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.

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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.)

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 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.)

The (tough) challenge to turn minimalist

My current focus has been on the path of being a minimalist. It’s not that I live a complicated lifestyle, full of stuffs to flaunt or experiences worthy of a Facebook or Instagram post. I’m not one of those but I feel that there are still opportunities to declutter and make my life simpler yet fuller—the basic philosophy of minimalism. Thankfully, the transition is made easier as there seems to be a trend and resources to face this challenge as what I have found mostly on Becoming Minimalist.

Do not be fooled though, for decluttering is a big word. It does not only mean disposing physical objects like decades of magazines, baby toys, used clothes, gadgets, etcetera, but it also means dealing with emotional burdens like grudges, lost opportunities and anxieties, whether due to attachments to things we cherish the most or for some other reasons, that hold us back from moving forward and achieving a life that’s less stuffy.

The need to face this challenge head on started to become more serious when we decided to transfer to another house. I was hit with a realization that we have things at home that have either never used or that we will never ever need. This despite giving away clothes regularly when we hear on TV about people needing some due to typhoon or fire. We’ve also given away some of our son’s old toys on trick or treat days or on Christmas seasons. Still it seems that those weren’t enough.

Except for movable things like the stand fan and a turtle in the basin, this area remains clear like on our first days. I have also blocked my wife’s plan to buy a stationary bike.

So when we eventually got settled in our current house, I made sure that more unnecessary stuffs will have to go—having no shelf or extra cabinet helped in the decision making. So far I have given away paperbacks that I once find hard to dispose due to sentimental reasons. Marcus has also agreed to say goodbye to some of his old McDonald’s happy meal toys and Duplos. Wedding gifts like tea sets, plates, glass bowls and the likes were also given away with wifey’s permission. Every one of us did our part in clearing the tangibles and make the house clean and wheelchair-friendly.

Some of the books that have once made me occupied in the parking lot have been given away. I’m now using Kindle.

Clearing the mind of anxieties, however, is a tougher enemy and is an ongoing battle. To let go of what-would/could-have-beens is often hard to shake off. While I have started to get used to look at Marcus straight in the eye when I reassure him that not being able to walk shouldn’t be a big deal, I would sometimes catch myself seeing images of him once walking naturally and him running around and enjoying an active life as an adult.  But maybe it’s the life that isn’t meant to be and acceptance means changing sail and let fate take its course.

Yesterday, during the homily the priest made the perfect reminder. He said that human as we are, we tend to easily forget that what we currently have are all temporary; worse, we become so selfish that we refuse to share to those that need the most. That was spot on.

I know that what I try to achieve in a world of consumerism and self-centeredness is a feat full of obstacles. The temptation to give in is always present so focus to the goal is key. Honestly, I do not know when I would achieve minimalism or if there is even such point, but I am willing to take on the challenge and see how far I could let go of clutters so as to live life as it should be lived.

***

This was tough parenting week for us. Marcus has been playing this online Minecraft game called Skywars. He claims that there are banable offenses like hacking and teaming up that results to him getting killed unfairly. When it happens he get so frustrated yet the more he wants to get even. And one frustration leads to another—me included. To prevent this from happening again, I uninstalled his Minecraft PC application in front of him and eventually his user account just to realize soon that I shouldn’t have done it. Anyway, it surprises me that he recovered sooner that I thought and it’s as if nothing happened to the game he loves the most. Maybe he would be a better at letting go than I would ever be.

***

Mood: 3/10 Honks! (Letting go of my comfort job.)

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…)

 

 

 

Counting Sheep Challenge

“Please fix the creaking hinges of Marcus’ room,” my wife requested. I didn’t bother asking though why it should matter that much. I have gone in and out of our son’s room but shrugged off the minor sound the door makes. It’s just like one of those tell-tale sounds from a horror movie. No big deal. I thought it was the issue.

But the urgency of her request became clear last night. Our son has been known to sleep very late at night since he was a lot younger. We have even joked back then that he would look better with a night stick. We also called him a call center agent in the making. He is one who would fit graveyard shifts best. He sleeps that late. We have told his pediatrician about it several times but she ruled out insomnia and only suggested a change in lifestyle and sleeping time management.

We have tried all tips and tricks we know on how to make a child sleep early. Remove the TV from the room, checked. Drink warm milk, checked. No electronics in bed, checked. Cool the room, checked. Read bedtime stories, checked. Turn the lights out (he finally agreed just recently), checked. Name it, we probably have done it.

In the past days, however, it has gone from very late to very very late. In fact, I arrived from work this Saturday morning to find out that Marcus has not slept the whole night as he was waiting for me–sweet but it got me worried at the same time. We spent at least two more hours after breakfast of McDonald’s meal that I brought home before I and Marcus left his mother to continue working online. We hit the sack together in his dominantly red and black room.

Late last night, I heard wifey asking Marcus to try counting sheep. Oldest yet unproven trick in the book. Fighting the dilemma to let her handle things or to interfere by singing a song (I realized I called in sick due to sore throat), I soon heard our son comply. He started counting. Last count I heard was three. Counting sheep had that immediate effect on me. If only I could swap places with our son.

Even the sheep seem to lack sleep. (Image from Google.)

I woke up in the wee hours of the morning and I almost regret opening the door on my way to the toilet. It occurred to me that in the silence of the ungodly hour, the creaking hinges could awaken Marcus. Knowing his sleeping pattern, I supposed he has barely reached REM state past 2 AM.

Over instant coffee and hot pan de sal this morning, wifey told me that took it an hour or more for Marcus to eventually hit the zzzs. She said our son had some concerns about saying sheep over and over again. “It’s like swear swords at some point,” he said to his mother. So I tried silently. “One sheep, two sheep, three sheep, four sheep, five sheep, six sheep, seven sheep….” It’s possible. Kid’s got a point.

Today I sprayed WD40 on the hinges. All three of it. That’s one factor gone to help him get better sleep but I doubt it. We need to see his doctor soon. Or maybe we need to change the color of his room first to baby blue.

***

Mood: 3/10 Honks! (Revived the old iPad for writing as my phone’s keyboard is a hopeless case.)