Home of the Four Trans

For the past year, I’ve been engulfed in Justin’s heart and heterotaxy condition that I hadn’t taken the time to research on the effects of his cardiac surgery related stroke.

I think I hit an all time low last week when I saw so little improvement on Justin’s right affected arm/hand and leg despite the three times a week sessions for the past year. Like any mother, I wanted the best for my child, and I didn’t think I was providing enough for him to reach his potential.

On this particular day, when I had hit a low point, I had observed in therapy how much Justin wanted to walk, but couldn’t. He had made all the necessary movements, but his body was not cooperating. He’d step forward on this left, then on his right, and collapse to the right because he didn’t have the strength, balance, or proper foundation in his right foot. My child was working so hard, but his body and brain could not make the connections to do what he wanted it to do. I felt defeated despite all the options that laid ahead of me: intense therapy sessions, ankle brace, second opinions, sensory integration therapy, constricted induced therapy. I didn’t know who to trust, or which programs to entrust my child in.

That night, after the boys had laid their heads to sleep, I sat in front of my laptop and cried. I had felt like the answer was in front of my face, but I wasn’t looking in the right place.

After the cry, my head emerged from the fog of hopelessness, and it became clear to me what I had to do (crying is cathartic!). I started researching about cerebral palsy and on the term hemiparesis and hemiplegia, conditions that have been freely tossed around by Justin’s therapists. Although the cause of Justin’s brain injury is different than children with cerebral palsy, the repercussions and therapy for recovery are similar.

During my research, I found blogs and websites dedicated to children with hemiplegia. I suddenly came out of the dark and saw that there were many children like Justin, and felt less alone. I am grateful for the Hemi-Kids Listserv hosted by Children’s Hemiplegia and Stroke Association, in particular because it has allowed me to connect with many parents on one medium to learn from their experiences.

I love the internet!

The most important thing I’ve learned so far is that children who’ve experienced brain injury may never regain full usage or function of their affected side–and, it’s OK. One parent explained to me how well her child is able to function with one “good” arm, and the other as a “helper” arm. He’s even able to beat his bilateral capable friends in video games one handedly.

You see, I’m not looking for perfection, I’m looking for answers and hope. I am so grateful for all those families who are brave enough to share their stories out there, enabling a bit of light in a sometimes dark world.

I will update as I learn.

Justin’s blood cultures came back negative as confirmed by his pediatrician and a St. Joseph’s representative, today. Whew!

However, Justin continues to vomit several times a day. I had him seen by his ped, today, and it seems he has a stomach flu. I will wait to see how he does over the weekend before freaking out more than I already am.

It’s sad. His eyes are not as bright as they usually are, and he constantly wants me right by his side. When he vomits, it goes up through his nose and he freaks out sucking some of the vomit back down through his throat. Hist vomiting is very concerning to me.

Nathan is at my parent’s house because I started to get overwhelmed. Justin was over-tired with red eyes, but refused to sleep because he wanted to keep up with Nathan who wanted nothing to do with his little brother because he doesn’t want his little brother to get him sick. Nathan almost poked a colored pencil in Justin’s eye while the two were fighting over it. The dishes and laundry are piling. I haven’t eaten. Blah.

Anyway, I will keep you all updated. Thank you for checking in. Also, prayers for Justin’s speedy recovery will be greatly appreciated. Thank you!

With these sunshine of faces in my life, how could I not find reason to smile? Of course, this was taken after the morning tantrum of “I don’t want to go to school.”

Brothers playing so nicely in the most unexpected place. Nathan’s precious car bed was threatened to be taken away if he did not shape up and get ready for school. He wised up and listened, and also found a silver lining in the partly disassembled bed. Justin came for the ride.

After Nathan finally left for school, Justin was left to entertain himself while Mommy calculated some our bills for our taxes. I wasn’t quite sure what Justin was trying to do when he was caught underneath one of the chairs, half in half out. I thought was trying to get out, but after further observation, I realized that he was trying to find his way underneath to fetch the ball that lost its way underneath the table. He mission was successful, and I was so proud.

I don’t know what it is about bubbles, but they’re so fun! The kids found tireless ways to entertain themselves with the billion bubbles machine I bought them. I needed to prepare dinner, so I let them play right next to me in the kitchen where I savored every bit of their sweet innocence.

This Mommy doesn’t quite understand the concept of the Easter Bunny, but knew that gift filled baskets were a tradition of Easter. However, the jam packed itinerary for Spring Break left us little time for Easter shopping, so I ended picking up some coloring books, crayons, and trinkets from a local CVS an hour before Mass started, and created one CARS and trucks themed basket, and one animal theme basket. The kids loved their gifts even though it came too late with all the tags still on it :). Nathan especially loooved his CARS cell phone that he had had his eye on for awhile. He also loved his Nascar coloring book so much that he brought it into Church with him.

After spending our day at Grandma’s house, we had a mini chocolate egg hunt in our apartment that night. Nathan requested to participate in hiding the eggs, which I allowed him to do, while Loi and I hid the remainder. There were a total of 3o eggs. Nathan found 22, Justin 8. 

They then were each allowed one egg to eat. Yummy!

I may not always be the most organized in planning these holidays, but I’m always sure to do something special for them..or, at least I try. And, I know they appreciate it so much. Who doesn’t love presents and chocolates?

It was a wonderful treat to have a family outing like the one we had at Legoland.

Justin couldn’t go on any of the rides because he wasn’t tall enough, but he enjoyed it all the same. The only ride he wanted to go on, but couldn’t was the Junior Driving School. Nathan was quite the coordinated driver for a 3 year old, and earned his first driver’s license :). Instead, Justin spent extra time at the stationary lego cars enjoying steering the wheel, and finding little buttons to press on for sounds.

Nathan went on 3 rides with Loi, while I spent time with Justin exploring bits of the park, looking at the cool things that were made from Legos. Of course, all the rides Nathan went on were car/truck theme related.

Nathan and Justin also spent some brotherly time playing with my sunglasses. So cute!

There are so many things to update on, but, I suppose the most pressing news is that Justin is holding a fever of about 100-101 degrees F, and has been to the ER twice in the past 2 days.

I noticed a fever and clinginess at about 7PM Saturday, after coming home from a birthday party. I decided not to freak out, took off his clothes, and took his temperature every 5-10 minutes. The temperature fluctuated between 100-101. There was a point when it went up to 101.9, so I called his Infectious Diseases doctor to call into the ER before heading over there. By that time, it was already 9:30PM.

Luckily, the ER was slow that night, enabling us to get in in a record 10 minutes after filling out paperwork. The fact that the doctor called in did not affect how long we wait in the ER; he warned me that he’d have NO CONTROL over how long it’d take for Justin to get a bed. He’d only get him in the system and discuss the protocol with the doc on duty. Regardless, after getting in, we spent about 5 hours in the ER before being discharged. But, we were discharged!

The usual blood draws for a blood culture, CBC, and CRP were done to look for signs of any bacterial infection. A chest x-ray was also done to check for pneumonia and fluid in the heart. All signs pointed toward a viral infection, but, we did not know the results of the blood culture, which would not be ready until the following day.

We had gotten home around 4AM, Justin’s fever had gone down, and we were able to rest easier.I had even taken Nathan to my Grandma’s house to pray for my deceased aunts, uncles, and Grandpa. We managed to stay out all day, and didn’t get home until 8PM. Loi was home with Justin. That night, the ID doc even called to see how Justin was doing, and Loi was proud to report that he was fine.

This morning, however, I got a call from the ER department telling me that the blood culture came back positive, and that I needed to come in right away for treatment. I called the ID doc first to see if Justin could be treated with him, but the clinic was closed. The ID doc was paged, and I was told that he’d call me back to tell me what to do. An hour had gone by, and still no phone call from doc so I started getting anxious knowing how fatal sepsis could be, if in fact Justin had sepsis. I called his office, again, and they told me to just wait for his phone call. 

OK, I am a mom with an asplenic baby who has a fever and a positive blood culture and I’m supposed to just wait? I am not an impatient person, but when it comes to my child’s life, the concept of waiting does not make sense. I headed out to the ER.

Before heading in, I called Justin’s pediatrician to get his advice. He told me to be safe than sorry and just check in while waiting for ID doc’s phone call. So, I did, and waited for 1 hour before a bed was made available to us. What’s worse is that the ID doc did call me, ten minutes after checking in, and I missed his call because the cell reception was so horrible! The message was: it is not necessary to take him into the ER, and that he only wanted another blood culture done. I could have gotten this done within 30 minutes at a lab! Instead, I waited for 1 hour for a bed, then another 3 hours before we were discharged! The ER was super busy with lots of sick kids and adults. 

Both the ped and ID doc had told me that the results from the first blood culture looked like a contaminant false positive because it was not consistent with the results of his other blood work. 

We are home, now, and Justin is his usual self. Again, we are waiting for the blood culture results, which should be available tomorrow. I am, as expected, very anxious to hear from the doc.

As I pray for Justin, I am also planning to see how I could be more efficient the next time around. I’ve already discussed with his pediatrician, and he was OK with me bringing Justin directly to him next time if the results did show a positive. Seriously, I was freaking out, even if it didn’t show on the outside because I did not understand how quickly the bacteria could spread, and I just wanted to keep my child safe. The scary thing is, I don’t think anyone could tell me how quickly the bacteria could spread. I’ve asked this question, and the docs have told me, “quickly,” and that it is an urgent matter that he be properly treated. Anyway, just doing the best I can, and praying that it’s good enough.

Please pray for our little Justin. Thank you!

One of my philosophies as a parent is to take my children on adventures at least once a day. Sometimes, the adventure can be as simple as a car race to the park. On Tuesday, it was a trip to the Aquarium, where we are annual passport holders. I suppose it was as much of an adventure for them to explore the variety of creatures of the sea as it was for me to push and carry them through it all by myself.

It turned out to be quite a pleasant day. I am proud to report that there were no tantrums, disobedience, screaming, or hitting. Do I have a secret? No, I took a chance in taking two boys out on my own, and I got lucky. It also helped that they were well rested with full bellies, and I had good timing ;). So what if my shoes didn’t match my outfit. The greatest triumph of the day was getting them out the door when they were still in good, energetic spirits.

When we got there, the main parking structure next to the Aquarium was closed off. We were directed to a parking lot seemingly miles away, and were offered a shuttling service to the Aquarium entrance. This is how Nathan experienced his first bus ride.

Nathan was such a good helper. After unloading off the bus, he helped me open the stroller by pulling open the latch so that I could kick the stroller open with one hand and foot (Justin was in the other arm). He’s 3 years and 8 months! I was proud of the way he was able to follow directions. I had the kindness of strangers help me carry the stroller off the bus both times.

Our visit to the Aquarium entailed:

A lesson with a diver about California’s sea life. We could barely hear him speak over the children’s talking and waving, with my Justin being the most enthusiastic. He didn’t care if the diver wasn’t looking at him, he kept waving until he got his attention. So cute!

Nathan’s mission find sharks and octopi.

Nathan’s endless questions about kelp. Good thing I took some biology courses in college that helped me explain some of the questions. Also, the little info plaques on the walls didn’t hurt either :).

Nathan’s endless questions about everything. I love that he asks so many substantial questions. He loves to fill his little head with info. Sometimes, I have to say I don’t know, and that we’ll have to read up on it. Other times, I’ll know the answer, or I’ll read off the plaques. I love learning with my children!

A churro break.

Frolicking in their water play area.

I didn’t get too many pictures because I haven’t mastered taking pictures one handed with baby in the other arm. I’m also not that great at taking pictures because I am so caught up in the moment when it happens. Most of the time, I take mental pictures. So, the experiences I have with my children are sometime just ours; just one of the perks of being Mom.

Happy Belated Chinese New Year (February 2009)

We were sitting in the car, today, with me in the middle of two forward facing carseats of our economy class sedan, with Justin to the right of me, Nathan to the left. Nathan, at the start of his overtired induced tantrum was banging on my arm with his fist, while yanking off my glasses. I was squished and tired, and didn’t want to fight anymore, so I shifted as much as I could to Justin’s side of the car trying to ignore the madness that was to the right of me. While my right side arm was being tortured, my left was being gently stroked and patted…with Justin’s right hand! I was so excited to see that he was able to open his right hand and lift his harm to repeatedly stroke and pat my arm. Every time he did, I said, “Awww, Justin. Thank you,” which encouraged him to do it more. This means he is becoming more and more aware of his right side!!!

Here are some other ways he’s shown progress in terms of right hand/arm awareness:

-When asked to pat at a toy with his right hand, he did so without any assistance from his occupational therapist, and without using his left hand first.

-During a session with his infant stim teacher, he attempted to touch and feel different textures on a book by lifting it towards the object.

-He uses his left hand to lift up his right hand, or to open it to put things in it.

-He brings his hands to together to play.

-He plays with his feet with his right hand.

I must thank the Lord, and for your prayers. The brushing technique was heaven sent for Justin; I think this is the main reason why he’s made so much progress in such little time.

Justin had his GI (Gastoenterology) appointment on Thursday. The purpose of meeting with his GI doc was to discuss his weight gain (or lack of) issue, and his acid reflux that seems to rear itself during Justin’s illnesses.

First, the weight gain issue. After assessing Justin’s weight and height, GI Doc found that he is farther from the normal curve for weight than height, so his slow weight gain is more of a nutritional based problem then a hormonal one. Also, although he is small for his age, he is proportional for his size.

Her recommendations for increasing his caloric intake is this: give him an appetite stimulant (medication) on days that he does not eat well to encourage him to eat, give him higher caloried (fried and buttered up) foods, and add Boost Plus (supplement) to his Pediasure.

So, in order for my child to obtain a “healthy”‘ weight, I must treat him with “unhealthy” foodstuff and medication. I couldn’t accept this for awhile. I refused to give Justin dallops of butter in everything that he ate, and endless bowls of ice cream and whipped cream. I was afraid of creating bad eating habits that would only harm him in the long run. I also think the Pediasure stuff is gross and wished that there was something like that in Organic. As for the appetite stimulant? Um, I resisted this for awhile because I wanted to see how we could do without it.

Here’s where perspective comes in. My kid is not growing. He does not eat enough. He needs every calorie not only to gain weight for his next surgery, but also so that his brain, muscles, and bones could grow and heal. He’s already developmentally behind as it is from his stroke and heart condition that he doesn’t need his lack of nutrition to hold him back further. So, even if the foodstuff and medication is “gross” for a normal, healthy kid, it’s great for mine because it will help him be as healthy as he can be.

It’s about finding balance. I’ve surprised myself at how creative I can be with preparing high calorie meals with dairy products, that are also rich in nutrients from vegetables, grains, and chicken. It’s also about taking one day at a time, and taking it as it comes; I cannot plan for his eating habits in the future if I don’t care of him today to allow him that future.

It’s about learning to let go even before he’s even left the nest.

Insert sad face and sigh here. Now, onward…

The second issue we discussed was his infantile acid reflux. Although Justin is not an infant, anymore, at almost 20 months old, developmentally, he is. Once he is able to get upright and walking on his own, the reflux will go away, also. Right now, the reflux seems to appear only during times that he is sick. So, we were given medication to help with this when needed, and were told to keep him healthy (not get sick), so that his feedings and weight gain will not be affected.

Thanks for checking in. Justin, otherwise, is doing OK…except for this cold that he caught from brother. Oh, brother!