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.

9 July, 2010 in Exclusively Edry, Life in General, Raising Kids by Mommy (Lorna) Add A Comment
Tags: assessment, AVCD, baby, congenital, down syndrome, early intervention program, early intervention programs, EIPs, Hypotonia, low muscle tone, Non-profit organization, occupational therapist, occupational therapy, paediatrician, physiotherapist, playgroup, Rehabilitation medicine, seri mengasih, Seri Mengasih Centre, Therapy, understanding

Notice that I now have a new page called Down Syndrome in Sabah? Now that I have Edry, I have developed a passion to know more about Down syndrome and other forms of learning disabilities, to see what I need to and can do in order to prepare Edry for the best in his life. It’s not meant to be an extensive list, though I hope it is useful enough for other mothers in Kota Kinabalu who are new to this experience a place for them to start off their understanding of Down syndrome.

I initially wanted to create a new blog specifically for this research, because I didn’t want this blog to end up just being about Down syndrome. However, I thought that most of the entries I may end up blogging about would be as emotional as well as factual, and the tagline for this blog is “journeys of life…” so I decided to scrape the idea of making a new blog. It’s also a good thing, because having too many blogs would just be too much for my brain cells to keep up with.

I still have a lot of digging to do, in terms of the types of therapy necessary for Edry. I’ll tackle them one at a time, and hopefully have enough time and energy to blog them as they come.

7 July, 2010 in Family Life, Life in General, Raising Kids by Mommy (Lorna) Add A Comment
Tags: down syndrome, kota kinabalu, Learning, learning disabilities, sabah, understanding

I’ve been using Ubuntu for more than 3 months now, and I’m loving it! My kids love it too, especially Joel. Whenever he’s in front of my netbook, the first app he clicks on would be the webcam application called Cheese. This software can be used to take some still images or video shots with pretty nifty effects. I’d like to talk more about it, but I’ll let the pictures do the talking for me.

29 June, 2010 in Raising Kids by Mommy (Lorna) Add A Comment
Tags: cheese, Netbook, Open source, still images, ubuntu, webcam application

(I scheduled this post to a later date, so this update might actually be a few weeks off the original timeline)

It has been three weeks since I used the baby sign language book I just purchased. I only watched the DVD once. I haven’t opened the quick guide that comes with it. Ezra and especially Joel absolutely loved the little baby signs book for the pictures. However, one time Joel was holding the book and somehow managed to get his face sliced off a bit from the sides of the book, sort of what you get with a paper cut. I decided to put the books away for a while, but I’ll be putting them out again some time later.

As for the signs themselves, it’s still a learning stage for all three of us. Currently I’m focusing on only a few signs that I think are critical to lessen Ezra’s meltdowns. Those are drink, eat, milk, bath and finish/all done. I haven’t seen one indication from either Joel or Ezra so far. I’m not so worried about Joel now. His articulation is getting better. Ezra still gets frustrated when I can’t read what he wants. I showed and repeated the baby signs to him, to which he doesn’t respond. Then when he wails, of course my stress levels go up, and I stress out quite easily.

He does try to speak a few words, like mommy, habis (finish), daddy, and a few more, but not the other important words like milk, drink and eat. I guess I’ll have to wait a couple more months to see if I can communicate better with Ezra using the baby sign language.

26 June, 2010 in Exclusively Ezra, Exclusively Joel, Raising Kids by Mommy (Lorna) Add A Comment
Tags: baby sign language, baby signs, Sign language

A week after toilet training Joel, I received this Baby Signs Kit from Ethel, signaling (no pun intended) another major milestone in my little kids’ life, specifically Joel, Ezra and our newest edition in July. I’ll get Eric to join in and learn as well, so he too can communicate with his brothers better.

I am confident that signing will not only improve my understanding of Joel and Ezra’s needs, but it will also be a stepping stone for both of them to improve on their verbal skills and speech. I have tried baby signing (using my own made up techniques) the words milk, drink, and eat to Joel when he turned one year old, and if I recalled correctly, he was able to learn in after about 4 months and communicated in signs whenever he needed those. Along the way, though, I stopped. I don’t remember why exactly. Without the signing, both Joel and I get frustrated easily and he would wail and cry while I tried to keep my head from exploding from all those noise. My situation with Ezra is turning to be similar to Joel’s, so I really need to do something about it and this is what I believe can help every one of us.

I hope I’m not bringing in too much change into our family life too often. It’s really only been a week since Joel started being toilet trained, and that’s a major life changing event by itself. What with office work, house work, taking care of the kids, expecting our new baby, and trying to keep up with being healthy, life is already very hectic. I just hope God can give me the strength to go through it all. I’m just glad I currently have a wonderful support system that is my hubby, Eric, my mom and my sisters.

Phew. One day at a time.

11 June, 2010 in Raising Kids by Mommy (Lorna) Add A Comment
Tags: baby signing, baby signs, milestone, speech, verbal skills