Home of the Four Trans

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

We caught him eating a fry!

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

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

Young married couple

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

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

 Playing with one of his favorite toys during physical therapy.

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

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

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

“Woah, did you see that, Mommy?”

Riding on the motorcycle.

Cupful of tickets he had earned!

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

Garage for Lightning McQueen

Sunday is typically our family day.

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

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

Prayer Request

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

Here are two inspiring examples:

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

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

I hope everyone will have a blessed and beautiful weekend!

Much has been going on in our household, and I guess I was holding out for some good pictures before reporting, but then that may be never. So, here goes. We start with Nathan’s school adventures.

Nathan started Preschool. The first week was a disaster with him screaming every morning at drop off. He refused to join the other students in the morning circle time where they sang songs, and learned each other’s names. He had to be removed from the classroom because his screaming and crying was so disruptive. However, we had no choice but to leave him like that, because…he has to learn to join the real world, eventually/some time?…

I did not cry for my first born’s tears. But, I second guessed myself, and my decision to put him in school. Now that he’s there, there really isn’t any turning back. I mean, what would we be teaching him if we pulled him out…that screaming and crying will get his way? Argh. So, we stuck it out, crying and beatings in the morning (by him on us, not the other way around) and all.

The second day, he was really pissed. During lunch, he refused to eat, and made his point by throwing his plate across the room. His response to every request made by the teacher was “NO!” I was told by the school administrator that he’ll get the hang of it, we just need to teach him the little things like, “grace and manners.” Uh, was that an insult, because it sure felt like one.

We started feeling alone in the whole process. All the other kids knew how to wave good-bye, get in line, and join circle time…without screaming and yelling. What is wrong with our kid? Us?

Well, nothing…I think.

Turns out, most of the kids in Nathan’s class are older than he is by one year, and started a year earlier, so had had their time to express (cry, yell, scream) their anxieties.

One mom told me that her daughter took a good week and half to adjust. Now, a year later, she still gets teary-eyed when dropped off, but does not scream and wail like Nathan does.

Just a moment earlier, she had seen Nathan being carried from his classroom down the hallway by the assistant teacher. He was screaming “Mama! Mama! Mama!,” reaching out for me over the assistant teacher’s shoulder. All I could do was say, “I’ll pick you up after lunch, Nathan,” before he disappeared around the corner.

I went home, feeling completely guilty, and seriously considered home schooling my kids. In fact, I had spent the entire night before researching on line. Home schooling is A LOT of work on the parent’s part, but is awesome for the kids, I think. They’re allowed to work at their own pace on the subjects that they like, with no set curriculum for any given day…they just have to complete their work for the year. But, I digress…

With the beginning of the new week was a new beginning for Nathan. Although he still cried at drop off during the second week, he stopped after we left, and was willing to observe the other students “working” on their “work”. He’s at a Montessori program…everything looks like play, but they’re really learning (typical child’s life, right?). Now, on his 3rd week, the teacher says he is actually doing some of the work himself.

This week, when I picked him up from school and asked him if he had a good day, he responded with “Yes,” but wouldn’t elaborate. He’s made some friends, and his favorite time is play time in the school playground. Today, he rode in the helicopter. Yesterday, he was on the space ship. His “best friend” Zack tried to run him over with a tricycle.

Nathan, my first born, 3 years old, is definitely growing into his own. I don’t know if “cute” describes him anymore. He’s like a little teenager….

With the chaos that surrounded that first day of school, we failed to take a picture. The two shots we did get were from Loi’s I-phone, through a gridded glass from the hallway, looking into the classroom. He was wearing his best clothes: a Red CARS shirt, jeans, and red Crocs with six CARS ornaments on them. He had just finished his screaming, and was seated next to his teacher, with a little burrowed brow.

Here is a picture of the shirt he wore on his first day of school. I wanted him to wear something familiar to him and to his peers. A conversation starter, maybe? He wore this shirt on the previous Monday, before school started (the good, ol’, calmer days). We had gone to a Build-a-Bear Workshop.

These animals are his creations. The left purple bear was for Grandma, and the right purple bear was for his Great Auntie. Both love purple. The stud in the middle is his. He’s a Laker Lover like his Papa. Before choosing the animal, he knew he wanted to name it PeeWee, after Justin.

All the drama aside, I am having fun with Nathan at this age. Really. I mean, most days are overwhelming with him claiming every toy as “mine,” and dictating to Justin what he can or cannot play with, leaving Justin with eventually nothing to play with…Let’s not forget the tantrums with endless screaming. The kind that leaves Justin bug-eyed, like, what is going on? Then, there are days when I feel like I’ve lost so much control because I never have enough time to give to them, and the guilty conscious beats on my head…

He’s growing, and has an opinion about everything, and a solution for everything (never mind if it’s right). His facial expressions and the tones he uses when he talks are pretty priceless too. I love that he has suggestions about things, now. Like, the other day, he told me he wanted to sit in a real fire truck (his new obsession). So, I set up a meeting at our local fire station. We’re planning to go tomorrow after school. We’ll see how everything goes…

Tune in for more drama!

“The highchair is for playing, Mama.”

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

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

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

What the GI recommends:

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

How Justin’s looking:

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

How we’re handling the situation:

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

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

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

We appreciate all the prayers! Thank you!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Justin smiled in amusement.

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

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

Then, I realized how behind my kid was.

Guilt followed.

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

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

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

Guilt subsided.

My kid is happy.

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

Yes.

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

 Swinging like a big boy!

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

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