Moving On

What seems like in a snap of a finger, we find ourselves staring at 2017.  Now we once again wonder what this new year has in store for us with all hopes up that it would be better than its preceding year. In our books, 2016 is hard to beat especially that its last days ended with a bang. But after three weeks of living the life in the land of milk and honey, our life goes back to normal.  We have returned home, we move on.

Meeting 2017 at Old Sacramento.

Yes, we move on. One tall order after one unique travel experience. In the next days we merge back to the rat race–like it or not. In Marcus’ case, however, moving on is a pun and at the same time a big dream. And time is of the essence. This year we need to execute what we have regularly discussed between pauses during our American adventure. Our good hosts, my sister and her hubby, want to see Marcus undergo the next phase of DMD testing. They pledged to support it.

Kid in America.

To say we were happy at their commitment would be an understatement. DMD is one of those medical conditions that is expensive to deal with despite the uncertainty of success.  With the much needed support we can now proceed and see if the available DMD drug in the market would be of benefit to Marcus. So as early as this January we’ll be busy. It’s time we see the doctor again. Fingers crossed.

***

Marcus is among those in wheelchairs waiting to board the plane from Manila. He was the only child.

We continue to realize the challenge of travelling with someone in a wheelchair. Not that we are complaining but its a struggle we have to face. This is why I didn’t have any issues staying at my sister’s home and just enjoy time with everyone. I just know that Marcus preferred it that way too.

Even within the confines of the house there’s always something to keep us occupied anyway: gym, pets, TV, toys, food. They are also fond of non-smartphones games like Uno and Jenga. And it was where I learned my second card game (Trump cards is first) while Marcus proved he can play the latter.

He’s got steady hands.

Marcus once mentioned that he has seen how Jenga is played but we never saw him play the actual game not until this trip. To the surprise of everyone, he was a natural. He picked Jenga blocks on his own although I carried and assisted him to be able to place the blocks when the stack got higher. His dexterity to handle the blocks gave me some sort of hope. It proves that after all his remaining muscle functions may be preserved somehow.  Let’s see.

***

Mood: 2/10 Honks! (Now using Marcus’ HP PC which we fixed ourselves. Thanks to the male Santa.)

 

Frail

The afternoons are for cats. Marcus with Tiger.

There are things that are hard to deny, things that its progression can’t be stopped. Such is the case in Marcus’ condition. This week he felt pain on his right calf after I got him out of bed—this was the first time we’ve heard him complain about it. Every morning I get him out of bed, with his permission, by grabbing his feet. This gets his whole legs stretched besides the regular massage I give him. All the while we never had any issues except occasional request for him to stay few minutes more in bed. Concerned about the pain, I made sure since then that I pull him out by holding either on his upper legs or arms. I am more careful this time.

The good news is that Marcus still maintains a happy disposition. He smiles often and is even good at making anyone laugh at his antics and stories. He is a natural joker, he likes making his own impression of me and wifey and it cracks me up all the time. He would also share his amusing thoughts every now and then.

Despite stuck in his computer games almost the whole day every day, he continues to surprise us whenever he speaks up. “Mommy, I want to build a time machine,” he said to her one evening while preparing to sleep. “Why?” asked wifey. “So that I could go back to when I could still walk.” He also wishes to go as far back as the biblical times so he could talk to Jesus about getting healed just like in the stories from his first bible book.

He likes to make himself useful. He just finished placing stuffs in the fridge.

His mindset too has changed. If in the past he would have a big no for an answer to the idea of being a big brother, this time he reconsiders. With some conditions. “Mommy, I want you to adopt a baby girl. She should have the same complexion like mine,” he told wifey one night. “But I don’t want her to call me brother. I want to be called ‘hero’,” he added. On that same night he sent me a text message with the same demand. (It was a welcome relief from listening to awkward calls recordings.) That Xbox SIMS game he’s been playing is blessing and a curse—it made him embrace the idea of adoption.

Friends and relatives who know our stories would commend us for being strong parents. Well sometimes we are but sometimes we try hard to be–we need to. Marcus’ condition will continue unless technology makes significant findings to slow it down or better yet stop it for good. Whatever happens, we commit to continue to hold on to each other’s strengths so that we fill in each other’s weaknesses. We are hoping he won’t get frail any further soon.

***

WordPress updates have been a handful lately. Every time there is a new update I would encounter a new error. This time was about FileZilla blocking most files that led me to discover an alternative–WinSCP–and it works like a charm. The interface was so simple that I was able to make wifey and Marcus update the files.

***

My fans, 5 or 6 of them, were having a hard time opening this blog site when using their phones but thanks to a plugin called WPtouch the site is now mobile friendly.

***

Mood: 1/10 Honks! (Exactly one more week…)

 

A Gathering of Kids in Wheelchairs

First meeting with the DMD Moms. (Picture posted with permission.)

In a matter of one week after we joined the FB group DMD Moms the meeting happened. On Saturday, October 8, a couple of members made it to Waltermart Makiling and it probably was one of the few times, if not the only time, this Kuya J resto location witnessed a meeting of kids in wheelchairs with their moms and dads.

Since we learned about our kid’s condition more than a year ago, this our first time to come face to face with other parents who have chosen to meet the challenge head on. These are parents, moms especially, who stared at their young boys’ dystrophy straight in the eye and commit to make the lives of their kids better against all odds.

It was a surprise that Marcus was relatively behaved. Days prior to this meeting he was so anxious, he has lots of questions. He also expressed that he plans to just wave, say hi, and shut up. But he didn’t. He interacted with almost everyone, parents and kids alike. There were some awkward moments though like when he cried when he saw the cooked shrimps—he doesn’t like to learn about animals being killed and cooked but he eats fried chicken. SSShhh. He also refused to answer some questions referring to our constant reminder not to talk to strangers. After some explanations, he got along well with the others.

We hope that this isn’t the first and the last meeting. Like any other conditions, it pays to have a support group, a group who perfectly understand what the others are going through and could possibly help one way or another. At least Marcus now knows that after all he is not alone and that he could actually have friends aside from those in school and his cousins. Kudos by the way to the crew of Kuya J for being accommodating and understanding. They even honored the individual PWD cards that we presented. Facility of this branch is also great besides tables that could have been much more wheelchair-friendly.

***

Picture was taken exactly a year ago at the gym where I used to workout.

Mood: 2/10 Honks! (Wifey solved my network problem. Two heads are better than one.)

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.)

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).