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It is one of those mornings today. I slept on average 2 hours earlier. For some reason my son was unusually hyper in the early morning. He slept last night by 11 pm. Then woke up two hours later. He kept on fussing and fussing. I could tell he has this energy that need to be expended.
Last year I would try to put him back to sleep by rocking him in my arms, singing to him. When he was in that hyper state of energy, these methods usually did not work. He would still be up during my attempts two hours later. His wide eyes staring at me, wanting to wiggle out from my arms and wanting to do something more.
Today I learnt to let go and make peace whenever he is in this state. For one thing, Prof Ng has shared with me that some Biliary Atresia babies and toddlers do not have a normal sleeping rhythm because their liver is out of rhythm, so to speak.
There were rare moments he slept through the night, from 11pm till 8 or 9am the next day. Oh, how rested I was. Although he may wake up a few times in the night, but he can be easily soothe back to sleep.
This early morning however, he wanted to wake up and move! So, I allowed him to crawl over to the chair and cabinets because he used them as a support to stand. He would talk to me. I would sometimes try to understand him. Sometimes I would say, yes, yes. Sometimes I would be honest and tell Patrick - I don't understand you. I am sorry. Usually that would either cause him to "explain" more in baby talk or he gives me a look and turn his attention away to toys among others.
When he finally went to sleep by 5ish am today, I finally dropped into dreamland until I woke up by 7.30am by his cries. When I tried to soothe him back to sleep that's when I noticed one of his ears were bleeding.
Photo taken today of my attempts to try to stop his bleeding in his ear.
His jaundice induced itchiness can sometimes caused him to scratch until he injured his skin. Usually would be the forehead and ears area. This morning, it was one of his ears. Quickly I tried to stop the bleeding.
After attempting a few times of stopping the bleeding (I timed myself 2 minutes on two attempts), the bleeding still continued. Then I tell myself - just go by feeling or instinct how long I need to press the tissue against that wound. So, I started reciting seconds aloud. Until I reached 197 seconds, then I felt I should stop. When I observed the wound, no more blood seeping out. Thank goodness.
There were moments his jaundice can cause intense itching (pruritus). It can be so bad until his sleep was affected. His teary eyes with cries to help him feel better always put me into action. I would massage his body. I may use a baby moisturiser on his body. I would sing to him. I assured him, "Don't worry. Mummy will try to make you feel better."
Sometimes the methods I tried don't help. I would then read to him, or encourage him with toys and so forth. We both would wait until his sudden rise in bilirubin in his bloodstream lessen. Then he no longer would scratch. We did have a medication prescribed to help him ease off the itchiness. However, my husband mentioned that using too much of that would contribute further to deterioration of the liver. Until it affected his sleep, then we used the medication. Luckily, that state rarely happen.
Today one of those mornings, my sleep much affected. More than a year of this. Sometimes I could feel exhaustion clung onto my skin like an elephant glue. My mind in a state of tiredness that made me incapable to have a proper thought. I would always make a joke to my friends when I found myself reach to an exhausted state that I have become zombie-fied.
Luckily I had time to meditate and pray while Patrick sleeps. Yet if sleeping more essential rest than meditation and prayers, then I would listen to my body and sleep away.
Earlier I manage to have at least half an hour of meditation and prayers. Although I no longer felt as exhausted, tiredness still a part of me now which I find it manageable. Luckily I no longer work. How could I when my daily average of sleep is three hours? I marvel mothers who juggle work, marriage and family together.
Looking at my son sleeping soundly now, my heart opens like a sunflower facing the sun. No matter how tired I can get, seeing him with a rested face is a reward for me. Sleep well, my son.
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…