Edry’s 12-week progress, part 3

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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

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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)

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1st session at the Community-Based Rehabilitation (CBR) Centre Kota Kinabalu

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So much to blog, so little time. Hey, when you have a newborn to care for, housework to do, and sleep to catch up on, menial stuff like blogging have to go on the back burner.

I visited the Community-Based Rehabilitation Centre (CBR; known in Malay as Pusat Pemulihan Dalam Komuniti or PDK) in Likas finally, last Monday. I was driven specifically by a text message sent to my better half by his colleague’s friend’s friend, who happened to gave birth to her child 2 months ago and was diagnosed with Down syndrome.

I followed up with Edry’s first early intervention program (EIP) session on Wednesday with the caretakers there, and I also met students from UMS who, if I remembered correctly what was been told, were doing their practicals. The children participating in the session consisted of older kids diagnosed with autism, who I assumed are around the ages of 3 and above, so it clearly seemed that the session wasn’t actually geared specifically towards infant stimulation program (ISP).

A few minutes into the session, though, Edry and I were taken to a separate room where one of the teachers, Rindah, did Edry’s evaluation. She was quite satisfied with Edry’s condition, particularly because his hypotonia wasn’t as serious as she expected. Edry wasn’t floppy and had satisfactory neck control. He even surprised me when he held up his head for a few seconds longer than I had thought he’d be able to do.

I was advised to go for EIP at the CBR centre at least twice a month, which means that it’ll be a total of three therapies a month including the one session a month at KDSF. Before I left, Rindah gave me three things to do as a bit of homework that I can use with Edry while we’re at home. The first one is the method of pulling Edry up in a sideway motion that would stretch his neck muscles for strengthening. Ah, it’s a bit difficult to explain it, but I can tell you that the technique disarmed me a bit (a little pun there, if only I could show you the technique), maybe if I have the time, I’ll show you a clip of it. The second homework is to spend more time holding Edry in an upright and open position, rather than the usual cradle position. The open position involves propping him in any way possible as long as he’s facing away from your body. This technique is suppose to help expose Edry to more stimuli. The third homework is — get this — potty training! Oh-am-gee! I know! At six weeks?!, I exclaimed. Rindah’s advice is that if I can determined the approximate period of time when Edry passes motion, then it would be the best time to take him off his diaper and prop him on a small potty. At those times, it would help to also make some sound effects to help him pee (by doing the hushing sound) or pass motion (by grunting).

Wow, I don’t know about the third one, but I’ll try as soon as I can find a small potty that’s just the right size for Edry.

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Healthy baby and more DS understanding

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Edry had his follow-up check with our paediatrician (PD) this morning, and he passed with flying colours! The doc noted that his jaundice is looking better, which means that Edry’s liver functions are getting better (yay!). His lungs, heart and everything else checks OK too. I only need to put some lotion on him since his skin is a little dry. Dang that phototherapy lights! He also reconfirmed with me that Edry doesn’t have any congenital issues (health problems present at birth). I asked him about the possibility of Edry getting atrioventricular canal defect (AVCD), a common problem among Down syndrome children, and he said if it’s not congenitally detected, then he won’t have it even when he grows up. What a relief! PD mentions that I only need to be on the lookout for ear infection due to his low muscle tone.

The doc and I went on to talk about other things, specifically the early intervention programs (EIPs). He handed me a leaflet of Seri Mengasih Centre, so I thought I’d share it here.

Early Intervention Program

For babies, toddlers and young children from 0-12 years old with:

  • Cerebral Palsy
  • Intellectual Disability
  • Motor Coordination and Sensory Impairments

Day: Every Wednesday
Time: 2:30pm for assessment, 3:30pm for playgroup

Program follows a multi-disciplinary approach involving:

  • Physiotherapy
  • Occupational Therapy
  • Sensory Integration
  • Counseling / Assessment

Conducted by:

  • May Vivien Lim, Physiotherapist, B.Sc. (Physiotherapy), Australia
  • Jasminah Ali Umer Kutty, B.Sc. (Physiotherapy), Australia
  • Florence Lajangang, Occupational Therapist, B.Sc. (Occupational Therapy), United Kingdom

Fee structure:

  • Annual membership fee payable to Seri Mengasih Centre (including free access to the Resource Library): RM50
  • Payable to the therapists:-
  • Preliminary Assessment (45 mins, one-off): RM50
  • 3-sessions per month (1 session is 45 mins with all therapists): RM75
  • Extra one-to-one therapist session: RM50

This is a really good start for me. I got tons of information and more understanding of the types of services and therapy I can get from non-profit organisations as well as government centres. I think I’ll just do a different post for that later. For now, I’m taking a little time to be grateful to the Lord concerning Edry’s health check.

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