Follow up with KKH

This morning we went back to KKH for following up appointment.

1.30pm with occupational therapist

Therapist commented that Janelle had some improvement but of cos, need to continue to guide her. Jx had stop tip toe, stop pushing herself backwards so often hence is able to sit without support for more than a min (not very good yet, still need to improve), she is able to stand with support.

Areas where need improvement are sitting, reaching out for things and crawling. She is only interested in her hand and nothing else, so difficult to train her on reaching out. Therapist had teaches me new steps to guide jx, my homework for this moth is guide and teach jx how to be on her four and up to a sitting position. let me find sometime to edit the video and will blog it later for reference.


2.30pm with DrC

Janelle had improvement, she was seizure free for about 2 weeks before breakthrough when she is start coughing. Dr says it is normal to have breakthrough when the child is sick, not necessary to be on fever, but not as often as 3 days a couple of times. haiz... and since Janelle is still having seizure every 3 days, we might need to go through another round of blood test to test the dosage in her body. if the medication level is already max in her body and yet cant control the seizure, we have to change another drug which consist of more side effect. One of the side effect of this new drug is kidney stones. mummy nearly breakdown.. but hanging there strong..

We waited for 1.5hours for collecting medication.. Am so so angry with the system, they will always skip our numbers. Yesterday i was so angry i went up to the pharmacist and asked how long more we have to wait.. and guess what, after she checked, she took her janelle medication from the drawer and says next one will be you... pianz.. if i didnt asked them, guess i will have to wait till the their closing hours. Kogan checked with the pharmacist and she says janelle medication can only be dispatch by snr.. angry..

on our journey back home, i told kogan that i have my reserve to go on to new drugs. before we go on changing drug, we will go for a second opinion with Dr Lee Wei Ling since she had returned to duty. Try to call her up, but you know, big shot like her will have me transfer phone after phone. After 3rd try, i told the reception that with the help of our ministry, I managed to get Dr Lee Wei Ling to returned my call in apr and agreed to follow up with my case in june when she is back to duty. And finally, the next transfer was her clinic assistant to return my call. and after that eveything is fast, they asked me to sign a consent form that allows NNI (national neuroscience institute) for accessing of the medical record for Janelle in KKH. And they mentioned that they will call me again for appointment dates after Dr Lee had review these reports.