Home of the Four Trans

“So, how is he…you know, up there?”

I get asked this question quite often about Justin’s cognitive development. Most people assume that since he has had so many medical issues that he is cognitively behind, or even mentally retarded.

Well, Justin is cognitively behind, by about 4 months for his age. Justin’s cognitive abilities were measured by a test. The tests included shape matching, block stacking, self care tasks such as undressing, picture matching, etc.

Justin is also behind in his receptive language skills. In Justin’s case, receptive language is his ability to understand spoken language (it could also include written language). The assessment done by his teacher shows Justin understands the spoken language at about an 18 month old level. However, if you interact with him, you’ll find he understands a lot of what you say, and ask of him to do. It’s only when the teacher tests him is she able to see how behind he is. I personally think the tests are not accurate enough in measuring his intellect. Seeing him every day the way I do, I know he knows more than he is showing. And, as always, I look for progress as positive signs of his development.

I suppose the numbers are disappointing to see because if anything, I’d rather that he not be behind. But, he is, and so we deal with it. I can’t stop buying stuff to help with his development (like things will actually make him all better) because I’m always so hopeful. Just today, I went out to Toys R Us on what Loi called a shopping spree to buy him picture books, flash cards, and learning toys (Nathan got a Hungry Hippo game and a 100 piece jigsaw puzzle set). And, I’m so glad I did because with one of the books, I was able to see how smart my little boy is. I worked with him on a magnetic book called “Let’s Learn Our First Colors,” by Priddy Books.

Justin was able to match the magnetic pictures to the outline of the pictures on the book. I was so proud of him for being able to do this because it was always so difficult for him to do this just a month ago! I went through 11 pages with 3 objects to match per page with him before he got tired. I was too excited that I forgot to take pictures of him doing the task! But, above is evidence of some of his work! I’m so proud of him, can you tell?

I don’t care what the tests say, Justin is just something else!

“Do what you feel is right. Follow your gut/instincts. You are the parent and you know what is best for your child. You know him/her better than anyone else.”

Parents raising children with special needs hear this a lot from everyone, even each other. For the most part, the advice is good and true, and I follow it. There is no one who knows my child better; I’ve been by his side every step of the way, and asked all the questions that I knew how, and read up on journals and blogs and researched on the internet until my brains made me cry (so listen to me when I voice my concerns!). As a parent, sometimes, I just know what is right or wrong for your child because I do.

As well meaning as the advice may be, it also places immense pressure upon the parents’ shoulders to try to make the “right” decision. I mean, what is the right decision, anyway, when either way you look at it, you have a chance of losing.

This is pressure. If I really think about things this way, that Justin’s whole life is dependent on the decisions that I make for him, that is A LOT of pressure.

For example, deciding whether or not to enroll Justin in a group program was one of those times when the “right” thing to do was not so clear. Given his CHD and asplenia, I wondered if the benefits of the program were worth the germs (and viruses aka H1N1) that he’d be exposed to at the preschool. Of course, with my desire to instill a bit of normalcy in my child’s life, and given the cardiologist’s green light, I decided to give it a try. I’d heard many good things about the program, and wanted to give Justin the opportunity to grow cognitively.

If all goes well, then I’m a good mother for taking such risks. But, if devastation occurs (I’m not being dramatic, it’s a reality), then I am all to blame.

But, you know what? Along this journey with Justin, I’ve learned to relinquish the control that I thought I had over my life and my child’s life. The reality is, I never really had any control to begin with. Life will come as it will, and all I can do is trust in the Lord. I recall planning Justin’s arrival down to the tee. I wrote a step by step plan as to how I wanted Justin to be handled, and where he would go. I chose the surgery date and hand picked Justin’s cardio thoracic surgeon. I prepared myself for Justin’s arrival by reading medical journals and blogs about what to expect after his first open heart surgery. I looked for glimpses into the lives of children with CHD anywhere I could find it, mostly on the internet. I came into the game with my hopes held high. I thought I knew.

What all my researching and planning and reading didn’t tell me was what would happen to Justin. It didn’t tell me that he would suffer from complete heart block that required him to get a pacemaker, or that he’d flatline two times in a day after his heart catheterization or that he’d bleed after surgery, or that he’d suffer a stroke. I wasn’t prepared for those events because those things were not supposed to happen…at least, not to my child, I thought.

As those events unfolded one by one, we found that we were without control, as were the doctors. They could not agree as to why Justin’s rhythm was so intermittent, and why he suddenly came back from flatlining for 8 seconds, then another 30 seconds. When the doctors didn’t seem to understand, I knew there was no logic or reason left in Justin’s journey, that all our trust had to be in the Lord.

I am taken back to that day when I saw Justin’s blue and lifeless body lying in the hospital bed swarmed by a team of medical professionals whenever I have a difficult decision to make for him. Both times, he came back, on his own without resuscitation. I am reminded that I can only make a decision based on what I do know, and the rest I must trust in the Lord.

Here is an image I found on a blog that I follow. This piece of art titled, “Chief of Staff” by Nathan Greene, really speaks to me.

As difficult as it is to hand my child, my life and blood, over to strangers, I find peace in knowing that the Lord is by the surgeons’ side to guide his hands.

So…

The school Justin is attending isn’t any ol’ school. Of course not, because Mr. Justin always gets star treatment (he does!). Justin is enrolled in a pre-school program offered by Interventional Center for Early Childhood (ICEC). This program is designed for children who are developmentally delayed, and the service is paid for by our local Regional Center.

I am grateful that we have access to this program. Justin has many therapists and early childhood trained teachers at his disposal. The teachers and therapists set up a themed curriculum each day where all the activities emphasize that theme. The first day was about “Back to School,” and the second was “All About Me.” The activities are categorized and separated into stations: fine motor, gross motor, cognitive, music, oral motor, speech, etc. All the lessons incorporate social skills such as listening, taking turns, asking for things, etc. While rotating through the stations, Justin also has access to his peers. I am hoping that he will learn by mimicking as well.

All the children in the program are delayed in some way, although not all have a definitive diagnosis. Some may just be delayed in one area of development, while others have many challenges that pertain to a certain diagnosis such as Down Syndrome.

Now, the topic of Justin’s developmental delay (in all areas) may be an uncomfortable one for some to discuss with me, for whatever reason. But, let me tell you, I am not at all shy about expressing my thoughts about it. First and foremost, I am so proud of my son. He’s been through so much in his little life and still…just look at him. He’s a hard worker, motivated, and bright eyed. Second, it’s hard for me to see how delayed he is, especially when he’s not among his peers (like in Mommy and Me classes). I’ve grown to see the way he cruises and scoots as ‘normal’ for him; I’ve grown accustomed to him using his left hand as the dominant hand for everything. Third, I tend to look at his many achievements than at what he’s yet to accomplish. Considering what he’s been through, I think he’s amazing.

However, when I do see how different he is in his inability to walk independently or talk like other 2 year olds do, I get worried. As a mother, I will love my child for all that he is until the end of time, and there is nothing more I’d rather do than to protect him. At the same time, I realize that my time is limited, and as much as I’d like to protect and care for him, there comes a time when I will have to let go.

But, rarely do I contemplate about this ‘difference’…because rarely do I contemplate about the future. There is an immediate battle we must tend to, and that is keeping him well and healthy for the less immediate but near battle of the third surgery. Any thought of future surgeries weighs my heart heavy enough.

Some may call me short sighted for not pushing Justin enough to regain his abilities (which cannot be fully recovered) lost from the stroke. Some may call me a worry wart or pessimist. The way I see it, we’re doing the best we can with what we got. As much as I want to enroll Justin in various programs (HBOT or CIMT) to increase his skills, I need to enforce a sense of balance in his life. Justin is a kid, and I want him to enjoy what he can while he can. When the time comes, all will be as it should, I believe this. The light years between now and the future is too far and wide–many things can still happen, especially with that surgery ahead of us. The future is too far away to plan for. For now, Justin is making progress, is motivated, lovable, and happy. Really, this is amazing. Amazing.

So, I suppose how ’sad’ Justin’s situation is really all depends on the eye of the beholder. And, you know, I can only see him the way a mother could.

*Sigh*

At last.

My love, I could not have been prouder.

There were butterflies in my stomach the night before as I made a list of things to pack and do for your first day at school. I wanted everything to be perfect for you.

Every day, you stand by the garage door to watch your brother leave for school wishing you could do the same. I know this because on some days, you’d cry and point at the door, thrusting your body and up and down to convince me to take you. On other days, you’re content with me telling you that we have things of our own to do. You are a curious and social boy, and you just want to have a turn at it.

It is now your turn, and I didn’t want to disappoint.

So, I made your snack of blueberries and homemade whipped cream, Kashii Sunshine cereal, and milk. I also made sure to pack you a cup, straw, napkin, spoon, and bowl. I put it into an insulated lunchbox covered with cars, trucks, and emergency vehicles. The smile that spread across your face when helping me carry out the door to the car was priceless; you were so proud of yourself.

I dressed you in a big boy outfit with blue Converses, jeans, a shirt with a car on it (your favorite!), and even a belt.

I asked you if you were ready for school, and of course, you nodded yes.

Off we went.

Once we got there, before unloading you, I hung the camera around me neck and the diaper bag on my shoulder. As I lifted you out of the car, you wanted to be sure that the lunchbox was in your hand. You are so helpful.

We met the director who took us to your cubby where I stored away your lunch box.

We joined the other children in the gym as we waited for circle time to begin. You were just so curious of your environment and all the new (little) people. But, before you could even decide where to start…

Riiiiing. It was circle time.

I put you in one of the many colorful plastic booster seats around the circle time carpet. You tried to climb out and back into my arms. As I tried to seat you back down, the teacher began to sing and you soon forgot what you were fighting for. You love music. There was a camel, elephant, caterpillar, and gorilla that came out to welcome you and the rest of the children to the class. Your eyes lit up with each new song, and you even participated in the hand motions. Then, it was time to meet the rest of the class. The teacher slowly pulled out picture cards of each student in your class, and we all sang their names and the card was handed to that child. You knew your name and your picture, but were too shy to take it from the teacher’s hand. But, you had no trouble following directions. When the teacher told all of you to put down your cards on the floor in front of you, you did.

Then, it was time for your studies!

You made artwork by stamping while singing (sensorial).

You learned to ask “What is it?” by placing your two hands up by the side of your head and shrugging your shoulders. You made airplane, dinosaur, and car sounds while playing with the toys (speech).

You sang, “The Wheels on the Bus,” and made hand/body motions to each part of the song. Your favorite was putting your left index finger to your lips and shushing when singing, “…the parents on the bus go, shush, shush, shush…” You successfully pointed out all the parts on the bus (cognitive).

You filled rubber fish with water and squeezed it out into a cup. You scooped water up with a cup and poured it back out (fine motor).

You crawled up stairs, rode in a car, and soared in an airplane swing (gross motor).

I was so proud of you. I could not help kissing and hugging you after every accomplishment because I was so proud (you don’t know how to be embarrassed of this, yet). You’ve come a long way, Baby, and seeing you respond to instruction and mimicking the teachers  the way you did made me so happy.

The teachers all commented on what a great first day you had. Of course, they all loved you. I mean, who doesn’t, right?

Even when I had to leave you in the care of a teacher for a parent discussion session (my first time ever leaving you in the care of someone else that was not family!), you didn’t mind. I saw you watch me as I left the gym area, but just as quickly you returned to reading your book. I think it was harder on me to leave you, than for you to be left by me. The teacher said you did really well until they started to change your soaking wet diaper and pants. Then, you only wanted Mommy. It’s OK, you’re allowed to want Mommy.

We reunited and all was well, again. We even had a picture taken of ‘our’ first day at school together.

I’m so proud of you. You never fail to amaze me.

Love,

Mama

…too bad it wasn’t in the same instance.

Saturday was a glorious day because Justin bm’d on the toilet for the first time. We have not officially started toilet training, but he’s definitely been showing interest, so on that particular day, we decided to plop him on the toilet after a couple minutes of his straining in his high chair, and plop, plop, plop came the the little (and big) logs from our boy’s tiny bum.

Parents, you understand me when I say, it was so cute!, right? For those who are not, when it comes to our own children, even their poop is cute, ok?

So, I took a couple of pictures then Nathan took a couple of pictures to honor the moment, but I’m not sure if it’s, um, decent to post them. So, I won’t.

But, what I will share is this…

These boys share a brotherly bond that even their own mother cannot understand sometimes.

What I do know is that Justin admires and adores his older brother so much that everything Nathan says or do is just plain cool.

Like, today, Nathan was being naughty and said to my younger sister, “No! Poo, Poo!,” after she had asked him to do something. Then, just like that, Justin followed with an assertive, “Poo! Poo!” to my sister.

I couldn’t help but stifle a laugh (before scolding Nathan) while hearing all this from the dining room. Justin is just beginning to show the aggressive side of himself, and it’s strange to see and hear coming from such a sweet face with such a sweet voice.

Now, all he needs to do is transfer that energy into telling me when he really does need to go poo poo.

Justin’s recent doctor’s visits are as follows:

Pediatrician; well check and immunizations

I don’t know where on the chart he is, but Justin is on the chart for height! I hovered over the office assistant as she mapped Justin’s height on the chart in utter anticipation because I knew my boy had grown, but I did not know by that much! She measured him at 32 inches. Justin was measured at 22lbs 10oz for weight which means he is still below the normal curve for that, but he is trending upward on his own curve, which is exciting.

The pediatrician and I discussed RSV and the Swine Flu vaccination among other things. He is recommending the Synagis even though Justin is now two, and the swine flu vaccination. This is quite opposite of our cardiologist’s recommendation. I still have to do my own research before making a decision.

Cardiologist; echo, examination, and consult

The echo showed that Justin’s heart is stable; this means his leaky AV valve is not as severe as it was a year and a half ago. His sats were at about 85%-86% and blood pressure was 71/43 (low due to medication, but normal for him). His Captopril dosage was increased to 3ML three times a day from 2ML, and his Lasix dosage was decreased to 1ML once a day from .7ML twice a day. Nothing too exciting to report.

I suppose unexciting numbers are the most exciting news for me. The waiting to see the doctor part is also pretty nerve wrecking because I never know what to expect. Most of the time Every time he comes in, I just want him to blurt out the results of the echo, even before saying ‘Hi’ and ‘How are you’ so that I could decide if I should continue to hold my breath while my heart pounds madly against my chest, or sigh a breath of relief.

This consultation started with us talking about orthopeadics and his success with therapy because I wanted to know if his ability to walk would affect how well he would receive his (possible) new Fontan circulation as the Fontan circulation will be pumping oxygenated blood from the lower half of the body. The simple answer is no. If Justin’s ability to walk would determine how well he received the Fontan, then I would push for a brace or some sort of support so that Justin could walk. As it is, I will not, although he will be working on walking with a walker during his physical therapy session. At the same time, I will also seek a second opinion as far as bracing goes.

I hurriedly transitioned to, “First of all, how did the echo look,” while holding my breath and hugging my child.

“It looks good. Good,” he said. I hugged my child tighter and kissed him on the head.

No matter how good he looks, I’m always afraid to hear bad news.

Aside from those topics, we breezed through my questions about Synagis and Swine Flu vaccination. I also wanted his opinion on what he thought about me enrolling Justin in a group therapy program. I’ve come to  know his perspective as quite laid back when it comes to Justin and his interaction with the world. He said no to Synagis, but to check with infectious diseases. Not a definite yes to Swine Flu because of the adverse reactions he’s heard of children getting. He said yes to Justin joining a group program. Ultimately, the decision is all mine and Loi’s as far as how to keep Justin safe. But, I wanted a cardiologist’s point of view in terms of sickness and it’s affect on the heart. He seemed very laid back…

As a self proclaimed germaphobe, I worry about Justin–a lot. But, I don’t want to keep him from experiencing his life either. Yes, he’s young, some may argue, and he has the whole world ahead of him. With this perspective, I should just keep him closer for as long as I can, and let him enjoy life after his third surgery, or when he’s bigger. Here’s the flaw in that argument: Justin is not a regular kid. His medical history is extensive and the long term certainty of his life is not. I’m  not a risk taker, but when it comes to my child and his life, I’ve learned to take a few risks (within reason) because even with my hovering and protecting, I could not.

So, that’s that.

Dentist; cleaning and examination

No appointment is ever really just any ol’ appointment. Not even a routine clean and check up. Because of Justin’s medical history (congenital heart disease and asplenia) he is required to take a prophylactic dose of amoxicillin prior to getting any type of dental work done, including a routine cleaning. This is to prevent a bacterial infection in his blood stream and endocarditis. Of course with the risks (even if minor), I became quite apprehensive about the entire thing. As usual, I had to give myself a pep talk with the other voice in my head to calm down and trust the dentist. I had every reason to because he’s always been upfront with me with his medical expertise. I was so thankful that it was he and not the dental assistant (although they’re all so very nice and patient) who cleaned Justin’s teeth. There was some crying on Justin’s end, but only after he couldn’t hold it in any longer. I could see that as I lowered him into the dentist’s lap, he was scared and resisted from crying. It was only after the dentist put a plier type object into his mouth to keep it open when he started to wail, poor thing. I think, more than anything, he was afraid because I had to hold him down for yet another ‘procedure’. When all was done, I pulled him back up, gave him a squeeze and told him what a brave boy he was. We sat there for awhile before I brought his head to my shoulder, and then he calmed down and was ready to find his prize. Then, all was forgiven. He even gave the dentist a high five. As usual, my boys left with a grip load of stuff–new toothbrush, toothpaste, floss, prize, sticker, and balloon. No wonder Nathan loooooves going to the dentist.

Neurologist; routine follow up

She is concerned with the lack of progress Justin’s had in therapy in regards to strengthening his feet and hip. She would like to see further intervention with a brace, though it is not her area of expertise to recommend this. She suggested to get a second opinion if our current orthopedist says no again.

In conclusion…(haha)

Woah! That was a mouthful, but there’s more! Justin has made a lot of progress in his cognitive and speech development. I will include this in another post!

Thanks for checking in on our Justin Boy.

My heart is aching for this little girl and her mom right now. I remember running into Justin, the dad, on the CTICU floor at CHLA back in January of 2008 when our Justin was there fighting his own battle. Since then, Moriah’s been in and out of the hospital. Her most recent admittance to the hospital was 10 months ago; she is still there. Just as she seems to show signs of progress and talks of discharge are in the works, she develops infections. She’s even battled sepsis (bacterial infection in the blood stream) several times. Her parents were *thisclose* to losing her on several occasions.  Today, my heart aches for her because she is battling yet another issue related to her heart and further invasive intervention (i.e.; surgery) may need to take place. Please keep this little girl and her family in your prayers.

Pray for Moriah Nelson.

http://momentswithmoriah.blogspot.com/

I learned early on in my four years as a parent that parents are their children’s first teacher.

A few months ago, we noticed Nathan had regressed in his academic abilities. At first, we blamed the school’s summer program for not being challenging enough. Then, the teachers for not pushing him hard enough. What it really came down to, I realized, is us and how well of a role we take on as his teacher outside of school. We needed to continually spark his interest for learning.

Taking the responsibility I needed as a parent to help my child achieve his full potential, I decided one of the ways to do this is to compose one formal lesson plan a day that we can all enjoy and learn from together.

This past week, we learned a lot about different animals. One day, we learned about frogs, their habitats, and the sounds they made. Did you know frogs don’t go, “ribbit, ribbit.” For example, the bullfrog actually sounds like an angry bull when it croaks; the barking tree frog sounds like a terrier dog barking; the carpenter frog sounds like a hammer hitting a nail. We also learned about tigers and penguins. With each lesson of reading through the information, I’d show them pictures, and also searched you tube for video of sounds and footage to reinforce what we read about it. At the end of each lesson, I had Nathan and Justin each color a picture of the animal. We go over the animal’s body parts. I also quizzed Nathan on how to sound out the letters of the each word describing the animal (i.e.; tiger, penguin, frog).

By Thursday, I decided it would be a good idea to take them to San Diego Zoo to further reinforce what they had learned. Nathan, in particular, really wanted to see real tigers. San Diego Zoo was the closest zoo to us (1.5 hours away) that had tigers! I could not deny my child this learning opportunity!

So, off we went, and it was quite an adventure for all of us. The last time we had visited the zoo, I was probably in my third trimester with Justin, and Nathan was about 20 months old. This time, they were each able to enjoy the zoo from a different perspective. I had them all to myself as we trekked through the hilly and massive zoo, a most rewarding adventure for me.

Nathan inquired about every animal. His most dire questions consisted of, “Why is it laying there? Is it dead? Does it like to eat people?” He considered the animals that ate people and other animals “not nice” and the herbivores “nice”. We had to have conversations about why certain animals needed to eat other animals and that they are not necessarily mean if they do. I pointed out that he eats chicken and chicken is an animal. The conversation is still ongoing as Nathan is trying to fully grasp this part of life and death and survival.

Justin was more focused on getting out of his stroller than the animals. Once he was out of his stroller, he preferred cruising around while balancing himself against the glass of the displays. The exhibit that caught his attention the most was one of the monkey exhibits (I can’t remember the name, but they lived near the water next to the hippo exhibit). He tracked the monkey for a good few minutes until the monkey hid itself behind a wall of rocks. He also liked the turtles, giraffes, and birds.

Here is our adventure in pictures:

During our four hour adventure at the zoo together, I was able to witness how much my sons have grown not only in size, but also in their mannerisms and the way they communicated. What I was most impressed by was how cooperative both my boys were (aside from the Orangatan incident) on the trip–no hitting, yelling, outbursts, or tantrums. I was so very proud of them for making it easy for Mommy. The overwhelming feeling of love and accomplishment cannot be put into words.

On our wedding day, the priest asked us in front of our family and friends the one quality  that each of us cherished in the other. Loi, caught a bit of guard, answered with a simple, “She’s sweet,” although I highly doubt that that is an adjective many would use to describe me. I may be small, but not exactly sweet.

I, also caught a bit off guard, answered with the first (and true) thing that came to my mind, “He’s my best friend” (through tears, runny mascara, and loosened false lashes, of course.).

Now, six years later, I suppose he still finds me sweet (sometimes), although he did retract his answer later on on our wedding day. Just kidding. Actually, Loi is the only person who’s seen me in all my faces. And, yes, he has seen my sweet side, perhaps when others saw it least. He sees the best in me when I doubt myself the most. Even with my stretch marks and aging skin, he still thinks I’m beautiful. He is the only person I can be myself around, wholly and fully, and know that he understands me sometimes better than I understand myself. I trust him more than any person on this earth with my life and children. He is my best friend.

I suppose one of my only complaints is that we have only 2 children. The goal was to give birth to one every other year; we’re behind one kid. OK, I’m chuckling. We never made such a goal because our boys came along when they wanted, and we didn’t plan for either of them, and that is the way life shall be for us. Caring for Justin is quite the challenge for us, and having more is not exactly going to be an easy feat for us to follow, but we’ll take what we can have. Surprisingly (not really), the discussion of more children is pretty often and loud in our household coming from everyone including Nathan (he wants 3 more brothers all named Nathan, and 1 sister named Pretty). The question is, are we ready? I’ve decided to answer it this way: we were never really ready for the first two, and if we ever waited to be ready, then it will never happen. Waiting to be ready gives us too much time to think about how we’re not ready. When the time comes, we’ll be ready. Loi on the other hand is much more practical in his thinking and is more concerned about divorce rates, financial issues, and my ability to care for all three kids at one time. Anyway, this is just a glimpse of what is or is not to come in year seven.

In the meantime, we do as only best friends who are married should: love, fight, and make up.

Here’s a glimpse of our anniversary celebration as planned by Loi as a surprise for me to make me feel special :).

Then, we came home to the cutest two little munchkins in the world (well, we think so, anyway), with one half sleeping and starving because he missed his Mama, and the other sleeping soundly on the couch while waiting for Mama and Papa.

Happy 6 Years to us!

Nathan began his second round of preschool (minus the crying and separation anxiety associated with first round)–check

Justin had his well check and immunizations–check

Justin had a cardiology appointment and echo–check

Flu shot for Justin (Nathan is allergic to the egg in the vaccination)–check

Swine flu vaccination for the kids—maybe

Well check for Nathan–oops!

Call infectious disease doctor about Synagis (Justin’s two, so it is no longer officially recommended for him. But, is he still high risk considering his size and asplenia?)–

Research on local constraint induced therapy programs for Justin (bleh!)–

Start some exercise regimen to minimize evidence of my summer indulgences–