Archive for the ‘Heart Disease’ Category

Heart Day 2009

Saturday, February 14th, 2009

Congenital Heart Defect Week is February 7-14. For all those in the CHD club, including heart parents, we know what this week is all about–spreading awareness about the prominence of this disease in our community, and how we can help to make changes to bring light to this chronic disease for the purpose of research and legislation.

Fact #1: CHD’s are the #1 birth defect in America. It affects about 1% of newborns — over 40,000 babies are born with heart defects in the United States every year. Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect — of those, 87 will be born with a congenital heart defect — that’s more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)

While over a hundred CHD survivors and their supporters congregate in Washington DC to help pass legislation, and many more organize and attend parties and fundraisers, I voice my efforts by sitting here on my computer at 4:30AM telling you a bit of our story.

Our story. Yes, CHDs is mostly about Justin in our family. But, CHDs also affect myself, Loi, and his older brother, Nathan. The guilt I carry, as a mother, is undeniable. It comes in passing waves, but, there is always that wonder of how did it happen? What could I have done to prevent it? How come I never learned about heart defects during my prenatal appointments and in my pregnancy books? Yet, I am tested for risk of Down Syndrome in my baby? Shouldn’t heart defects be #1 on the list since it is the #1 birth defect? If I decide to have another child, what are his chances of developing CHD?

Fact #2: Research on CHDs are underfunded. For every dollar provided by the National Institute of Health (NIH), only one penny is provided for pediatric research. Only a portion of that penny goes to support research on CHDs, the most common birth defect (according to the Children’s Heart Foundation).

We need more research to answer these questions, to learn the why, to improve the outcomes of surgery, to improve surgery/intervention techniques, to learn how heart medications (usually given to adults) affect children, to prolong their lives, to give them quality lives, to prevent CHDs.

Fact #3: CHD’s are the leading cause of defect related infant deaths. Not Sudden Infant Death Syndrome (SIDS).

Doctors need to be more educated about CHDs, and know the symptoms so that the children can be treated before it is too late. Newborns who have murmurs should have a pulse/oximeter reading before being sent home to test the oxygen level in their blood.

Fact #4: There are a shortage of donor organs and blood. Only about 30% of the children who need a heart transplant receive one in time . About 40,000 units of blood are used everyday, yet only about 5% of the adults, who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States — that someone is often one of our heart children (Congenital Heart Defects.com).

CHD children like Justin who have single ventricle anatomy must look to heart transplants as their last resort–but, that whether or not they’ll need one is unquestionable. From an optimistic viewpoint, his own heart could last him up to 15 years. Every time he goes into surgery and goes on the heart lung bypass machine, he needs donor blood.

Fact #5: CHD afflicted children and adults are not recognized as chronically ill people in the US. Over 175 CHD Survivors, their family members, and their cardiologists were brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care (www.learnaboutchd.blogspot.com).

Without recognition as a chronic illness, it is difficult for CHD patients to receive the care they need, especially when they don’t have insurance. With CHDs come a myriad of other potential problems. Justin currently sees 8 different specialists (including his heart surgeon), and receives physical and occupational therapy. It is likely that he’ll receive speech therapy as well.

I hope I have made it clear that CHDs are a serious problem that lacks awareness in our community. I will keep writing in my blog. I will keep talking about CHDs.

Ways you can help:

-make a donation to the Children’s Heart Foundation where 100% of donations are contributed to research about CHD.

-make a donation to the March of Dimes where  a portion will go towards research on the genetic link of CHD

-if someone is pregnant, tell them to talk to their pediatrician about congenital heart disease, and the signs and symptoms to look out for in their baby. Better yet, tell them to ask the hospital to check the baby’s SATs. A poke to check for bilirubin levels is more difficult, I think.

-mention that you know someone with CHD if the topic of birth defects come up (Justin, for one). You’ll be surprised how many people you know will know of someone, too. This will help heighten the awareness that CHDs are more common than we think.

-donate your blood.

-become an organ donor.

Thank you all for your support. We would not have been able to make it through without you.

Here is a glimpse of how far Justin has come thanks to the research and advancement in cardiothoracic surgery and medical care:

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Justin before first Open Heart Surgery. See? No line.

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8/18/07. 1 Day after first Open Heart Surgery (10 days old)

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1/18/08. One day after Second Open Hear Surgery. (5 months, 10 days old)

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2009. A wise, happy little boy.

So small

Friday, February 13th, 2009

Justin is really small. I mean reeeaaaal small for his age. He’s eighteen months, and I feel like he’s been a baby forever. And, no, I’m not just saying that because I see him everyday. Loi and I measure him (length and weight wise) often.

He hasn’t grown spectacularly well. His weight fluctuates up and down. He is now at a constant 18 pounds. As for his height? He’s about 29 inches. He’s a full head shorter than other kids his age. He is not on the charts for weight or height, as in he’s below the 5th percentile.

I wouldn’t worry so much about this if he were following his “own” curve, growing at his own pace. But, for a couple of times, he fell off his own curve, and this got me worrying.

Through the medical and personal accounts that I’ve read, CHD patients are expected to be smaller for their age. Through my experience, now I see why. CHD patients don’t normally eat that well because they often tire before eating enough. They’re gastro-intestinal system is not as efficient in absorbing food and distributing the nutrients and calories because they’re heart isn’t beating at its optimal. The calories that do get absorbed are mostly allocated to the functioning of the heart (which works harder than a normal heart), or the brain. So, with the little calories that they do consume, the majority goes to their heart or brain, leaving little else for the development of other parts of they’re body.

So, Justin’s small-ness can be attributed to nutrition, or the lack of.

What makes me wonder if it’s just Justin’s diet that is causing his inability to thrive is this: when I read about other CHD children, or ask their parents about their development, I find that although the children are small, they’re still within the normal curve. Justin is waaay below it.

Let me also point out that Loi and I are not particularly tall people. I’m at a borderline 5′0, and Loi is 5′7. With this observation, doctors are also quick to point out that Justin’s size may have to do with his parents’ petiteness.

Ok, fine. But, he’s NOT really growing.

This leaves me to wonder, with the inside of his body as messed up as it is (stomach on the wrong side, malrotated intestines, no spleen, hanging pancreas, large liver), not to mention his heart defects, I wonder what other systems in his body are affected, too. Most particularly, his endocrine system. As complex as the human body is, where every system works in accordance with the others, I wonder, how his heterotaxy affects his endocrine system.

I can’t find information anywhere about this. I’ve asked this question on the online support group board. These children vary in sizes and complexity, so it’s hard to compare.

My next resort, after speaking to his cardiologist and pediatrician, of course, would have to be testing. As in, poking and blood drawing. This is another can of worms I must think before opening.

Justin is happy. Should I just leave well enough alone?

Justin Highlights

Thursday, October 23rd, 2008

I haven’t kept much track of Justin’s age. In fact, I often forget how old my son is (14 months). There are 2 reasons for this:

  1. His Size. He’s been growing very slowly compared to other “normal” babies, that his size does not change enough for me to realize how much time has gone by. We’ve had him in this baby stage for a very long time.
  2. My Perspective. I don’t count the days, anymore…You know, the days before the weekend, before Christmas, before birthdays, before his next surgery. I take each day as it comes, and pray that that day and our following days are just as beautiful.

While I do not obsess so much over his chronological age, I do take note of his every development. It’s a joy to see how he’s growing physically, cognitively, and socially.

Here are some highlights:

Roller Baby: He doesn’t quite crawl or walk yet (but, we’re working on it), but that doesn’t keep him from getting into things, and moving from place to place. He loves to roll! He’ll roll to the cable box to push the buttons. He’ll roll to his brother to grab a toy away. He’ll off the bed so his Papa could catch him. We call him our Rolley Poley Ollie!

Babbling: He says a lot of ba, ah, ma. Lately, he’s trying to learn how to say Hi and Bye. I think he has the most beautiful sing song voice. Whenever I sing to him, his face lights up, and he responds by babbling in this cute singing voice.

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Waving: He can do the side to side wave, or the backwards to himself wave…on command! Yes! He understands. Very exciting.

Fake Crying/Whining: He’s beginning to know how to get what he wants…by crying or whining. The funniest thing is when he whines to get Nathan in trouble. After Nathan pushes him on the ground, or whacks him with a toy, or throws something in his face, he’ll look for me first to make sure that I had seen what had just happened. Once I start to scold at Nathan, then he’ll start crying for extra effect.

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Rolling/Creeping towards a toy fire truck.

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Stopped to pose for a picture for Mommy.

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Unsuspectingly gets whacked in the head with some very hard balls while posing for a picture. I was in the midst of taking a picture of a smiling Justin when Nathan came up from behind. Things can get rough around here.

Head Shaking: When I ask him a question, I’ll ask at the end, Yes? or No? If the answer is Yes, he’ll nod repeatedly with a smile on his face. If the answer is No, he’ll shake his head from side to side repeatedly with a smile on his face. Again, he understands…Very exciting!

Putting toys in the basket: He knows how to do this on command!

Thank you everyone for following Justin’s journey. Though these milestones may seem so boring to some, they are like little joy nuggets to us, and we want to share them with you.

He’s been through 2 open heart surgeries (BT Shunt and Glenn) in his short time on this earth, and twice, he’s passed on us. But, time after time, he’s given this life to live, and we are grateful for every moment that he has with us, growing and thriving.

I realize some are concerned about whether or not he’s there, with his cardiac condition the way it is, and with the damage from the stroke. I cannot say for sure because I do not know…I don’t think anyone does until he gets older. But, what he’s been showing us are great signs.

Please continue to pray for our little miracle baby.

Leaky valve and heart transplant talk

Thursday, September 4th, 2008

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.

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

I joined an online support group

Friday, August 29th, 2008

I’m done with being left in the dark about Justin’s condition.

To my disappointment, I have learned that I cannot depend on the doctors to tell me what to do with this heterotaxy child of mine. I mean, he has A LOT of issues in addition to his heart defects. Recall, Justin has:

  • malrotated intestines
  • left-sided stomach
  • mid-line liver
  • a hanging pancreas
  • a portal vein that crosses over his duodenum

The malrotated intestines and left sided stomach were confirmed by an x-ray. But, it was not until his pediatric surgeon, Dr. James Stein, went in to perform the LADDS procedure (for his malrotated intestines) did he find the other anatomical problems.

Since then, I’ve always wondered what other issues Justin might have that I do not know about. I wonder, what type of tests can be done to see if he has any hormonal or metabolic issues. I wonder if he has any other anatomical abnormalities relating to his lungs, kidneys, and reproductive organs.

No one has addressed these issues while the doctors seem to focus only on his heart. While I understand that his heart defects require the most urgent care in order for him to live, I also question if the rest of his body’s abnormalities affect his heart as well. I wonder, if we address the other issues, would he have a better chance of living, and would the doctors gain better insight about his heart and its function.

I joined an online support group to learn a little more from other parents who have experiences with children with heterotaxy. Through their experiences, I learn what questions to ask my doctors, which doctors to see, and if Justin’s feeding issues are “normal,” and how I should address these problems.

With the online support group, I suddenly don’t feel so alone in the issues that I have to deal with Justin. I gain a little a bit of hope through their insight.

At the same time, I am opening a door to more heartache as I expose myself to stories about those who do not make it. However, being a part of this support group is like being a part of a group of friends. This symbiotic relationship allows us to lean when we’re weak and provide a shoulder when we’re strong.

Well-checks for my August babies

Sunday, August 17th, 2008

For those who don’t already know, Nathan and Justin both had the same due date, August 15th. Interesting, right? However, Nathan came out naturally on the 13th, and Justin was induced on the 8th. I’ve always wondered if I had allowed Justin to come naturally if both my sons would have the same birth dates.

Anyway, now that their birthday extravaganzas are over, we are back on track with medical issues. On Friday, they both had their scheduled well checks. To minimize the amount of loading into the car and driving to the doctor’s that we would have to do, I decided to schedule both their well checks for the same day.

Here are the results:

Nathan weighed in at 33 pounds and measured at 38 inches tall, placing him at 60th and 64th percentile, respectively. I’m very happy about this since Nathan is known to be a picky, lazy eater.

Of course, Nathan is not Nathan without his usual quirks. Of all things, he was most afraid to get on the scale to be weighed and measured. He backed his butt up against Loi, arching his back, refusing to get on. So, we resorted to the following measures: First, the 5′8 office assistant had to get on the kid-sized scale himself to demonstrate what would be done once Nathan gets on. No harm was done. Yet, Nathan Boy still refused. Second, Loi tried to carry him on, but he’d pull his legs up, just as he did as an infant when we encouraged him to stand. Though Loi was able to get on the scale, with Nathan wiggling all about, no success was made with the weighing. I returned to the examining room to wait for him, knowing my child well enough to realize that you cannot force or coerce him to do anything. He just has to decide for himself if he wants to do it or not. Soon after, he comes running into the office to find me, and agreed to me carrying him on the scale to be weighed. As for his height, he allowed the pediatrician to walk him to the scale, hand in hand, without a single complaint or wriggling, to be measured. Loi and I stayed back at the examining room confused by our son’s moodiness. So, after all that drama, he had one booster shot. And, guess what? He didn’t make one peep…only a scrunchy face. Typical Nathan.

Justin weighed in at 16 lbs 11 oz and measured 27.5 inches. This was all very concerning to me because that means that he only gained 5 oz in 3 months, and barely grew an inch. His weight is no longer following the curve, but is below it. So, basically, he hasn’t gained any weight.

The pediatrician, Loi, and I discussed his feeding habits at home, and about his recent cold, and teething, and they came to the conclusion that his inability(?) to eat, or lack of eating has slowed down his weight gain. I, on the other hand, am worried that it may be something else. In the past, he’s been able to gain at least 1/2 a pound a month. We are going back to fortifying the formula to increase his caloric intake. We are encouraged to feed him a lot of formula, versus spending too much time on eating solids, although he should have both. We were given the OK for feeding him diary and egg products, but still no nuts or seafood. And, for those wondering, he still needs to be on formula since it will provide him with more calories and vitamins than regular cow’s milk. His ability to digest the cow’s milk is another issue we need to look out for. It seems he may be on the (expensive) Good Start formula for another 6 months.

In a month, we are scheduled to return to the peds for a weight check. Argh. Feedings and weight gaining are such big and frustrating issues. However, I hope that it’s nothing involving his GI tract, although I would like to see a GI doc for his opinion on why Justin may be eating less and throwing up more, now.

Anyway, will keep you posted. Thanks for checking in on our little ones.

Inspirational CHD Story

Thursday, July 24th, 2008

While I was discussing the Montessori method with the school’s head coordinator that I’m enrolling Nathan in, I found an opportunity to discuss how the Montessori method may help Justin’s cognitive, motor, and other physcial developments. Per my readings of Dr. Montessori’s translated writings, her method was developed to help children gain autonomy, especially those who are “disabled.” Justin is certainly not disabled (not in my book), but he is definitely delayed because of his heart surgeries, stroke, and poor heart function. I wanted to gain information about how the program was designed for the younger 18 month children, and how it may help Justin. In the process of learning about the Montessori method, I also learned something else.

When I mentioned Justin’s heart defects and saw her facial expression unaltered, I knew that she had some insider information.

“Does he have Tetrology of Fallot?,” she asked me.

I then explained to her, shortly, Justin’s heterotaxy and multiple heart defects.

Then, I asked her if she knew someone with ToF. She said, “Yes, my son.”

At that point, we engaged in a conversation about her son and his journey.

Q: When did he have his surgeries and how did he do developmentally afterwards?

A: He’s now 18, had his first surgery at 10 months old, second at 14 years old to replace a valve. He’ll continue to have valves replaced as they wear and tear. Although he was small for most of his life, he caught up after the second surgery as his heart became more efficient in pumping oxygenated blood throughout his body. He was able to army crawl up to 10 months, but after surgery was forced to crawl off the ground to be off his chest. No one could tell that there is anything wrong with him just by looking at him. He just graduated high school. The only developmental set back was him being diagnosed with ADD at 14 before his second heart surgery. She believes that the lack of oxygen throughout his body affected his brain activity and behavior.

Q: How is it dealing with surgery as he gets older?

A: She’s a proud, tough mama. It was never difficult for her to tell her son to get up and go when he’d rather whine in bed of his pain. She knew he was in pain, but she also knew that he could push himself. In preparation of the second surgery, she did not tell him of his surgery date. She planned a Hawaii trip and told him on the plane on the way there. By the time they got back, he had no time for anxiety as the surgery was the following day. He was upset with her, but, it worked out fine. (I think I will have to include Justin in on the plans.)

Q: Where were your surgeries?

A: The first was at Millers Children Hospital in Long Beach by Dr. Bethencourt (I was originally assigned here by my HMO), and the second was at Children’s Hospital of Orange County by Dr. Gates (I considered this surgeon). She was amazed by how much medical technology had improved between the first surgery and the second.

What I learned? I’m not alone and there are many families dealing with children with heart defects. I realize that our sons’ conditions are not the same, and neither are their prognosis (Justin’s is worse). But, with each story is so much hope. Medical technology is amazing. I am in complete awe of how much opportunity Justin has been given at life already. Three or four decades ago, he would have been sent home for “compassionate care” without a chance.

Thanks heart mamas for sharing your stories. I’ll keep praying and hoping for more miracles.

Back to work

Sunday, July 20th, 2008

I went to work today. Yes, work. For eight hours, 3pm-11pm.

It’s been a year since the last time I actually worked, and it felt a little…liberating.

It’s been a year, but I still got it. Aside from some things slipping from my mind, my organizational skills when coming to running a (200 people) wedding reception is awesome. I had forgotten how good I was at timing things and getting things done on par or beyond the bride and groom’s expectations. Of course there was a team of servers, kitchen staff, cooks, etc., etc. But, it still amazes me how I can handle so many people and not feel overwhelmed. And, I handle what others may perceive as stress pretty well. Tooting my own horn, that’s for sure!

I suppose this life at home with my children does make me question how I’d relate to the “real world” if I ever were to re-enter it. I question whether I’d forget my skills and quick mindedness. I wondered if I’d ever forget who is me as the role of Mommy in Little Boys Kingdom has quite defined me.

But, when the bride and groom hugged me at the end of the night, thanking me for “everything,” I knew I had done my job well, and that I am still very capable. Every aspect of the itinerary was followed flawlessly, from lining up the bridal party for the grand entrance to the timing of the bouquet toss. Yes, I am goooood.

When Loi asked me if I “missed it,” though, I had to pause a moment to gather my thoughts. If by ‘it’ he meant working as a wedding coordinator, yes. If by ‘it’ he meant being at work for long hours six days a week and never seeing my children? No way!

At the end of the day, my children come first and my personal fulfillment comes last. I wouldn’t say I’m completely selfless, however, because being with my children actually creates great personal fulfillment.

Nonetheless, I am still me, a girl who loves to sing, write, dance, daydream, read, talk too much, learn, and work. So, yes, I do miss work sometimes as it allows me to fulfill an aspect of me.

Do I want to give up my time with my little Bubba and Googleybear? Uhhhhh…………how about in small doses? Let’s start there.

I am definitely feeling the anxiety(of losing my children or of them getting sick if I’m not there)burn away a little and gaining the confidence to conquer the world, again. Really. Because of them, I feel like I can do anything.

Now, I must tend to my poor feet that withstood 8 hours worth of nonstop walking and standing in 3 inch heels. What was I thinking? Too eager to “dress up” again, I suppose.

“Justin is optimistic”

Sunday, July 6th, 2008

My younger sister made this comment after noting how happy Justin was even after throwing up. Instead of freaking out about how gross it was to have all this gunk come out of his mouth and smother onto his (and Mommy’s) clothes, he smiled and scrunched his face in jubilation.

“He was probably thinking how much better he felt now that he’s thrown up whatever made him feel icky.”

There’s a thing or two to be learned here: 1) My sister is a genius 2) My Justin is a model of how life should be perceived–with optimism. He’s been through more physical trauma than I could ever imagine (he has the scars to remind us of it), been poked and prodded at by people who approach him with such friendliness (who can he trust?), has rotten egg smelling medicine (Captopril) injected into his mouth 3 times a day, along with other not-so-pleasant tasting medicines….Yet, he always has the endurance and spirit to smile.

There’s this picture I have of him a few days post-Glenn: his scar is deeply bruised, purple, he had just been extubated, there’s a (unexplainable) bruised eye, suffered a stroke. He turns to Loi’s I-phone, as if there were not a care in the world, and smiled, this lopsided smile with one eye squinting (because half of his face was affected by the stroke). It’s heartbreaking, but so beautiful. His smile is always a reminder to appreciate the what is, the light of every moment of every day.

Medical Records

Friday, June 13th, 2008

Justin’s medical history–dates for surgeries, doctor’s appointments, important events, changes in medications, notes–is all completed and up to date by my recollection. The doctor’s notes and discharge papers are somewhat of a mess in a separate binder in plastic coverings. This, I will work on next. Then, I have to order his records from Children’s Hospital LA and OC.

Though this is such a daunting task, keeping up with all these dates and events and paperwork,I know I have to do it. I realize this when every time I see a different specialist, even while in the hospital, they ask me for Justin’s (very long) medical history. I can proudly recite it from memory. Everything that ever happened from the day I received news of his diagnosis inutero just rushes out like water from my mouth. “Slow down, there,” a GI Doc once said to me. Everything is important. Everything that has ever happened defines the Justin today. And, I think it’s important for them to know the little pieces to see the big picture.

But, there will be a time when my memory of such horrific, sad, unpleasant events will fade. Then, there may be a time when Justin must know his own history to repeat to his healthcare providers while I may not be there to do it for him.

It is hard for me to believe that he’s only 2 months shy of 1 year old. Judging by the thickness of his 3 ring binder and his extensive medical history, you’d think he’s an old man. We’ve been through so much with him in the past 10 months, I feel like it’s been years….not months.

Sure, I don’t know what the future holds. But, it doesn’t hurt to prepare for it, right?