Home of the Four Trans

Elijah Daniel Update: Good news is he’s back at home and is on track for surgery as scheduled. Not so good news is he still needs the surgery. Please continue to pray for his family, Mama and Papa Porta, and Baby Elijah Daniel.

Mama Porta of Elijah Daniel’s blog is not only heartbroken over her own child’s sickness and upcoming surgery, but she is also mourning the loss of her heart friend’s baby, Helena. It was only 2 months ago when I happened upon this little girl’s blog. Eagerly, I read from beginning to recent because I was so excited to find a child who was doing so well after her 2 heart surgeries despite some road blocks along the way. Just this past week, she had her third and overcame with “flying colors,” according to her parents. Within days, during recovery, she went into cardiac arrest. She was almost 2 years old.

I left the blog open on the computer and went to sleep with prayers in my head for all the heart babies of this world. Loi woke me the next morning with,

“The little girl passed away.”

“I know,” I responded.

“I don’t want to lose, Justin.”

Then, he hugged me. Over Loi’s shoulder I saw my little man waking up beside my big man, kicking his little left leg, up and down. I watched as he squirmed from side to side while rubbing his eyes with his fisted hands.

“He’s waking up,” I told Loi.

Loi left my side and turned to Justin who was then looking intently into his father’s eyes and smiling. Every morning, this is the ritual:

he’d wake up.

upon finding us, he would stare, bat his arms, and squirm until we acknowledged him;

then, he’d pull his legs in and scrunch his body in delight

and smile at us.

Our life with him on this earth has been a mere 8 months. Eight months–that’s only 2% of my entire lifetime. Yet, we have these endearing things with him, rituals, memories. Aside from my time with Nathan, everything else in my past pales in comparison to these few months that I’ve had with my boy. It is as if my entire life had been lived in a haze until he came along, and then I really started living. What will happen when this life leaves me? How will I have the strength to let go?

The longer we have, the greater the hope, the harder it will be…to let go.

You know the old saying, “It is better to have loved and lost then to never have loved at all”? Well, is it? Is it better to have all the years of getting to know my baby only to lose him? Or, is it better to not have had the opportunity to know him at all? Would miscarriage or abortion been easier…on all of us?

My decision at 19 weeks gestation was to give Justin the life he always deserved. The fact that he survived and was born to this life was a blessing, a miracle from the Lord. I cannot tell you if it would have been easier any other way. But, the way we see it, we got the better end of the deal because we got Justin.

Nineteen months. Helena’s parents had nineteen months with her. Oh, I can only imagine the memories they shared. Their grief is not one I can begin to understand at this point in our journey. But, I know with all that that child had given them, the love, the laughter, they, too, would not have wanted it any other way.

Please have a moment of silence in your busy lives, free from all your worries and endless thinking, and pray for this little girl and her family.

This past week, I worked on typing up a consolidated form of Justin’s medical history in his (almost) 8 months of life on this earth starting from the day he was born up to his latest cardiology appointment. I had the opportunity to steal 1.5 hours while Justin was napping (Nathan was with his Auntie at work), in which time I was able to finish only up to his follow up with cardiology after his LADDS procedure–that was done in his second month of life.

As I typed up the dates and the events following those, I could not believe how much had happened in such a short amount of time. I did not realize that Justin had been in the hospital for only 22 days after that first surgery–at the time, it seemed like forever. Each day dragged on and on and on like there was no end. Every subsequent day only felt like a continuation of the previous day. The sun would rise and fall, the nurses would change at each shift, and doctors and surgeons would make their bi-daily rounds. The world went on inside and outside of the hospital–people went home, ate, slept, worked, played.

But, for people like us who had children in the ICU, life did not go on…it stood still…until our children were out of the hospital. We did not know how to be normal, to breathe, to eat, to sleep, to think of tomorrow. We could not see beyond our very own child laying in that hospital bed. Nothing else seemed to matter, but him getting through that day and the day that he’d be discharged.

I remember an attending physician at CHLA telling us to go “get some rest” because Justin was stable and that there was a team of doctors there trained to care for him. He said he knew that this was easier to say for a person who did not have a child in the ICU, but assured us that we’d be doing everyone some good if we just went to get some rest. Another attending at CHOC offered the information that parents who spent prolonged time in the ICU had symptoms similar to those who suffered from post-traumatic war syndrome. “So, what are you trying to say?,” I asked. “You should get some rest,” she said. It was important to these doctors that our minds were fresh and our bodies were well rested to make crucial decisions for our child.

But, you see, when our child’s life was hanging by a thread, when every inch of his being depended on this already weakend organ, his heart, blinking almost didn’t even seem like an option. I mean, Justin’s heart literally stopped within a blink of an eye, without prior signs. So, to relax a little, or to sleep, even, was certainly out of the question. This was our mentality every moment we were in the hospital.

When we were on the road home to visit Nathan or when Loi would stop into work to see how everything was going, hospital mode followed us. Life around us continued, but this feeling of dread and end lurked within us.

We’re back to “normal” mode, and a month goes by terribly fast, now. I cannot believe that 2 months have already gone by since we’ve been discharged from CHLA. This is not to say we are not without glitches (like the fact that he chokes while he eats sometimes and arches in pain and threw up a couple of times. Oh, and I took him to the pediatrician the other day because his lips were bluer than usual), but we are certainly not in heightened combat mode all of the time.

Hospital mode is behind us and I do not wish to enter it again for as long as I can help it. But, living in the hospital is a reality, still, to others. Sick children continue to exist.

Just earlier today, a little 13 month old boy, Elijah Daniel, from a heart blog that I follow was unexpectedly admitted to the hospital for his extremely low oxygen saturation levels and cold/flu. His surgery not scheduled for another 2 weeks. But, it seems as though it may be bumped up to this week. I ask that as you pray for us to also pray for this little boy.

And, here’s an exercise for you all: Just as you’re ready to complain about the wrongs in your life (how you do not have enough money, wealth, recognition, achievements, time..things), take a moment to breathe and appreciate. Appreciate your freedom, your health, your company, your being. Then, all else will not seem to matter. For, it would be a terrible waste to realize how good you really had it only when you’ve already lost it.

There’s a specific reason why I don’t hold Justin when meeting with his cardiologist, Dr. Rebolledo–I tend to lose my senses. With the boy full of chubs on my lap, I get a little distracted by and a lot attached to him. I attended the cardiology meeting sans Loi this past Monday, so I had no one to hand the little bundle over to. So, as I brought up the sensitive issue of heart transplants to the doctor and my worry of how the timing of his condition may affect how well he’ll receive a donor heart, I started to stutter. It was embarrassing, to say the least. I think I was stuck on, “I don’t want…I don’t want…I don’t want….” for like a minute before finally blurting out something about how I didn’t want his condition to get so bad that it would compromise how well he’ll receive his heart and whether he’ll actually be eligible for one.

Dr. Rebolledo really is a nice man and didn’t even try to jump in to fill in the blanks for me; he just sat there patiently trying to listen to what I had to say. Help me!

It’s still too premature to discuss getting Justin on a list for a donor heart. The echo showed that his leaky valve and pumping action are in about the same condition (severe, mildly depressed) as his last echo a month ago. The doc just upped his Captopril and Lasix to help with his heart function and made plans to meet again in June (ahh!) for another echo and checkup.

If I thought about his leaky heart and the weakening of his pumping action all the time, I’d drive myself nuts, not knowing when his heart will just give out. So, I don’t…well, not obsessively, at least. Instead, I just look at his beautiful face and focus on the fact that he’s been making a lot of progress. In fact, today, he just started babbling for a good 5 minutes with me…just because! And, the fact that he’s here, at home, smiling and happy makes me happy, too. All I can do is take it as it comes…can’t think too much of the future. There are too many variables that will affect the outcome of his life that there really is no point in speaking of the future and the what ifs.

I continue to pray for miracles, though. Won’t you join me, too?

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.

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.

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.

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!

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.

Nathan’s on the john, Justin’s asleep in the crib…

I have 3 minutes to give you all a quick update before it’s time to run again.

After 26 days in the hospital, we made it home safe and sound to our humble abode on Monday, February 4, 2007…ahhh, home.  HOME is where my babies and Loi and me are…where we can all be together.

Since then, Justin’s made a lot of progress with gaining mobility in his right arm and turning his half smile into a full one. The stroke to the left side of his brain has affected the right side of his body. So, when playing with him, you can see the significant difference between the two sides of his body. But, when just looking at him, you wouldn’t be able to tell that there’s an inch wrong with him. He’s back to his usual self (better, dare I say?) smiling, playing, and tracking everything in his sight with his great big eyes. Oh, yeah, and he’s eating close to how he was before the whole feeding issue 3 months ago (that may be associated with his arrhythmia). It’s like he hasn’t been through anything at all!

Today, Justin turns half a year old! We’ve come a long way, baby…

His lips turn blue at times and the nailbeds on his right hand are bluer than the left. Sometimes, he breathes a little faster than usual. Last night, I slept with him for the first time since we got home (because I’ve been sleeping with Nathan in his car bed the previous nights). I stayed up listening to his breaths until it slowed down to normal. The worries are there, I don’t think those will ever go away. But, we’re home, he’s happy, smiling, and enjoying his life being carried and cuddled.

Our prayers had been answered: we were home before Chinese New Year. We were able to bring in the new year as a family.

Thank you all for your prayers. Please continue praying for us.

Love,

Jen

Today was a busy day.

Justin’s been having some issues that we finally found some answers to today.

Limp Right Arm=Symptom of Stroke

Yes, you read right. Justin had a mini stroke that affected the function of his right arm. We had noticed the limpness of his hand while in the ICU immediately after the nurses removed the arterial line from his wrist. The Nurse Practitioner attributed it to a possible hematoma that caused stiffness in that area. Days had gone by, I kept asking, nurses and doctors kept saying it looked fine. Finally, I asked the surgeon during rounds and he called for a neurologist to look at it. Today, it was confirmed through a CT scan that Justin did in fact suffer a stroke to the left side of his brain. According to the neurologist, the blood clot did affect a “good part” of the area. There are too many medical terminology I’m too exhausted to recount.

Good news is: with Justin being so young there is hope that he’ll regain function of that arm. The neurologist pointed out that it will never return to “normal” function, though, that it will always be weak.

A part of me died with the part of his brain

Of course, the news was devastated me. I was angry, but didn’t know who to be angry at. I wanted someone to blame, but it was no one’s fault. This is just how it’s meant to be for my little Justin. Why? I’ll never know.

I couldn’t look at him, or hold him, or anything with him. I felt like he wasn’t him anymore. The person I wanted him to be may not be. I gave birth to this child; this bright, fully functioning child and human intervention messed it up. I thought, what if we hadn’t even gone through with the first surgery, would his heart have healed on its own? It’s like his body is resisting every medical procedure all along the way. Recall the first surgery with the bleeding debacle, then the heart stopping after the catheterization, and, now, all this, after the Glenn.

I thought, what if I didn’t know, and I just brought him home after he was born. How would his life have been different?

I lost a part of my child today I think I’ll never get back. His path has forked. He’s now traveling a road with new obstacles to overcome: physical and occupational therapy to regain use of his arm, meeting with a new group of specialists including neurologists.

What the future holds is now so clear: the unknown. Justin’s experienced many odds against him along his entire journey that goes to show there’s no preparing for the future.

Things are Just Meant to be

Eventually, I got over my self loathing and pitying and opened up my eyes. Things really do happen for reason. I was meant to learn of his condition early to allow myself time to get over the shock and mourning so that I could concentrate on his care after he was born.

Here’s the thing that turned my faith around today: Justin was called for a CT scan 2 days prior to his Glenn procedure because he failed to wake up after 24 hours of being off the sedative, fetanyl. The preliminary results showed no abnormalities. Had we not had the CT scan from prior to surgery available to compare to, it would be unclear as to what caused his stroke: his heart stopping at CHOC or the Glenn surgery.

Pondering the what-ifs, thinking irrationally of what could be allows me an escape from this reality that Justin has an incurable disease. I want so badly to undo what I did to him and the contemplation allows me to live a life (in my imagination) of how things would be if I had just done things a little bit differently.

Truth is, the things happened. I found out of Justin’s heart condition without great effort at a routine ultrasound. I was led to an amazingly talented cardiologist who diagnosed Justin almost to the tee. I was allowed time to prepare–physically, mentally, emotionally. With those events occurring the way it did makes me believe that any other path was non-existent. Regardless of how Justin’s multiple heart defects came to be, his life on this earth with Loi and me was meant to be.

Weak Cry, Raspy Voice=Symptoms of Vocal Cord Damage=Difficulty Eating?

The Ear Nose Throat (ENT) docs were involved to assess Justin’s eating difficulties. The cardiology team were suspicious that Justin’s vocal folds were damaged from either the intubation/extubation process or from the open heart surgery. An objective study (using a scope threaded down Justin’s nostril to his throat) showed that Justin’s vocal folds are still intact. However, the docs did find that the muscle ontop of the vocal folds were a bit swollen which may add to his irritability when feeding. What’s worse is that the acid reflux (yes, it’s back with full vengence) may be irritating this area more. (So, Justin is being treated with more Zantac (to protect the stomach from acid) and Eurhythimiacin (sp?)(an antibiotic to help in the motility of the stomach, helps it empty quicker).

So, what now?

The Logistics

Now that we have some of the loose ends tied away we can prepare to be discharged. The Nurse Practitioner is coordinating some education for us before we leave: management of the NG tube and pacemaker. It will still be a couple more days since we’re now entering the weekend.

TheFamily

The baby Justin we left home with almost a month ago is gone. The baby Justin we’re bringing home has rhythm problems and a pacemaker, an NG tube, and part of his brain damaged. The baby Justin we’re bringing home is a bit loopy, out of it, tired, sad. That smile that I had been longing to see has faded.

We lost a part of our Justin along the way. In moments like these, when I just want to let go of all hope and faith, I hang on tighter. It seems almost unreasonable and irrational to do otherwise. I have to believe that all that has happened to this innocent, unknowing child has all happened for reason. The Great Physician has a plan and I must let it be.

I would be lying if I said I am not sad. I am. Our hopes and dreams of what Justin could have been (a champion golf player, a doctor) died with that small part of his brain.

But, sadness does not overwhelm me because I still have him today.

So, we hope that in a few days, we’ll be able to pack our bags (and our little Justin into his carseat), head home, and start our new lives together.

Remember that scar that everyone was so concerned about in the beginning? You see why it is the least of our worries? There are far more obstacles Justin must face than the superficial. And, those things we pride ourselves over–sigh–those are nothing because they cannot give us that true joy and sense of accomplishment that our little Justin can.

If there is one message I’d like to impart upon you all today, it is: do not take your children for granted. They are these special human beings that need you and love you. The fact that they’re so young, with they’re whole lives ahead of them, that there will be plenty of missed opportunities to make up is no guarantee.

I’d give anything to have that sense of security that tomorrow, when I wake up, Justin will be there. Watching him graduate from college in his cap and gown, dancing a mother/son dance at his wedding, are things that I speak of, but always in fear of never experiencing.

I suppose regardless of his condition, that fear will always be true. My life on this earth is no guarantee either. Whether or not he’ll choose to go to college or decide to marry is no guarantee. The future is no guarantee.

As much as it hurts sometimes to prepare for a future that would include Justin, we do. That worry of whether he’ll be there in that future cannot stop us from our pursuing our endeavors in work and in life to create the best possible for Justin.

Only a small percentage of children experience some damage to the brain when undergoing heart surgery. My son, Justin, with all the odds against him with his physical condition already, had to fall within that small category. The three main risks of open heart surgery are: bleeding, stroke, and death. Justin’s experienced 2/3 already. Am I fearful of what the next heart surgery may bring? Definitely. But, I’m pushing on, letting go of the past, hanging on to today, and dreaming of the future.

We’ve hit a bump, it’s slowed us down a bit, but we’re moving forward with greater momentum. That’s all we can do…keep moving forward.

Please continue to pray for us and our family. Thank you.