DMD Moms

It was another well-deserved Saturday morning when a notification icon on my new phone shows a red number beside it. Sooner I realized it is from the Messenger app and when I opened it there were like 5-8 messages waiting to be read. Some more than a year old already, some from people I know, others from people I choose to continue to ignore. But there’s one that caught my attention the most. It was from someone I had a chat with more than a month ago using our laptop, she invited me to join their Facebook group. I would normally shy away from such invites but this time I eagerly agreed.

It was DMD Moms. As the name implies, the group is mostly composed of moms of kids with DMD just like Marcus. This is our second online contact with others who have the same case as we do. The first one was Muscle Dystrophy Philippines but DMD Moms seems more personal and active–one you would expect when you gather a group of chatty moms. That same day, I informed wifey about it and in no time she joined the group as well.

While being the latest members of the group, it didn’t take long before we see familiar stories. Stories of despair, stories of strength, stories of hope, stories of love and commitment. According to the one who invited me, the group has currently less than 30 members, us included. We also learned that some are located close to where we live so a meeting could soon happen and when it does, it would be the first time Marcus would meet someone who also has DMD. We are looking forward to it.

***

For the second time, I got a new phone courtesy of wifey. While I’m waiting for the MyPhone store to replenish its Rio batteries, wifey had secretly ordered something from Lazada. So here’s me with a new Flash Plus 2 which is more than enough to run my Kindle. Well, it made me discover the benefits of the Facebook  and Messenger apps. Oh, I tried some selfie while alone at work but camera didn’t make me look good. I wonder if there’s like Photoshop or the popular beautify setting like what most of my Facebook friends use. You’ll know when I found it. Out of the box, it’s a good phone so far.

***

Mood: 3/10 Honks! (Pain on my right back is almost gone.)

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Blood Results Are Down

The results of the blood test made last weekend is out and there is good news. Both CK & CK-MB levels are down compared to the previous results. This third test has the lowest so far. The baseline for the normal values vary from one online source to another but I made the graphs below to illustrate how significant the latest results are.

Yes, those are thousand percents versus normal.

According to Mayo Clinic, the normal CK level within the age range of Marcus is 150-499. Using the highest limit, Marcus Creatine Kinase (CK) level is just 2000% this time. Relatively high but it’s way better than the result prior to it.

CK-MB is likewise favorable.

CK-MB level follows suit. To explain what CK-MB is I would liken it to a story most of us have probably heard when we were in grade school. Remember The Leak in the Dike? CK-MB is basically a measurement of a leak which means that ideally there shouldn’t be any level of it in the blood result.  Normal blood test results should  show almost zero.  Mayo  Clinic says that  males would have a  reference  value  of < or =7.7 ng/mL. That’s 7.7 nanograms per milliliter–a lot smaller than a single tear drop. The CK-MB test results we got from Hi-Precision Diagnostic Clinic are in Units/Liter (U/L) and internet sources say it cannot be directly converted to ng/mL unit which means the percentage on my graphs could be off (those are rounded off figures anyway).

My wife and I could only assume which factors attributed to the improvement in the blood test. It was after the second test when the doctor prescribed to double the dosage of the Co-Q10. Marcus has been taken 200mg every night since then together with an intake of Alpha-Lipoic. It was also during this time when Marcus began to have frequent sessions with the manghihilot. The skeptic in me couldn’t see that there’s a direct benefit but there’s nothing to lose. 

And there’s one thing that could highly likely affected the results. The doctor’s advice prior to taking each test was to minimize Marcus’ physical activities and we just realized that sometime in February this year he totally lost his capacity to stand and walk on his own. Since then, he has remained seated either playing games or watching TV. In this case, being immobile was both a bad thing and a good thing. Sigh.

We are yet to see the doctor to interpret the results but for now we are thankful that it wasn’t the result that we were expecting. Please continue to keep us in your prayers.

***

Hi-Precision Diagnostics has been accommodating us very well so far. The closest clinic to us now is their branch in Sta. Rosa, Laguna wherein the same professional and friendly personnel took good care of Marcus. Kudos to this company.

***

Mood: 3/10 Honks! (If miracles come true…)

 

 

 

Is it Wheelchair Awareness Day Today?

My Facebook timeline shows that a year ago today I posted The Wheelchair Didn’t Stop Them and interestingly other posts related to wheelchairs appeared as I scrolled down. So I am now wondering if it is wheelchair awareness day today. Is it?

Mentalfloss.com reports that Xbox will soon feature avatars of people on wheelchair. I am quite sure that Marcus would be very happy to see such on Xbox though it is more likely going to be for Xbox One consoles only looking at the icon on the flags.

I can’t wait to see Marcus see this appear as one of his avatars. (Image from mentalfloss.com)

The Lad Bible also posted a video from a helmet-mounted camera of a motorcycle rider stopping at a crosswalk to aid a guy in a wheelchair cross the street.

The world would be a better place if we do one small good deed at a time. (Image from The Lad Bible)

There are people, however, who are either ignorant or just insensitive to the needs of the handicapped. Like another photo that Top Gear Philippines posted today about one of those people who learned how to drive but never learned to read the signs.

Which part of no parking is hard to understand?

***

Mood: 5/10 Honks! (Storm’s coming.)

A Bored Post

I checked the clock and the day has just gone past its first 30 minutes. As usual, my short trip to the parking lot was full of anticipation. In a few hours, when I wake up inside the car, my night shift ends and once again, it’s the weekend. For the nth time, another two work-free days coming in close. Like any participant of this rat race, I look forward to Saturdays and Sundays.

Look forward to. Three short words, an anticipation of something exciting or just plainly to express relief that once again a somewhat boring routine will once again end—more often than not, to be started by another routine. Maybe life after all is a cycle of routines, boring routines (oh pardon the pun, the redundancy, the pleonasm).

Let’s face it. Anything that is routine bores. Even those doing the most intense in the eyes of other people would yawn at some point of their activity. I wouldn’t be surprised if triathletes get bored at some point of their run (“Ho-hum, I think his tribike is better than mine”). CEOs would get tired seeing the same range of profits thus the explainable craving for more (“Check our credit rating, call this guy from Dun and Bradstreet…”). And there are in fact artists who hate their own famous songs—I googled, mentalfloss.com has a list. Yup, that’s just how boredom works.

So what do other people look forward to at the end of the day, at the start of their mornings? How about our son? Such thought struck my mind when I remembered Marcus as I caught myself staring blankly at the colorful sweet ‘n sour wriggly worms in the convenience store’s shelf—few minutes after my broken MyPhone screamed its ever annoying alarm tone. His life cannot be Xbox and Roblox and Lego games all the time. I know that sooner or later even our new cable subscription will become lame and boring. More so, that starting this week is when every kid in the neighborhood goes back to school except him.

There must be a way that we can bring some new routines to Marcus’ life. We must make more effort to make him look forward to something exciting, if not new, in his daily routine. I have already suggested to him that he starts reading books each day so that he discovers something other than those coming from his YouTube feed (FYI, he has started his own channel). At the onset, as we have expected, he protested at our (boring) idea but yesterday I heard from wifey that he is excited to spend his one-hour reading period this Monday. Our fingers tightly crossed.

School year 2015-2016.

***

I eventually brought home the Potchi gummy worms and Marcus said to his mom that the candies are right out of their Slither.io game.

***

Woke up in the wee hours of the morning when I noticed Marcus stretched out in bed and I realize just how taller he has become.

***

Mood: 4/10 Honks! (The lambanog did not do its job, will need more sleep later).

More Than Just Two Front Teeth

The two front teeth had to go. At the age of seven, Marcus’ set of teeth had been all strong, almost perfect, with no sign of degrading until one day my wife found one new tooth coming out behind his upper front teeth. So yesterday, the two front milk teeth finally got extracted to let the new one take its normal place.

Just like his first trip to the same dentist, no tear whatsoever was shed on his first teeth extraction. Props to the pediatric dentist who took time to explain to Marcus on what to expect during the whole process—that’s on top of our similar discussion while on our way to the dentist’s clinic inside the SM mall. It would have been a better if his cashier gave us PWD discount.

Missing teeth, yes. Charm, no.

The experience was more awkward than painful for Marcus as he wouldn’t want to be seen toothless in school. The good news, or bad news, he won’t be inside a classroom together with his classmates anymore.

It was Monday, last week of October, when he asked us if he could stop going to school. We saw it coming as we observed lately that he finds it more difficult to wake up, let alone rise on his own but we decided to wait until he tells us about it because we can see back then that he still likes being in school despite his condition. While his request made it official that there will be no more sleepy trips to school, for both of us, his teacher and the school’s principal were kind enough to allow him continue studying at home if he wants to. Last week he took his last exam and said goodbye to his classmates. Most of them cried, yes, including the boys and his teachers.

Look ma, no hands! (He was Batman last Halloween but unfortunately we arrived late and did not catch the villains, I mean, his classmates.)

With the absence of worries about grades, something easily took over his study period. Minecraft. Other than his XBox, Marcus now has his Minecraft PC. This PC version of the sandbox game is actually a whole lot better than its XBox 360 counterpart as there are free maps and mods that can be downloaded and installed. Surprisingly, in a matter of weeks since I purchased this game as a reward for his good grades in school, he can already install the mods and maps by himself. He was quick to learn to remember and type the path AppData.minecraftsaves (and mods where he can extract his mods) to install his maps. Well, it lasted until he broke the HP laptop keyboard’s S key, and X, and A, and a couple of other frequently used game keys. So just like his two front teeth, he lost his HP laptop. The latter should teach him a lesson to control his emotions, to take good care of his prized–in this case, pricey–possessions.

To be honest, parenting Marcus is now tougher. A whole lot tougher, trust me. We figured that ‘spare the rod, spoil the child’ approach is now out of the question. Disciplining him has to be done the other way and sometimes it gets frustrating. The heart and muscles of kids with DMD are sensitive and are degrading faster over time. This means that we are doing our best not to upset Marcus. We do our very best not to make him trip or fall, we don’t want him to stress nor hurt his muscles and even his heart and especially his emotions. So how do you parent a child with such condition, one whose body is frail but with a personality so strong? Sometimes I wish it’s the other way around.

If the tooth extraction went well, as if nothing happened, the recent blood extraction result was the complete opposite. While he seem able to take the pain of the pierce of a needle, we soon found out that Marcus’ dystrophin is leaking wildly relative to normal level, and it is worse than before. In April this year we were looking at 15,000 U/L and in October it has elevated to 30,000 U/L. The normal level is 150-150 units per liter (U/L). It’s that bad and the current dosage of CoQ10 and Alpha Lipoic Acid supplements seem to be of no help. If only there’s a way to patch up this one. This Christmas we all want more than just his two front teeth.

***

We just learned that our version of Mrs. Wilson is sick and in the hospital. Get well soon, from Marcus a.k.a your Dennis The Menace.

***

Mood: 3/10 Honks! (I don’t know if I should be happy to once again skip the opportunity to watch this Everyday I love You movie with wifey.)

Do you believe in monsters?

The charm of a movie does not always have to be based on hype but sometimes it is on how an audience relates to it. Sometimes it is both and when that happens it becomes one worthy movie to watch. This is the case for the movie Goosebumps  which we first learned from Marcus, thanks to YouTube.

Goosebumps is a movie based on a popular book and TV series back in the days when its present young fans like our son weren’t around yet and when TV were showing more entertaining and intelligent shows. Fortunately for us there is the trusty Hollywood that allows us to reminisce the good old days while seated beside our ever curious children and as we blindly dig our hands into same cheesy popcorn bucket.

What I personally like about Goosebumps is its appeal to people who like to read and write regardless of skill. As a so-called blogger, it never ceases to amaze me how an author’s imagination could be translated into words, into sentences, into paragraphs, into pages, and finally into a book with a plot that is entertaining, interesting and more importantly, one that millions of readers could very well relate to.

We believe in monsters.

For moviegoers as young as Marcus, the idea of monsters becoming real may be something new. Goosebumps, however, surely isn’t the first to show monsters coming out of books. Do not ask me to cite examples as I am bad in recalling movie titles but I just know that there have been others ahead of Goosebumps yet it does not mean that all is lost.

For one, it is worth noting the presence of the actor Jack Black as one of the main casts. Like his previous roles in movies like School of Rock and Nacho Libre, Jack Black continues to prove that he is among the top actors not just for comic relief but also when there is a need to inject the element of mystery. In the movie Jack Black plays the role of R.L. Stine who is the original author of the Goosebumps series that became popular in the 90s. The movie’s story goes that R.L. Stine was once outcast—could be true in real life—who isolated himself from the bullies of society and, eventually, in the confines of his room wrote stories that have monsters in it. He wrote so much stories of the same genre that he has lost count how many monsters he has created which later on became too much to handle when everything got out of his books and terrorized a sleepy village in Madison, Delaware.

Goosebumps should also remind us that there were times when authors spend endless nights on their typewriters—or others still do?—to create that one story that would soon make it into the bookshelves and bed sides around the world. Yes, the typewriter, the machine, that makes weird mechanical noise that could be very well mistaken as monsters by kids of the touchscreen age.

What fascinates me about people like R.L. Stine and even Stephen King is their influence. They create stories to escape reality, their readers read to escape the same reality—and others would even be so inspired that they become good writers in their own right. Let us not forget, however, whether we like it or not, that reality bites—literally and figuratively. That there aren’t really monsters, that fantasy has its end, and that the last page exists.

The good news, as R.L Stine said in the movie, “there are three elements in my stories, the start, the end, and the twist.” True enough just when everything seems to be cliché, good guys beat bad guys, Goosebumps makes its audience look forward to something until its next installment returns, until we see the invisible boy. We now crave for more.

***

In hindsight, there are real monsters in our midst. Some in the form of bad politicians, bad traffic, bad boss, and even bad afternoon shows.  Each one of us are battling our own monsters and there is one that lives inside Marcus which he continues to fight head on. It is one that’s cannot be seen by the naked eye but is much scarier than those of R.L. Stein’s.

No tears shed on this second blood extraction for this year.
We got him a fitting cap for his bravery after the extraction. One that Super Mario wears and one that could very well mean Super Marcus.
For the second time this weekend, we were back in the mall, this time for his first visit to the dentist to check his shark tooth. No tears here as well.

***

Mood: 3/10 Honks! (I will get the blood extraction result today. Fingers crossed.)

Our First DMD Awareness Day

As America observes Labor Day some people all over the world celebrate Duchenne Muscular Dystrophy (DMD) Awareness Day and I, my wife, and Marcus were among those who participated in our own simple way. Kudos to wifey, she had a perfect plan on how we should go about it which is by celebrating the day together with people whom Marcus stay with five days a week.  So today, we surprised his classmates during their lunch break.

Wifey and I went to the school with our car and bag packed. We stopped by to meet up with the one who baked the cupcakes, dropped by Greenwich for the pizza, and  we filled our backseat with red and white helium balloons from a small party needs store. In the trunk were our presentation materials—a YouTube video saved on a laptop and a wheelchair.

Questions were all over when we entered the classroom as everyone seems to wonder when they saw me pushing the wheelchair in—the sight of it entering the school gate made waiting parents’, yayas’, and guardians’ heads turn as well. But with most of his classmates already familiar with how Marcus behaves, I soon heard ahhs and ohs as a sign of their realization of  whom the attractive red and blue wheelchair belongs to. Curiosity heightened when I made a short introduction of why we are there. Then I played BrainPOP’s animation about Duchenne Muscular Dystrophy. Everyone was all ears.

The attentive audience.

Reactions differ as the 4-minute video played. Some smiled—after recognizing the similarities of the animated character’s traits with that of Marcus—and some tried to absorb what they have just seen. Marcus’ adviser and the school’s principal were also present and even if they are the only two adults who now begin to understand more about Marcus’ condition made our efforts to spread the word about DMD all worth it.

We capped the celebration by letting the grade one class release the red and white balloons. Everyone enjoyed the celebration so we declare our first DMD awareness day as one mission accomplished.

Saying goodbye to the red and white balloons.

***

My wife and I also took the opportunity to give everyone a heads up that sooner or later Marcus will be leaving their school and most of them cannot believe it. Other kids who are also fond of Marcus were surprised about the news. Sigh.

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Mood: 3/10 Honks! (Marcus’ 2nd time to shower in the rain.)