Ped appointment today...

Syafiah and my husband went to HSB's ped's clinic this morning. They accidently met with Fieza's husband. Not sure. According to my husband, he didn't meet Fieza. My husband and her husband were studying at the same school. Her husband was his senior.

Fieza is a friend who I first met in HSB around June 2008 for Syafiah's first shunt placement. After meeting them in June, we later met them again at the 1st floor. We've an appointment with the eye doctors, they've an appointment with the ped. We lost contact after that. However, recently I met her again in RH.

God sent them an angel too. They named her Sofie. Sofie is a DS who is now waiting for her turn for a heart surgery which will be done in IJN.

Back to Syafiah, nothing much said by the ped - Dr. Anu. Only she gave us the referral letter for us to take her to ENT clinic where she'll be assessed for her speech management. That would only be in October.



Her next list of appointments:

30 July 2009 - Occupational therapy (fortnightly basis)
8 October 2009 - Neuro clinics (3 months basis)
28 October 2009 - Speech therapy (1st time)
1 December 2009 - Pediatric clinics (for coordination only. She even had her jabs outside HSB).

On the way home, my husband bought these for her:

Anything for you, dear... ECPI drinking water, Lactogen II, PediaSure Vanilla flavor and a bottle on top of that is Appeton multivitamin prescribed by the ped at HSB. 1ml per day yer puan²!

Picture of her yesterday:

I feel a bit funny looking her like this... hahaha..

p.s. : I could hear she's talking right now in the living room, trying to mumble I think with her uncle. Sounds so sweet! I won't be able to attend all the appointments. Need to wait for Mastura to return home everyday from school. TQ very much for Mr. Husband. You've sacrificed a lot!

Weary Eyed I Fight..

I came across an inspiring story by Lindsay Kelly in Sensory Processing Disorder Resource Center. This is a great site indeed. I will make another entry later:

Weary eyed I fight- for my child who has not a choice.

I never imagined I’d engage in a relationship between this child’s senses and her brain. They often do not communicate well, and so I act as mediator, interpreter, and confidant. My hope is that one day my beautiful girl will do this for herself. I use whatever means necessary, although the strength to do so does not come from me.

My strength is drawn from her adamancy to be, and to be okay. Her tenacity to cope- gives me the tenacity to try one more thing, one more day.

When exhaustion and overload argue in my mind- we swing.

When the phone is ringing and younger brother is banging on a child’s drum- we escape to her “quiet place”.

When too much is too much- yet I need to keep going with the day’s activities - I still muster the words to say ’enough’.

Yes, I fight. Explaining to others, who would readily explain it all away, I challenge others to change their perspective. I do so because I know her reality will not change. I fight my own demons that whisper in my mind the secret wish for one day normal.

I loudly shout the blessings of having this beautiful girl- who can hear all the noise in the world. She offers me hope, and giggles, and emotion. She offers me a new perspective. While we did not have a say in the matter- we have a say on how the matter is handled, and so I FIGHT!

Yeah.. I challenge others to change their perspective. That's exactly what I'm doing and I hope I will succeed.