Zahra and Nephrotic Syndrome - Day #2

First of all, thank you so much for your kind wishes and the prayers...insyaAllah..everything will be ok.

I don't have the emotional turmoil anymore..so don't worry, mommy is doing okay here. Trying my best here..

Anyway, am going to write the progress of Zahra with this disorder, just to share what's going on and keeping track of her record. The last urine test (yesterday) still showing the same amount (4+) even though the swollen face reduced a bit.

Below is the trail pictures of her on the second day confirmed with NS. We took second blood test and urine test that day to confirmed on the count of the protein leakage. The reading is remained the same, hence Dr Anushree starts the prescribtion straight away.

Zahra in the nursery room, while waiting for the urine test result.


At the cafe..still puffy. In fact he body is actually swollen but it's hard to see on a toddler because it always mistaken as chubbiness. But then I noticed, kalau tekan2 memang tegang, due to water retention.

Second time taking the blood

Where she cried her lung out, like usual. It's a painless procedure actually because the skin is numbed with the spray thingy but babies memang mcm ni, she doesn't like to be strained and she knows they are doing something to her hand. Kesian Zahra. Even at home, when she was on bed and saw her plastered hand, she cries while showing it to me :(

About Nephrotic Syndrome, they are a lot of other thing we should watch out too. First, the side effect from NS itself, Zahra will have high cholesterol. Well, it already shows in the blood test :( Her current reading is 10+, double up the maximum of 5 for kids. The tryglocerin (fats) also very high.. Nothing much we can do on the high cholesterol, but if it's too dangerous, she might have to take another medicine to reduce the risk of heart and blood vessel problems.

Side effect of the corticosteroids pulak, she will have high blood pressure and we have to control this, it has to be kept at 130/80 mmHg or below. So far the reading is okay as we only start the steroids for 3 days. Please please please no extra medication for Zahra...

Since this is long term and progressive disorder, I have to do daily urine test for Zahra. We already bought the kit..I'll share later. It's recommended to test on the first urine..but pagi tadi I tunggu Zahra kencing since 630AM til 9AM..still tak ada.. so have to miss the morning session :( Another thing about NS patient, they urinate less because the water went to the other part of the body. I have yet to perfecting my urine-collecting skill..

Sorry just want to post this..MrComot snap this pic for me. She was crying when they are poking her hand to take the blood and I was singing or something to calm her down. This pic somehow make me happy.. I don't know why.. maybe because I hold her tight, or just because.

Mommy just want to tell how much I love you baby. InsyaAllah you'll be ok..ok? Mommy and daddy will be by your side til the end.