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Patrick's eyes appeared to question me again. I could not promise him that it would be soon. It had been 5 days now. He no longer cried as much compared to the first day of admittance.
Dr. Ng, Patrick's pediatrician requested the nurses not to monitor Patrick's body temperature and blood pressure during early hours of the morning. This not only disrupted his sleep, it also caused him to be fearful because he could not understand why the nurses kept putting on devices on his body.
Sometimes I brought Patrick around the hospital floor by putting him in a stroller. He usually enjoyed those times moving in and out of the room. Until one morning, something happened that caused him to be scared.
Every alternate day, his weight would be taken. He would be placed on the weighing machine. After that was done, suddenly there was a loud wail. A young child or baby's wailing. This baby's voice sounded like he/she was in pain.
Patrick in hearing that became frightened and cried as well. I quickly returned him to our room, telling him not to listen. I closed the door to our room. The wailing voice became much reduced. I started distracting Patrick by singing to him until he felt relaxed and happier.
Singing and dancing mummy for Patrick!
I would relied on poetry as a way to destress myself. Usually I shared with my friends of my thoughts and poems of our hospital stay.
One teardrop, two smiles coming.
Fear not, loosen up & laughing.
Singing hearts, Light's the way.
Hope still in me, go home any day.
I shall stand strong against any wave.
More love, Positivity, Light come my way.
Helloooo, morning! Patrick here!
Mummy practice something dear.
Day by day, we smile together.
Feeling good, let's this last forever.
No tube out, yay, yay, yay!
Otherwise oh no, mayday!
Home is where my Heart is,
Let this fat feeding finish.
Otherwise I will go ish ish ish!
This exercise no fun, ain't a bliss.
p/s - there mummy goes again. Weird faces..Oh mummy.
Patrick would usually have a suspicious attitude towards doctors, because to him, they always seem to poke him when checking his body. Also the doctors were involved in blood extraction exercises in order to check the levels of jaundice.
At one time, there were a few doctors near us during his weighing exercise. Patrick was removed of his clothing and diaper so that an accurate body weight can be obtained.
As the doctors came nearer to us, Patrick immediately cried louder. The doctors immediately backed away. I kept telling Patrick, "There's no pain. Take your weight only. NO pain. Trust mummy. Trust mummy. Doctor don't touch you. Trust mummy."
One of the doctors remarked that Patrick gave a suspicious and mistrustful look at all the doctors. I tried to make him understand that the doctors were here to help him get better. Not to hurt him. However, I was not able to make him understand the pain involved in blood extraction.
The night feedings were also causing him distress and discomfort. The doctor suggested to slowly increase the volume from 35ml per hour to 40ml per hour on a continuous ten hours night feeding.
Patrick kept waking up and cried uncontrollably as if he was in pain. I had to temporarily switched off the feeding. I noticed that within a few minutes, he looked more relaxed in my arms.
This disturbed me as to how much discomfort that Patrick had to endure. I discussed with the doctors on whether the volume can be lowered. However, they wanted him to continue at the same volume in order to see whether he reacted the same way. His crying to be also recorded.
Again, in the night, he woke up crying uncontrollably. I used my mobile phone to video record his crying for a couple of seconds. It was enough to show to the doctors the next day that I was not being an overprotective mother. They agreed to lower the volume of the milk feeding. However, to ensure efficient level of weight gain, within next few days that volume needed to be increased again.
There were moments when Patrick was in distress due to the night feeding with cries loud enough to burst my eardrums, I tried to calm him by singing. Usually it worked. I tried not to let his cries affect me emotionally while I calmly sing to him. I would sometimes place his sobbing body onto my chest while I leaned against the wall. My hips would feel strained and at times painful. My backache sometimes acted up.
My baby Patrick, how I comfort thee.
Yet wanting for Patrick to feel comforted matters more than my physical pain.
I hope I can make you feel happier. That despite you are in an environment that you dislike, you can still be happy. You are not alone in the hospital, Patrick. I kept telling him that. Mummy will be with you until we return home. This would not be a long time. We will return home. Mummy promise. Have patience, Patrick.
Last week, I
visited a friend who is suffering from Neurofibromatosis type 2 (NF2), a hereditary condition that causes her body to produce multiple tumours
throughout her life. Link to Yvonne's blog .
Photo was taken from her Facebook She
was supposed to go to the United States of America in May 2018 for a
cervical spine surgery. Unfortunately, before the trip, she fell on
her back and hit her head. She had to undergo a critical brain surgery instead
in Kuala Lumpur. The money she collected for the surgery in USA was all spent
on the brain surgery.
When I saw her,
the first thing I noticed was the protruding feeding tube at her stomach. Food
had to be
inserted through the feeding tube. Yvonne is deaf and blind. She is still bedridden and immobile as
a result of the fall she had in May 2018.
with Yvonne, I had to write an alphabet at a time, slowly on her palm. If she
doesn’t get the word, it must be
written all over again. It is best to use few simple w…
We could not believe how fast the funds came in after we uploaded our video appealing for funds to Patrick's liver transplant surgery fees.
I admitted that money was one big worry for without it, the surgery would not proceed. Once HOC set up the appeal on our behalf, I prayed. I prayed hard to God.
Suddenly a thought came. A video of us as a family, making a plea to friends, family and public. To save Patrick by donating to his surgery fees.
So, we quickly set it into motion on 22 May 2019.
I could not imagine the responses came beyond Malaysia - Australia, Singapore and more. From people whom I had not talked to for a few years, willingly came forward to donate, send a kind word, prayers and spread the video to their friends.
Before we go forward to the public, another worry I had was my mother. She has anxiety over Patrick. There were times I had to calm her down, assure her everything shall be fine when I admit I do not actually know whether it is so. I don't wish for my mu…
The birth of Patrick changed my marriage life from the two of us to the three of us, a family. We were excited, happy, worried followed by all kind of emotions for our baby son. So many things to learn, to experience. Breastfeeding, constant thoughts on our baby's well being especially when his jaundice appeared to rise during his first month. The lacking of sleep. There were moments I observed his breathing while he slept. We were amazed by every new mannerisms that Patrick displayed. We were so charmed when he first smiled to us. I would observed how gently my husband would treat Patrick and how Patrick would looked up to him, listening to his every word.
We were enjoying ourselves as new parents until something happened in the middle of November 2017 that changed our lives forever. "There is something not right with his stools."
My sister in law remarked to me while I tiredly changed Patrick's diapers. Mentally I can be exhausted as new mothers would be. We visited my s…