Category Archives: Raising Kids

Down Syndrome life is typical life

When Edry was born, my life changed profoundly. Having a child with Down syndrome was suppose to mean that my life will be overwhelmed with me having to learn about raising a special child like him.

Yeah, he’s special, alright. So special, that I don’t even blog about him, or Down syndrome, for that matter.

How bizarre is that?

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The reason why our lives are so special now is because it feels so… normal. Every single day is specially normal. Who could have thought that having a special child meant that life was going to be a simple mundane routine of going to school/work, going home from school/work, eat, play rest, clean up, sleep, repeat? Almost every weekend, we’ll eat out, or hang out in the park, at the swimming pool, at the movies, at the beach, joyriding, play more online games, watch YouTube together, et cetera.

Typical family stuff.

Ain’t that a blessing?

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Birthdays and celebrations come and go. Those usual sibling squabbles abound:-

Eric: “Mom, Joel didn’t wash his school shoes himself. He’s not playing my Xbox.”

Joel: “Mommy, Ezra called me stupid!”

Ezra: “Mommy, Joel’s watching PewDiePie again!”

Edry: “(sings) One little finger… No!” (as one of his brothers keeps sneaking over for some of his french fries.

Much drama, my kids.

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Oh well. Such is life.

It’s mundanely awesome. Thank God.

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Edry’s 12-week progress, part 3

As Edry turned seven days old, we went to the pediatrician for our scheduled follow-up and to have his blood drawn for karyotype testing, in order to confirm his Trisomy 21 diagnosis. I did my best to report everything I could remember about Edry’s goings-on, including the seizures that Edry experienced, and how he wasn’t feeding enough.

Let’s backtrack a bit to Edry’s seizures and feeding issues. The days before Edry’s scheduled check-up, he had at least three episodes of what I could only best describe as seizures. With what little brainpower I had (due to sleep-deprivation), I did more reading from the Internet and suspected that they were caused by two things:

  1. Not leaving him upright long enough for his milk to settle. Even after he burped, the 10 minutes of holding Edry upright wasn’t enough; milk would pour out of his mouth and nose (was so worried that may even come out of his ears, yikes!). My quack scientific hypothesis is that hypotonia contributed to the inability of his intestines to process his milk well (the intestines are muscle after all). Being a little bit of a preemie may have also contributed to it. He was born at 36 weeks, or 4 weeks earlier than anticipated, so his gastro-intestinal functions may not be developed well enough for him to digest effectively.
  2. He may have reflux / GERD (gastroesophageal reflux disease). His symptoms did correspond to it. He was shaking violently and regurtitating instead of just spitting his milk out, and I suspected that it must have been obviously painful for Edry, as he would cry his heart out after every episode. It was equally painful and heartbreaking for me to watch, too.

The way I dealt with this was to leave Edry upright for at least 30 minutes in order for his milk to settle in his stomach. I was struggling with this, because it meant that I was losing more sleep. One hour to feed him, half an hour to hold him upright, then only another half an hour of rest for me before the whole ordeal began. But it wasn’t like I had any choice, did I? My better half was doing his best with the rest of the house chores (as well as any man could, I guess, and you know how most guys are like when it comes to chores… clueless… but at least he can cook, thank God!).

Being a believer of nutrients and supplements as a way of improving and maintaining good health, I started feeding Edry some enzyme catalyst (Elken’s Dr. Xeniji) to help metabolize his milk better and improve nutrition absorption. Since the enzyme protects the gut area, I was hoping that it could help prevent reflux, which I’ve seen to be pretty common among children with Down syndrome.

So, back at our doctor’s appointment. I reported to the doc about everything I could think of, as he examined Edry’s jaundice. Remember the dehydration worry I had? A couple of days before the aforementioned appointment, I actually called the pediatrician of my concern that Edry wasn’t drinking enough.

“I think he’s dehydrated,” I told him over the phone.

“How do you know he’s dehydrated?” he questioned.

“He looks a bit dry,” I answered. He brushed off my concern, telling me that as long as his diaper looked full and that I frequently had to change him (can’t remember whether he said I should need four diaper changes a day, or something), then he was fine. “He only poos a little.” As long as it’s not hard, he would be fine. Well, OK, doc.

But it wasn’t OK. Not only was the doctor unable to draw enough blood for the karyotype test due to his dehydration which causes his blood vessels seemed less visible, but his jaundice got worse. The doc was only able to take enough blood sample for bilirubin testing to check Edry’s jaundice level. The jaundice was so bad, that Edry had to be admitted for double photo therapy that same day.

More drama ensued, which I will post later. Phew, just thinking back on those times makes me so exhausted.

Edry’s 12-week progress, part 2

Edry 2 days old on Flickr I have wanted to chronicle everything that has happened to Edry and me since his birth. So far it has been the most dramatic event of my life, and I haven’t even recorded the hours prior to his birth. That would be for another day.

0 to 7 days

I was still trying to handle the news of Edry’s diagnose as we went back home with Edry at 3 days. Caring for Edry was a shock to me, to say the least. The doctor said that Edry was healthy, but he didn’t mention how hypotonia would affect his feeding.

Edry didn’t cry at all, not even for feeding or when he soiled his diaper. After 8 hours agonizing and waiting for any sign from Edry, I decided that this would be the first time that I would feed my kid on schedule.

I tried feeding Edry just 2 ounces of milk, using a bottle. After one hour, he couldn’t even finish one ounce. I waited again after 2 hours, and tried feeding him once more. The same thing happened, he couldn’t even finish one ounce after an hour.

Turns out — and having to figure this out by myself — his low muscle tone caused him to unable to suckle and swallow well. Fortunately, I had a spare syringe that I can use to supplement his bottle use. Because he only feeds one ounce at a time (even then he could only finish after one hour), I timed my phone alarm to ring every two hours during the day, and three hours during the night.

Do the math: When Edry feeds at 2pm for one hour, and the next feeding is at 4p, I only have an interval of one hour to either rest, or do the house chores, or taking care of the kids, or eat, or go online (which is a must for me in order to learn more about how I can care for Edry). At night, if he feeds at 10pm for an hour, that leaves me with 2 hours of sleep before the next feed. If I only had to care for Edry, then it’s fine. But I have two little ones at the same time who needed my attention. Thank God for Eric; he actually helped me out a lot during those time.

Even with the scheduled feeding, I knew in my heart that Edry wasn’t getting enough. Lack of liquid meant that his jaundice couldn’t heal as fast as I had hoped.

It was exhausting for me, more so emotionally than physically. I suffer from a mild form of postpartum depression, which made things much worse mentally. The good thing was, since I knew I had it every time I gave birth, I was able to acknowledge which feelings were appropriate or not, and did my best to snap out of it, either by resting, or talk them out with my significant other. I also had to fight the loss of appetite (I tend to stop eating when I’m depressed), and instead force myself to eat, telling myself that I was doing it for the kids.

Anyway…

I tried a few techniques on Edry which I hoped would help him (and I got all these ideas from the Internet). First, I was fortunate enough to have stumbled over Sara Rosenfeld-Johnson’s article on oral motor myths of children with DS. Almost immediately, I changed Edry’s posture to an upright position so that his mouth is lower than his ear. Next was the tip I found from Sara’s video about jaw strengthening, plus a discussion at BabyCenter Ds group about the same matter. So, I started massaging Edry’s gums at the back of his mouth and let him bit down a couple of times at each side, before he started each feeds. Then, my husband hit a jackpot when he found a bottle teat soft enough for Edry to suck on. The improvement was evident — I believe that a combination of these helped him suckled better. But he still wasn’t feeding enough.

The drama continued on Edry’s 7-day check-up. (to be continued)

Reading materials for infants with Down syndrome now online

I recently found out that a couple of books that I was planning to buy are actually available online for free! These are highly recommended by parents in the Ds support groups I joined.

The materials cater for all age group, but as for me, I’m going to focus on reading the ones that fit Edry’s age group:

I honestly love Downsed.org!

Life is special with Down syndrome

I’ve been watching a Web docu-series called The Specials, about the lives of five people living together. They are so inspirational, and full of character! Sam’s the cheeky guy, Lewis is pointedly funny, Lucy’s the responsible one, Hilly is the romantic drama queen, and Megan is the quiet overachiever. Lewis has Williams syndrome, while Lucy, Megan, Hilly and Sam has Down syndrome.

The Specials – Season 1 Highlights from KADA Films on Vimeo.

You can watch the whole 10 episodes on YouTube, and it’s subtitled, for those of us who can’t understand their English accent. Honestly, I hope Edry doesn’t end up being like Sam. I hope none of my boys do! ARGH!

A new documentary will be made as well, chronicling the lives of Hilly’s parents, Carol and Dafydd Williams, on how they set up the group home in the first place. This is a topic near and dear to my heart — how to care for Edry once he’s grown up, and in case I’m not around long enough to be with my kids. Who knows… this may be my calling.