In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Wednesday, 29 April 2009

ENT appointment discussing Muja tonsils

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

It was 9:20 am when I woke up last Friday, morning. Oh no! Muja has her ENT appointment at 9:45 am. I woke Muja father and rushed to get ready.

We arrived at the PMH at 10:15 am. Alhamdulillah the receptionist did not mind we late. This appointment was a refer back from Respiratory Medicine when Muja can't be in CPAP machine because there is not small mask for her cute little face.

Soon after that we went for hearing test in a sound proof room. Sometime she looked at the puppet when sound were made. According to the lady who did the testing she was not respond well. So she used some instruments to test her hearing.

Muja lost her hearing at birth time severely. She is using hearing aids since she was 18 months. She cannot talk but she is using a PODD book for communication.

I don't know how well she can hear, but I am sure she can hear especially when I call her name. She always smile when she hears her name.

After the hearing test we waited for a few minutes before Muja's name was called in. The doctor asked about the CPAP even though I knew he alredy read it in Muja's medical records. I told him the same thing. He checked Muja's ears and throat. Then he said that if Muja is his grandchild he would have her tonsil removed tomorrow, because it can make more damage to her brain. The tonsils blocks her airways so her oxygen level is low when breathing.

We said that we will think about it since Muja is scheduled for PEG surgery for sometime. Next months she will be under anaesthetic for her Botox injections and hopefully we get a dentist who can clean her teeth at the same time.

The doctor said that if she is going to remove her tonsils it will be like 2 months after her PEG incision. He also told us about complication of this surgery and some other stuff, like staying in ICU after it.

So now we have a decision to make...Insha Allah I better make Istiharah prayer to ask Allah to guide me to make the right decision for Muja. May Allah protect me from making anything that can harm my child. Ameen.

I am thinking about doing oxygen therapy for Muja again. Maybe this will benefit her.

Saturday, 25 April 2009

What happen during this autumn school holiday?

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

It is Autumn school holiday here in Perth. Muja is enjoying most of it. For me, it was chaotic. Muja's cousins sleptover. Sometime they came in during the day to play. I wish for some quiet time. Alhamdulillah when I feel like it I just go to my room and shut the door. Muja sisters can care for her while I am having a rest.

Alhamdulillah I have older children who can take care of Muja. They can feed her, bath her, play with her, hold her, cuddle her, kiss her, talk to her and be there for her. They are caring and loving siblings to Muja. I always tell them that when I am not around anymore, they are the one who is going to care for Muja.

The first day of school holiday started and my nephews, niece, her husband and her daughter came from Malaysia. A few days before my sister, her husband with their 2 children arrived. In a week time my oldest sister and her husband came with my aunty, my father's youngest sister. Can you believe it? All my siblings are here! WOW! Alhamdulillah they are staying at my parents house but occasionally they came for lunch or dinner and for sleepover.

Why are they all here? Actually, my family were getting together for my parents 50th wedding anniversary. I can't believe my parents have been together for that long. May Allah keep them together as long as He wishes, Ameen.

Alhamdulillah, it was a beautiful day on my parents anniversary day. All our family was there accept my sister's other 2 children. The moment was precious to be with all my siblings and seeing my grown up nephews and nieces. I think my parents were happy and proud too. Muja was happy on that day for sure.

Looking back, time fly really fast. My sister went back to Malaysia. Soon my other sister is leaving with their children. Then... everything back to normal. I don't like normal. I would like my life to be full of unexpected.

Wednesday, 22 April 2009

I hate it too

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

I hate it is my response to Cerebral Palsy: I hate it, Someone has to say it an article at Conductive World posted by Andrew Sutton.

I would like to thank Jacolyn, a mother of triplet one has cerebral palsy, for writing I hate it in her blog Lieck Triplets.

So these are what I hate ...

  1. I hate to insert a feeding tube through her nose into her stomach
  2. I hate the smell of her saliva
  3. I hate her dribble
  4. I hate lifting her wheelchair in and out of the car
  5. I hate my sister for making my other children outfits but forgetting Muja
  6. I hate when people hang their stuff on her wheelchair
  7. I hate when people ignoring to greet her
  8. I hate the less human look that people give when they see her
  9. I hate lifting her because it hurt my back
  10. I hate not being able to sleep well at night
  11. I hate the hustle of taking her out
  12. I hate attending her appointments
  13. I hate leaving her laying on the floor
  14. I hate my mother's house because it is not disability friendly
  15. I hate pushing her wheelchair through uneven surface
  16. I hate those who don't play with her when they are playing around her
  17. I hate that I need someone to help me with her
  18. I hate it when she cries all night because it means she is unhappy
  19. I hate when people don't help me with her when I need help
  20. I hate everything I hate

What do you hate?

Sunday, 19 April 2009

Muja's grandparents, siblings, cousins and niece picture.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

 


Muja with her Tok (grandmother), Tok Wan (grandfather), brother, sisters, cousins and niece.

Saturday, 18 April 2009

Muja at her grandparents 50th anniversary

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته


 


In this picture you can see Muja's grandparents, mama, abah, brother, sisters, uncles, aunties, cousins, niece and certainly Muja in her green Malay traditional outfit.

Wednesday, 15 April 2009

Muja's picture in her new wheelchair

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

 


This is Muja's new picture in her new quick zippie wheelchair. She is wearing a traditional Malay outfit. On the tray is her new communication book which she takes wherever she goes. She is at her grandparents anniversary.

Friday, 3 April 2009

Waiting for an appointment to do PEG surgery.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

It was early last year when Muja's speech pathologist, lovely Amy, discussed with me about the option of placing a feeding tube directly into her stomach. She referred Muja to a pediatric at The Center of Cerebral Palsy to discuss the matter. At that time Muja's father was not keen of doing the surgery so we decided not to do it yet.

The pediatric referred us to PMH Gastroenterology Clinic to discuss further and get more advise for Muja's father.

On November, Muja had her first appointment to discuss about percutaneous endoscopic gastrostomy (PEG) which is to place a feeding tube into her stomach at PMH Gastroenterology Clinic, but at that time her father was still with his decision to not proceed with any surgery. I told the doctor that I would like to do that for Muja but if her father will not approve, I have to go with him. Anyway he said that this mattar will be reviewed again in future so I can try to convince Muja's father for the meantime.

Currently Muja has a nasogastric tube that goes to her stomach through her nose and throat for feeding. The other end of the tube is hanging off her cheek. Most of her feedings are through this tube. She takes some puree food through her mouth but not enough for nutrition. It is only for her to taste.

On February this year, Muja had another appointment at Gastroenterology Clinic PMH to discuss about PEG. Alhamdulillah this time Muja's father has agreed to do the surgery, so Insha Allah we are waiting for an appointment for the surgery which could take aroung 6 months waiting period.