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)

Edry’s 12-week progress, part 1

There were so many things happening between the nine and 12 weeks period, that I didn’t know what to blog about first! So let me start with this video, taken by Eric (who decided to make an appearance a couple of time).

I added a few annotations corresponding to the infant stimulation techniques I’ve been using since my last visit to Kiwanis Down Syndrome Foundation (KDSF):

  1. 0:10 – An open seating position, where Edry is leaning on me while I support his legs, can help with visual stimulation and be more aware of his surrounding. (Note: my hand position isn’t that accurate, maybe I’ll be showing a better way of holding Edry in my next shoot). This is a good position, because it supports his back, and you have more control of his legs and keep them closer together. This position is better than having Edry carried facing me, because not only would they tend to be more huggy-clingy towards you when they grow up, but your baby’s legs tend to be placed wide apart. Not good for kids with hypotonia, particularly when they reach the learning stages of walking.
  2. 0:40 – This is actually the back neck massage that I blogged about before this. This helps with strengthening the neck so he can lift his head (which he now can, BTW). I’ve been doing this since Edry was 4 weeks old. This massage also helps, somewhat, in preventing the small hump that might show behind his neck, a physical feature typical in kids with Ds. There’s suppose to be a name for that, but I forgot. My therapist mentioned that I should look out for that, just in case.
  3. 1:05 – Another neck massage, this time to help Edry prepare for his swallowing once he’s ready for solids. It’s best to stimulate them early.

More progress report in my next post.

The REAL procedure for applying an OKU Kad in Kota Kinabalu

Argh! I thought I had this settled already, but apparently of the 4 sets of application forms required for me to submit, they only needed ONE copy, and returned the rest to me. That ONE copy is to be sent to the Kuala Lumpur office for them to process the OKU Kad. I have to send the rest of the forms myself to the rest of the places like the Welfare Department (yes, the Welfare Department where I applied for Kad OKU is *different* from the other Welfare Department of… sheesh, whatever) and the Education Department.

So here’s my understanding on how the application procedure works here:

  1. I fill in the form in 4 copies (with the doctor’s report written in), and include relevant supporting documents such as his birth certificate and parents MyKad copies.
  2. I send the whole 4 copies to the *Federal* Welfare Department, 1st Floor, Block B, Wisma MUIS, Kota Kinabalu for their verification.
  3. They take one copy of the form for processing to obtain Edry’s Kad OKU, and return the rest of the copies back to me.
  4. I go over to the *State* Welfare Department, Jalan Kebajikan (the map can be found in my Down Syndrome in Sabah page), and give them one copy of the form for their record.
  5. I go over to the Education Department, Wisma Bandaraya, and give them the other copy of the form for their record. The department uses it for placement later in the special eds school/kindergarten.
  6. The last copy is mine to keep.

I keep forgetting to do steps 4 and 5 even though I already have the copies of the form more than a week now. I’ve been too busy, busy, busy. And frustrated. The instructions for the application only stated that copies are for those departments, but they didn’t actually TELL you that you NEED TO GO to those places YOURSELF! And, heck, state AND federal departments? Aren’t these government procedures suppose to be integrated?

It’s just ridiculous. Goes to show that the Sabah government is still very much backwards in terms of adopting new technologies to make their jobs more efficient. Instead of helping, this just adds more stress to us families who’s already struggling to get assistance.

Let’s look at the positive side. I’ve applied for the OKU Kad for Edry. At least that’s one step closer to getting the whole deal done. I only need to find what little time I have in this hectic life to do the rest of them.

On the binky and toilet training that never was

Ezra Ezra stopped using the pacifier quite by accident recently. He bit off the end of his pacifier one day, and I just decided that it’s time he stopped. I left the binky hanging off his favourite blankie for several days, before throwing the pacifier away. Ezra was restless for a few days, but eventually gotten used to it. As long as he still has his beloved blanket (which is now not as smelly as before), he’s able to relax and sleep soundly. Among all his siblings, he was the only one who accepted the pacifier right away. His other siblings just didn’t care about using one, even after I tried buying all kinds for them. It’s for the better, I guess.

On impulse, I also got Ezra started on potty training. The problem is, he never tells or indicated to me when he’ll want to go to the toilet. We’re still struggling with communication. After just one day at home and another day at the day care centre, I decided that potty training for Ezra will have to wait.

Darn, I could have saved on all those disposable diapers.

My boy is back home

Random photos 20100904

There was much happiness and jumping around by his brothers when Joel finally returned from his 2-month holiday at Sandakan with his ahpo and ahkung. It was as if he never left, as they run around playing chase in our small space we call home. And, as usual, it’s the little brother Ezra who’s doing the chase, unbeknownst to him.

Joel went a bit teary-eyed when he saw his grandparents left. I believe he really missed them, but partly I think he wanted to go out again just for the sake of it (“jalan!” he exclaimed, which in Malay means “let’s go!”). After this mommy gave him a big hug, Joel was back to his cheery self.

I am regretting doing one thing last night. I introduced Joel to a web site called StarFall (http://www.starfall.com), containing interactive ABC and reading games and multimedia (thanks to Hue Fen for emailing the link). He was so engrossed, tapping on the wide touchscreen monitor (that’s him in the picture playing the A letter matching game), that he didn’t want to sleep till it was almost one in the morning. Surprisingly, he was up by 7am!

It’s the mother who’s suffering from lack of sleep….