Archive for March, 2008

CHOC PT Eval Update

Thursday, March 27th, 2008

So, Justin’s behind a few months (he’s in the 4-6 month range) in his physical skills, but that’s to be expected since he’s been in the hospital for almost half his life.

Life really does go on, though. With Nathan, I was really obsessed with every milestone. I made sure to track his abilities month to month on Baby Center. It just so happened that Nathan surpassed every milestone (except the walking one. His feet didn’t even touch the ground until he was 13 months old) early for his age group. He’s like a little man…sometimes, I forget he’s only 2.5 years old.

Justin still has so much room to grow that I’m not truly concerned. And, having seen him almost on his deathbed makes me appreciate how vibrant and alive he is smiling and kicking. With all the atrocities his little body has been through, I’m proud (and still in disbelief) that he’s come this far. Oh, and the fact that he’s such an inspiration–to me especially–just makes me beam with pride.

Here’s to another beautiful day with my two little boys.

A Sunny Disposition

Wednesday, March 26th, 2008

Sunny, warm, breezy California weather beckoned me for a little stroll. Feeling quite ambitious that morning, I loaded my two bundles into our *new* double stroller (I think I have a stroller obsession), and set out to conquer the hilly roads of our track and the busy sidewalk of the Pacific Coast Highway.

My destination: the famous Ruby’s Crystal Cove Shake Shack.

I realized it was only 9:30 in the morning, too early for milkshakes. But, we need a little field trip to escape from all the clutter of toys, clothes, and stacks of mail. So, we walked, passing joggers with their dogs, elderly couples with their hand holding, and photographers with their cameras. To the right of us were the waves of the ocean crashing against the sandy shore resulting in white froth, sailboats drifting in unison with the horizon, and parents chasing their children to the water. To the left of us was the busy Pacific Coast Highway with cars, big and small, rushing by and the multi-million dollar homes perched upon a hill.

Justin was asleep; he’d just finished his morning meal (I had planned it that way so that I could spend time with Nathan). Nathan and I spent our walk there pointing out airplanes, helicopters, birds, lizards, cars (he names each car specifically referring to the vehicles in his favorite show, Bob the Builder and movie, CARS–his association skills amaze me!).

When we arrived fifteen minutes later, we ordered a chocolate milkshake for him and a pineapple milkshake for me. We shared a bench looking out into the horizon and told each other stories of what all the characters on the beach were doing and where the sailboats, airplanes, and birds were going.

According to Nathan, the airplanes were going home and the birds were going to look for friends.

Justin continued to sleep.

As the sun slowly made its way over our heads, I decided to start making our way back (as I realized I’d be pushing a double stroller with about 60 pounds in occupancy…plus the diaper bag…up. hill.).

Nathan started to calm down, an antecedent to him dozing off–he was quiet.

My mind started to wander. There I was, a relatively young person walking among affluence…I mean, the expensive homes, cars…on a weekday. I saw the looks (well, I always get looks since I look like a teenager and have two kids in tow) like, uh, what are you doing here? Shouldn’t you be in school? Are those your kids? (I get asked this often and am told that I am too young to have kids. Uh, I’m 2 years shy of 30–not that young.) They hear me refer to myself as Mommy, forcing themselves to give a second glance…”So, she’s not the nanny?,” I imagine them thinking.

When I crossed through those guarded gates of the community of track homes that morning, I was leaving behind what I felt like I did not deserve. The trail that I walked on, parallel to the ocean, belonged to everyone. As I allowed my mind to wander, I realized that I did not feel ashamed or guilty for embarking on this simple pleasure, on a weekday, nonetheless, because I was investing my time into the well-being and growth of my children…my most treasured assets. I was giving Justin that fresh breath of salty, ocean air, and the feeling of warmth from the sun against his precious face. I was giving Nathan my thoughts, my time and attention (that’s all children really want from their parents), and exposure to the real world.

I had given up so many weekends from the age of 17…I had given up a lot of myself, really, during that time. I was always at a place I did not want to be because there was always a better place I thought I should be at–I could be helping at the church, attending mass, spending time with Loi and my Nathan, my grandma’s house, on the couch reading books or writing, pursuing a Masters or Doctorate. But, I continued on that career path thinking that that was where I was meant to be…but always feeling so empty, like something was missing.

Many may think, “Poor little rich girl.” I had every material possession and my education, and barely a justifiable struggle to speak of. My turmoil and struggles were indeed internal. I was always doing something productive, working long hours, producing monetary gain, playing with Nathan, cleaning up the house, folding laundry. I almost did not allow myself time to just sit and be. At the same time, I never felt like I was doing enough.

As I walked that trail, I realized how far I’ve come since Justin’s come into my life. I no longer fill that emptiness with things and measure my self worth by it either. I’ve found myself again, that little girl who once wrote stories as gifts to her teachers. I’ve found my heart again, in loving my faith. I’ve found my passion in helping the downtrodden.

Sometimes, nurses and staff at the hospital joked that we should use the turmoil he’s caused us in the hospital as leverage when he’ll start acting out as a teenager. Like, he better be thankful that we were there for him and feel bad for all the stress he’s caused us. I know, it was only a joke. But, truth is, I should be thanking him for all that he’s given me, for helping me find myself again, and realizing the true meaning of love and life…for helping me shed of all the superficial fluff surrounding my physical shell and way of thinking.

Along that trail we walked. While I surely did not deserve a multi-million dollar home, I did deserve to be by that beach, on that very day with my children…and they deserved it too with their time with Mommy. We deserved it because we realized a bit of life that is not truly comprehended or appreciated by others…that sometimes, there is no need for separation of who we are and what we do. And, when that is realized, our truest rewards are reached.

Appointments, Appointments, Appointments

Wednesday, March 26th, 2008

Appointment filled week:

Monday: Nathan’s orthopedic appointment for his trigger thumb and middle finger. We are scheduling a (minor) surgery where he will have to undergo general anesteasia to fix it. Hospital stay should be an hour; recovery will take about 3 days.

Tuesday: Justin’s first occupational therapy evaluation at CHOC Rehabilitation Center. He is at the level of a 4-5 month old (although he’s almost 8 months. But, it’s OK! He’s super cute and interactive.) Justin was more interested in getting the attention of the therapist than achieving his tasks. He was constantly smiling and looking at her and batting his hands at her.

It’ll be another 2 weeks before we’ll get an appointment for occupational therapy sessions.

Thursday: Justin’s first physical therapy evaluation with specialist at CHOC Rehabilitation Center.

Monday 3/31/08: Justin’s cardiology appointment with Dr. Rebolledo for an echo and check up. Crossing our fingers and praying that the leaky valve hasn’t gotten any worse and his pumping action is better or stable.

Justin’s Progress

Tuesday, March 18th, 2008

Without any type of therapy yet, Justin is making progress on his own. Yesterday, he was ooo’ing and ahhhh’ing out of nowhere. My younger sister was talking to him and asked me, “Did you hear that?”

Sure enough, for the rest of the day and this morning, he was making noises in response to me talking and to his toys.

Justin is a mellow kid and everything about him is easy. But, the task of changing his diaper is soon to change. He is rolling from side to side now to reach for things–pillows, toys, blankets– as I attempt to wipe his bum.

I’ve been in contact with the RCOC intake coordinator who has informed me that Justin will need to undergo a full evaluation. Because he’s been through so many different events in his short life that may have all affected his development, they need to assess him to decide the best plan of services for him. So, now, I’m waiting on her to call me back with an appointment with the evaluator.

“Babies get stressed out?”

Monday, March 17th, 2008

My younger sister’s reaction to my explanation as to why Justin has copious specks of gold throughout his head of otherwise jet-black head of hair.

I had brought this hair color issue to Justin’s pediatrician’s attention this past Friday. Although I was glad that it was “only” stress and not something else, I couldn’t help but be reminded of how Justin will never fully escape the psychological trauma of his open heart surgeries and hospital stays.

To relieve us of our worry and apprehension as we saw our child laying helpless, frozen, and bruised in the warmer, nurses would tell us that “he will not remember.” But, in that very moment, my child was experiencing physical changes to is body. And, though the feelings of pain, fear, sadness, and anxiety may not be remembered in his conscious or even his sub-conscious once we leave the hospital and resume our “normal” way of life, the events that have triggered those feelings will always be present and ingrained in his brain.

So, back to the doctor’s office. I responded to the doctor very much the same way my sister did when he gave me his explanation as to why Justin had those gold specks of hair.

“Stressed out? What do you have to be stressed out about, Justin?”

Only my response was not due to the this incredible idea that a child, let alone a baby could get stressed out. (I mean, all they have to do is eat, poop, and sleep, right? )

We’ve been home for only a month and those nights and gruesome sights that we experienced at the hospital seemed years ago. We really have settled into this sort of normal life…well, normal for us, anyway. I’d lie if I said that we’re so normal that I find myself “forgetting” Justin has congenital heart defects.

Sure, I still lay next to him to make sure he’s breathing evenly. I check his cheeks, eyes, fingers and legs to see if he’s looked more swollen at one point in the day than another (is it fluid retention from congestive heart failure or is he actually gaining some meat on his bones? How can I tell? Should I call the doctor? Are the medications working?) I obsess over how much he drinks and eats (everything is measured…how much does he have left in the bottle–5cc’s…10?) And, of course, the cardiology appointments that we’ve been having every 2 weeks also remind me.

But, Justin is such a happy baby. He’s all smiles all the time. And, for this past month since we’ve been home from the hospital, he’s been growing physically and cognitively; “thriving” is the word, I think. I’ve been singing to him, playing with him, doing stretches with him, dancing with him, talking to him, allowing Nathan to play with him, taking him for walks, and taking him out to see the world (i.e.; parks, Irvine Spectrum, model homes, restaurants,The Market Place). I’ve been filling his life with perspectives beyond me, hospitals and our bedroom window. And, how his eyes have opened in great awe to all the simple but wonderful things around us.

I have forgotten the “hospital Justin,” the post-operative bruised up Justin, the sad, anxiety-filled Justin.

The heart catheterization and Glenn procedure seem to be of a distant past, memories of which I never wish to conjure up if I could help it. I had made myself forget of that painful time for myself and for my Justin that I did not come to think that the open heart surgery had in fact caused him such tremendous stress that his hair would show proof.

But, his body and mind will not let him forget. Though my child will not “remember” of the tremendous physical manipulations done to his little being, his body and mind will remind him; they will tell him of what a warrior he was and is.

Regional Center of OC Assessment and Ear Infection

Saturday, March 8th, 2008

RCOC Assessment

Justin had his first meeting with an intake coordinator from the Regional Center of Orange County on Thursday to evaluate whether he is eligible for services such as physical/occupational/speech therapy for his apparent developmental delay (due not only his stroke, but also to his heart condition which already places him as a “high risk” case for developing delays.)

Most of the meeting was me having to explain Justin’s medical history from birth to the second heart surgery. Then, Justin was physically evaluated by the coordinator to see if he could:

  • grasp things (yes, but only with his left hand)
  • track things from side to side and up and down (yes, very well)
  • reaches for toys (yes, but only with his left hand)
  • lift head (yes)
  • pushes body up with arms (no)
  • roll over (no)
  • babble (no, but he tries–just has a very soft voice)
  • squeal, grunt, make sounds other than cry (no)

So, he’s 30% or more behind for his age, which would make him eligible for the Program. Well, regardless of how far behind he is he’s still eligible because he’s a “high risk” case.

But, here’s the thing: because he’s six months old, and the OCRC never received any referrals or medical information about him from the hospitals (which they normally do within the first month after the child is born and diagnosed), the process may take longer for him to receive the services. They may have to go through the whole process of obtaining his medical records to verify that he is a “high risk” case. Children like him normally are evaluated between birth to 3 months of age.

Although I am a bit irked from being lost in the shuffle among the many other families who also need government assistance, I also feel truly blessed for having the means to financially care for Justin. And, I feel even more blessed that we had the opportunity to have Justin diagnosed in utero so that we were able to square away some of the insurance issues that laid ahead for us before he was born (i.e., allowing us to choose the surgeon and hospital).

What it all comes down to is me wanting Justin to get the physical/occupational/speech therapy he needs so that he does not lag further behind. I’m still in contact with CHOC Rehabilitation Center for their services. But, they also need more information on Justin to be faxed over to them (i.e.; medical notes and report of is diagnosis).

As for now, Justin’s arm is getting a lot better. He can move it, but doesn’t really attempt to reach for things with it. He likes to use his left hand more (future left hand baseball pitcher, perhaps? hehe)

Ear Infection

Justin had a scheduled appointment to get his RSV shot and a booster for one of his immunizations on Friday. But, turns out, he developed a low grade fever the night before from an ear infection (as a result of having this lingering cold), so we have to put those on hold. The irony is one of the vaccines was for preventing ear infections. So, he’s on a stronger antibiotic to hopefully treat that. And, of course, worry rat me is sitting on pins and needles, watching every boogie that comes out of his nose making sure that the cold is not getting worse.

I’m sorry if this is getting old. But, pray for Justin to get better…please? Thank you!

Mother/Son Dance: “My Valentine”

Tuesday, March 4th, 2008

You all know that in my heap of dreams is the dream to share a dance with each of my sons on their wedding days (simple enough, right? I hope so…).

Well, I’ve chosen a song for Justin and me: “My Valentine” by Martina McBride.

You’d think after 8 years in the wedding business, hearing this song week after week as I watched the newlywed couples share their first dances, I’d be sick of it. But, the song has new meaning to me.

Check out the lyrics:

If there were no words
No way to speak
I would still hear you
If there were no tears
No way to feel inside
I’d still feel for you

And even if the sun refused to shine
Even if romance ran out of rhyme
You would still have my heart until the end of time
You’re all I need, my love, my Valentine

 

All of my life
I have been waiting for
All you give to me
You’ve opened my eyes
And showed me how to love unselfishly

 

I’ve dreamed of this a thousand times before
But in my dreams I couldn’t love you more
I will give you my heart
Until the end of time…
You’re all I need, my love, my Valentine

 

And even if the sun refused to shine
Even if romance ran out of rhyme
You would still have my heart until the end of time
‘Cause all I need is you, my Valentine
You’re all I need, my love, my Valentine

This dream, I realize, may not be seen to fruition. So, I seized the day, today.

I turned the I-tunes up on the computer and danced right there in our bedroom with my Justin cradled against my chest. I was in my blue jeans and a faded black V-neck fitted shirt. Justin, fresh out of the bath tub, was in his light blue stretch pants and beanie, and a shirt that said “I Need My Space.”

Who needs all the hoopla with the flowers, decorations, lighting, dance floor, tuxes, and expensive evening wear? I had everything I needed right then and there….I had my little man…warm, alive, looking in my eyes…and, us, happy.

Leaky Valve Revisited

Tuesday, March 4th, 2008

PETITION FOR PRAYER: Keep praying for Justin and his little heart. Pray that his leak will improve and that his heart will beat stronger and stronger by the day. I may feel helpless, but certainly not hopeless. My belief in the Lord will get my family and our little Justin through this. Thank you.

Some say no news is good news. Well, not in my case.

Heres my problem: I THINK too much. So, if you can imagine, I’ve been living in my head envisioning every possible scenerio that will occur since I’ve heard some unfavorable news about Justin’s heart as of late. My THINKING has drained me of any energy needed to even post the news.

Here’s the heartbreaker: Last Thursday, Justin had a scheduled echocardiogram that showed that his AV canal is leakier than pre-Glenn. The cardiologist also reported that his heart is not pumping as strongly as it once had.

I’ve been using all my energy contemplating the meaning of all this and planning my next move on what I’ll do to help this child of mine. (Oh, yeah, and tending to Nathan through his *almost* asthma attack, calling doctors, setting up appointments, paying medical bills, working on personal projects, etc….it never ends…thank the Lord for that!)

Heart transplant and everything that surrounds this issue is surely one of my worries. But, the cardiologist assured me, today, not to “obsess” over it too much as it is too premature to discuss at this point. Surprisingly, though, this is only in the back of my mind and I have NOT been obsessing over it. Rather, I’ve been thinking about how long he’ll have with the heart he has, whether he’ll make it to the Fontan (yes, but, how successful the Fontan will be is another story) or his first birthday even (yes, based on how his heart is now). And, I’ll admit, I’ve been thinking about whether it’s worth going through the Fontan if it will only mean he’ll need to get more blood products or that he may get sicker, which may compromise whether he’ll get a donor heart or how well his body will accept it.

The thing that makes dealing with this news so difficult is from the outside, post Glenn, Justin seems to be doing MUCH better. His color is rosying up, he smiles, plays, and is gaining weight well, and loves to eat! He’s been gobbling up his cereal like a little champ. The news about his valve being leakier just brought to reality what his outer appearance is only masking–how messed up and incredibly WRONG his insides are. No matter how much I want to PRETEND he’s this perfect little baby who will have this wondrous long life to defy all odds, I KNOW reality is he may not even have a decade.

But, you know what? I’m tired of being sad, crying inside, and feeling helpless. I made a decision this past Friday. I am on a mission to SPREAD the WORD about CHD (Congenital Heart Disease) on a NATIONAL LEVEL. The more the greater community is aware, the easier it will be for us to gain funding for research and obtain infant hearts for transplants. Tune in next time to hear about my pending campaign that is in the works with a friend I met on Learn About CHD. But, we need all of your help!

For now, please take the time to refresh your memory on how greatly CHD affects our children at March of Dimes.

All of you may already know of someone close to you who has a child with CHD and not even know it! I know everyone that I’ve opened up to has come up to me to tell me they have a family member or friend who has a child affected.

FACTS:

About 40,000 infants (1 out of every 125) are born with heart defects each year in the United States (1). The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger.

Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths (2). However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects.