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Patrick jaundice level was the same as last week which was at 229. However, his weight dropped from 5.4kg (Monday, 2/7/2018) to 5.3kg ( Thursday, 5/7/2018).
The colours of his stools, on occasion was under "good" as in accordance to the stool chart and the doctor's assessment.
Baby Stool Colours Chart
On a good note, his appetite during the day has increased. He appeared to be growing more active. His activeness went much higher than usual. So much so until I had to ask Dr. Ng on my son's hyperactivity. Dr Ng assessed that it was because his nutrition level had improved. This reflected in his activeness, which was a good sign.
It was my mission impossible in trying to stop him from experiencing his trauma of re-insertion of his tube. It lasted for almost a week. My reflexes needed to be a lot faster than usual. Even when I am in a dazed mood especially after waking up from my sleep, I have to be fast in my reflexes.
Despite the fact that Patrick's growth in weight was small, however, to my surprise, his growth in personality appeared to be growing very well. He had grown to be more talkative and socialised even with the doctors and nurses. Whom he usually had an aversion to.
His blood test was done weekly. One section of the blood would identify whether it was an indication of a beginning of a liver failure. It used to be on a normal range. Last Thursday's blood test revealed that it had entered into the borderline range. The test is called INR (International Normalised Ratio). It is done to check whether the person have a blood clotting problem.
Doctor prescribed vitamin K for Patrick. It was to find out whether he had vitamin K deficiency or signs of the liver failing.
By next week's blood test, we will know whether Patrick would still be continued on monitoring stage or he will undergo preparation for a liver transplant.
I have to admit, it had been a roller coaster ride. A test of Patience for us. For the past few months, the doctor advice was maybe the next appointment a decision for transplant as Patrick did not appear to have any significant in improvement. However on each appointment, the conclusion would be not yet, as his condition was not worsening.
By next week, this decision arises again. No matter the results, both myself and my husband will take courage, faith and strength to do what we can for Patrick.
I had been appreciative of my friends' prayers, kindness, efforts, love and dedication for Patrick's especially.
Even in this hospital, there were a few mothers who blessed Patrick. Especially one particular mother whose baby daughter was in a more serious condition than Patrick. I called her Mummy V.
Whenever we bumped into each other especially in the pantry, she kept talking about God to us especially to Patrick. That God loves all children. When Mummy V mentioned that "God loves you" to Patrick, he automatically gave a big smile, as if he understood. As she continued talking of God to Patrick, she also mentioned of Jesus..something in the lines of "In the name of Jesus, He would heal you etc.."
Amazingly, Patrick listened attentively and appeared to acknowledge her by baby talk at the end of her prayers for him.
This mother's baby daughter was 6 months old at 1.8kg. She was born premature. Many tests were done. However, nothing was discovered as to the cause of her daughter's state. Many special formula milk were prescribed by the doctors and most could not help her daughter in gaining weight. It can be very expensive too. She shared one tin of a special formula milk can cost up to RM1,500.00 per week.
I was shocked by the expenses. I was concerned whether she could afford it. She shared that there are charitable fundraisers for milk powder. I felt relieved in hearing that. From what I understood, her husband works as a government servant and she herself, a nurse. Both are not making a big income that can cover the special milk formula expenses.
I am experiencing the best of Humanity, even at the hospital here. Feeling inspired, hopeful, grateful.
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…