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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