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

Tuesday, 27 October 2009

Ciater Hot Spring in Bandung

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

I went to Ciater Hot Springs in Bandung last summer holiday with my family. The hot springs come from Mount Tangkuban Perahu's active crater and is piped into the private pool in the private bungalow where we stayed.

After a hot sweaty weather from Jakarta, I appreciate the cool weather in Ciater. It feels like Autumn or Spring in Perth. I can still remember breathing it's cool mountain air. It was so refreshing and the air is pure.

How can I forget the views from the bungalow? Subhana Allah, it is picturesque all around. I can just sit at the veranda watching the green with tea plantation climbing over the hills. There is a beautiful masjid over the hill far away from my sight.

The bungalow we stayed at was designed with woods, river stones and bricks. The wooden floor in the top make sound
when people walk on. This double story bungalow has 2 rooms with double beds, hot and cold shower and en-suite bathroom. It also has fire wall feature with river stones in the living room, entertainment room with International TV channel and karaoke; dining room and a bar with refrigerator, coffee, tea and mineral water. There is a fish pond in the front of the house and all around it has veranda. The house can accomodate up to 12 people comfortablly.

The best part of this private bungalow is it has a private hot spring water pool. This sulfuric water temperature is between 400 C - 450 C. When the water reach the eyes, it's sting.

They call this water healing water. It is said that this water cure various disease like paralysis, remathism, nerve and bone diseases and other skin diseases. I say it is good to loosen Muja muscles and to make it less tight. The important thing is she was happy and just enjoyed herself being in the water. Alhamdulillah, she benefit from nature and I believe nature can cure.

The water also did good to my skin as I suffer psoriasis. I notice that I stopped scratcing my skin and I didn't get itchy from mosquito bite.

There are few resorts and spas near where we stayed. We all went horseback riding to the go-kart before we were lead to arung jeram. The arung jeram is the best adventure activity I have done since I was in school age. This will be in its own entry, insha Allah later. There is a lot of activities for children as well.

When I think back it was so calm and peace there. I felt less tense and it soothe my soul. I don't mind to stay there for the rest of my life. It was so pitiful that I have to leave such a restful and still place. I hope I can return there just to have a quiet and relax holiday, next time - insha Allah.

Sunday, 25 October 2009

Spa treatment at Muja's school.

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 remember three years ago Muja's father attended a massage course because he wanted to learn how to massage the right way for Muja. Masha Allah he likes to give Muja a massage and Muja usually enjoy her father's touch.

Muja has vision and hearing impairment. For that reason she responds well to touching. I know she like soft touches. Every time I touch her she gives me her lovely smile. She stops crying when I hold her hand. She wants patting before she falls asleep. She loves cuddle.

Recently after Muja came back from school, I looked at her communication or diary book to read what she did on that day at school. On one day it wrote "Muja had spa today". Instead of hydro therapy alternately she has spa every Monday and Thursday. She loves being in the water. She finds it relaxing and tries hard to move her legs in the pool. Masha Allah. I have to say that the swimming instructors in her school are number ONE.

This week for the first time I read, "Muja had a massage today" and the next day it says "Muja had a reflexology today". WOW it is great. I always support alternative medicine. I think it is wonderful that her the school now also go towards it. Way to go Carson Street School.

The massage benefit Muja in many ways. It releases her pain and stress. It also reduces her spasm.

Therapeutic massage involves the soft tissue release of the muscles, tendons and ligaments which enables the patient to realize greater flexibility. When passive stretching is included in a session, the receiver will experience a further release and improved range of motion.

An experienced massage therapist employs a variety of strokes and methods of palpation during the session that help to open up the body’s many nerve pathways and muscles that surround the nerve network. Tight muscles lack blood and thus cannot function properly until this condition is reversed. The nerve network, the muscles, and soft tissue are nourished with oxygen during the massage as more blood is entering these areas.


I am so thankful for Conductive Education Program at Carson Street School. With this excellence program I hope Muja will make more progress. Again I say way to go Carson Street School.

I just wanted to thank you all(The Conductors, Teachers, Education assistence and Nurses) for your patience this year. I know Muja isn't an easy child to manage and I've recognize the time you've spent working with her. It would be easier for you to label her a troublemaker and walk away but instead you deal with issues as they arise directly and fairly, and I appreciate that.

They have no idea that I am so happy that Muja is enjoying pre-school. The activities they plan, the room they decorate, the friendships they help foster, it's all incredible, and it's helping Muja (and us!) believe that school is fun, which is incredibly important.

I am thankful that there are people like you in our system. Muja will thank you one day herself, I am sure of it.

Sunday, 18 October 2009

Muja's scheduled hearing review.

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 the first week of school here after two weeks of Spring school holiday. Muja went back to school on Tuesday. She felt really tired after she came back from school. On Wednesday she did not go to school because she had her hearing review at Australian Hearing. She is wearing the Cielo 2P behind the ear hearing aids for both ear. She has moderate to severe sensorineural hearing loss at birth caused by lack of oxygen.

Sensorineural hearing loss

Sensorineural hearing loss can be acquired or congenital and is caused by damage to, or malfunction of, the cochlea (sensory part) or the hearing nerve (neural part).

Sensorineural hearing loss leads to a loss of loudness as well as a lack of clarity. The quantity and the quality of sound are affected and sometimes may limit the benefit of a hearing aid.

Causes of acquired sensorineural hearing loss include:

* the ageing process
* excessive noise exposure
* diseases such as meningitis and Meniere's disease
* viruses, such as mumps and measles
* drugs which can damage the hearing system
* head injuries.

In Australia, 20 children per 10,000 live births will be born with a congenital sensorineural hearing impairment. Causes include:

* inherited hearing loss
* premature birth, lack of oxygen at birth or other birth traumas
* damage to the unborn baby from a virus such as rubella
* jaundice.

At the clinic she was testing in the soundfield with bone conduction using the VROA testing. She respone to 65dB input. The audiologist, Katherine, changed the maximum output of Muja's hearing aids to 80 dB input when I complain about her being uncomfortable to loud noise. She also made her a new ear moulds with softer material to help it stick better and reduce whistling. Alhamdulillah there is no infection in her middle ears.

After the appointment we had morning tea at Croissant Express while feeding Muja through her PEG. When we arrived at the parking, Muja's little sister cried because she had a dirty nappy and hungry. Masha Allah she was sleeping since we left the house in the morning and woke up just on time that is three hours after her last feeding.

Monday, 12 October 2009

Muja's orthopaedic surgery pre operative meeting

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

A week ago Muja, her father and me went to PMH for orthopaedic surgery pre operative meeting with the PMH Orthopaedic Team (Cerebral Palsy Liaison Officer, Physiotherapist, Clinical Nurse Manager, Occupational Therapist, Social Worker and Orthotist).

Insha Allah, the date for soft tissues surgery has been scheduled for 27 October to releases her tight muscles that has pulled her hips out of its socket. Early this year Muja's right hips migration was 37% and last month's hip surveillance showed 39%.

Muja was very nervous that day. Her father was still thinking that she does not need this surgery. He was very consent about how uncomfortable she will be in the "broom stick cast" for six weeks.

It is not easy for me too. Sending her for another surgery, hospital stay and post surgery stress, these all make me uneasy. I only can put my trust in Allah The All mighty and remember the dua made by the people in the cave, "Our Lord! bestow on us Mercy from Thyself, and dispose of our affair for us in the right way!"

The outline that we discussed at the meeting:

  • surgical date - 27/10/2009
  • description of proposed surgical technique - lengthening of hip adductors +/- hip flexors and +/- hamstrings (knee flexors)
  • pain relieving medication - epidural
  • description/demonstration of splinting/plaster casts used post-operatively - plaster on both legs for about 6 weeks
  • seating and any possible wheelchair modifications that may be necessary - legboard on wheelchair
  • transfers - hoist and sling
  • toileting, bathing and general nursing care - sponge bath (keep plaster dry)
  • transport - in wheelchair in van with legboard bolted to wheelchair
  • return to home - about one week
  • return to school - usually about one month depending on her recovery
  • additional community support which may be required during this time - contact Local Area Coordinator for respite
May Allah helps us, ameen.

Muja's "cocktail" recipe.

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 recipe is for reference to Muja's carer, especially to her loving and caring big sisters Hani and Kayy. May Allah reward them with good abundantly for their unconditioned love.

60 ml Sunraysia prune juice
4 scoops Rafferty's Garden multigrain breakfast
1 teaspoon Abu Ibrahim's honey
1/4 teaspoon cinnamon
1/4 teaspoon Lawrance's chinese herbal
2.5 ml Katie's mix herb
1 ml Metagenics zinc drink
1/4 teaspoon Ultra Muscleze with Magnesium
1/4 teaspoon Ultra Potent-C High Doce Vitamin C

Mix all ingredients with H2O to make 250 ml. Feed Muja through her PEG. Flush with 10 ml of H2O.

Sunday, 11 October 2009

To remove or not to remove Muja's 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

Alhamdulillah, last Tuesday Muja's father and me took her to Natureco to see a Naturopath, Katie. We told her that we are not seeing any progress since she prescribed the herb mix especially her tonsil.

When the tonsils and adenoids is inflame, it is a sign that the body is fighting an infection. The tonsils become inflamed due to exposure to infection-causing bacteria or virus. Many herbs and foods can help fight the infection and soothe the inflammation of tonsillitis.

After listening to what we said, she prescribed her a new herb mix and vitamin C which can help fight the infection and soothe the inflammation of tonsillitis. When I said that I was worried that the herb mix trigger epilepsy to Muja as she make chewing and muscle spasm, she told me that she put echinacea which give a tingle in her mouth. In the new herb she took echinacea out.

She also increases her magnesium and zinc.

Masha Allah, the next morning I lay her little sister on her lap she used her left leg to touch her. At night her sister put a ball near her legs. She kicked the ball with both legs. It is too soon for improvement or it is just a coincidence. I don't believe in a coincidence but I believe it is meant to be a great sign for her improvement.

As for her sleeping alhamdulillah it is getting better. She still needs time to settle before sleep between one to two hours. Occasionally she takes up to three hours until she falls asleep. When she wakes up in the middle of the night, she needs repositioning and will go back to sleep. She is still snoring when sleep. Unlike a few weeks ago she will stay up until morning because she could not get back to sleep. By mid afternoon she will be too tired and become very grumpy and unsettled. When she is unsettled, she cries and has spasm.

Alhamdulillah, she open her bowel almost every day now, compare to three to five days a few months ago. Thanks to the prune juice and her PEG that is big enough for some real foods.

Alhamdulillah, something just happen by the Will of Allah. One day Muja had a big yawn and her father saw her tonsil. Since than he said about removing her tonsil immediately.

Sometime I feel like my husband is still on denial. He thought that there is nothing wrong with her girl and the doctors are making things up. It puts me in a difficult situation. For me any decision must be mutual. So if he says no to anything I have to go with him, so we're both accountable for the decision. I know this is not right. I should be more firm in making decision and be accountable for it. Although I hate to be blame if it is does not turn out to be what I expected.

Wow! It is so hard to be parent sometime. You always want what is best for your children but you can also be wrong. Am I making sense?

I need to make istikharah - ask Allah to guide me in making decision and make me satisfy with whatever He has decided.