Category Archives: MaPa & In-Between

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.

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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)

I’m not sure what to say when they ask, part 2

I received a couple of e-mails soon after I blogged my previous post, asking me if I was OK.

Yes, I am fine. Am I angry? Nope. Just tired, I suppose. I just want people to stop telling me that Edry doesn’t look like he has Down syndrome, or that he is special, or that he “brings good luck” (“bawa tuah” as you would say it in Malay), or that I am strong, or things like that which I’m lately prone to categorize as prejudiced crap.

Down syndrome has nothing to do with looks. That’s not what us parents are concerned with. It’s the health risks associated with having Down syndrome is what worries us.

Why does having Down syndrome make him special? What about his other brothers? Each and every one of my sons is special.

What’s with this “bawa tuah” anyway? If you’re saying that Edry is fortunate to be healthy, then yeah. Otherwise, isn’t this undermining his older brothers? Are Eric, Joel and Ezra going to bring me trouble? In any case, I don’t believe in luck.

Me, strong? Forget it. That’s undermining other parents, too, you know.

I’m laughing inside now. You might think that anything you say to me would insult me ๐Ÿ™‚

You know what things I don’t mind talking about? You can ask me what Down syndrome is, if you don’t know. You can ask me how it felt when I first found out about Edry’s diagnosis. You can ask about Edry’s health. You can ask me how I’m coping. You can ask how you can help get involved with assisting people with special needs. You can ask me about how I’m addressing Edry’s needs and where to get help.

Life is different, yet it remains the same. I’m not in denial of his abilities, but the fact is, he’s just like my other kids I have to take care of. Really. It’s not easy, but it’s not hard, either. It’s as challenging as raising Eric, Joel, and Ezra, you know?

It’s the uncertainty that scares me, not living it.

So if you’re not sure what to say to me, just smile. Or ask me how Edry’s doing (to which my standard response would be, “He’s healthy, thank you,” with a dash of smile… unless he is sick, of course). Or ask me about the weather for all I care. If you’re really curious, tell me that you are, and I’ll do the rest of the talking ๐Ÿ™‚

I’m not sure what to say when they ask

“How did he get it? Was it something you did during pregnancy?”
I want to say: Maybe when I reincarnate as a scientist in my next life, I’ll let you know, OK?

“He looks normal, doesn’t look like he’s sick.”
I want to say: Sure, like if you get Alzheimer’s one day, you’ll stop being normal.

“How bad is his Down syndrome?”
I want to say: Hm, I don’t know… do you know how bad your stupidity is?

It’s a dangerous thing, being ignorant.

You don’t “get” Down syndrome, it’s not contagious and you either have it or you don’t.

And what is normal, anyway? If you are mobile enough that you can travel anywhere you want, are you considered normal? When you get old and your eyesight gets weak and you still can travel anywhere, are you considered normal? When you have mastectomy (breast removal) due to cancer, and you still can travel anywhere, are you considered normal? If your legs got amputated, are you abnormal or disabled? How about this — if you get assistive tools like wheelchairs and artificial legs and can travel anywhere, are you considered normal? I have near-sightedness and I need assistive tools (eyeglasses / contact lenses) to see better… does that make me normal/abnormal?

And about how “bad” Down syndrome is? I wish I have the words for that, except, maybe, just giving them “that” look would just be enough.

Words can be a self-fulfilling prophesy. This is why parents whose children have a disability are very sensitive about how the person and the disability is addressed. My child is not a Down syndrome child, he is with Down syndrome. Would you call you child a fever child, if your child has fever? And, the 6-letter “R” word, mostly used in a negative term, is insulting, too (in Malay it’s called terencat, which is equally negative). It’s as bad as the 6-letter “N” word that people used to address the African-American community.

So choose your words carefully. Stop being afraid of these differences. Start learning about them.

I have more to say. Don’t worry.

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.

Not much emotions here

There is a reason why I keep most of my blogs sounding strictly factual, focusing mostly on the goings-on of life. I hate being personal. It’s a rare occurence for me to blog about things that exposes my emotional well-being. I hate doing that. What I feel is none of anyone’s business but myself.

This isn’t to say that I don’t have the need to vent my feelings. I have plenty to write on that subject. But suffice to say, they are just too raw for me to share with anyone.

However, dealing with the diagnosis of Down syndrome has changed almost my entire outlook on life, more than I care to admit, and all in a matter of mere weeks. Things that I worried about or wished I had, now seem very petty. Even my professional focus in life is being shaken. “Ignorance” now has a whole new meaning to me.

So I need to vent this. Just once.

Like all other mothers with special needs children, I can’t help but ask, “why me?” Granted, each day gets easier for me, they really do. But there are moments when my anger and despair would seep through and I would get angry at myself, at God, and at everyone else around me, as if I’m facing this all alone. But I know this is actually just self-pity, and I’d just as quickly slap myself mentally out of it and continue on with life.

One thing I always thank God for is the Internet. I get so many uplifting and enlightening information from all the sites and resources out there to help me understand Down syndrome better. Reading the scriptures that were pointed out in God, Do You Care? gave me hope that Edry is meant for bigger things in life than I would ever fathom. Being a part of the DS community in the BabyCenter Forums has educated me about the real issues that parents with DS have and need to deal with daily.

But the earliest source that tugged at my heart was a short fictional story written by Erma Bombeck called God Chooses A Mom For A Disabled Child. It was as if I was being punched in the gut. Happy… impatient… feeling of self… independent… selfish. Those are words that describe me.

You see, after I had Ezra, I thought that that’s the end of it. Three kids are enough. Just as I have planned. And I was happy. I was working and well-paid, my children and my husband and I were healthier than ever, and we had almost everything we ever wanted. Just as I have planned.

And then Edry arrived. And my life turned upside down. Everything changed. Yet… everything is the same. It’s so hard to describe it.

Further down Bombeck’s story was even more self-revealing for me:

… “Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

Those words spoke directly to me. As much as I hate to admit it, those are the exact kind of things I wish to experience in my life. And I’ll take it whichever way I can.

Thank you, God, for blessing me with Edry.

And thank you, Edry, for giving my life meaning.

So now that I’m done telling you my sappy story, I assure you that you won’t be reading anything like this ever again. Ever! ๐Ÿ˜€

1st visit to Kiwanis Down Syndrome Foundation (KDSF) Kota Kinabalu

Yesterday, after sending Ezra to daycare, I figured I drop by the KDSF centre in Taman Milek 2, Jalan Lintas, Luyang, to continue my quest for more information on Down syndrome centres in Kota Kinabalu. It was fairly easy to find the place (well, easy since I already found the place via Google Map), and the sign board is large enough that you won’t fail to notice it.

The little ones were enjoying their tea break when I arrived at KDSF’s doorstep, so I had the pleasure of seeing those independent souls enjoying their food while Ms. Raneh, the centre administrator, answered my questions. Here’s what I basically found out about the centre:

  • The centre is one of only two places where Infant Stimulation Programme (ISP) is conducted. The other place is the state-run Community-Based Rehabilitation (CBR) center in Likas. KDSF conducts the ISP every Friday, from 9am-10am. Both child and parent/guardian must attend together. The way their ISP works is that you attend a weekly session for about a month or two, where they will teach you the right techniques to stimulate the physical development of your baby. Once you get the hang of it, the sessions will go down to about once or twice a month where they will help monitor your child’s progress. The CBR centre also works in a similar way to KDSF when it comes to ISP.
  • Some parents opt to go for ISPs offered by both KDSF and CBR because the programmes are offered on separate days. I may consider doing so, because 1) I’d like to learn the similarities/differences between those programmes, and 2) I may not be able to attend the ISP at KDSF in due to a meeting, or on medical leave or any other reason. Therefore, getting myself familiar with both programmes may be beneficial for me. I just hope I’m not stretching myself too thin.
  • Focus of ISP in KDSF for an infant’s first few months are on gross motor skills. Cognitive skills will come in the later months, even speech therapy. Hm. This would mean that I will have to make some DIY for oral stimulation, which hopefully can jumpstart his speech development and train him for solid feeding later.
  • KDSF offers daycare service for children between 2 to 7 years old. I think. I didn’t actually clarify this with Raneh. But for sure, they do not have any facility for infant care. I’m not worried about this anymore, though, because this morning I met with Sister Bernadine of Stella Maris Preschool (Taska Stella Maris) confirmed to me that I can send Edry to their place just as I have planned, yes!
  • What else, hm? Ah, yes, payment! I did specifically ask for the payment structure, but Raneh didn’t mention anything about it. She did tell me about the Welfare Dept allowance that Edry is eligible for, and she specifically said that it’s “for Edry’s use”, not mine. Okaayyy…? I wished she could just be straight forward and request that the money be used to pay (or “donate”) for the centre’s services instead of being cryptic about it. I mean, even if there’s no allowance, RM150 out of my own pocket money is reasonable if what I get in return is the ability for Edry to grow up at his most optimum. These organisations shouldn’t be afraid to charge the public if they require so to continue providing their services.

I believe that’s the gist of it. Edry and I will go to our first ISP session this Friday, and I hope his daddy will tag along. Hopefully I can dig up some more details, particularly on the payment!