What started as a table discussion in the US has finally materialized. Yesterday, Marcus’ genetic testing was done at UP-NIH. It took us several exchange of emails with support groups (thanks to you guys!) and hospitals and leg work that require trips to Metro Manila to exhaust our options in finding an alternative to this expensive procress. Now Marcus blood has been extracted and would soon be tested to determine if his strain is the one that the new DMD drug in the market can cure.
But testing is one thing, the medication is another. We keep our hopes high yet our expectations realistic. It’s waiting game for now until 3-4 weeks after. Que sera sera. We’ll make our next steps whatever the outcome is.
The just concluded long weekend due to the holy week was worth it. Didn’t get us far from home but it gave me a chance to just bond with wifey and Marcus. This video of the goats playing around and showing off to Marcus was captured on a Good Friday at the first stopover on our attempt to get closer to Mount Makiling. We live nearby so no big deal but take note that Marcus is in a wheelchair.
Mount Makiling is one of the regular Holy Week destinations for those who want to make their own sacrifices or for mountaineers who want to climb something challenging but not far from the city. The last time I was up there was about 20 years ago before I got married and when a good stretch of the road to the mountain wasn’t paved yet. Now it’s a bit wheelchair-friendly.
Next time we will try farther. And yes, next time we’ll wear something warmer.
Mood: 2/10 Honks! (Just a day at work then another off for me.)
Any break is routine is always welcome. Like Saturday’s. More than a month ago I seem to have injured my left leg having started running cold. I had it massaged once but the pain seems to linger although not as much. My wife suspects it’s something to do with uric acidicity, I think it’s about my 10 pounds excess weight. So yesterday I had it massaged again this time in a place that reminds me of no spa but of my old bed space days. Surprisingly, my co-worker who moonlights as a massage therapist can do better service than most I’ve had. Hope to get back to running again in a few weeks.
Just saw this one on Facebook and it made me sad yet at the same time happy that such campaign to let everyone know how a simple gesture could go a long way. This is something any parent with a kid in a wheelchair would appreciate big time.
Also on Facebook, Lad Bible posted a video of a guy in a wheelchair doing dips in a gym. Looking at the weight he has to deal with is like me and Marcus combined. Dips has been one of my favorite routines since I started working out. I still do a variation of it at home and Marcus’ therapy session also includes same exercise though assisted by physical therapists. He just finished his second day today.
I can see weights. I can see treadmill. All familiar equipment so it must be a gym yet not. And as much as I’d like to I’m not returning to working out in the gym either. We are in the place that is going to be Marcus’ regular hang out for a month at the very least. It’s St. Cabrini’s rehab center. Our first time here, our first time to have him undergo physical therapy.
Our expectations are high but realistic. We hope the next sessions would improve his movements and allow him to be more independent. So that he could sit up on his own coming from bed in the morning. So he could sit straight longer. So he could extend his leg even while in a sitting position. All the basics that we tend to ignore but a struggle to kids like him.
My time in front of the PC spilled over the weekend as I made myself useful and productive by helping out wifey with her work. Then also queueing are years of old blog posts to be migrated AND edited at the same time. I can see this same pattern happening in the weeks to come and it’s a good thing that switching from one PC to another would at least be minimized as I have once again started using Dropbox. I didn’t really appreciate the application the last time I used it on our desktop about a year or so ago but now that I have a phone that could handle more apps then I’m giving it another try. That picture of Marcus dated three years ago showing him climbing the ladder is one of the files I discovered hidden among my folders. Sigh.
Mood: 5/10 Honks! (This left leg could be a challenge this week. Hope it gets better before the weekend so I could keep running.)
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.
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.
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.
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.
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.)