Clutching Crutches

We brought Fateha to the rehab clinic today for an appointment with the Neuro team. Prof James Hui and Prof Stacey Tay were the heads today.

They touched her Erb’s arm, her calves and ankles, and concluded that she was having a nerve problem. Nothing to do with her brain. Alhamdulillah. She had to walk in front us and the team, of about 11 people, with newly brought in crutches from Germany.

We were recommended to get them instead of the quad sticks because the latter would not help her to be in the right posture.

I have never seen her so brave and determined to use the aides. Good job, little girl!

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puzzled by puzzles

on our recent trip to johor bahru, for our fortnightly market-ing, the highly-obsessed-with-everything-thomas-the-tank-engine little girl saw a puzzle set of the said cartoon. daddy let her choose and she happily picked one of Thomas with Sir Topham Hat, or famously known as The Fat Controller.

it wasn’t her first puzzle set. i made laminated puzzles for her as well as bought some of those educational ones. most of them were way too simple and yea…she got bored. we let her try puzzles we installed in the iPad, which she loved a lot. completed most of them by herself. but i seriously think it was not the puzzles that made her excited and enthusiastic. it was the fact that she was using the iPad.

and being someone who is very much against young children spending too much time and getting addicted with the gadgets of these era, i try ways and means to discourage her. so today upon reaching home, i reminded her of the Thomas puzzle that daddy bought for her (before she started asking for the i-goddamn-Pad).

much to my approval and contentment, she began to fix the pieces together diligently. oh was i so glad to see that. anything a child of multiple disabilities (erb’s palsy, global developmental delay, hypertonia) able to achieve is worthy of a celebration. i was a little cruel though by asking her to try again (and again and again) after her completion. but she didn’t deny my request!

i truly enjoyed watching her manipulating each puzzle piece, and each time she matched the correct ones, she yelled “YAAAY!!!” without fail.

however, my joy was short-lived. she asked for the i-goddamn-Pad.

(like) baby baby baby ooh

I have to sweep off the cobwebs that are growing immensely in my brain to dig out a month’s worth of entry. Blame it on the 2 year Leadership course that I just got myself into recently, that takes 3 nights in a week off of me. I am literally, technically, physically, mentally shag.

Anyway…

Baby No. 1


We brought her to the hospital for an occupational therapy session last month and found new ways of getting her to utilise her right arm. She was cooperative initially; obligingly followed the instructions given by the therapist. However, that cooperativeness was short-lived and she began her Energizer bunny mode.


As we have mentioned before that her therapy also included a 10 minutes session of using the electrode, which she disliked to the core! We had to think of ways to get her to comply and just get it done. In the end, getting her to count 1 – 10 was the best solution. And for that, she got to play…

Bubbles!!!

Baby No. 2

Just a week ago, we welcomed baby Nur Laaiqah into this cruel beautiful world. Being the busiest woman in my family of soon-to-be 4 people, I didn’t have the time (and energy) to visit her at the hospital. So I waited till the weekend, after baby and mom were home. Fateha was also as excited as I was to meet her little second cousin.

Fateha showed great skills at being the eldest great grandchild of Latiff’s family, helping her aunt get the diapers and wet napkins and shutting the drawers and even cooing the baby. Boy, I tell you, I have no idea where and who she learned that from.

I guess I was the one who got her started talking to her unseen little sibling. Every night as I tucked her in and kissed her good night, she’d do the same to Lil Bub and kissed my bump. At times, she would also question her little bro (or sis).

her: hello baby! What are you doing, huh?
bub: —
her: don’t kick ibu, okay? You want to sleep, baby?
bub: —
her: i love you baby! (kiss tummy)
bub: *kick kick*

And speaking of my Lil Bub…

Baby No. 3

We are in our 19th week now!

Last week was our monthly check up and the gynae did an ultrasound scan to check the heartbeat. Lil Bub was so active! I think it was because of the Olympics. Anyway, I was just about to ask if she could see who exactly Bub was, when the gynae said detailed scan would be scheduled at 22 weeks where i could find out the gender.

*subject dropped*

In 3 weeks, I shall know.

“they tried to make me go to Rehab, i say NO NO NO!”

nah nah not rehab for drugs. it’s pediatric rehab.

at noon yesterday we brought her to see A/Prof Ong and his neuro team.  he did as he promised us, to allow Fateha to try walking with the quad sticks. though it was not quite successful, but i got a little teary.

they also checked her Erb’s arm. i heard a lot of things that a normal person would NEVER understand. “blah blah blah surgery…blah blah blah deltoid… brachial plexus… blah blah blah C6 – C7…..blah blah blah botox.” they discussed many things and had to call in Fateha’s OT that she’s regular with.

surgery on her biceps was amongst the treatment that were discussed but not confirmed. my heart wrenched when A/Prof Ong mentioned that her biceps were shortened and contracted, probably due to not being able to flex and stretch. and the culprit was her super weak triceps. they were very small and not doing what they were supposed to do for normal people. *sigh*

but the sunny side of this was that we could help to wake her “sleeping” triceps up in order to get her biceps working better. and to get this done, we had to come back for a regular therapy in the hospital. and according to her OT, who recently went to Fateha’s school to collaborate with her OT there, the school would not be able to do this as they did not have the equipment.

~transmission~
it’s so hard being a working mum with a special needs child. if only i could be available at any time any day, i’d have brought her for therapy sessions without having to apply for a leave from work. the bosses were not liking this.
~end~

anyway, they would be stimulating Fateha’s triceps using a Muscle Stimulating Electrodes.

she had this treatment before; during her monthly therapy during infancy, back when our favourite PT Fauzan was her main person-in-charge. he knew Fateha so much better because he had treated her when she was still in the incubator. too  bad, he left the hospital to be a lecturer in one of the polytechnics.

the only pic i have of her with the electrodes, during physio with Fauzan.

according to her current OT, we may need to get the electrodes ourselves once Fateha’s muscles are working well with the stimulation. all because they are not renting it out from the hospital and the school does not have it. the thing is, money is an issue for us. the electrodes price range is between $200-$500. and hubby has scrapped the idea of getting a maid.

err…is there any kind soul who has the electrodes and is willing to rent/sell it to us?

pweety pweeeeeeease?

on temporary basis

We brought her to the hospital today for her follow up. It was a year ago to be exact that she underwent a tendon transfer surgery.

Her progression has been rather slow but one thing’s for sure, her Erb’s arm and hand are more active than before. The only problem is her arm’s rotation and extension.

A/Prof and his team decided that we should do botox to loosen her tight biceps and to be on an elbow splint.

But right now, she’s to wear her old elbow splint (which was re-fabricated) temporarily.