Home of the Four Trans

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.

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.

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.

The weather forecast called for clouds and rain. When I looked out the window this morning, it was bright and sunny. Perfect day for wearing a dress, I thought. I love dresses because it makes me feel put together even when I’m not. It says, hmmm, cute. Not, oh, she’s a frazzled mom who needs a shower.

I had spent the morning preparing these yummy Rachel Ray inspired chicken sausage patties to be eaten with rice or hawaiian rolls. I washed the remainder of the dishes from 2 days ago, loaded it into the dishwasher. I made Justin a banana smoothie for breakfast that he ate (yes!).

Physical therapy was canceled, again, today because Justin’s PT was just recovering from a respiratory thing. We erred on the safe side, and decided to reschedule for next week. So, our morning was more free than usual.

We did the OT thing, though. He had just been re-evaluated as required by California Children’s Services (CCS) to see where he is developmentally, whether he’s reached his goals, and what new goals are to be made for him. It seems he has sensory loss in his right hand/arm (result of stroke), which makes it difficult for him to realize to use it–he cannot feel that he has that part of his body there. He cannot flex his wrist upward, or turn his arm into supine position. He does have some control of his shoulder and elbow which enables him to voluntarily bring his arms up and down, and side to side. With those motor functions, he can help dress/undress himself, knock over blocks, spin a big wheel. He can also bear weight through his shoulders while on his belly, on all fours (assisted), and side sitting. Being able to bear weight through his shoulders also enables him to combat crawl forward and sideways (although, he still prefers to roll).

Here are some other things Justin can do:

Stand unassisted for a good 1 minute. The blue thing on his hand is a splint to help keep his hand open from a tight fisted position.

Enjoy a bottle with his brother (unassisted, but only sometimes). He’s learned to compensate.

We’ve had him for a year post bi-directional Glenn. Now, the Fontan (the third of the palliative surgeries) are in the forefront of our minds. Thoughts of how another open heart surgery will affect him are prominent and persistent. I wonder, “What if he has another —?” Then, all our hard work in the past year will mean nothing?

As unhealthy as it may seem, I will not stop thinking these thoughts. With these thoughts come questions that I hope will help me find some answers.

When I think and plan for the worse, it also helps me appreciate the here and now. Justin is here, and he smiles, and he knows his Mama. He loves his Mama, in fact. He fights with his brother for toys. He grunts when he doesn’t get his way. He whines when he wants to be carried. He follows instructions, mimics, and is always the life of the party.

Yes, I push my child in his therapy exercises and massages, everyday. And, heck, it can get exhausting when all I want to do is play with him, and let him play in peace. In the middle of it all, though, we cuddle and laugh, and let go of the heavy burdens he’s been born with in this life.

Like today, we had a ho hum day of nothingness.

When I was skeptical of the rain, I had made plans to take the boys to Woodbridge Lake, closeby Nathan’s school, for a delightful lunch with the ducks, swans, and midges. I had even packed some soon-to-be expired hot dog buns.

By the time we had gotten out of the school doors, the sunshine had gone away, and clouds had started to blanket the sky in a soft grey.

We headed to my mom’s house (Ba, to the kids), instead, to hang out. My sister was home. We watched a bit of “10 Years Younger” on TLC and each took a shot at how old the lady was before they started her transformation.

Nathan played with a broken eucalayle from his room (my old room). Justin watched his brother in awe. They slept. We ate. Just one of those ho hum days.

In the evening, I headed out to Nathan’s school for a Parent’s Education Night about Mathematics in the Montessori program. Very impressive. It was a 1 hour instruction on how toddlers and primary schoolers learn the foundation of algebra (addition, subtraction, mulitplication, division), and the idea of carrying and exchange using the Montessori tools. Nathan is definitely staying in this program.

I also asked the academic director about Justin, and when she felt it was appropriate for him to start the Montessori program, given his delayed development. She said she’d at least like for him to have his gross motor skills so that he would be upright and walking. This is for his own safety as the other toddlers will be wearing shoes and bringing in a lot of germs on the ground. Always good to know.

Hope you all are doing well. Thank you for checking in.

For those who have a fast Internet connection you can check it out the high-resolution video here.