Home of the Four Trans

Disneyland (with my mom for her birthday. Millionth time for Nathan, second time for Justin. Many firsts for all.)

Dentist (one cavity for Nathan, a follow up in 3 months for cleaning and check up for both boys. Justin needs to be on meds (maybe) for cleaning).

Orthopedist (still no recommendation for an ankle brace. I’m getting a second opinion)

Cherry Picking (2 hour drive, 10 pounds of cherries, 30 american dollars, priceless experience)

Funeral (so sad, i could barely sleep, she was only 42, survived by a 6 year old son)

The First Last Day of School for Nathan (can’t believe we made it through the year! i am so proud of my firstborn!)

Nathan’s Last Playdate of School Year

Nathan’s First Birthday Pool Party (Nathan played with some of his classmates the kiddie pool because he does not yet know how to swim, his lips turned blue (yikes!) so I pulled him out after 1.5 hours. A few adventurous boys splashed in the main pool, and one almost drowned (YIKES!))

Graduations (a neice from K, and a nephew from 8th. I almost cried at the 8th grade graduation ceremony, but really tried not to. 8th grade is where childhood ends, and adulthood begins, or so I see it. And, time flies! I knew this boy when he could barely speak and still in diapers!)

Pacemaker Check (the usual telephonic thing done every month. It is getting harder to keep Justin quiet and still. He goes for the phone receiver every time, and screams AH! if I don’t let him.)

Movie in the Park (we saw only half of Tale of Despereaux because it started getting cold. But, the experience was quite romantic, even with kids)

Celebrated Father’s Day (Loi worked during the day, but we enjoyed some pool time and a family dinner with my parents and siblings, and opened Father’s Day gifts (cards and favor coupons) from Mommy and Nathan. I didn’t have time to have Justin make anything (bad mommy!)).

Dermatologist Appointment (Justin developed one tiny speck of a mole that I wanted checked out. Nathan has a lot of moles that I wanted checked out. All clear. Dermatologist also noticed how improved Nathan’s eczema is; it is only on his feet and hands.)

Celebrated the Ordination of a Priest (who was also my childhood friend. I asked him to pray for my family and Justin).

Wedding (groom is loi’s cousin, lovely couple, beautiful speech by groom, boys splattered my champagne satin colored dress with milk and orange juice, Justin made an outburst during the speech when all was quiet.)

Out and About at an Outdoor Shopping Mall (Fashion Island, where Nathan fell into the Koi Pond while playing a game of ‘chase the birds’ with another little girl. I had just warned him for the 10th time to stop running around the pond when he rounded a corner and fell in sideways. The pond was only 12 inches deep, but still, so dirty. In retrospect, I should have made him leave, but he had made a friend and I was so proud of his improved social behavior…Nathan is the bookworm type, and Justin is, well, still learning to be more like his brother in that department.)

Therapy Sessions for Justin (he’s made some progress that I will describe in a future post)

We’ve certainly been busy. While things can get stressful at times, I’m happy that I can maintain a sense of normalcy for my boys with all the medical things that go on in their lives. Nathan may not see as many doctors as Justin does, but he certainly is affected by the medical hoo-ha that surrounds Justin’s life–therapy, doctor’s appointments, ER visits. I’ve also been enjoying my time with them. They’ve been growing and doing all sorts of cute stuff.

Here’s one before I leave you:

N: Mom, I will love you for free.

Me: (confused) For free?

N: Yea. I will love you for free.

Me: For free? Aww, thank you, Nathan for loving me for free.

N: Yea. I will love you for free for only one thing. If you let me sleep in Mommy’s bed.

Me: (I knew there was a catch) Thank you for loving me for free. But, you have your own bed.

N: (Smirks)

Nice try buddy!

Thanks for checking up on us!

A not-for-profit organization called California Heart Connection hosts a picnic once a year for the last 9 years as a way to bring together  Southern Californian heart families to exchange practical and inspirational information about their experiences. The founder of this organization has a child with Hypoplastic Left Heart Syndrome.

I am so grateful for her efforts in organizing this event because the event not only allowed the parents to create contacts with one another, but it also allowed the children to interact with others that have had the same experiences as them.

At Justin’s age (22 months), he cannot quite comprehend the trials and challenges that he’s faced, already, in his tiny life. Also, it is true Justin fashion to flash his signature squinty eyed smile and wave, even to strangers; he’s just a happy, go lucky kid. So, I suppose being among other heart kids doesn’t quite faze him at this point in his life. He just wanted to play. For example, while sitting on a floor mat surrounded by miniature cars and airplanes with Nathan, he noticed another child plop down on the mat across from him. He hurriedly scooted over to make friends. Now, the funny/sweet thing about this interaction was the way Justin tried to catch this other boy’s attention. Because he cannot quite produce “real” words, yet, he just sat there cocking his head to one side, and sticking it into the boys face, all the while grunting, “m, m, m,”  to get the boys attention. He also picked up a toy and tried to give it to the boy; sharing is his other method to make friends.

As his mom, it was nice to see him play with other kids his age that stand about his size, and not towering twice over him. It was nice to talk to other parents that inherently understood the underlying worry and issues that come with having a child with CHD, and not have to worry about the other person feeling sorry for you or your kid. It was nice to see that we aren’t alone. 

Nathan also enjoyed his time putting, and running around on the playground.

We met single ventricle women two in their twenties, one of them married, one in her fourties. We met children and adults who had pacemakers. We discussed surgeons and specialists, medications and treatments, insurance and government aid. We (2 other heart moms and I) decided that our children, who are about the same age, will go to Camp Corazon together.

I did not meet one family whose child experienced a stroke, though.

Here are some heart family quirks I recognized at the picnic:

One mom pointed out the chubs in her son’s leg, and was so proud because he had been eating so well while on an appetite stimulant (like me and Justin!).

Another tentative mom discussed a leaky valve that her son has that has gotten worse (like Justin’s had prior to OHS 2), causing his O2 sats to drop, which will require surgery to remedy (Justin’s leak cannot be fixed, but alleviated with medications).

Another mom cried because she felt lost, not knowing what to do with her insurance situation, and finding the best medical care for her daughter (at one point or another, I think heart families agonize over this detail in the grand scheme of CHD).

Parents of a 14 year old boy with a Tetralogy of Fallot diagnosis just discovered the syndrome connected to his heart condition through genetic testing. After years of learning disabilities, speech impediments, and developmental delay, they finally found out why (although Justin’s heart is the greatest concern to his health, it frustrates me that his doctors use his heart as the culprit for many of his ailments). 

I got a glimpse of CHD from the patient’s perspective:

They don’t remember the surgeries they had as kids.

The 14 year old boy with Tetralogy of Fallot had his last surgery at 9, and does not remember anything about it, other than he had the surgery.

A twenty something woman remembers how many procedures she’s had in her lifetime (11), but does not actually remember her surgery.

The don’t resent their parents.

I met a CHD patient in her twenties, who is now a nanny for a CHD boy. She described how sad it is for her to have to hold down the boy when he needs to get a shot. But, she doesn’t remember that her parents had to do the same to her when she was little.

They think, “Whatever, Mom.”

One patient’s mom explained to me how she worries about her daughter riding on a bicycle because she has a pacemaker in her abdomen, and if she were to jam herself against the handlebars, it would not be risky. The patient just waved her hand at her mom as if to say, “Whatever, Mom.”

By the end of the four hour day, the kids were getting restless for their naps. We gave each other hugs, and exchanged phone numbers and email addresses. All in all, it was a fruitful day, I thought. We met some wonderful, inspiring people.

Neurology

The doc said something quite poetic in response to my worry that Justin is cognitively behind: “They say the eyes are the window to the soul. When I look into his eyes, I see [great potential].”

Although poetic, I am not so sure I am convinced with the logic.

Anyway, I cannot quote the end exactly because both Nathan and Justin were a great distraction during the entire consult as they were chasing each other around the cube of an office, fighting over a remote control car controller, that did not have batteries. As usual, I was holding Justin under his armpits as he attempted to catch is brother with his left arm.

The distraction, though, provided the doc an opportunity to observe how Justin interacts with his brother, and his environment. She noticed how alert and motivated he was. His eyes followed his brother throughout the room. Even though he couldn’t walk very well, he was determined to get what he wanted. He was tireless! We were in consult for 1 hour and 15 minutes, and they were at it the entire time!

In her opinion, based on her observations and the area of Justin’s stroke, regardless of what the tests have shown, he is not cognitively affected by the stroke. She is confident in saying that he is able to process the information presented to him even if he is not displaying his understanding. This may be due to his personality, or lack of interest for a learning method. For example, he does not like to focus on books or flashcards. She suggested that we do more social activities with other kids his age or enroll him in daycare so that he could learn from other children, and be exposed to more things in a different setting.

I had some concerns about seizure activity, and described those episodes to her. She said the descriptions do not fit those of seizures, but she referred us out for a 20 minute EEG, anyway. If Justin does have seizures, there is a 50% chance that the EEG will pick it up, so the test itself is not that accurate. I contemplated whether or not the procedure was necessary, and she insisted that we do it just to know.

I inquired about speech therapy, and she encouraged us to have the pediatrician write a prescription for him so that he could have a head start.

Ophthalmology

Justin’s infant teacher had concerns about Justin’s vision since he’s been having trouble pointing out familiar objects in books and on flash cards. It is actually not uncommon for children who’ve had injury to the brain to experience some sort of field cut in their vision. 

The examination (that included prying Justin’s eye open with what I’ll describe as eye prongs while he yelled an screamed) showed the following:

-a bit of astigmatism in the left eye, which is normal for his age. I’ve learned that the eye is one of the last organs to grow in the human body, normally changing shape until about mid twenties.

-he responded to light and objects presented in front of him, and to his peripheries.

The doctor feels, at this time, that Justin’s vision is OK. However, according to him, a formal field cut test cannot be performed until about 7-8 years of age. So, he may have it, but they cannot tell for certain at this time.

I have learned that the field cut test may actually be done at about 3-4 years of age. At this point, I think Justin is seeing enough doctors, so I will not pursue another doctor’s opinion until I see further delay in his ability to recognize objects.

Upon entering, I had handed the doctor a “cheat sheet” that included Justin’s diagnosis and medical history, a roster of  all his doctors, and medications that he’s currently taking (he really appreciated this and told me that he was thoroughly impressed). Referring to that sheet, I asked him how any of his other ailments may affect his vision or eyes. He told me that with cardiac patients, there is a risk of developing broken vessels in the back of the eye (?). He vaguely mentioned this, then said that his vision should be the least of my concern. I told him, “Yeah, it is.” But, it is still a concern that I worry about because it pertains to Justin’s health.

But, onward we go.

UPCOMING EVENTS

Justin and Nathan has dentist and dermatology appointments coming up this month. Stay tuned for that! 

Don’t worry, I let my kids have fun, too. I’m looking into swimming lessons for the kids for the summer. I am also taking a tour of the local early intervention contracted institutions (ICEC) this week to get a feel of their group therapy/parent participation preschool for Justin.