answer was in front of my face, but I wasn’t looking in the right place.

After the cry, my head emerged from the fog of hopelessness, and it became clear to me what I had to do (crying is cathartic!). I started researching about cerebral palsy and on the term hemiparesis and hemiplegia, conditions that have been freely tossed around by Justin’s therapists. Although the cause of Justin’s brain injury is different than children with cerebral palsy, the repercussions and therapy for recovery are similar.

During my research, I found blogs and websites dedicated to children with hemiplegia. I suddenly came out of the dark and saw that there were many children like Justin, and felt less alone. I am grateful for the Hemi-Kids Listserv hosted by Children’s Hemiplegia and Stroke Association, in particular because it has allowed me to connect with many parents on one medium to learn from their experiences.

I love the internet!

The most important thing I’ve learned so far is that children who’ve experienced brain injury may never regain full usage or function of their affected side–and, it’s OK. One parent explained to me how well her child is able to function with one “good” arm, and the other as a “helper” arm. He’s even able to beat his bilateral capable friends in video games one handedly.

You see, I’m not looking for perfection, I’m looking for answers and hope. I am so grateful for all those families who are brave enough to share their stories out there, enabling a bit of light in a sometimes dark world.

I will update as I learn.

Justin’s blood cultures came back negative as confirmed by his pediatrician and a St. Joseph’s representative, today. Whew!

However, Justin continues to vomit several times a day. I had him seen by his ped, today, and it seems he has a stomach flu. I will wait to see how he does over the weekend before freaking out more than I already am.

It’s sad. His eyes are not as bright as they usually are, and he constantly wants me right by his side. When he vomits, it goes up through his nose and he freaks out sucking some of the vomit back down through his throat. Hist vomiting is very concerning to me.

Nathan is at my parent’s house because I started to get overwhelmed. Justin was over-tired with red eyes, but refused to sleep because he wanted to keep up with Nathan who wanted nothing to do with his little brother because he doesn’t want his little brother to get him sick. Nathan almost poked a colored pencil in Justin’s eye while the two were fighting over it. The dishes and laundry are piling. I haven’t eaten. Blah.

Anyway, I will keep you all updated. Thank you for checking in. Also, prayers for Justin’s speedy recovery will be greatly appreciated. Thank you!