I’d like to think that I’m one resilient person, that I can quickly handle any change and any challenge that comes in my way, and move on. But the year 2011 has been so unfair to me, both professionally and personally — changes and challenges bombarded me from all directions that I feel like I just want to hide from the world and just scream, “Enough!”

I’m glad that my kids aren’t too affected by my issues. My cutie-pies. Mr. smart-boy Eric is as busy as ever. For this month and the next, he’ll have his first ever piano exam for Grade One, his Taekwondo upgrading for yellow belt, becoming a ring-bearer for his aunty’s wedding, and extra band practice… all this during his supposed school break. I wonder from time to time whether all this is too much for him, but he said he wanted to do all these extra-curricular activities, so I’m letting him go ahead with them. Any time he wants to stop, I told him, it’ll be okay with me.

I tend to call Joel by his first name more frequently now. And he writes and recognizes his own name now, yeah! He speaks very clearly now, too. Always the mild tempered boy just as he was before. One pleasant surprise I’m seeing in him is his sense of humour. He’s my Mr. Funny Boy.

Ezra. Never the one to cool down. Just this morning as Joel, Ezra and myself spent a nice sunny morning having breakfast at a cafe, he threw another of his infamous temper, because I refuse to let him wash his hands after doing so for the umpteenth time. His screeching scream was followed by him lying down on the coffee-stained floor, spinning himself on his back as I tried to soothe him and asked him to calm down. Thank God the supervisor had recognized us by now as the frequent patrons of the shop, and she actually laughed seeing him do that. I would have laughed at him too if wasn’t for the crazy stares I was getting from the other people in the cafe. And the fact that the monster of a scream was coming from that little boy I call my son. Mr. Hot-Tempered.

Look at that picture of Edry right over there, isn’t he adorable?! He’s my Mr. Happy Boy. I can’t believe he’s turning one year old next month! He looks just as handsome as my sons. *Sighs* … this kid makes me so happy. He’s a momma’s boy, this champ. He wriggles in excitement and reaches his arms out to me every single time he sees me, without fail. Every single time. And with the biggest smiles, too! None of my kids were ever that excited when seeing me while they were still babies, so I think the amount of excitement Happy Boy shows me more than makes up for his brothers’ lack thereof. My little crawler is working to strengthening his upper body and balance so that he can sit up by himself. I’m thinking in 6 months’ time, he’s ready for standing.

We’ve just completed our first ever Annual General Meeting for the Down Syndrome Association Kota Kinabalu (PSDKK). Even right now I’m putting some finishing touches on some documents and the meeting minutes to be distributed to the members. It got me thinking of the parents in my community who just had babies with Down syndrome, and how much I’d wanted to make an information packet to address this matter.

It led me to my memories when I first had Edry, and the fear and uncertainty I had during those early days.

So, here I am, tears streaming down my face as that familiar fear creeps back into my heart. There’s that self-doubt again. All those medical complication that a child with Down syndrome are susceptible to may creep up later in life… can I handle it? Can he? Physical and intellectual development challenges are also waiting for them. How? When? What am I to do? Will he work? Will he count? Will he understand the complexities of life?

And yet, raising Edry has been a breeze… how could it be? I’m trying to remember the struggle I had to endure to raise Edry. And I could remember none. At least no struggle that is any different from what I’ve faced when raising my other children. How could it be so easy for me?

I shouldn’t be asking these things. I should, instead, count my blessings. Because, at the end of the day, the reality is, I’m not raising a child with Down syndrome. I am raising Edry.

So it’s okay. He’s okay. I’m okay.

It’s going to be okay.

31 May, 2011 in Exclusively Edry, Exclusively Eric, Exclusively Ezra, Exclusively Joel by Mommy (Lorna) Add A Comment
Tags: cutie pies, down syndrome, fear, funny boy, laugh, life, smart boy, smile, temper

I’m playing catch-up with all the blogs I own and have to update, and now I finally have the chance to blog back here again.

Everything is all good in the Dony household. School’s back in session since 3rd January, and things are always hectic during the first two months, at least for me.

Eric: Now in the 4th grade, still taking his piano lessons, no more tuition for him. Now joins the school band instead of the Red Crescent/Red Cross.

Joel: Starts kindergarten this year, and loving it. His morning routine is getting into class, and settling himself on his desk as I take out his cookies, water and handkerchief for breakfast.

Ezra: He’s potty trained for almost two months now, on his own accord, I might add. I did the 3-day potty training technique on him and it works as well as it did with Joel. So far he only wets the bed once, and that was quite a while ago, I can hardly remember.

Edry: He loves to roll himself from the mattress onto the floor. I’m currently teaching him how to balance and sit by himself. He still spits milk after every feed. I really need to plan his medical checkup soon.

I’ll just stop here. So many things to do. Not that I’m really complaining.

24 January, 2011 in Exclusively Eric by Mommy (Lorna) Add A Comment

7 days old

We were lucky that our pediatrician was even able to draw any blood from Edry for a bilirubin test, seeing how dehydrated he was. After an hour of waiting at what suppose to be a regular check-up, Edry was admitted for double photo therapy treatment.

I’m sure those three days were more traumatizing for me that it was for Edry. Seeing him lying in the transparent baby cot between the ultraviolet lights, with the IV pinned on his little arm, and ordered to be totally butt-naked, wasn’t easy for me. Not even a pillow on his head was allowed. On the first day and throughout the night, I could hardly sleep a wink because I was watching Edry like a hawk, making sure to wipe poop and urine that leaked through the urine pouch attached to him. The next day, I begged the nurse to allow me to at least put a diaper on him so that he (and I) can rest for a little while longer instead of being kept awake frequently, and they eventually agreed. I also put a cloth diaper to serve as his pillow so that he would at least feel more comfortable.

The blood test taken on the second day showed no change whatsoever of Edry’s jaundice level. Further tests revealed that his direct bilirubin level — untreatable under photo therapy — was significantly high. The doctor wanted to wait until the next day before deciding on the next course of action, in case the jaundice still didn’t go down.

I did two things on that second day to address his jaundice. First, I mixed in Elken Spirulina into every feeding to give Edry the extra nutrients he needed. Secondly, I fed him fresh goat’s milk that my mother supplied, which was about 240ml or 6 ounces. Many people I know swear by it, saying that the milk can help “flush out” the jaundice from the system. I suppose they were right, because by the third day, Edry’s indirect jaundice fell to half of the level, so much so that he was given the OK sign to be released that same evening, to my relief.

Our doctor, the pediatrician, advised me that, based on Edry’s weight, I should give him at least 3 ounces of milk every 3 hours to ensure that he was getting enough feeding. The fact that Edry has only been able to finish about an ounce an hour, plus the knowledge that by waking him up frequently would cause him to burn the calories he needed badly for his growth, did not go unnoticed to me. That I wouldn’t be getting much sleep was of no question, too. Therefore, I took advantage of those three-night stay to learn as much as I can about how I could tackle Edry’s feeding. One of the senior nurses there, Rosemary, was an invaluable help to me, and reassured me that with the right bottle teat and positioning during the feeds, as well as a lot of patience, Edry will come to master the skill eventually.

Up to 12 weeks old

And Edry did. By his 4-week check-up, he gained just a little close to a pound (5.0 to 5.9), but to me it was still a gain I was grateful with. And by the time he was 12 weeks old, he weighted about 9 pounds.

You know what happened between his 7 days to 12 weeks. I did several posts about his progress, especially on his therapy sessions. Basically, Edry’s feeding improved after he was 3 weeks old, no more signs of reflux or seizures, and he gets his exercises frequently when I’m at home. He sleeps through the night by the time he was 5 weeks old. Rolled over for the first time at about that period, too. He started smiling when he was 7 weeks old. His sitter at the daycare center adores him, saying that he is one of the easiest baby to care for, never fusses except when he soils his diaper (and he cries very loudly when he does!). He doesn’t scream when he’s hungry, but gives out this loud sucking sign that you can’t miss. By 12 weeks, he’s feeding 5 ounces per feed within 20 minutes. He loves the voices of his big brother Eric and grandma Tuaran (my mom). Many, many things to be grateful for and look forward to.

For today, and every day, I’ll just savor his cuddliness and hold him in my arms for as long as possible, just singing and babbling to him, giving him small smacks of kisses all over his face and knowing that I have the sweetest baby in the world who needs me as much as I need him.

3 October, 2010 in Exclusively Edry by Mommy (Lorna) 2 Comments
Tags: baby, Babycare, Bilirubin, bilirubin level, blood test, down syndrome, ds diet, feeding, Infancy, jaundice, Neonatal jaundice, nutrients, photo therapy, progress, sleep, spirulina, ultraviolet lights

(A video by the Malaysian Down Syndrome Association)

This month, people from all over the world are celebrating and acknowledging how their lives has been touched by the extra genetic material in the 21st chromosome. Amazing advances medically and socially have been made in order to improve the quality of life for those with Trisomy 21 as well as their loved ones. More work is still required to make people understand that Down syndrome doesn’t stop us from living a full life, and it doesn’t mean that we live our lives any differently from others.

If you want to know more about lives of other people that are touched by Down Syndrome, check out the links in my Facebook Page for this blog, as well as the blogs below:

• Communication Skills For Life by Jennifer Bekins
• Enjoying The Small Things by Kelle Hampton
• Yo Mamma Mamma by Missy

As for me, there is nothing special I plan to do other than to feel grateful that I have a chance to share my son and my journey through this blog, and learn to embrace this life I’ve been given. But if there’s anything I would like to create awareness when it comes to Down syndrome, is that life goes on. I hope that as you read our stories on Down syndrome, you do not feel pity for me or Edry or my family. Rather, take this as a realization that whatever life throws at you, you can make lemonades out of it if you choose to.

2 October, 2010 in Life in General by Mommy (Lorna) Add A Comment
Tags: awareness, down syndrome, Malaysian Down Syndrome Association, trisomy 21

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.

24 September, 2010 in Exclusively Edry, MaPa & In-Between, Raising Kids by Mommy (Lorna) Add A Comment
Tags: dehydration, down syndrome, Dr. Xeniji, ds diet, feeding, Hypotonia, intestines, jaundice, karyotype, progress, seizures