Lightnur's Life Journey

UPDAAAAAAAAAAAATE! :)

2011-12-29T21:10:00.000+08:00

This might be my last post for 2011 so insha Allah I'll try to summarize some updates that I have not had time to post before.

We have a new team for Mujhee's physiotherapist, occupational therapist and speech therapist from the beginning of the year from Therapy Focus. I am grateful that we have this team because there were incident when the services was suspended and there were no therapist at some times. I am so thankful for this team for their support through out this year.

Alhamdulillah, Mujhee's second skin postural suit was made on November this year for her posture. This is her second suit. She chose a yellow material with white flowers and green apples. The material for this one is much better than the one before. Mujhee looks tall with the suit on and her position is symmetric.

Mujhee's physioterapist is reviewing her Symmetrikit chair. I'm not happy with her chair because it is way too big for her and does not support her posture and comfort.

Mujhee's sleeping was better at some stage but before the school holiday it got messed up again. I guess it's in her system. When Mujhee is sick she likes to sleep upright. When I talk to Mujhee's OT about Mujhee's sleeping problem she suggested a bed and mattress that could help her sleep better. Insha Allah, the bed that can tilt so it can help with her breathing and also prevent her from vomiting while laying down on her back. We are also going to get a mattress that will help her posture and hopefully will help her sleep.

During Ramadan we received Mujhee's Flamingo shower chair from Denmark. Alhamdulillah, it is easy to wash Mujhee without too much lifting and bending. It is also very light to move around. We have a problem with the toilet seat. The shower chair cannot fit on the toilet because it has a wide modified handle attached to the toilet seat. I experienced an unpleasant incident when I asked our real estate agent to change it to the normal toilet seat. The receptionist was so rude for telling us to return the shower chair and get a new one that can fit. Anyway, this got sorted through Mujhee's OT.

Mujhee's AFOs do not fit her anymore, so we should get a new one next year. It will be her 5th AFOs.

Mujhee's wheelchair insert needs an upgrade. Masha Allah, she grew out of it. We wanted to try X-Panda but Mujhee's OT said that it could not provide the support that Mujhee needs so we will custom make her 5th insert like we've done previously at CP Tech next year.

Mujhee has a vision assessment at the Association of Blind Western Australia in December. Mujhee has cortical visual impairment which means that there is nothing wrong with her eyes but it has to do with the brain that processes the information that is sent from the eyes. I know Mujhee can see light but I am aware that she is not following objects. For stimulating Mujhee vision, she needs big black and white pictures, bright toys and light. There is nothing more we could do in term of increasing her vision because at her age, her vision has fully developed.

Mujhee is seeing a chiropractor to help manage her spine and hips. He said that she has improved 60%. From my observations,Mujhee's muscles arerelaxed. She keeps her legs apart beautifully and hardly scissors her legs. She also holds her head up in the middle most of the time. Alhamdulillah.

The dietitian from PMH has reviewed her nutrition and increase her fibre in December this year. The increase hasn't made a big change anyway. We still need to give her Parachoc to open her bowel. Mujhee also has to put more weight on. We need to review this matter again.

I'm worried about the Conductive Education Program at Carson Street school for next year. This year, in term 1 she had a teacher who is not a conductor. In term 2 she had a teacher, from Scotland, who has a CE background. He is a great teacher but he could not get his visa so he had to go back. In term 3 she had various relief teachers until the beginning of term 4 where she got a conducter/teacher. Mujhee is on aspect of CE, meaning she is only getting some part of the CE program through her day at school.

I am looking forward to CE holiday program in January next year. I am hoping that it won't get too hot during the CE Program because it could trigger her seizure and she won't be able to attend the program. Since November, I have used Midalolam twice to control her seizures. Other wise, her seizure is controlable with Keppra and Clonazapam.

Since I got back pain, there are some things that we need to care for my back. How can I help Mujhee when I cannot help myself? Off course with the help from Allah, Alhamdulillah, I am so grateful that Mujhee has elder sisters who could love and care for her, a younger sister who likes to play with her and of course her caring father.

From my back pain, we received great news telling us that Mujhee has her own Local Area Coordinator from Disability Service Commission. The first time I met her I already liked her. I am sure she was sent to us by The Most Merciful so she could support us in anyway one could imagine.

We desperately need an air conditioner in our family room so that Mujee is not left alone in her room. Mujhee cannot move herself so she cannot control her body heat that would trigger seizure. Our LAC is helping us looking at split system installed through the ILC grant.

I am asking help for respite through the Commonwealth Centers and The Center of Cerebral Palsy, so that I can take a break from caring Mujhee and recharge my energy.

We are going to get a hoist to lift Mujhee and slide sheet for moving her on the bed so we can avoid lifting her.

We are looking for a new wheelchair hoist modified vehicle again to get Mujhee around easily for school and treatments and she would not be isolated at home. At the same time to helps Mujhee's father back and my back. The lifting has impact on our back now. We need to look after ourself so we can look after Mujhee.

When Mujhee was under anaesthesia.

2011-12-28T22:20:00.000+08:00

I'm wondering why I have feelings of uneasiness that something undesirable will happen every time Mujhee is scheduled for a surgery. For that I am afraid to send her to surgery and I end up delaying her surgery. I am always nervous, with the thought of losing her. The thought constantly occupies my mind. I worry if it will be her last breath and she will never wake up again.

From memory, Mujhee was under the first anaesthesia when she had her ear surgery done for glue ear. This surgery was to clear the fluid in her middle ears. Alhamdulillah there we no need for grommets insertion in her ears. I don't have any post in Lightnur blog for this procedure because I wasn't blogging at that time. She must have been about one year old. After that she was referred to the Audiologist at Australia Hearing by the ENT from PMH. Two weeks after Mujhee was born, a hearing test confirmed that she has moderate hearing loss. Allahu Akbar, that news and few other devastated me. Alhamdulillah, now she is using hearing aids to help her hear well. I think Mujhee can hear better than she can see.

There was only one time, alhamdulillah, when Mujhee was under anaesthesia for Botox injections (April 2008). I remember how she screamed after this procedure. Usually Midazolam was given to her for sedation, to keep her calm during the procedure. Alhamdulillah she was fine with it. The other day when I attended Mujhee's hip surveillance clinic her paediatrician mentions about anaesthesia for Botox, but I insist her that she is fine with Midazolam. I am just afraid for its side effect.

After that, Mujhee has gone through, three more devastating surgeries. On May 2009, she was under anaesthesia for a surgery to put a feeding tube on her tummy. Mujhee had a severe side effect of nausea, vomiting and dry mouth and had to be hospitalised for 8 uncomfortable days which was more than her scheduled period of 3 days. Alhamdulillah, after this surgery I suddenly see Mujhee's beautiful cheek without the tube dangling down. I find Mujhee's muscles are relaxed and her extension is reduced. And she stopped moving her head towards the nasogastric tube on her cheek.

The next surgery was to lengthen her hip adductors, hip flexors and hamstrings (knee flexors) which were done on October 2009. I told the doctor about how bad she reacts to anaesthesia, but then the post-surgery for this time was the worst. She was under a lot of pain and that triggered her spasm and seizures. The post about the pre-operative meeting is here

The last time she was under anaesthesia was when she had a surgery to remove her swollen tonsils that block her airways which made it difficult for her to sleep and have sleep apnea. This surgery was done on October 2010. Alhamdulillah, in this surgery, she recovered faster than I thought. Suddenly I find that Mujhee is so quiet without loud breathing.

Alhamdulillah, I realise how weak I am; I required a full submission to the will of Allah. When you are weak and vulnerable, the syaitan often snick onto your thought with bad whisper to your chest. When you remember Allah they ran away, but come back after you don't remember Him. We have to be careful with the whisper of syaitan.

I overcome this by doing a lot of remembrance of Allah. Have to say that I also take homeopathic remedy to calm me down during this time. Of course, I concerned more during the surgery but the best thing to do at this time is to put a complete trust in Allah and say lot of du'a, begging Him for what is good. Remember He is Your Rabb that able to grant your wishes. I always bring a copy of Al Qur'an so that I could read it while in the hospital.

The other thing to do is patience. Lack of patience, will fill the mind with bad thought. When that happen you wasting your time with unnecessary thinking. In the Quran, Allah swear by the time, that human is in loss, because the time is wasted with unnessaccery thought especially negative or bad one.

The most devastating time for me is post-surgery, the fact that Mujhee has to be put up with the side effects and pain. Thinking about what her reaction will be during her recovery from surgery also worries me, but then the best option is to put your trust in Allah. Only Allah knows and you don't know, so don't waste your time with your own predictions, astaghfirullah. Why worry about something you have no control over? This is not an easy path but be perseverance and insha Allah, He will be with you with the strength that you need.

I ask our Rabb, to grant us and Mujhee good health and keep her away from any major surgery, ameen.

Insha Allah, I hope the link here would help with the Anaesthesia - Frequently Asked Questions.

A precious gift and endless mercy for our entire family.

2011-11-24T21:35:00.002+08:00

As a family we do things together. We live, play and pray together. It's not only to keep us close but it's also to keep us care for and love each other. Alhamdulillah we're so grateful that Allah give us love, mercy and tranquility between us.

As a precious gift from our Lord, having Mujhee is not a burden at all for us but it's rather an endless mercy. We learn challenges and do things differently. There are times when it's easy for Mujhee to participate in recreation and social activities with us, like going to the playground that has a Liberty swing. Alhmdulillah, we have a transportation that can transfer Mujhee in her wheelchair so we can take her out often. But most of the time that is not the situation, and that makes us feel frustrated and isolated.

Mujhee teach us patience and to make true sacrifice. For example, we've given up going fishing and camping after we have her. For her sake we surrender our planning on going for trip around Australia in an RV,because with our big family of 7 we can't, as most RVs only have space for 6 and has no wheelchair access. Sometime Mujhee will be left out, when all the children go cycling around the neighbourhood. Even Farhana is starting to be interested in following her big sisters.

There are particular periods when we just don't have time to spend together especially when Mujhee is not well and hospitalised. When Mujhee has sleeping difficulty at night, it makes it hard for us to participate in day activities because she will sleep the whole day through. Sometime we're just tired mentally and physically as having a child like Mujhee demands a lot of commitments for all her medicals and therapies.

We just found out about the Community Living and Participant Grant, http://www.clpg.org.au/ With this funding, insha Allah, I'm hoping we can do something together, with Mujhee.

O Allah, for your mercy I hope, so do not leave in charge of my affairs even for the blink of an eye: rectify all my affairs. There is no God except You. Ameen.

Hips and spine reviews.

2011-11-13T20:38:00.003+08:00

Last month, during the Spring school holiday, Mujhee had her hips review at PMH. She had her Botox on July but after three months, its already showing its sign of wearing off as she is getting stiffer and curves her body like a fetus. From the review, her hips status is at risk for another hips surgery. What happened was her leg muscles are pulling her hips and cause her pain. This can also lead to bone deformity and dislocated joints.

Alhamduillah, her next Botox will be in three month from now, on February 2012. So, it will be another long wait. I'm just worried that during this time it will make her hips worse. I'm looking at other alternative. Subhana Allah, insha I will try to have patience. That reminds me of verses that teachs us that human beings are certainly in loss except for those who have patience. Subhana Allah, Allah reminds us through the Qur'an, as we human being always forget and are in need of a reminder, and that one of the formula for success is patience. May Allah give us the patience of Ayyub alaihi salam, ameen.

Verily Man is in loss, Except those who believe (in Islamic Monotheism) and do righteous good deeds, and recommend one another to the truth [i.e. order one another to perform all kinds of good deeds (Al-Ma'ruf) which Allah has ordained, and abstain from all kinds of sins and evil deeds (Al-Munkar which Allah has forbidden], and recommend one another to patience (for the sufferings, harms, and injuries which one may encounter in Allah's Cause during preaching His religion of Islamic Monotheism or Jihad). ~Al Quran, Al Asr: 2-3

At the hips review, Mujhee's paediatrician also discussed the result of Mujhee last spine x-ray. It shows abnormal curves of 15 %. I am sure her custom made insert and the second skin certainly help her posture from becoming abnormal other wise she could be a lot more worse. Mean while, I am taking Mujhee to a Chiropractor for correcting her spine and hopefully her hips as well, so insha Allah she will not need of scoliosis surgery in the future.

Because of the pain on Mujhee's hips she can't go to sleep at night. She sleeps most of the day even at school. They try everything to wake her up, but she just stay asleep for the whole day. Sometime she misses school.

Subhana Allah, I was reading verses of the Quran, explaining the Power of Allah in the following ayahs:
And We have made your sleep as a thing for rest. And We have made the night as a covering (through its darkness), And We have made the day for livelihood. Al Quran, An-Naba 11-13.

I humbly accept that without His Power we human beings have nothing. I can't even make my daughter go to sleep at night for her to rest. It is impossible for me to wake her during the day for her livelihood. I ask Him who is able to do all things, to make Mujhee sleep at night as a thing for rest and to make her day for livelihood, ameen. O Allah, accept our dua!

At Mujhee hips review, her paediatrician suggested to stop Clonbazam, gradually, as this medication does not control her seizure. Alhamdulillah now she is off that medicine and she is on Keppra and Clonazapam for her seizure. At the moment this medication does not control her seizure completely. I am grateful to learn first hand that not all medication can cure as it claims to. Subhana Allah, I understand that it is beyond medications that Mujhee seizure can be controled.

And when I am ill, it is He who cures. Al Quran, Ash Shu'ara:80

This ayah teach us a beautiful lesson about oneness of Allah and how it it fit for us as human being to be humble to our Creator or Master, as He is the one who create all disease and cure.

Before I end this post, I would like to share with you the tradition of our Messenger salallahu alaihi wasalam and that would also be my dua to finish. Insha Allah, say ameen together after you read this dua.

Ayesha (R.A.) stated that when anyone among them had an illness, Prophet Mohammad (SAW.) used to rub the area of the pain reciting the following dua:

أَذْهِبِ الْبَأْسَ رَبَّ النَّاسِ وَاشْفِ أَنْتَ الشَّافِي لَا شِفَاءَ إِلَّا شِفَاؤُكَ شِفَاءٌ لَا يُغَادِرُ سَقَمَا

"O Lord of the people, remove this pain and cure it, You are the one who cures and there is no one besides You who can cure, grant such a cure that no illness remains".

"Ayesha (R.A.) stated that when Prophet Mohammad (SAW.) was ill, he used to recite the four Quls, blow on his hands and pass them over on the back and front. He also recited these surahs, blew on his hands and passed them over his body during his fatal illness".

(Bukhari, Muslim)

Ameen.

Mujhee's sleeping roller coaster.

2011-10-09T15:31:00.008+08:00

Since Mujhee was a baby, she has always had a sleeping problem. The sleeping management team at TCCP said that Mujhee's sleeping disorder has a name, a delayed sleep phase syndrome. She has also became a nocturnal and used to stay up all night and sleep all day. It affected my family life, big time.

I remember, she wanted me to hold her in my arms until she fell asleep and when I try to lay her down on the bed, she wakes up with a loud scream. Big mistake! There is a position that she likes to sleep in which is in the sitting position on our old sofa. Although it was not good for her posture, I let her sleep that way.

A sleep study was done to determine why she has a problem with sleeping. Read about the sleep study here, here and here. From the study, the doctor said that her tonsils are too big and made her sleep apnea. She certainly has shortness of breathing, wheezy breathing or loud breathing and she also snores. The doctor from respiratory clinic prescribed her melatonin to help regulate her sleeping but that medicine has shown no success. He also recommended the use of CPAP machine. We decided to try the CPAP mechine but could not get the right mask for her as she was small at that time.The doctor from ENT gave us another option which was to remove the tonsils that block the breathing airway.

We also seek alternative medicine for this before we finally decided to remove it after seeking Allah helps first through istikharah. The decision was made, a year before the surgery, whether to remove the tonsils or not. It was a year ago when Mujhee had her tonsils remove. You can read the post about it in the Mujhee's tonsils surgery post. I was so frustrated on how slow the medical system here operates. For me it is not acceptable at all.

Alhamdulillah, after the surgery Mujhee's breathing is much better but her sleeping has not gotten any better and she still has trouble sleeping. She has a lot of rough nights on a regular basis. Now she likes to sleep on her own bed. May be her bed is comfortable because she has a sleeping system to support her posture during sleeping. Mean time, we are applying a funding for an electrical operated bed with an air mattress system.

After all that was done this far, I completely accept the fact that she will always have a sleeping problem. Looking at all that has happened, I am more then satisfied with what ever the outcomes Allah destine for her but I'm sure there are ways that could make her sleeping better. Please remember us in your prayer. Alhamdulillah 'ala kulli hal.

Now, everything pointing at her muscle spasms. May Allah show us what is good for Mujhee, ameen.

Washing Mujhee could not be so pleasant.

2011-10-05T21:39:00.003+08:00

Before Ramadan, the long waited shower chair for Mujhee finally arrived; the Flamingo. You can read more about Flamingo shower chair here. There is a post about finding a shower chair for Mujhee from the lightnur previous post, a visit to ILC.

Alhamdulillah, it's been so easy to clean Mujhee especially when she gets very stiff and unsettled. Mujhee's father finds it rewarding to wash Mujhee with the Flamingo shower chair because it is practical. There is not much lifting to do, compared to Mujhee's previous shower chair, which is wonderful for his back.

Before washing, I need to make sure that all the things neccesary is ready, like her towel, personal care and a set of clean clothing to be put on after. When washing Mujhee, I use the PODD communication book to tell her the washing activity. You can make washing fun by playing. There is an information for bathing in the Caring for Cerebral Palsy.

It is a great opportunity to teach Mujhee her body parts when washing. As I wash her, I show her different body parts using PODD communication while pointing out to her body parts. I wash her from head to toe so that I can point out each part of her body in the same manner and leave the private part and bottom last.

It was narrated by Abu Malik al-Ash'ari that the Messenger of Allah, sallallaahu alayhi wasallam, said, "Cleanliness is half of faith and Alhamdulillah fills the scale, and SubhanaAllah and Alhamdulillah fill up what is between the heavens and the earth. Salah is a light, and charity is proof (of one's faith) and endurance is a brightness and the Qur'an is a proof on your behalf or against you. All men go out early in the morning and sell themselves, thereby setting themselves free or destroying themselves." (Muslim).

Ibn Abbaas said: "The Prophet (peace and blessings of Allaah be upon him) passed by one of the gardens of Madeenah, and heard the sound of two men being punished in their graves. The Prophet (peace and blessings of Allaah be upon him) said: "They are being punished, but they are not being punished for any major sin. One of them used not to clean himself properly after urinating, and the other used to spread malicious gossip." (Reported by al-Bukhaari; see Fath al-Baari, 1/317).

From both of the above narrations, I need to take note for myself, first, the importance to be clean not only physically but also spiritually. Cleanliness should not be taken lightly as the Prophet (peace and blessings of Allaah be upon him) mentions in the above hadith that it is half of our faith. In the other hadith, the Prophet (peace and blessings of Allaah be upon him) told us that one of the punishment in the grave is caused by impurity after urinating.

Seizure medications: Clobazam, Keppra and Clonazapam.

2011-09-20T20:30:00.001+08:00

Things are getting much better with Mujhee. I am so grateful to Allah for providing this relief.

Last time, I wrote a post about her seizures spasticity and sleepings. Praise be to Allah for making her seizures controlable with medications. She's on Clonazapam, Keppra and Clobazam. When she started on Keppra, her stomach got really upset and she vomited after taking it. Her seizures still kept coming. Her teacher and education assistants at school reported her seizure actiivities. One day her whole body shook until she almost fell of the changing table. Her upper body twitched more than before and of course she still did her normal chewing. It tooked a few weeks until she torelate it and her seizures almost disappeared after she was prescribed with Clonazapam.

Mujhee has been on Clonazapam since July 2011. Her pediatrition prescribed it the day she had her Botox injections. I have a feeling that her seizures has improved because of the injections, usually that's the case. As the Botox wear off she is more stiff and her seizures show regularly. I could be wrong. Allah knows. There are some times that her seizures appear when I forget to give her medications. The seizures also happen when she is not well with a tummy infection couple of weeks ago. I am so grateful that the medications can control her seizures. I almost wanted to stop her medications as her condition got to worse.

Insha Allah, If Allah wills, I will post about her sleeping.

Mujhee choose black for her new Eid shoe.

2011-09-05T11:37:00.000+08:00

Remember on the previous post about Mujhee wanting to buy a new pair of green shoes at the shop. (You can read it here.) Can you believe it, I went around to all the shoe shops looking for a green shoe for Mujhee but I couldn't find any? I told my mother that I could not find any green shoes and she suggested to ask Mujhee to choose another colour. With my mum, I said to Mujhee using the PODD communication book about not finding the green shoe. I asked her to choose a different colour. She choose black which was not so hard to get.

I like the fact that she recognises her family members and familiar people; and has a strong relationship with them in her life.

Mujhee has no speech and will rely on gestures, facial expression and body language to communicate needs or feelings. Communication systems for people with this level of disability generally rely on photographs or objects to support understanding. For example, a chair or a photograph of a chair may be used with the spoken question: ‘Would you like to sit here?’

Alhamdulillah, before Eid I got her a black flat shoes and she loves it. She gave a big smile when she saw them.

Better start funding.

2011-08-05T10:05:00.016+08:00

A new goverment funding for children under 6 with disability - Better Start, and under Better Start there is Medicare rebate, or more information on Medicare rebate is here. The better start for children under 6 is a little too late for Mujhee's age but it's definately a great news for other.

Please look at this improtant campaign Every Australian Count for people with disability, their family and carers here.

Ramadan is just around the corner.

2011-07-26T23:53:00.008+08:00

I have to tell you that Mujhee's grandmother is a great believer that Mujhee can understand. Alhamdulillah, I am so grateful for her understanding. When she comes over or when we visit her, she always asked me to get the PODD communication book, because she loves talking to Mujhee with it.

The other day when my mum came to give Mujhee some money and asked her what she wants to do with it, she said that she wanted to buy a new green shoe at the shop with the PODD book. When her aunty asked if she wants to go shopping with her, she say yes. Mujhee said no, when her uncle asked her if she wants to give the money to him.

I guess it's about time for Mujhee to have a new shoe since Ramadan is just around the corner. We need to get new outfits for Eid. Subhana Allah I am so excited about Ramadan and looking forward to it.

I asked Allah to guide me and my family to the truth and to keep us in the straight path so that we can be together not only in this world but in the hereafter, Amin.

Botox: From wrinkle reduction to treating muscle spasticity.

2011-07-08T00:50:00.094+08:00

This year Mujhee had her Botox injections on Feb 2011 and July 2011. For Mujhee, it is to treat her muscle spasticity. For more information about Botox you can go here. Last time Mujhee had her Botox injection was on July 2009 and that was before the lenghtening of her soft tissue surgery, on October 2009.

The first injections for this year was done on the first day of school term 1 (Feb 2011). Mujhee missed her school that day.

Both of the procedures were done in ward 5B. Mujhee was given a comfortable room because she was on midazolam for sedation . I felt more privacy here. Previously those who were going through this procedure were all put in a room. Usually up to 5 patients in a room plus parent and the medical team. It was very crowded. I am telling you, the service is getting better here in PMH. Alhamdulillah.

After a general health check, cream was applied on the places where the injections were going to be given to reduce the pain from the injection . About half an hour before her injection, a Midazolam was given, to put Mujhee to sleep. In Mujhee's case, she looks sleepy but is still awake. It was not until the procedure finished, then she fell asleep.

Before the procedure, the doctor came in to asked about Mujhee's general well being. The injections was given in another room. For the very first time, she had an injections on her upper arm as well, just to make it easy for putting on and off clothing. Although Mujhee was not sleepy, she was quite calm. When the doctor injected her she screamed at some points because the needle must have hurt her. We were sent home after Mujhee had her feeding.

The second injection for this year was on July, the day her grandmother, hababati, left Perth. Usually the time between the injections was 6 months, but this time the doctor scheduled a month earlier. When I attended Mujhee's hips surveillance clinic, I told the doctor that Mujhee's spasm has got better soon after the Botox but it wears off four months after the Botox.

Alhamdulillah the procedure went well, and Mujhee was so sleepy she didn't complain about any pains when the doctor gave the injections. She has a total dose of 230 units to the adductors, rectus, femoris, psoas and pecturalis major. For your information, they are the muscles that was given the Botox injection at that time.

Before the procedure, I told Mujhee's pediatric that we have some issues with Mujhee seizures medication. She suggested to discuss them after the procedure. After the injection Mujhee's paediatric discussed with me about Mujhee's seizure. I complained that the medication she prescribed for Mujhee last time, the Keppra, does not control her seizures. After a long discussion she prescribed Clonazapam.

We went straight to the airport to farewell hababati, after the injections.

On Keppra for Epilepsy

2011-05-31T22:54:00.056+08:00

Mujhee has an appointment with her Paediatrician at Princess Margaret Hospital last Tuesday to discuss her medical condition as mentioned on my previous post about Seizures, spasticity and sleeping. Allahu Akbar, her seizures are increasing since the beginning of Term 2, three weeks ago.

Mujhee has more muscle twitches and chews her mouth constantly, and then she turns her head to the side before she stares into space for a few seconds. Occasionally she would roll her eyes up or side to side. After that she usually "wakes up" with a big smile but sometime she cries. At night she wakes up 2 to 3 times crying. It appears to me that she is having nightmares.

Mujhee's paediatrician asked me to lay her down on the bed so she can examine her hips. When her paediatrician checked Mujhee's scar on her upper legs from the surgery to extend her soft tissues, she found out that Mujhee has showing the signs of puberty. When I asked her if it is normal for a child like her to have started showing signs of puberty she said yes. I might post about this in another post.

I have mentioned to her that the Clobazam does not relax Mujhee's muscles. Her muscles got better only after Botox. I also told her that Mujhee's orthopaedic said, in the beginning of this year, that he will not be surprised if she needs another soft tissue surgery in the future. Alhamdulillah her hips are stable now.

After the examination, Mujhee's paediatrician comes up with a new medication for her seizure. She prescribed her Epilim and warned us to look for allergic reaction or if I feel like she's not herself after taking the medicine to bring her to the hospital. Mujhee will have Botox injections on her upper legs and arms on 7th July 2011. Meanwhile she will be referred to a Dietician to discuss and review nutrition she needs during puberty. She also needs to put on some more weight in case she needs any surgeries later on.

Before going home Mujhee had her blood taken for tests. She screams so loud when her blood was taken. It must hurt her a lot. Then I went to the pharmacy to get the Epilim.

The night when she started on Epilim, Mujhee fell asleep soon after taking the medicine. She woke up 2 times with shortness of breath. After I pat her, she went back to sleep. In the morning I found rashes on her nose, cheek and her tummy. Her eyes, nose and lips were swollen. She vomited after I fed her breakfast. She had seizure activity more frequently.

I was about to take Mujhee to the hospital, but tried not to panic. I thought I called the number given by the pharmacist first. The pharmacist asked me to call the doctor who prescribed that medication when I asked her whether to stop the medication or not. I called the CP liaison officer so that she can get in contact with Mujhee's paediatrician. I was worried because her seizure keeps coming. When the paediatrician called me back she told me to stop the Epilim and let her body flush the drug off her blood system before beginning a new medication.

We came back to PMH on Friday to see Mujhee's paediatrician for another medication, called Keppra. She told me that Keppra might make her sleepy and give her upset tummy. When I went to the pharmacy to get Keppra, I tried to return the Epilim but for safety policy it is not refundable. So I found myself pouring 3 bottles of Epilim down the drain. What a waste?

Remember she had her blood taken on the previous appointment. Alhamdulillah, the test was all good but then the pathologist missed the test on Vitamin D which was the main reason for the blood test.

When I was at PMH I also asked her to refer Mujhee for vision test just to understand what her current vision is.

For now Mujhee is on Keppra to control her epilepsy. Alhamdulillah she hasn't had any allergic reaction but she gets upset tummy and vomits. Insha Allah, if she still vomits throughout this week I will call her paediatrician for advice. She is still chewing and twitching but not as much as before.

I ask Allah to give her shifa and keep us patience for the test He bestows on us, amin.

Seizures, spasticity and sleeping.

2011-05-20T19:48:00.037+08:00

In the beginning of October last year, after the tonsils surgery, Mujhee's spasticity increased. I found that it was hard to change her because she wraps her arms around her body so tightly while her knees are so hard to straighten. Kay, who gets Mujee ready for sleep every night also complains about how hard it is to change her pyjamas.

Between the early months of October until February she would curl her body like a ball when sleeping and in the morning she cried if I tried to straight it. It was not easy to put her in and out the wheelchair as her muscle were hard and stiff as rocks.

I was not the only one who noticed it but her teacher at school also complained about how hard her muscles were. She was not happy when stretching. She suggested that she was in big pain and need to seek medical advised.

I called the CP liaison officer and requested to see a paediatrician but they didn't get back to me soon. I chased them again for the second time until we got an appointment on the 30th November 2010.

While waiting for that appointment I took Mujhee to our GP for advise. He prescribed Diazepam for Mujhee which relax her muscles but make her sleepy during the day time and awake at night. Prior to this Mujee started developing sleepless night. We went back to the GP and he suggested lowering the dosage.

The day Mujhee attended Rehabilitation Mobility clinic (30.11.2011), I told the doctor, who usually give her Botox injections, and the physiotherapist, who happen to be her first one, that her muscles had tighten. It was hard for us to change her and hold her. One thing for sure, she was in a great pain.

The doctor checked her hips and noticed how strong her muscles are. She prescribed her Clobazam, and scheduled for Botox in February. She also made a referral to EEG to check her seizures activity. I didn't remember when Mujhee's EEG was done but until now, the doctor hasn't seen her to discuss about the result. I assumed that her result are still the same from the previous EEG.

I also didn't remember if the medicine has made any difference to her muscles before the Botox. She was still sleeping with her body curled like ball. At that time her sleeping time was 2 am every night. She had the Botox injections on the first day of school this year. That injection was her first Botox after her hips tissue release surgery more than a year ago. She had Botox before the surgery.

Alamdulillah after the injections her sleeping got better. Her muscles are much more relaxed. For the first time the doctor also gave her Botox on her upper arms. It does relax her upper body but not much because sometime her arms are still very hard to stretch especially when I change her top. Things improved so much after Botox. I remember her teacher has suggested for baclofen but I didn't take it seriously because her condition was better at that time.

Now Mujhee is still on Clobazam but her seizure increase from last week. She twitches her arms muscles more. She chews her mouth repeatedly, and then she turns her head to the side before losing focus for a few seconds. She woke up a few times at night crying like she has nightmares. She could not get back to sleep until I calm her down and put a warm wheetbag on her foot and tummy. The nurse at her school told me about how she rolls her eyes up. Her swimming instructors also notice. Now that her medical conditions have changed she needs to see the doctor soon. I just called PMH for an appointment to discuss her conditions. Alhamdulillah we got an appointment for next Tuesday (24/05/11).

I wonder if her sleeping disturbed has anything to do with her increasing seizures. Is she in pain? It seems like I have more questions than the answers.

The start of term 2

2011-05-16T21:40:00.004+08:00

It's the beginning of term 2 already. Alhamdulillah Mujhee was happy to go to school today. Yesterday when I told her that she was going to school in the morning, she said that she didn't want to go because she wanted to have a rest. I told her that she already had her 2 weeks for holiday, then she gave me a big cheeky smile.

Mujhee has a new, awesome teacher this term and she still has the same lovely conductor that lead her class with a program called conductive education. Her class has pretty, energetic and multi task education assistants to support special needs students like Mujhee. Alhamdulillah Mujhee is very blessed for having such great people around her at school every day.

The first day of this term Mujhee missed school because she had an appointment at Second Skin for her postural splint. Mujhee has been wearing it since August last year. Alhamdulillah the suit still fits her perfectly so there is no need to make any adjustments. When wearing the suit, Mujhee's hip and body becomes symmetric. With the suit she is easy to hold. When sitting with the suit on she looks taller and she can hold her head straight.

A week ago, during the school holiday, Mujhee had the hearing appointment at Australia Hearing. She didn't respond well to the hearing assessment as usual. Alhamdulillah her ears are healty. I asked the audiologist to make a new mould because the old one don't have the parts that can hold them properly.

That's it for now. I hope with this post I will continue writing regularly in this blog to update Mujhee's activities and progresses, insha Allah.

The feeling of losing her

2011-05-15T11:14:00.002+08:00

I was surely overwhelming when I heard about Mujhee in the phone.

"Mujhe can't breath. We are calling an ambulance," said the nurse at her school.

"Do you want me to come to school now or straight to the hospital?" I asked her. My mind shut down. The sudden fear prevent me from thinking. I didn't even know what to ask or say. I was just worried that something bad is going to happen to her. I tried to stay calm by saying dhikr.

"Go to the hospital," She told me.

Abah, Fanna and me went to the PMH hospital in a hurry. It was Friday. Abah was thinking about his Friday prayer and his work after prayer. When I told him that it was our daughter's life and death at hand, he quickly rushed to the hospital. I can't blame him for being insensitive about this. I think he is immune to it. The hospital and pain have become normal to him.

When we arrived at the hospital, she wasn't there yet. Soon after that I saw an ambulance enter. I moved quickly towards it. When the paramedic open the door I saw one happy girl smiling back at me. Alhamdulillah. I was released. Eventhough she looked perfectly fine, they took her into the emergency ward to do further assessment.

Before I went in, I talked to Mujhee's EA who came with her about what happen at school. When I sit next to her on the hospital bed I can smell poop. I looked into her nappy and saw one hard and dry poop with the size of a tenis ball. Ouch! I was wondering maybe if she was having a hard bowel movement until she was struggling to breath.

The doctor susspected that she was choking. I doubt it because she couldn't move her hand to her mouth. She also doesn't take food orally. Alhamdulillah after all the examine and x-ray she is ok.

I was so close to the feeling of losing her but I am grateful for what I learnt from it.

Therefore remember Me (by praying, glorifying), I will remember you, and be grateful to Me (for My countless Favours on you) and never be ungrateful to Me.
( سورة البقرة , Al-Baqara, Chapter #2, Verse #152)

Warkah untuk anak cerebral palsy

2011-03-08T23:46:00.001+08:00

Assalamualaikum warahmatullahi wabarakatuh,

Kehadapan anak ibu yang sangat ibu sayangi lagi kasihi. Doa dan harapan ibu agar kamu selalu sihat sejahtera dan sentiasa dipelihara Allah Azza wa Jalla. Tiada yang menyenangkan hati ibu selain dari keadaan kamu sihat afiat dan senyuman manismu. Semoga rahmat dariNya mendatangkan kebaikan kepada kehidupan kamu.

Anakku sayang, warkah ini ibu coretkan buat tatapanmu, apabila nanti kamu sudah berupaya membaca. Insya Allah, semoga Dia mengizinkan detik itu.

Anakku sayang, warkah ini adalah bicara hati dan perasaan ibu menjalani kehidupan, yang pelbagai warna seperti indahnya pelangi yang baru menyinari alam selepas rintik-rintik berhenti, bermula dari detik pertama kamu dikurniakan olehNya untuk bernafas di muka bumi ini. Kehadiran kamu telah banyak mengajar ibu, terutamanya, erti kasih sayang tanpa batas. Semoga kasih ibu kepadamu sampai ke syurga.

Anakku sayang, malam itu rasa sakit di perut, membuat ibu terbangun dari tidur. Jam menunjukkan pukul 2 pagi. Ibu menyangka ianya permulaan rasa sakit untuk bersalin. Ibu gembira kerana saat yang ibu nanti-nantikan telah tiba walaupun usia kandungan ibu baru mancapai 8 bulan. Perancangan Allah Azza wa Jalla itu lebih hebat, Subhana Allah. Ibu semakin tidak sabar untuk bertemu denganmu.

Anakku sayang, serta-merta rasa sakit di perut ibu bertambah kuat dan ibu dapati perut ibu mengeras dan tiada pergerakan. Jam 3 pagi ayah dan ibu terburu-buru bertolak ke hospital. Kami sampai di hospital lima belas minit kemudian. Ibu terus di bawa ke bilik melahirkan. Jururawat yang bertugas memeriksa denyutan jantungmu. Tiba-tiba beberapa doktor pakar mengerumuni katil ibu kerana denyutan jantungmu sungguh lemah. Mendadakan doktor menyarankan pembedahan untuk menyelamatkan kamu.

Anakku sayang, ibu tidak diberi masa untuk membuat keputusan. Kertas untuk ditanda tangan tersua di hadapan ibu. Pen terletak ditangan ibu. Ibu terbaring di atas katil, merintih kesakitan yang amat. Tidak jemu-jemu ayah menyuruh ibu menyebut kalimah tayyibah. Tanpa membuang masa ibu menanda tangani surat keizinan untuk bedah walaupun banyak lagi persoalan yang muncul dalam fikiran ibu, sambil katil di tolak ke ruang pembedahan.

Anakku sayang, ibu kebingungan sejurus tersedar dari kesan anestetik iaitu ubat bius yang di beri untuk memberi rasa tidak sakit ketika perut ibu dihiris untuk mengeluarkanmu. Perasaan ibu, baru tadi ibu ditolak masuk ke dalam bilik pembedahan tapi sekarang ibu sudah di wad ICU. Banyak wayar yang berselirat di tubuh ibu dan ibu menggunakan alat bantuan pernafasan. Jam di dinding menunjukkan jam 5:45 pagi. Ibu memegang perut. Tak terasa kamu di dalam perut ibu lagi. Abah yang ada di samping ibu mengejutkan ibu dengan berita yang tiada seorang ibu pun yang sanggup mendengarnya.

Anakku sayang, dari penjelasan ayahmu, kamu selamat dikeluarkan dari rahim ibu pada jam 4 pagi. Tanpa denyutan nadi, anakku. Pakar-pakar perubatan bersusah payah membuat CPR untuk mendapatkan kembali denyutan jantungmu. Dua kali mereka melakukannya. CPR dilakukan apabila denyutan nadi tidak dapat di kesan. Saat ini sangat cemas. Antara hidup dan mati. Kalau denyutan nadi tidak kembali ahli perubatan akan mengesahkan mati.

Anakku sayang, Alhamdulillah, kamu berjuang kembali untuk mendapatkan nadimu. Kamu memang ditakdirkanNya untuk hidup. Dia mempunyai rencana yang senilai permata yang sukar dibeli untuk kita. Cuma pada waktu itu ibu terlalu naif untuk memakluminya. Ibu masih dalam kebingungan dengan kejutan sehebat letupan bom atom di Nagasaki. Ibu tidak pernah menduga ini akan berlaku.

Anakku sayang, kamu terus dibawa ke NICU kerana keadaan kamu yang kritikal dan memerlukan alat bantuan pernafasan sementara ibu juga dibawa ke ICU. Ibu masih belum melihatmu lagi. Tapi abah telah gambarkan betapa comelnya kamu.

Anakku sayang, kata ayahmu lagi semasa kamu dilahirkan kamu mengalami kecederaan otak yang sangat parah akibat uri terlepas dari dinding rahim ibu. Hanya Allah Azza wa Jalla yang maha mengetahui hikmah disebalik kejadian ini. Doktor pun tidak dapat mengenal pasti punca sebenar. Hubungan oksigen yang memberi parnafasan untukmu terputus sedikit demi sedikit menyebabkan kamu dalam keadaan trauma mengharapkan bekalan oksigen untuk meneruskan hidup.

Anakku sayang, kecederaan parah di otakmu menyebabkan fungsi saraf yang mengawal pergerakan kamu terganggu. Masalah yang dikenali sebagai cerebral palsy ini menyebabkan pergerakan (motor) otot-otot gagal berfungsi secara normal. Kamu disahkan menghidap cerebral palsy jenis spastik quadriplegia yang mengakibatkan kelumpuhan otot-otot pada kedua-dua belah kaki dan tanganmu.

Anakku sayang, kali pertama doktor pakar saraf menerangkan kepada ayah dan ibu tentang keadaan kamu, dunia kami seakan berhenti di situ. Ibu lebih hampa saat itu apabila diberi jawapan bahawa bahagian otok yang rosak itu tidak akan sembuh untuk selama-lamanya. Harapan ayah dan ibu berkecai untuk melihat kami bermain dan berkejar-kejaran dengan kakakmu.

Anakku sayang, mengenang kembali saat pertama ibu bertemu dengan kamu mengundang sedih dalam hati ibu. Keadaan ibu masih tidak stabil. Ibu masih belum bertenaga untuk bangun dan masih memerlukan bantuan pernafasan seperti kamu. Dari wad ICU katil ibu di tolak ke wad NICU untuk bertemu denganmu. Walaupun ruangan wad agak sempit pihak hospital memastikan ibu dapat berjumpa denganmu. Air mata ibu mengalir deras melihat terlalu banyak wayar yang berselirat ke tubuh comelmu. Ibu tidak sampai hati melihat kamu begitu. Benar kata ayahmu. Kamu sangat comel. Ibu menghulurkan tangan untuk mencapai tanganmu. Cuma itu yang mampu ibu lakukan saat itu. Dan siapa sangka sampai hari ini ibu masih terus memegang erat tanganmu untuk mengharungi perjuangan hidup ini bersama.

Anakku sayang, semenjak lahir kamu tidak boleh menyusu. Kamu menghadapai kesukaran menghisap dan menelan. Air liurmu terus meleleh sehingga membasahi bajumu kerana kamu tidak mampu menelannya. Setiap kali ada sesuatu yang menyentuh mulutmu, kamu malah tersentak. Ibu rasa sangat terkilan apabila kamu dalam dakapan ibu tetapi tidak dapat menyusukan kamu dengan susu ibu. Terlalu dekat tetapi tidak memungkinkan. Ibu terasa bahawa anugerah ini sangat menguji diri ibu terutamanya. Bermulalah ujian demi ujian dari detik pertama kamu lahir.

Anakku sayang, semasa kamu berumur hampir satu tahun kamu masih dalam keadaan tidak boleh makan dan minum melalui mulutmu. Pada waktu itu pakar doktor gastronomi menyarankan ayah dan ibu untuk meletak sebuah tiub makanan di perutmu tapi kami berkeras untuk tidak melalukannya kerena kami masih berharap agar kamu makan malalui mulut seperti kanak-kanak sempurna yang lain.

Anakku sayang, dari lahir kamu makan melalui tiub halus yang dimasukkan ke dalam perutmu melalui lubang hidung dan saluran perut. Tiub itu selalu pula terkeluar dari perutmu kerana kamu kerap muntah. Ibu atau ayahlah yang akan menusuk tiub itu masuk ke dalam perutmu melalui lubang hidung dan tekakmu. Hati ibu manakah yang tidak akan sayu apabila terpaksa memperlakukan begitu terhadap seorang bayi kecil dan lemah yang meronta-ronta kerana tidak selesa. Namun ibu lakukan juga semata-mata untuk kebaikan kamu. Maafkan ibu jika waktu itu ibu menyakitimu, sayang. Kamu perlu makan dan membesar untuk meneruskan hidupmu, nak.

Anakku sayang, semenjak itu semua makananmu melalui tiub tersebut. Makanan perlu dihancurkan dengan menggunakan blender sehingga sangat halus. Kalau tidak cukup halus, makanan itu akan menyumbatkan tiub. Kamu juga perlukan formula susu yang khas lengkap dengan segala nutrisi yang diperlukan untuk membesar. Ibu bersyukur kerana selepas pemasangan tersebut, kamu tidak muntah lagi. Ada kalanya ibu terfikir apa ertinya kehidupanmu jika kamu tidak dapat menikmati makanan, nak. Rupanya kehidupan ini lebih besar ertinya dari hidup untuk makan.

Anakku sayang, seperti mendaki gunung yang curam ibu rasakan ujian yang dituliskan buat kita, ibu sudah puas jatuh dan tidak mudah juga menyerah dengan ujian ini. Manusia mana yang tidak diuji? Kehidupan adalah ujian. Kita semua harus menghadapi cabaran hidup masing-masing.

Anakku sayang, apabila umurmu menjangkau setahun, barulah ibu menyedari bahawa kamu tidak berupaya untuk membuat sebarang gerakkan. Ibu dan ayahlah yang menjadi kakimu, membawamu mendapatkan rawatan pemulihan dan ke temujanji dengan segala doktor pakar. Ayah selalu memberitahu ibu bahawa kamu tiada bezanya dengan anak-anak lain. Ibu tahu ayah masih menafikan keadaanmu. Ibu sedar bahawa jauh di sudut hati ayah ingin melihat kamu seperti kakakmu. Dapat bermain dan ketawa bersama denganmu. Berkejar-kejaran.

Anakku sayang, sewaktu kamu menjangkau umur tiga tahun ayah dan ibu seperti mendapat tamparan yang kuat. Kamu masih tidak mencapai tahap-tahap yang diramalkan untuk anak biasa. Seharusnya kamu sudah boleh bercakap dan berlari. Malah kamu masih belum berdiri dan berjalan. Kamu perlukan sokongan untuk duduk kerana kamu tidak dapat menggunakan otot-ototmu. Beratmu juga semakin bertambah, ibu dan ayah tidak berdaya mengusung kamu ke mana-mana.

Anakku sayang, membuat keputusan untuk mendapatkan sebuah kerusi roda untukmu adalah kenyataan yang sangat berat untuk ibu terima. Waktu itu, dengan kepayahan ibu dan ayah belajar untuk menerima hakikat yang kau tidak bakal bisa berjalan seperti anak-anak yang sempurna. Anak ibu cacat.

Anakku sayang, hampir saban hari kau menangis kesakitan setiap kali badanmu tergerak atau ibu mengerakkanmu. Ubat penenang tidak membantu. Semenjak umurmu dua tahun lagi kamu menerima suntikkan Botox pada bahagian otot-otot yang tegang untuk membantu mengurangkan keadaan anggota tubuh yang spastik, setiap enam bulan sekali. Suntikan ini sangat berkesan untuk merehatkan otot-ototmu dari spastik namun ianya hanya bertahan dalam empat hingga lima bulan sahaja.

Anakku sayang, apabila umurmu menjangkau lima tahun, kamu telah diberi tidak kurang dari 6 suntikan Botox. Namun suntikkan itu tidak dapat mencegah otot-ototmu dari tegang malah ianya bertambah teruk sehingga menarik tulang pinggulmu keluar. Kamu dinasihat oleh doktor pakar orthopedik untuk membuat pembedahan memotong dan memanjangkan otot-otot yang tegang agar dapat mengurangkan rasa sakit dan mengelakkan anatomi yang tidak normal.

Anakku sayang, sehingga hari ini ibu masih tidak akan dapat melupakan saat pertama kau keluar dari bilik pembedahan tersebut. Kamu menjerit kesakitan. Kalaulah ibu dapat mengambil sakitmu, berilah semuanya untuk ibu tanggung. Ibu mana yang sampai hati melihat anaknya dalam kesakitan? Dalam hati ibu ada sedikit kesal kerana membenarkan pembedahan tersebut. Namun ibu kawalkan emosi ibu dan cuba sedaya upaya agar tetap redha atas ketentuanNya.

Anakku sayang, setiap kesukaran akan berakhir dengan kesenangan, begitulah janji yang Maha Kuasa. Hampir dua bulan kamu memerlukan rawatan istimewa. Selepas itu kamu perlu physiotherapi intensive. Pembedahan tersebut dapat merehatkan otot-otot kakimu selama setahun tetapi kamu masih tidak menunjukkan kebolehkan untuk duduk, berdiri dan apalagi berjalan. Namun ibu bersyukur setidak-tidaknya ianya dapat mengurangkan sakit.

Anakku sayang, walaupun kamu tidak upaya berjalan kamu girang kalau di bawa ke luar. Mungkin kamu telah terbiasa dengan kehidupanmu yang penuh dengan pelbagai rawatan dan temujanji dengan doktor pakar. Kamu anak yang bertuah kerana sejak kecil telah mendapat rawatan awal. Langkah intervensi awal penting untuk memulihkan ketidakupayaan dengan rawatan pemulihan seperti senaman dari ahli fisioterapi, teknik-teknik pergerakan, ahli terapi pertuturan dan hidroterapi.

Anakku sayang, hospital menjadi rumah ke dua kita. Di hospital kamu mendapat perhatian pakar-pakar perubatan seperti pakar saraf anak-anak untuk masalah epilepsi atau sawan; pakar telinga, hidung dan tekak untuk masalah pernafasan dan pendengaran; pakar kanak-kanak, pakar nutrisi, pakar bedah ortopedik untuk tulang, pakar orthotik untuk alat bantuan orthotic serta kasut khas; pakar pemulihan untuk mengurus masalah spastik atau otot-ototmu yang kejang, pakar audiologi untuk pendengaran dan alat bantuan pendengaran, doktor gigi dan beberapa pakar lain lagi. Kerana kamu ibu dikenalkan dengan banyak cabang dalam dunia perubatan. Ibu hampir tidak percaya terlalu banyak pakar yang terbabit untuk menjaga kamu.

Anakku sayang, kamu memerlukan peralatan khas untuk memudahkan kehidupan. Penggunaan splint atau AFO, kasut khas dan alat-alat bantuan orthotik termasuklah kerusi khas, standing frame, rollator dan walker diperlukan. Kamu juga menggunakan alat bantuan mendengar kerana kecederaan otak yang kamu alami mengakibatkan kehilangan pendengaran. Membesarkan anak istimewa memerlukan belanja yang besar. Setiap alat kamu pasti berjumlah beribu-ribu bukan ratusan. Syukurlah kepada rezeki yang melimpahkan dariNya. Ada sahaja datangnya rezeki untuk kamu dari sumber yang tidak pernah ibu sangka. Ibu percaya bahawa anak istimewa murah rezekinya.

Anakku sayang, satu masalah yang tidak dapat dipisahkan dengan pengidap cerebral palsy adalah masalah epilepsi atau sawan. Epilepsi berlaku apabila bahagian saraf di dalam otak yang mengawal pergerakan mengeluarkan rangsangan atau cetusan daya elektrik yang luar biasa, memberikan kesan sementara terhadap tingkahlaku, pergerakan, deria, persepsi dan perasaan. Serangan ini terjadi kerana kecederaan otak yang berlaku kepadamu sewaktu lahir. Ibu tidak jemu bertemu dengan banyak orang yang mengaitkan epilepsi dengan sakit buatan orang dan gangguan mahluk ghaib kerana kurangnya kefahaman mereka.

Anakku sayang, berapa hari selepas kamu dilahirkan, kamu mendapat serangan epilepsi yang pertama. Ketika diserang epilepsi kamu mengalami sentakan kaki dan tangan diikuti dengan tidak sedarkan diri buat beberapa detik. Selalunya pernafasan kamu terhenti kerana tersumbat dengan air liur yang berbuih. Ada kalanya kamu menggigit lidah atau pipi berulang kali. Buat masa ini kamu dirawat dengan ubat anti-epilepsi.

Anakku sayang, malam bererti siang buatmu. Semenjak dari lahir sehingga kini kamu menghadapi kesukaran tidur malam. Ibu dalam dilema menghadapi kesukaran ini. Walaupun dengan bantuan perubatan kamu masih tidak mempunyai waktu tidur yang teratur. Satu masa dahulu ibu telah usahakan segala macam upaya namun tiada satu pun yang menghasilkan kejayaan yang memuaskan. Kini ibu mengaku kalah dan menerima keadaan yang kamu seperti burung hantu yang tidur sepanjang hari dan berjaga di waktu malam. Ibu rasa kamu tidak dapat membezakan siang dan malam. Masalah tidur memang tidak dapat dipisahkan apabila menghadapi kerosakan sistem saraf, apabila sel-sel otak menghadapi kecederaan yang teruk.

Anakku sayang, hampir setiap pagi pasti ibu dikejutkan dengan suaramu walaupun kau masih belum sanggup mengeluarkan walau satu patah perkataan jua. Ibu akan terus menjenguk kamu dan mengucapkan salam serta mencium pipi lembutmu. Walaupun penglihatanmu kurang tajam, ibu tetap melemparkan senyuman kepadamu. Ibu pasti bahawa satu hari kamu akan membalasnya. Di saat ibu hampir hilang kepercayaan, kamu memberi senyuman pertamamu sewaktu umurmu dua tahun. Bermula dari hari itu keyakinan ibu bertambah bahawa kalau diizinkanNya pasti kamu akan terus membuat banyak lagi kejutan buat ibu.

Anakku sayang, seandainya satu pagi ibu terjaga tanpa suaramu, ibu akan secepat kilat mendatangimu untuk memperhatikan gerakkan jantungmu. Ibu bimbang kerana kamu menghadapi masalah pernafasan sebelum tonsil kamu dibedah buang sewaktu kamu berusia lima tahun. Ibu juga khuatir seandainya muka kamu tertutup dengan bantal lalu kamu tidak dapat menolak atau menghalang bantal itu. Kamu menghadapi masalah fungsi motor pergerakkan kerana otot-otot anggota badanmu termasuk kedua kaki dan tanganmu kejang atau spastik. Kamu terlantar tidak bermaya kecuali bila ibu mengerakkan kamu.

Anakku sayang, setiap hari ibu akan memandikanmu atau kadang-kadang ibu hanya mengelap tubuhmu dengan air panas dan minyak essential lavender. Katanya minyak tersebut dapat merehatkan otot-ototmu yang kejang dan keras. Gigi kamu, ibu juga yang menggosokkannya. Walaupun umurmu sudah enam tahun kamu masih seperti bayi yang tidak berupaya mengurus dirimu sendiri. Kamu masih menggunakan lamping. Kencing dan berakmu, ibulah yang membersihkannya. Oleh kerana kamu tidak berupaya mengawal pergerakkan otot-otot, kamu juga menghadapi masalah membuang air besar atau kecil.

Anakku sayang, ibu tidak pernah menyangka keadaanmu akan berlarutan sebegini. Sungguh segala yang berlaku diluar dugaan ibu. Kita manusia biasa, kita sangat lemah. Tiada yang kita ketahui kecuali setelah berlaku. Ibu tidak pernah menyesali takdir. Bagaimana ibu mahu menyesali takdir sedangkan lima puluh ribu tahun sebelum Dia memulakan penciptaanNya, segala-galanya telah tertulis di Luh Mahfuz. Apabila ibu berasa pilu ayahmu katakan kepada ibu bahawa semua yang berlaku adalah di luar kawalan kita malah telah tertulis untuk kita sebagaimana di kehendaki olehNya, anakku. Allahu Akbar! Allah Maha Besar!

Anakku sayang, walaupun kau sudah ke sekolah namun segala persiapan untuk pergi ke sekolah ibulah yang melakukannya kerana kamu tiada upaya untuk melakukan. Di saat anak-anak seusiamu sudah pandai membuat pilihan, pakaian apa yang mahu di pakai, tetapi tidak bagimu, sayang. Ibulah yang akan memilih apa yang akan kamu pakai dan menyarungkan pakaianmu selepas memakaikan baju khas untuk mengelakkan badanmu menghadapi masalah pertumbuhan tulang yang tidak normal. Kemudian ibu sarongkan stokin panjang sebelum mengenakan splint atau AFO dan kasut boot yang ditempah khas dari pakar orthotik. Rambutmu juga ibu yang memberusnya. Kadang-kadang kau menjerit sakit apabila ibu mengurus rambutmu yang kerinting seperti rambut ayahmu. Maafkan ibu, sayang.

Anakku sayang, ibu pernah mengalirkan banyak air mata tapi satu peritiwa yang sangat terkesan dihati ibu adalah selepas melahirkan adikmu melalui pembedahan menyebabkan ibu tidak mampu mengangkatmu. Sepanjang hari kamu akan terlantar di atas katil. Ibu hanya mampu mengiringkan badanmu ke kiri atau ke kanan setelah kamu penat telentang. Yang paling menyedihkan ibu adalah apabila kamu menangis kerana sakit atau tidak selesa. Ibu tidak dapat memeluk dan mengangkatmu duduk di atas ibu untuk menenangkan keadaan. Ibu rasa sangat lemah. Ibu ada di sampingmu tetapi tidak dapat membuat kamu selesa. Nanti apabila ayahmu pulang dari kerja barulah ayahmu memandikan kamu dan mendudukkanmu di kerusi rodamu.

Anakku sayang, ibu sangat menyesal dengan nasib anak-anak istimewa lain yang hanya terlantar di rumah kerana tiada kemudahan untuk bergerak dan menjadi aktif. Tambah menyedihkan ada ibu bapa yang merasa malu untuk menghadapi masyarakat yang tidak faham tentang anak-anak istimewa. Ada juga ibu bapa yang menyembunyikan anak mereka kerana sikap segelintir masyarakat yang memandang rendah kecacatan. Masyarakat perlu mengubah mentaliti ini sebaiknya memberi sokongan yang kuat kepada pesakit dan keluarga pesakit.

Anakku sayang, ibu tidak pernah rasa malu untuk membawamu keluar rumah. Kenapa ibu harus malu dengan kekuranganmu, nak? Sedangkan kamu adalah anugerah istimewa dariNya. Amanah yang tidak akan ibu abaikan. Dengan pertolongan dariNya, ibu akan cuba memberi yang terbaik untuk memudahkan kehidupanmu. Ibu akan pastikan kamu mendapat apa jua peluang seperti insan biasa. Ibu tidak pernah memperdulikan orang-orang yang memandang rendah terhadapmu dan tidak memberi sokongan. Ibu tetap melayan mereka dengan baik kerana kita punya martabat dan harga diri.

Anakku sayang, ibu merindukan satu saat bila nanti kamu akan memanggil ibu. Ibu tahu kamu faham dan mengerti apa yang selalu ibu perkatakan kepadamu cuma keadaan fizikalmu tidak membolehkan kamu mengeluarkan kata-kata. Mungkin belum tiba masanya. Ibu setia menanti. Ibu akan terus bercakap dan bernyanyi kepadamu walaupun kamu tidak pernah menjawap kalau ibu bertanya. Ada kalanya ibu tidak faham tapi ibu belajar membaca riak diwajahmu.

Anakku sayang, sebelum ibu mengakhiri warkah ini, hasrat hati ibu hanyalah keredhaanmu di atas pemberian ibu yang tidak sempurna selama membesar dan menjagamu. Maafkan ketidak sempurnaan ibu.

Wassalam,

Ibu yang mencintaimu.

P.S. Ibu rindukan rasa pelukan dan ciuman darimu.

P.S.S. Ibu sayang kamu.

Keterangan lanjut tentang Cerebral Palsy di Dunia Palsi Serebrum, Pendidikan Khas di Malaysia, Children with disability dan Lightnur Life’s Journey.

Mujhee hearing aids is missing

2010-11-20T21:39:00.073+08:00

After Mujhee's tonsils surgery I found out that her hearing aids were missing. I remember I packed them in Mujhee's bag a day before the surgery. She didn't get to wear them at the hospital because she was sleeping most of the time there. She was on quite heavy drug. When we got home they were not in the bag. I looked for them but could not find them any where in the house either.

On Wednesday 17.11.2010, Mujhee had an appointment at Australian Hearing for reviewing. Australian Hearing is a government-funded hearing services for children up to 21 years old. Mujaheeda's missing hearing aids was funded through here.

When I told Mujhee's visiting teacher from WAIDE about the missing hearing aids, her only concern was if we will be in trouble for loosing it. Alhamdulillah when I told the audiologist about it, she said that she would order a new pair right away as it is an urgent matter. For now until the fitting day Mujhee hasn't used an hearing aid for almost three months. How silent is her world without any sound? I wonder if she likes living in the silence because she hates noise. She usually complains about us being so noisy. Remember the story about Hana, Mujhee little sister. She said that she doesn't like her because she is noisy.

She was unsettled on that day. I took her out from her wheelchair for a cuddle. Alhamdulillah, her ears was great and there was no signs of ear infection. She needed a new moulds as well. I was still holding her on my laps when the audiologists made the moulds for her new hearing aids.

While the audiologist checked her ears, her sister, Tazzy played Mr and Mrs Potato Head with her. She asked Mujhee which body parts she wanted to put on. I was telling her that Mujhee can communicate by turning her head or looking away for no and looking at me, the thing or picture to say yes. So when she saw Tazzy and Mujee played she realised how Mujhee can communicates. It a is fantastic feeling when someone actually gets what you have been saying. Off course I feel frustrated when telling people that Mujee can communicate, but they look at me strangely or like I am insane. She can talk? Are you serious? Are you saying that she can talk? Well I say, yes. She talks to me. She talks Mujhee's language. It's just that you are not trying hard to understand her language. Or maybe you are not giving her a change or perhaps not interested. Hello people!

I learnt a lot from Mujhee. One important thing that Mujhee ask me was to pause and take a breath. Communicate with non-verbal takes so much time which we all just don't have it especially in the world that demand everything in a fast motion. Mujhee told me to stop and enjoy being in silent. She taught that the best word to say is not saying any word.

Some people just has to see to understand. Most of the professional that Mujhee see are in a hurry to do their job. They have no time to stop and listen to her and are not interested at all in giving Mujhee an opportunity to choose because they believe that she can't do such thing. What I want to say is that I was glad that after her audiologist saw how Tazzy play with Mujhee, she give her time to choose the colour for her new hearing aids. She let her take as much time as she needs with a happy face. I appriciate her understanding and time.

Stick around and I'll tell you what colour she choose and more about her new hearing aids in the next post, insha Allah.

When Mujhee sleeping time all get mix up.

2010-11-15T14:05:00.002+08:00

Insha Allah in this post I would like to write about Mujhee's sleeping. I hope this sleeping post wont put you to sleep instead.

Mujhee's sleeping all of a sudden changed. Not for good but worst. But I tell you it was not too bad. I've been through a lot more worst time before, alhamdulillah.

It started in the middle October 2010, when the weather got warm. That night Mujee could not get to sleep. I turned the aircondition in her room on, but she still could not sleep.That afternoon she fell asleep in the car on the way back home. Her teacher told me that she had a nap at noon.

The next day I kept Mujhee at home as she didn't get enough sleep. I thought that she would be tired and knock down around mid morning but I was wrong. She was still wide a wake in the afternoon. Around 6 0'clock she fall asleep until morning.

One morning I got her ready for school. The same thing happened again where she fell asleep after school, then I found her awake all night that night. That weekend morning she was asleep all day until afternoon. That night she slept only for a few hours and stayed awake all Sunday.

Now I got to see her sleeping patern. Here it repeats.

That Sunday night she sleeps well but on Monday when I sent her to school she was still asleep. Around noon, her teacher called me to take her home as she was still asleep. They tried to wake her up but she kept sleeping. When she was at home she was still asleep until sunset. So that night she was awake the whole night. She did not go to school the next day and a few days after that because the change in her sleeping.

Maybe she needs medication to help her sleeping pattern get bact to normal. In the moment she sleeps just before midnight with the help of melatonin. Insha Allah I am hoping that her sleeping will get better and earlier in no time.

I just wonder if she is in pain. At school her teacher said that her spasticity is increasing. I notice her muscle is stiff more than they were before tonsils surgery. Maybe she should get back to Botox clinic or prescribed with some sort of medication. I don't know. Too much things are going on in my mind at this time, what I need now is to seek medical advise.

A new postural suit for Mujhee.

2010-11-10T22:01:00.001+08:00

It was suggested by Mujhee's teacher/conductor last year to have a custom made second skin suit for her posture. During June 2010 someone from Second Skin came to Mujhee's school to make an assessment wheater a second skin will benefit Mujhee.

Early August 2010 I received a letter from Second Skin recommending Mujhee for a postural suit after that initial assessment.

Looking at the qoute I was shocked, and contacted Mujhee's OT for an advise. She suggested me to try apply funding through AARBIC. She helped with the application. Alhamdulillah soon after Eid ul Fitr 2010 we received a great news that the funding was approved.

Alhamdulillah we got an appointment right away, other wise the next clinic would be in six months. On the 20th August 2010 we went to Second Skin for measurement. Basically there were a lot of measurering to make. I can't believe that it could take more than an hour. I remember how my mum used to measure me and my sister when she made us dresses when we was young. It won't take any longer than 1 minute. Enough of my old history. Now back to reality. =)

We had an appointment at the Second Skin for fitting the postural suit a week after Mujhee's tonsils were removed (12.10.2010). After putting the suit on Mujhee we can see a big different to her posture. She sits straight and tall. It was super easy to hold her. Without the Second skin it was extreamely hard to hold Mujhee because she has such strong muscles which I have to push harder to make her stay in a position. Sometime it is easy for me to let her just lay on the floor than to hold her up sitting or standing. She is quite a grown up young lady.

A few days after the fitting day, someone at Second Skin called. He said that we have to come back for an adjusment around the neck. He looked at the pictures taken on the fitting day and found it a bit loose. Actually I realised that it was loose too, but I thought that it was suppose to be like that. After the adjustment it was perfect fit.

Now the suit fits her well, but we have a tiny weeny problem. Not really small problem. Off course I don't want her food to come out the other end. Other wise she will lack nutrition which can create another senario. Mujhee get sick after each feeding with the suit on. I think the suit hold her body really tight almost until no space for food to stay in her tummy.

Another problem is she does not tolerate wearing the suit together with her AFOs. She would be so tight when I put them at the same time. So her teacher/conductor suggested to introduce to her slowly and one at a time and one of her feeding time change to later towards the end of school hour when the suit will be off for that day. She is not wearing it weekend anyway or when she sleeps.

Alhamduliilah, her teacher and the EAs at her school has done an amazing job that now Mujhee tolerate the suit and AFOs at the same time now. Just when you feel everything in it places, more obstacles rise. It will be in another post, insha Allah, about spasticity, sleep and missing hearing aids.

Mujhee's fourth AFOs

2010-10-29T17:12:00.001+08:00

On term 3 of 2010, during Ramadan, Mujhee's teacher told me that her AFOs were too tight for her and recommend not to wear them any more. I spoke to Mujhee's physiotherapist from Therapy Focus about them. I didn't expect her call a week later with an appointment at Ortothic Solution for a new AFOs on the 20/08/2010.

For this appointment I had to pick up Mujhee's sister early from school to accompany us. Other wise how on earth could I manage to carry Hana and push Mujhee at the same time and who is going to hold Mujhee for casting and mind Hana while I do it? Anyway Mujhee is so fortunate to have sisters who could always be count on. Wait until her sisters get a driver license, so they can drive her around. ;-)

Alhamdulillah, the day we went for casting, her physiotherapist also came. It made things so much more easy as she can do all the talking. I get physically, and not to mention mentally, tired of talking expecially when we get a lot of appointments at the same time. That time we saw Paul, an energetic young but professional Orthopedic Surgeon, who made the session a bit interesting.

It took two weeks (3/9/2010) for the AFOs to be ready for fitting. They look great on Mujhee and her foot look bigger. Alhamdulillah, we don't have to go back again as it fit Mujhee perfectly.

This is Mujhee's 4th AFOs. From memory she had her first one when she was about one year old. The AFOs are used in the treatment of disorders that affect muscle function. They help to control ankles and weak limbs. I don't have a post about her first and second AFOs but there is a post about Mujhee's third AFOs or splint in Casting and Fitting Muja's Ankle Foot Orthoses - AFOs.

Mujhee's tonsils surgery.

2010-10-27T18:34:00.000+08:00

Insha Allah in this post I would like to write about Mujhee's surgery to remove her tonsils. Alhamdulillah, I was glad that her tonsils has finally been removed last Monday (04/10/2010). We came in the PMH at 6:45 am and it was not until 7:15 that the admission nurse called us in. After registering we were sent to day surgery department at level 6.

Mujhee had her pre-surgery examination while an anaesthetic doctor also checked in on her. I changed her clothes and put on her pink pyjamas. She was so calm unlike the night before. The ENT doctors came in and asked me to sign the consent form for the removing of the tonsils. We were told by one of the ENT doctors that she will be the first.

The night before thesurgery she was distressed and sleepless. I told her to sleep early because tomorrow will be a big day for her. Her sisters kisses her and wish her a success surgery. I carried her to her sisters room as she didn't stop crying. Her sisters tried calm her down with words of comfort. Maybe she was scared of the surgery.

Kay said, "It's ok Mujhee. You can do it because you are strong". She also said, "You won't feel anything because they will put you to sleep".

Then Neefah said, " There's nothing to be worried about Mujhee. You won't feel a thing. They'll put you to sleep and everything should be okay. You're a brave girl Mujhee, you've done this a lot of times before. You'll be fine Mujhee."

Before Tas went to sleep she kiss Mujhee and said, "Don't cry Mujhee because you are a strong girl".

Soon after that she fell asleep.

As the doctor left I started feeling nervous. I talked to Mujhee to calm me down. I said to her the insha Allah everything will be alright and I will see her first at the recovery room. I am so afraid something will go wrong and started to get teary. I said istigfar as the negative thought came into my mind. I recited the three Quls surah and wiped all over Mujhee's head and body for Allah's protection of any harm before the surgery. I aslo whispered to her the shahadah, Muslim's testimony of faith. Let it be the last words she heard before she lost her conscience.

Suddenly I remember the words that Mujhee's father loves to say. حَسْبُنَا اللَّهُ وَنِعْمَ الْوَكِيلُ
which means, "Allah (Alone) is Sufficient for us, and He is the Best disposer of affairs (for us). ( سورة آل عمران , Ali Imran, Chapter #3, Verse #173). This words certainly pushed my nervous away, alhamdulillah.

It was 8:30 when we walked into the theater. The hardest part was to leave Mujhee by her self after she lost her conscience. Every time I left her in the theater I always have the thought that I will never know whether I will ever get to see her again after that. I will always be aware that, it can be our last time together. Oh well it was never easy. It made me feels how small I am for not be able to do anything except give all my trust to Almighty Allah. La haula wala quwwata illah billah - Indeed all power and might belong to Him.

At 11:00 am I was brought to PICU to meet Mujhee. Alhamdulillah, it was a relief when I saw her. But she was so distressed and her breathing was louder than before. All the wires that attached to her made her more uncomfortable. I wished I could hold her in my arms to make her comfortable. Alhamdulillah, she settled down after being given oxycodaine. I sit by her bed and wait until she woke up at 5:00 pm when I got to hold her and gave her my big cuddle. The cuddle that made her feel secure. The whole afternoon she was fine. She was fine until I went home. At around 10:30 pm her father called me from the hospital to tell me that Mujhe has been unsettled. I said to him that maybe she is tired and wanted sleep.

The next morning I visited Mujhee. Her father told me that she woke up at 12 midnight and 4 am. It was normal because she usually wakes up at that time for re-positioning. So there is nothing for us to be worried about except her breathing was still extremely loud that morning. So the doctor decided to keep her for another night in a ward and gave her steroid to reduce the swell that cause loud breathing. After noon we went to ward 5C. Alhamdulillah, she was well the whole day, I was with her in her bed. Once a while I hold her in my arms, which she liked so much. That afternoon her sisters came in. Mujhee was happy to have her sisters visit.

Alhamdulillah although she didn't sleep well that night, her breathing is much better. I was happy that she was allowed home that morning.

Being at home is much better than in the hospital. She is recovering well, alhamdulilah. At home she was on antibiotic and panadol for few days. She stays home instead go to school because she was advised to rest at home for 10 days. A couple of days after came back from hospital, her breathing was still so loud and she felt uncomfortable inside her throat. She only settled down when I held her in my arms. I am so grateful that her father and sister, Hani can take turn holding her. She was only better in a sitting position, even when she is sleeping so she ended fall asleep on the reclining chair.

As I write this, she is sleeping in her own bed in her room. Her breathing is normal and free of any medications. Alhamdulillah everything went well.

If Allah helps you, none can over come you;

2010-10-14T20:37:00.001+08:00

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

If Allah helps you, none can over come you;
And if He forsakes you,
Who is there after Him that can help you?
And in Allah let the believers put their trust. S3:160

Great videos of CECWA - Conductive Education Centre of WA

2010-09-26T23:56:00.008+08:00

I just wanted to share with lightnur readers these two videos that I took from the youtube cecwa1 profile about Conductive Education in Western Australia. These videos are also featured in the CECWA website. Please visit the website and learn about CE and you can always support generously through it's link here.

The first video is a Conductive Education in WA - every kid can: a visual journey

A moving picture journey of children with motor/physical disabilities and assoiated needs engaged in Conductive Education in a school setting: footage from families associated with Conductive Education Centre of Western Australia (CECWA) - www.conductiveedwa.com.au

Masha Allah, a fantastic video of Mujhee and her awesome friends. Please pay special attentions at 0.20, 1.02, 1.16 and 1.22 for Mujhee. =)

The second video I would like to share with you is About CE in WA, CECWA and family stories - interviewed

Conductive Education Centre of Western Australia (CECWA) - history of Conductive Education Centre in WA; the CE education approach explained by teacher conductor; and parents share family stories, their perspective, and why CE is important to their child.

See if you can recognise Mujhee in the second video.

I am telling you both these videos especially the first one give me hope for the oppurtunity that Mujhee gets from CE. First of all, I thank you Allah for making CE exist in WA so that Mujhee can attend it's fantastic program. I thank Allah for giving Mujhee a special program that can help her to develop her motor skills.

I thank Allah for sending us great people to care and cherish my girl, and to work with their love. Thank you very much to all staff at Carson Street for their compassion. I only hope I can thank you enough. It's people like you who make a difference in this world! Keep up the good work!

It makes me shed tears, looking at Mujhee and her other special friends in these videos. All of them have worked really hard just to do simple things in life, like sitting, standing, rolling and communicating, that we didn't appreciate until we lose one. Subhana Allah, may Allah open our eyes to His bounties and be grateful for what He bestows on us.

Insha Allah, I hope you enjoy it. And do leave comment.

ENT appointment and shedule for tonsils surgery.

2010-09-17T17:37:00.003+08:00

It was Eid last Friday, the muslims celebration after a month of Ramadan fasting. In the morning Mujhee, her sisters her father and me got into our new Eid outfits and ready for Eid prayer. It is the tradition of our beloved prophet to pray Eid in an open space, so we have our Eid prayer at the Kings Park as always. The prayer follows by the Eid khutbah or Eid sermon.

We reached Kings Park at 8 am, there were a lot of people there already, as the prayer will start at anytime. I dropped Mujhee's father and sisters at a drop off zone, before I parked the car near the Synergy Park. I took Mujhee out while Khai got Hana out off the car. It was a long walk to the prayer area at Saw Ave. On our way there the prayer had already begun.

Along the way there is a path that I can push Mujhee on her wheelchair, but when we reached near the prayer area, it was hard to push through the grass. I stopped a few times to catch my breath. I was hoping there is an accrod parking near by, so I didn't have to walk that far. Sadly there was none.

After the Eid khutbah or Eid Sermon, we met with friends and greet each other with Eid Mubarak. Mujhee gave a big smile to everyone who greet her. She was so happy that morning.

It was not so fun as Mujhee had to go to PMH for ENT appointment after the prayer. Poor thing Mujee's sister and her father have to wait in the car for more than an hour.

It was the same time last year when Mujhee had this appointment but we haven't decided about removing the tonsils. Few days after the appointment we decided to proceed. I contacted the Cerebral Palsy Liason Officer on our behalf to scheduled the surgery. We were disappointed to hear that we had to wait for the next appointment, which will be in six months.

Six month after that we still didn't get any appointment. Then I asked Mujhee's OT to do a follow up. When she got back, she told us the Mujhee will get her appointment not until September which will be another six months because the doctor was on leave.

The doctor checked Mujhee ears, throat and nose. While he checked he mentioned about her tonsils. I told him that we have decided to do the surgery. He said that he didn't get our message and told us that we should write to him. Anyway, I believed everything happens for a reason, so I hope the delay is for good only. Alhamdulillah he scheduled the surgery for next month. When I wrote this post, we have received the date. Insha Allah it will be on early October.

After the appointment we visited my parents to greet them Eid Mubarak. My parents' dinning table was full of delicious food. There were ketupat, rendang, sambal goreng and sayur lodeh. We ate a lot of food there before we went to my sister's.

Mujhee slept well that night. In fact since Ramadan she has been sleeping very well, alhamdulillah. Alhamdulillah! I am so grateful for Ramadan, a month full of mercy and blessing. May Allah accept all our prayer and good deeds, ameen.

Happy Eid 2010

2010-09-11T09:51:00.003+08:00

I know this is kind of late, but it's better late than never. Wishing all lightnur reader a Special Blessed Eid. May the meaning and blessing of the Ramadan remaining with you through out the coming year. Taqabbal ALLAH minna wa minkum - May ALLAH accept all our good deeds.

If you don't sleep I'll brush your teeth.

2010-08-19T12:32:00.007+08:00

It has been a long time since I've updated this blog. Am I having nothing interesting to write anymore or what? Actually there are a lot of incidents that I wanted to mention here. It is just the time. Where is it gone? I don't know. This reminds me of a few verses in the Quran that speaks about time, Subhana Allah.

By the time. Indeed, mankind is in loss. Except for those who have believed and done righteous deeds and advised each other to truth and advised each other to patience.Al Quran 103:1-4.

So insha Allah here is a quick update about Mujhee's sleeping. Last night Mujhee's father carried her from the lounge room to her bedroom. Neefa, her favourite sister, feed her before Kay, her other sister, get her ready for sleep. I was feeding Nana, her little sister, on my bed. Kay changed her nappy and put on her pyjamas. She said good night to Mujhee and continue doing her study for a test tomorrow.

After I put Nana to sleep I went to Mujhee's room to check on her. Her eyes were still wide open and she cried like her tummy was in pain. She was laying flat on her back. I took the wheat bags and heat them in the microwave oven before placing them on her foot and tummy. She was still crying with her mouth wide open. I told her that since her mouth was wide open I will get the tooth brush to brush her teeth. Meanwhile I went to the kitchen to get the other wheat bag. When I get back to her room she was fast asleep, so quietly I put the wheat bag on her other foot.

I just wanted to mention something interesting about my words which was the title for this post. This was not the first time I've said this to Mujhee. Actually it was the third time I said them to her and at each time after I said them to her she went to sleep right away, masha Allah. I have to mention here that since she was little she hates anything that enters her mouth, including food. So it is understandable that she doesn't like brushing her teeth. That was why when I say to her that if she doesn't stop crying and go to sleep I'll brush her teeth, she chooses to go to sleep.

The point that I wanted to make here is that she actually can understand us and she can make choice, alhamdulillah.

Custom made chair for Mujhee's wheelchair.

2010-07-09T20:16:00.003+08:00

On the previous post I mentioned an appointment at CP Tech. I wrote that we met with the Sleep Solution on that day. While we were there for the wheelchair appointment we managed to discuss about Mujhee's sleeping problem and the trial on lullaby for sleep, wedges for positioning and the monitor to make sure she is safe. This is another post that I promise on that post and it is about an appointment at CP Tech for the wheelchair.

After waiting for two months, alhamdulillah, Mujhee got the funding for a custom made seat for her wheelchair. It was 18 May 2010 when we came in for commencing the process of making the chair. There were Mujhee's Occupational Therapist from Therapy Focus, a Physiotherapist from TCCP, CP Tech technicians, Mujhee, her father, her sister and me.

Not long after we were in the room the technician came in from the workshop with the chair. The base is made of plywood with the L shape while the seat is made of foam. When Mujhee sit on it the first thing we noticed was how tall she was but the seat was a bit small because the measurements on that seat was from the previous appointment two months ago. The seat needs to be lenghten and the back of the it needs to be higher. I found out that Mujhee's right leg is longer than her left so the right side of her seat base is about 1 cm longer that the left side. Masha Allah, Mujhee has grown about a couple more centimeters since the previous measurements were done.

While the technician made the adjustments for the base seat at the workshop, we discussed a little bit about straps and bars that she needs to support her while she sits on it. We also decided to have a contour for the seat as it could hold and support her sitting. Before noon we left because there was not enough technicians to proceed with the work that day.

On 28 May 2010 we came back to continue with the detail of the seat including the flip away thoracic supports and hip bars to hold her body in the symmetric and upright position. That day all the straps like pelvic strap, chest straps, groin straps and foot straps were fitted into the seat. The pelvic and groin straps are important to keep Mujhee's tight muscles relaxed. The chest strap is to support her trunk and the one that she has must not interfere with the PEG, a feeding tube, on her abdomanal wall. There is additional shoulder pad on the chest strap to add comfort for her. There are ankle straps on the footplate of the wheelchair to keep Mujhee's foot firmly in position.

While we waited for the technician to do the work, Mujhee enjoyed playing with a switched toy. She moved her hand to press on the switch to make the toy dog laugh. It also vibrates which Mujhee liked very much. I found out that Mujhee's sense of feeling is more better than her hearing and vision. She likes to keep moving since she was a baby. I remember those sleepless nights her father and I used to get because she just wanted to keep moving even though it was night.

That day at the CP Tech was a very long day for Mujhee and us. She used her PODD communication book to make a comment like it will be great if we get in the car to go home. I was glad that we got to take Mujhee home on the new chair that day. Mujhee looked comfortable in the chair and she sit straight or symmetrical and she keeps her head in the middle line. It was amazing to think that how important this chair is for mujhee as it not only gives the comfort but also the support that she needs when sitting down. With the new chair I found out that she is able to move her head better for communication. No wonder her communication was not progressing so much because she was not in a good position that can support the movement of her head to her sides for no and nodding her head for yes.

The next day on the 29/05/2010 we came in again for head rest and tray. An adjustment was made on the right side of the thoracic support because I felt that it was a bit too high and it could leave marks under Mujhee's arm especially when she crosses her arms. The head rest for Mujhee is a very tricky one. The one that she has looks perfect this time. The only problem we had on this head rest is when Mujhee turns her head, the hearing aid's mould losens from her ears, making a loud whistling sound which could annoy and damaged her ears. That day we came home with the same head rest.

As for the tray, we still use the same one but it just needs to be brought in towards Mujhee's body with a new bracket. What I really like about her tray now is that there is a new grip bar on the tray so Mujhee can grasp her hands on it. The tray also helps her to hold her body up.

During the weekend Mujhee's sister found out that her right under arm developed bruises because of the thoracic bar. I made a call to her OT at Therapy Focus and she advised us to lower it while she get back to me after talking to the physio at CP Tech. When she got back to me, she made another appointment on the 17 May 2010, to make an adjustment and to try on different head rest to avoid the hearing aids from falling out when it hits the head rest.

As I write this post the chair is on trial for one week before it's foam will get cover on 21 July 2010. I will drop the wheelchair on that day and pick it up the next day. Guess what colour Mujhee choose for the cover? She choose blue.

Mujhee sleeping management.

2010-06-20T10:58:00.000+08:00

Mujhee's conductor/teacher asked me about Mujhee's sleeping at CE summer holiday programme that she attended on January 2010. She asked at the right time because for six week with the cast on she was very uncomfortable during sleep time and at night in general. At that time Mujhee just had her cast off after she had her soft tissues surgery for her migrating hips. She suggested Mujhee to see Sleep Solutions for management of her sleep and I agreed. Previously Mujhee had seen Sue from CP Tech Sleep Solutions to manage her sleeping problem. Here is a review of her sleeping management.

ALhamdulillah after a long wait we got an appointment on April 2010 to see the sleep management team from CP Tech Sleep Solutions. The day she came Mujhee had a very bad night. For almost a week she fell asleep at midnight. She was sleepy during the day and she even missed her school. Usually before her sleeping time she can be very upset and will cry. Her legs are stiff and her fingers are clenched so tight. I was getting very stressed with the lack of sleep and seeing Mujhee crying and upset.

She suggested that Mujhee went back to melatonin, a hormone that can regulate sleeping pattern. Meanwhile she suggested symmetrisleep system to help her position during sleeping with some wedges. She also mentions about lullaby or other nature sound that can put to sleep.

Alhamdulillah, I took Mujhee's rain forest lullaby from school where she brought for show and tell about her three special things. Anyway her other two special things are a book about the Zoo and the hearing aids. That night she slept better with the sound of rain forest and the warm wheat bag on her foot and tummy. She was fine as long as the sound of the rain forest is on. She gets upset if the sound stops and she is still not asleep. So I have to run to her room to switch it on. This could happen a few times before she will finally fall asleep and leaving me exhausted.

On Friday the 18/6/10 I went to CP Tech for Mujhee's wheelchair custom made seat appointment(this will be in another post, insha Allah) and I meet Sue, from Sleep Solutions. Mujhee has an appointment to see her on the next Monday at our house but since we came in she met us there. She brought a couple of wedges to position them between Mujhee when she is lying on her side and a pillow to put in between her legs. When she tried the wedge she looked comfortable and symmetrical. You can't believe it, she fell asleep right away. I guess the measurement for her wheelchair has made her tired or maybe the wedges and pillow made her comfortable.

She also give us a Cocoon Video Baby Monitor so I can hear and see Mujhee from my bedroom. Guess what? I don't have to leave my bed to see if she is alright, alhamdulillah. During the night I wake up to Mujhee's crying to reposition her. I also wake up if she is so silent. I just worry that she falls on her face and suffocated. Mujhee also got a teddy bear which plays a lullaby and the best thing about it, it is voice and movement activated. The sound plays for 5 minutes. It stop after that time. When it stop the voice of Mujhee getting upset or the movement she makes switches it on again. I think this gadget it cool to Mujhee's OT, who was with us and she agreed. For trial Mujhee got the lullaby only without the bear for hygienic reason.

Mujhee's OT and me discussed about the goals for Mujhee sleeping. Insha Allah I would like for Mujhee to sleep at 9 o'clock every night, without me waking up to reposition her and worry about her safety. Insha Allah I hope these trial gadgets will help me and Mujhee to get better sleep through out the night and reduces my stress.

Last night as always Mujhee goes to bed at 8:00 pm. Alhamdulillah she fell asleep at 9:00 pm but she woke up at 10:00 pm. So I went to her bed and changed her position and warm the wheat bag again in the microwave. She went back to sleep at 10:30 pm. She woke me up for Fajr at 6:30 am. I changed her position and put the warm wheat bags on her tummy and legs. She went back to sleep with the sound of waves from the teddy bear lullaby. Alhamdulillah the first night I don't have to leave my bed and she slept well.

Tonight I got Mujhee to bed around 8:00 pm. I read the three Qul surah and wiped her whole body. I also read to her surah al Fatiha seven times and blow onto her. When I leave her room she was still upset and crying. I switch on her lullaby with the sound of waves. I came in her room few time to reposition her and rewarmed the wheat bags for her tummy and foot. She slept at 9:30 pm but woke up at 10:00 pm. I reposition her and while I write this post she fell asleep again at 10:30 pm. Insha Allah, I hope she will sleep until morning and wake me up at Fajr.

Meeting with Mujhee's new therapist team.

2010-06-18T16:45:00.000+08:00

I signed an application for Equipment for Living Grant on early month of May 2010 at Therapy Focus. Thanks to Mujhee's OT for filling in the application form for me. As I mentioned on the previous post we are applying for a Symmetrikit Seating System for Children as an alternative positional seating for Mujhee's complex needs. At the moment she has a wheelchair for seating. I feel that she can get really tight sitting on it after a long period of time. Please make dua that Mujhee will get this grant so she can have the recliner seat for her size.

While I was at the office I asked about Mujhee's other new therapists’ member which I haven't met yet. I received a letter stating that her therapist team has changed a few months ago but I haven't met with them personally except her lovely OT. The first time I met her was at CP Tech appointment on March 2010 for upgrading Mujhee's wheelchair seat. She is wonderful to work with and I am glad Mujhee has her.

It was nice to meet Mujhee's new physiotherapist and speech pathologist. I was glad Mujhee's OT introduced me to them, so at least, when I see them around at school I can at least say hello to them. From that meeting, Mujhee's physiotherapist made an appointment to see her and me, to discuss goals for Mujhee.

On the day we met, Mujhee's physiotherapist told me that she has been working with children with disability for almost 20 years. She has background working with Conductive Education in Hong Kong and loves working with children. She gave me her personal contact number and asked me to call her anytime.

We discussed goals that I wanted for Mujhee that included a home program, progress of her standing frame, second skin and new AFOs. She told me that I can help Mujhee standing between five to ten minutes without the standing frame. If she stands for more than these times with standing frame she is not using her legs muscles to stand up. Masha Allah, it makes sense to me.

She told me how grateful we are in here with a variety of fancy equipments. She said that in Hong Kong they make their own equipment. Alhamdulillah I am grateful for having great support from the community. I know Mujhee's life has become a lot more easy to manage with special needs equipment. She needs a wheelchair to help her move around, bathing and toileting seat for hygiene needs. She also needs a standing frame to help her stand, AFOs helps stretch her lower legs muscles that are usually over-flexed or contracted. There are many which I am not going to mention now.

I am thankful because without these equipments I am sure Mujhee's life and my life would be difficult. I just want to justify myself that I am not in anyway materialistic of these equipment but it is because these equipments help Mujhee's special need a lot. I just want what is best for her and can help her living her life better. I want her to have opportunity like any other children. I want a lot for her.

Masha Allah, I just realised that when I write any post in this blog, it is all about Mujhee's appointments, her special equipments and about her therapy’s. I don't know about you, but I never get bored writing about them. Here comes to the purpose of me writing a blog. Well, first of all I want to document what I have gone through or what my life is with a special needs daughter. Second, writing is a therapy for me; it kind of reduces my stress. Once I put it into writing, I feel much more relieved. Third, I write a blog to inform close family activities and the progress Mujhee makes. I can go on and on but I better stop now. I have to pick up my girls from school now.

Okay, I hope you enjoy reading my post as much as I enjoy writing it. Hope that you can some how benefit from it. And may Allah make my life and your life easier for the rest of it. Ameen.

A visit to Independent Living Centre.

2010-05-11T09:44:00.001+08:00

Mujhee sitting on the Symmetrikit Seating System.

Mujhee's OT has scheduled a visit to Independent Living Centre to look for Mujhee's toileting and bathing equipment during Term 1 school holiday 2010. I used the ILC website a few times, especially when I search for disability equipments. I heard about it a lot but this was my first visit to ILC.

Mujhee, her father and I meet Mujhee's OT at ILC. There we meet with the ILC's OT. She showed us two shower chairs
Joncare Dukki Commode

The DUKKI can be used as a toilet chair and as a shower chair and it is suitable for children from ages 2 to 14.
Aspects such as seating comfort, measurements, hygiene, easy operation and design played an important part in the development of the DUKKI, this effort was not without success, as it won several design awards.

And Nottingham Rehab Seahorse Sanichair

For 3-9 yrs. The Seahorse Sanichair can be used as a mobile over toilet chair, a freestanding commode and a shower chair. It is available in two sizes, both of which have two sizes of foam liners for the seat to provide four size options of Mini, Midi, Maxi and Super Maxi.
Includes contoured seat, water and chip resistant metal frame, large castors, removable splash guard pommel, large capacity potty, adjustable foot plate, body harness and foot straps.
Unit Weight: 15kg (33lb).

Mujhee tried sit on both chair but the Seahorse sit was supportive than the Dukki but the head rest of Dukki was better than the Seahorse. At last we decided to try the Seahorse.

We were told that we can hire the equipment from ILC for trial and use. We hire the Seahorse for $45 per month. Actually my cousin who heard about this has been so kind to sponsor this hiring for 3 month. Alhamdulillah, now at least I don't have to worry about it and giving Mujhee a shower is enjoyable and easy.

While we were there the ILC's OT asked me if Mujhee needs any other equipment as there is a Grants and Equipment Funding under New Equipment for Living Grant (EFL) 2010 - 2011. At that time I have nothing in my mind but then I asked Mujhee's OT what sort of equipments are under that funding. She mention about Symmetrikit Seating System For Children and we have an opportunity to look and Mujhee tried sitting on it.

Masha Allah once Mujhee sat on it we knew it that this is the right chair for her as she is at risk of developing postural deformity. The chair can support her head and trunk without restraint that can make her feel tight and uncomfortable.

Mujhee's OT also recommended Jupiter home seating system for her, but we fall in love with the first seat we saw at ILC, so we decided to apply the funding for the symmetrikit seating through ILC. I appreciate Mujhee's OT for helping us with the application. Insha Allah we pray that she will get the grant.

We were informed about R82 Flamingo Commode which was not on display at the ILC.

The R82 Flamingo Bath/Shower Chair is a potty and bath/shower seat in one. The size 1 Flamingo Bath/Shower Chair will support a child with special needs weighing up to 77 lbs. (35 kg). The approximate target user age for the size 1 model is 2 to 5 years. It has a reclining back, assisting when used for showering.

The Flamingo Bath/Shower Chair has a variety of optional accessories that can be used to support a child with mild to severe physical needs. The bath/shower chair seat is made of 100% waterproof upholstery and can be taken out of the frame and used as a toilet seat or bath seat. Best of all, the Flamingo bath/shower chair is lightweight and easy to fold for storage or transport.

Mujhee's OT gave us the contact where we can look. Last week we went there and tried Mujhee on it. The chair is lighter than the Seahorse which makes it easier to move around. It is compact so it wouldn't take a lot of space for storage. Storage for Mujhee's equipments is a big issue as she has a lot of equipments. Anyway I am glad Mujhee father likes it. I thought if he likes it too much, then he would also likes and enjoy giving Mujhee a shower, so I have one less chore. Alhamdulillah, we decided to take the Flamingo shower chair. Again Mujhee's OT will help applying the funding through Community Aids and Equipment Program (CAEP) for this shower chair.

Making decision is never easy with finding suitable equipment for a child with disability. We have to consider many aspect especially if the equipment can help Mujhee's high muscle tone or spasticity, head and trunk control. It takes time and energy. But Alhamdulillah, every time I have decision to make, I pray istikhrah and leave everything to Allah. I ask Allah to guide me. At least it takes out the stress out of me. Alhamdulillah and I feel satisfy with whatever my decision making is.

More assessments for hearing

2010-04-10T16:55:00.003+08:00

It was a rather scary hail storm we had here in Perth in late March 2010. Alhamdulillah, we have nothing major and survived. I can't believe that it is autumn school holidays already. Two weeks before the holiday Mujhee had appointments at WA Institute for Deaf Education (WAIDE) and Australian Hearing.

The one at WAIDE was for educational audiological and learning/developmental assessments to identify Mujhee's particular needs so that the Institute can provide the appropriate support for her.

On that day we met with the Coordinator Visiting Teacher Service, the Intake Coordinator, the Audiologist and the Deaf blind Visiting Teacher Team Leader from WAIDE. I received a very warm welcome from them. After I listened to their introduction, the teachers made assessments on Mujhee. Masha Allah, I was proud with Mujhee because she tried her best to respond and engaged with them. I was pleased with the way they assess Mujhee. She showed that she communicate well on one on one.

On the short meeting I learnt to not only to verbally talk to Mujhee but patting her as I tell the message to her. For example if it is feeding time, I pat her tummy to tell her it is feeding time, and show her the food while telling her verbally. The same goes with time to change her nappy, by tapping her bottom side to tell her it is changing time and talk to her and show the nappy as well. Insha Allah, it is make sense to Mujhee who is deaf blind.

Insha Allah from next term Mujhee will get the services and supports she needs. I hope it will improve her hearing by doing the right way so that we can communicate with her efficiently.

Mujhee also had her hearing and hearing aids review at Australian Hearing on her last school day for term 1. Last time she had a hearing scheduled review was October 2009. Her hearing aids are set well and the moulds are still a right fit. She didn't responded as well as the last test according to the audiologist because I think the test is suitable for children with normal sight and hearing.

Hearing assessment or test for children like Mujhee can be very challenging. I think the test at Australian Hearing is not accurate for her because as a deaf-blind and having a severe physical disability, she is so varied in her sensory functioning, learning and communication skills.

I was frustrated with the evaluations that were performed using tests and procedures designed for children with normal sight and hearing. These materials are not appropriate for Mujhee. The assessment results are not reliable because they do not give an accurate picture of what Mujhee can or cannot hear.

I wish they use someone who has experience working with children like Mujhee and use her own communication methods (e.g., PODD Communication Book, gestures, words, body language, facial expression) during the evaluation instead of expecting her to look at the elephant puppet and the light when sounds are made.

Before we leave I was glad she gave me Parents Evaluation of Aural/oral performance of Children, PEACH. It is a questionnaire designed to record how the child is hearing and communicating with hearing aids at the moment. I will observe Mujhee for a week before Mujhee next appointment on July. I would write about this later, insha Allah.

I end this post with a beautiful verse in the Qur'an that mention about hearing and sight, {And He gave you hearing, sights, and hearts that you might give thanks(to Allah} (An-Nahl 78)

Review Mujhee's wheelchair.

2010-04-02T16:39:00.002+08:00

For a special needs child or children with motor disorder like Mujhee a wheelhair is a freedom for mobility. I wish it is temporary for Mujhee because she is learning how to walk through a system of education called conductive education. I am so grateful that she is given an opportunity to learn how to walk, but meanwhile a wheelchair is a must for her.

It was more than two years ago when I decided to get Mujhee a wheelchair as she has not shown any signs of walking. It was a hard decision to make because I really wish that she is able to walk like my other children. With the help from Mujhee's OT at TCCP that time, I decided to get her Zippie wheelchair.

Mujhee is moving around using a wheelchair. She started using it about a year ago since February 2009. It took about 5 apointments until she finally got it. The most important part about the wheelchair is the seat is custom made. Mujhee is learning how to sit without support but she still needs support for sitting. For that reason she needs a custom made special seat to go with her wheelchair.

Now the seat is too small for her and she looks squashed in it. It is time to modify the seat as she is growing, especially the head support and leg support because they dion't povide the support that Mujhee needs.

Alhamdulillah, it was quite a long wait from Dec 2009 until we got an appointment for March 2010 at TCCP Tech to review Mujhee's wheelchair. I heard that there is some changes at TCCP that makes it's services run a bit slow, meaning a long waiting list.

On the appointment day (18/03/2010) Mujhee's Occupational Therapist, Lisa from Therapy Focus and her previous Teacher/Conductor, Shona from Carson Street School accompanied us to the appointment. I was so happy they came with us and giving us so much suggestions on how to upgrade the new seat.

At the moment Mujhee's OT will apply for the fund according to what her new seat will be and insha Allah when it is granted TCCP Tech can proceed with the making of the seat.

There will be a couple of months waiting period until the funding is available. I know it seems long and I wish she could get her new seat right away. It is not only the wheelchair, there are few more equipments that needs to be upgraded like a standing frame to help her stand and a shower chair for washing her everyday. I find the costs are hard to cover because the cost of having a child with disability are way too high.

For me waiting is great as it teaches me to be patient during times of hardship without complaints. I remember a verse in the Quran that states that "Indeed Allah is with those who are patient." Al Baqarah 2:256. So what more would I want?

Inna Lillahi Wa Inna Ilaihee Raaji'oon “To Allah We belong, and to Him is our return”

Conductive Education Holiday Programme

2010-02-04T03:44:00.006+11:00

Mujhee's conductor/teacher mention to me about CE holiday programme when I came to the Award Day on December last year. Not that I was not aware of it but I was too busy with Mujhee in the hospital and post surgery so I forgot to register my interest. Anyway I was glad when she asked me and Mujhee has been accepted for the program.

The program was during Summer school holiday, where the temperature is at its peak. It was a relief that only a couple of days during that week the weather was uncomfortable. It was organized by CECWA or Conductive Education Centre of Western Australia. Big thanks to CECWA for creating this opportunity for Mujhee and other kids like her. Mujhee attended this great program lead by Shona, a new Conductor at Carson Street School. She was excellence and it seem like Mujhee pay every of her attention at her. I notice that she has the magic touch and her voice makes Mujhee keep searching, following and looking for it, if you understand what I mean.

The program was for 5 days, even thought I would like Mujhee to attend more days. I wish it was available for more days but I must say that these five days I learnt a lot. The program made me miss the School for parents where I could get guidance of Conductive Education. There are so much things that I need to learn so I can help Mujhee to learn to do just a simple things like sitting and standing which we all take for granted. I don't know what I have until I lost it.

On her first day Mujhee was so tight and she didn't let me do any stretching for her on the plinth. At that time Mujhee just had her cast off and she complaint every time I moved and stretched her legs. The Conductor suggested me to cuddle her a few times to settle her down. There is nothing that we can do without making her upset, so that day we took it easy on her just with some gentle stretching with the help from EA.

I like the hand stretching very much because the purpose of that is to be able to shake hand when meeting with people which we usually do when greet each other.

The conductor recommended hydro therapy for Mujhee to help reduce her stiffness. Her father was eager to take Mujhee in the pool for the rest of that week. Like me, he also believes that water heals pain and relaxes stiff muscles. On the second day Mujhee was better especially after hydro therapy with a physiotherapist from Therapy Focus and her school's Education Assistant. Mujhee was also more settled especially without her AFOs because she developed pressure marks on both of her heels from the cast which she had for six weeks after her soft tissue surgery. Maybe she was uncomfortable the day before when I put them on.

I learnt that Mujhee needs leg wraps that support her knees when she is standing. The physio from PMH said that Mujhee is allowed to stand only at this stage. I saw that she was in so much pain when standing up but she tried hard for standing which touch my heart.

I am happy with Mujhee sitting at the plinth at activity time. The grasp bar helps her balance. I found out that she doesn't need arm wraps because she grasps that bar straight. It makes hand tasks a bit challenging for Mujhee as her arms are also stiff and she makes her hand into fists. It's hard to keep her fingers opened. I feel Mujhee tried hard to balance her sitting and holding on grasp bar and use her hand to do activity.

Alhamdulillah, Mujhee's cast is off

2010-01-24T01:43:00.000+11:00

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

Early this year, Mujhee, her sister Kayy and me went to PMH to take off her cast. I took Kayy with me because it was school holiday. Usually I could not take any of my kids to Mujhee's appointment because the time is always during school hours. Most of the time Mujhee has to miss her school.

Mujhee had her soft tissues release for her thigh abductors and hamstrings at the end of November. She was in an A shape cast and a stick between her knees for a long six weeks. At least that is what I felt, endless. I was counting each days for the cast to be put off. I think Mujhee would think like me.

She was uncomfortable in it especially at night and when she was laying down on her bed. Most of the time she sit well on her modified wheelchair. It was uneasy to change her nappy particularly when she done a poo. Sometime she felt distressed, painful and irritated.

The appointment that day was at the Orthopedic Department in PMH. It took about an hour to cut the cast out. Alhamdulillah Muja tolerated to the vibration made by the saw but sometime she turned stiff as her reaction to that vibration. After the stick between her knees was cut, then the left leg cast was opened. As soon as it opened Mujhee tried bending her knee. Then the physio opened the other cast on her right leg. There are few pressures marks on both her heels and around her ankle. Her physio said that she will be in pain after this and suggested pain stop for Mujhee.

After the doctor prescribed for the medicine, I stopped by at the pharmacy to order pain stop. Then I went straight to Occupation Therapy Department for Mujhee's modified wheelchair. It also took another hour for the hospital technician to modified her wheelchair back to normal.

On the way home I realised that I forgot to pick up Mujhee prescribed medicine which I order earlier, so I went back to PMH.

That afternoon I went to my mum's house for dinner. We had colourful rice with fried chicken and salad; mee rebus and chocolate cakes. Yummy. My mum always cook us delicious food.

Alhamdulillah since the cast is off for good, her sleep is improving. I am sure she feels lighter and comfortable without it. She needs a lot of stretching as her legs are still tight. Insha Allah I will post her Conductive Education Summer Program which she attended after her cast went off. Once a while she is in pain but the pain stop relief her pain, although not always.

I would like to thank her father especially for his loving and caring to Mujhee which is beyond his power. To Mujhee's siblings, I appreciated all your helps and understanding during this challenge time.

Alhamdulillah we have been through it and it only made us stronger. All praise belong to Allah.

Changing blog name to Mujhee

2010-01-20T23:44:00.005+11:00

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 my very first post to begin year 2010 by announcing the lightnur reader that I am changing Muja's blog name to Mujhee starting from this post. The reason is a lot of people who known her call her by that name. I noticed that she respond well with that name than when I call her by her real name or her blog name, Muja.

Muja's communication progress

2009-12-25T14:04:00.006+11:00

Masha Allah, Muja is really good at her communication now. She uses her PODD book more often to tell me anything like when she thought the nurses at PMH were helpful when she stayed in the hospital. She is very honest about everything for example she does not like her baby because she is noisy. She has a good sense of humour when she told me that she likes her uncle... NOT and gave him a big cheeky smile.

++++++++++

I want to tell you something
I want to show you something
It’s in
activities
something to eat or drink
drink
water

With the PODD communication book she told me that she wanted to tell and show an activity that goes in, which was drinking water through her mouth using a water bottle.

Masha Allah, as you know Muja does not drink or eat orally. When I put water bottle in her mouth and gently squeezed some water in her mouth. She swallows it. She even asked for some more water using her voice and when she finished she turn her head away. I told her that it was cleaver for her to show me that. Alhamdulillah, may be she is ready to drink using her mouth.

++++++++++

I am telling you something
It's about now
activities
watch TV
watch
TV show
turn TV off

I told Muja to watch TV, but she wanted the TV off. Instead of turning the TV off, her sister who was watching, turn it down. As her sister didn't want to turn it off I turned Muja's wheelchair facing the wall.

I like it
cleaver

She told me that I was cleaver by turning her face away from the TV.

something wrong
angry, grumpy, mad
and she looked at her sister Neefa

Muja told me that she was angry, grumpy and mad at her sister for not turning the TV off.

Helps is just around the corner

2009-12-22T17:21:00.003+11:00

A month before Muje had her hips surgery, about end of October , I called a few charity organizations to ask funding for air conditioner. After some calls, Southcare Inc was willing to assist me lodge the application. There are a few things needed for submition, like a letter from medical practitioner stating Muja's condition, quotation from two places and income statements. The paper works took a bit of time especially letter from the doctor. Once the application ready, it is a matter of waiting.

Alhamdulillah last week I received a good news that the application is accepted. It took almost two and half month. The day I received the cheque I can't believe my eyes it was for real. Alhamdulillah, although the air conditioner is a little bit late, at least for the rest of this summer Muja will be comfortable with an air conditioner in her own room. I can't wait until January when the installation will take place. For now is another waiting game and I hope the temperature won't go any higher than 35.

Muja needs the air conditioner because she could not regulate her body temperature as she is physically not moving. When she is not comfortable she cries which will make her body sweaty and warm. Sometime it is tricky to understand her because she could not tell. Alhamdulillah, now she uses PODD communication book, a book with pictures and symbols to speak. Masha Allah, she is good at turning her head for "no" and for "yes" she tries moving her lips or blinking her eyes or smile.

I would like to thank the financial consultant at Southcare for her help. I really appreciate her good work of helping people in needs. Masha Allah there are a lot of government funding to approve non-government organisations to help them meet the needs of individuals who have a disability in perth so just ask around or start here or here.

Award Ceremony Day

2009-12-13T18:06:00.008+11:00

Ok. It's been a long time since I updated my blog. I have been so busy lately. There are so many things I wanted to write about but I don't know which one to start with.

Oh! It's summer holiday in Perth NOW! Alhamdulillah, it is good in a way that I don't have to race every morning like the V8 Supercar racers even though I never won anything. I just beat my own time once in a while.

On the other side, I have to entertain the kids at home who keep coming to me with bored faces. Especially our one and only Taz. She just asked me if she can sleep over at her aunt's and I said no. Then she went ballistic which I don't want to hear. Same old story. It's not fair this and that. Bla bla bla. I ended up playing marbles with her on my new king size bed. It was fun though. She was not happy to be a loser and tried to cheat. A good opportunity for me to teach her about being honest and cheating.

On Friday Muja and I went to her school for her Award Ceremony. Masha Allah her speech and language specialist, Yvette, awarded her the Communication Award for developing a clear method of indicating "Yes and No" through her PODD communication book. She also received two books which are called "This is my Book by Mick Inkpen" and "The Rainbow Fish by Marcus Pfister" and a pink castle photo frame.

Muja did not go to school since she had her hips operation. So everyone at her school was excited to see her. Muja was happy too and she was proud of the award, when everyone came to congratulate her. They gave her a "get well soon" card which they made. I think Muja appreciated it and it was so thoughtful. Shona her teacher/conductor said her cast comes with a build in grasp bar which is good for her to practice grasping.

On Muja's last day of school before the surgery her teacher suggested a special party for her. As you all know Muja cannot speak so she is using a PODD communication book to communicate. Muja said it was a good idea and that she had a idea. She wanted to invite her family but not her baby sister. They told her that the baby can't be left at home alone, so she was ok for the baby to come but she said keep the baby in the corner. She is VERY jealous and has a good sense of humour, right?

One last thing, my very special daughter, Kay, received three trophies for top student in Maths, SOSE and Islamic Studies. My other special girl Nifah got a certificate of appreciate for excellent Qur'an memorization. Sadly, Taz didn't get anything. Though she usualy gets something during her schooling life. The most recent one she got was for excellent work habits and excellent progress in iqraa & behavior.

Masha Allah at the end of the day my children really made me proud of them, even if they were not recognized with anything I will still be proud of them. They are so special to me and I love them all very much, that includes you Mamat.

Eid ul Adha Mubarak 1430 H

2009-11-27T04:10:00.000+11:00

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

Assalamualaikum Brothers and Sisters in Islam.

May I take this opportunity to wish each and every one of you a joyous Eid and may Allah accept all our deeds, ameen.

Wasalam
lightnur and family

Muja is in the hospital for her hips surgery

2009-11-25T20:39:00.007+11:00

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

Here we were again in PMH for Muja's third surgery but this time it is to correct her hips dislocation. Alhamdulillah after a long three hours of waiting in the Friendship Room, we were told that Muja was in the recovery room. Her father went in because I was feeding Fana, Muja's new baby.

Half an hour later Muja's father came and took us to an orthopedic ward 6A. I heard Muja's scream while I was walking down the ward hallway. As I entered the room her scream was louder and it broke my heart. Am I to be blame for sending her to the surgery? If only I can swap her pain, I am more than willing to do. Her spasm was stronger than ever. Her tears, I can't bear to watch. At that time I said la hawla wala quwata illah billah which translated as there is no strength nor power except Allah.

I asked Allah, the Almighty, Lord of Magnificent Throne, to give Muja a speedy recovery, give the best outcome from this surgery, give us patience with her, give her caring nurses to care her in the hospital, protect her from harmful medications and its side effects, protect her hips from dislocating again, make her affairs ease and to take her spasm away. O Allah give us what is good. Ameen.

As tomorrow is the day of Arafah, please remember Muja and us in your dua. Jazak Allahu khairan.

Prepare for the first 10 days of Dhul Hijjah

2009-11-17T02:35:00.001+11:00

Summer is here and Muja needs an air conditioner to regulate her body heat.

2009-11-14T16:53:00.001+11:00

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

Spring is towards it's end, but the humidity is increasing not like it was years before. It is getting warmer and Muja's body is sticky with her sweat when she wakes up in the morning. Her body and especially her checks becomes pink or reddish in the afternoon when the direct sun heats our living room. The heat makes her body warmer and more sweaty. If she cries her body heat increase. Usually I get a wet cloth and wipe her face and body to reduce the heat and refresh her. Sometime I spray her face with the Aromatic Mist I made using Neroli floral water and Neroli essential oil.

At night, her body gets hot again as the heat that absorb in our house during the day slowly radiates it's way back into the house. Like any other night, once she starts crying she can last at least an hour. It makes her body warm again and not able to fall asleep.

This summer, we have to live with the heat wave, unlike last year when we went away for holiday. This summer holiday will be different with new baby and looking after Muja post-surgery.

Muja needs an air conditioner because she cannot regulate her body temperature. I remember once her check got burnt because she rubbed it against the sofa one summer. If she is able to move, that won't happen.

I heard that there is a Disability Equipment Grant Program (DEG) that funding children with permanant disabilities who can't afford equipments such as vehicle modification (maximum grant $7500), assistive technology for with a vision impairment (maximum grant $5000), assistive technology for people with a communication impairment (maximum grant $5,000) an acconditioners (maximum grant $1,500). Who is eligible for the grant is in the information package here. while its application form is here.

The Government of Western Australia also gives Thermoregulatory Dysfunction Subsidy Scheme to assist the electrictity costs of operating heater or air conditioner equipments at home. Get the information sheet here and application form here. The subsidy is $424 per annum (rate is current as from 1 July 2009).

There is also a Life Support Equipment Electricity Subsidy if you need an uninterrupted power supply to run critical medical equipment. The subsidy rate depend on the equipments that range from as little as $30 for Nebuliser to $774 for Oxygen Concentrators. The rate are annually. The information phamplet and who can apply is here. To apply for the subsidy the application form is here while to apply for Life Support Identification is here.

I hope these information can help you in any ways. For now, I am off to shop for an air conditioner. Which one should I buy? The split system? Inverters? What size? Let me ask the expert at Harvey Norman.

Japanese Research: Second Life

2009-11-12T19:48:00.004+11:00

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

Source: http://www.disabilityfirststop.asn.au/publications/

People with severe paralysis could find new opportunities from shopping to doing business or making new friends in the virtual world of Second Life by just thinking about it, if experiments being conducted by a Japanese university bear fruit.

In a recent demonstration, Junichi Ushiba, an associate professor at Keio University and head of the project, showed how electrodes attached to the scalp can pick up the electrical changes associated with brain activity.

The data can be interpreted by a computer, allowing a user to manipulate his or her online persona, or avatar, around the streets of Second Life without using a keyboard or mouse.

"When people are paralysed, of course their lives become restricted," Dr Ushiba said, as a graduate student took a virtual stroll through the historic streets of Kyoto City, Japan's ancient capital, without moving a muscle.

"But with this technology we can interpret their intention to move, allowing them to go shopping in Second Life or even set up a business."

San Francisco-based Linden Lab says about 500,000 people regularly visit Second Life, where commercial transactions can be carried out in Linden dollars, convertible to US dollars.

Dr Ushiba, who spends part of his time working at a medical rehabilitation centre, hopes to have people with paralysis try the system next year.

The project is still in its early days, and the students experimenting with the system must practice for a while and find the best spots on their scalps for the electrodes before they can stroll smoothly around.

Staying focused

"The important thing is to concentrate. You can't really think about anything else," 23-year-old Yasunari Hashimoto said after demonstrating the system.

Loss of focus can result in an inadvertent dive off a virtual cliff or into the sea.

Brain control of computers is already the subject of experiments in other countries, including the US BrainGate system, which enables users with an implant to open email and move objects such as wheelchairs.

"We have a lot of members who can no longer move at all," said Yoshiko Umeda, a volunteer nurse with an organisation representing some of the 7,500 sufferers from motor neurone disease, a progressive disorder that causes paralysis.

"I think they would very much welcome a system operated by the brain."

Dr Ushiba hopes the random element of Second Life will change the lives of patients immobilised by illness or injury, in a way that clicking buttons to send emails cannot.

"In ordinary life you go shopping and you might just happen to see a jacket you like and buy it," he said. "Or the cover of a book might catch your eye. Sometimes you chat with people you just happen to run into.

"This kind of chance encounter could enrich people's lives."

Because I love you.

2009-11-03T20:32:00.005+11:00

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

"You are not fair, mama", said Tazz, my eight years old girl.

Why don't you let me stayed up late?
Because I love you.

Why don't you let me have an iPhone?
Because I love you.

Why don't you let me sleep over?
Because I love you.

Why don't you let me watch that movie?
Because I love you.

Why don't you let me say such and such word?
Because I love you.

Why do I have to eat my breakfast?
Because I love you.

This list can go on and on.

Am I over protective? NO, I don't think so. I am just setting boundaries for her to give her security. I want her to know what is acceptable and what is not in our house. I also want to make her realize how far she can go, when we have clear lines.

It is very important that we explain to the child why it is set. As the child grows older we can introduce more boundaries to ensure she is safe.

Instead of saying no to the children setting boundaries is a way to make it sound positive.
Alhamdulillah, Tazz is satisfied and secure when I say "because I love you" when she ask why I set those limits.

Ciater Hot Spring in Bandung

2009-10-27T20:22:00.000+11:00

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.

Spa treatment at Muja's school.

2009-10-25T13:09:00.001+11:00

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.

Muja's scheduled hearing review.

2009-10-18T14:40:00.000+11:00

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.

Muja's orthopaedic surgery pre operative meeting

2009-10-12T17:04:00.004+08:00

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.

2009-10-12T11:46:00.008+08:00

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.

To remove or not to remove Muja's tonsils?

2009-10-11T23:00:00.001+08:00

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.

Muja's little sister is home.

2009-09-28T00:58:00.000+08:00

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 my little one has been discharged last Wednesday, since she was in the Neonatal Intensive Care Unit for 10 days at KEMH and FH. She was born seven days before Eid-ul-Fitr through emergency ceasarian section at 36 gestation weeks because I had a placenta abruction. I lost a lot of blood but alhamdulillah I don't have to have a blood transfusion like previously when I had Muja. I am feeling dizzy sometime and the c-section is still in pain.

A day before she was allowed home, she had a brain scan to make sure it has no abnormality. The scan reminded me of Muja's MRI scan. It was devastating when the doctor said that she has severe brain injuries. I remember I cried and I still cry when I recall that. No mother would wish to hear such news.

A few days ago was the hardest thing for me, waiting for the result.

Yesterday my husband and me brought our little one to the hospital for a review and to discuss her brain scan she had last Wednesday. Alhamdulillah, the good news is her brain is normal. My husband and me are so relieved. Alhamdulillah. The doctor said that she is doing well and the scan was great. Her weight went up to 2550 g from 2430 g and her head circumference increase to 33 from 32cm. Masha Allah, she is growing and sucking really well.

Taking her home is like taking her to five mothers. Masha Allah, my girls just could not let her down. She was been held by her sisters one after another.

Is she jealous of her little sister?

2009-09-27T18:59:00.005+08:00

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 Friday Muja's father took her to the PMH for ENT appointment. Masha Allah, this is the second time he brought her for an appointment alone without me. He wanted me to come but my c-section was still in pain and felt so weak to go around.

Since she is due for her soft tissues surgery next month, there is not much that can be done to her tonsil. Her tonsil will be reviewed in the next six months.

On the other hand we haven't decide whether to remove her tonsil or not. Poor thing. She is due for so many surgeries. Alhamdulillah, only her right tonsil is big but not swollen. Her sleeping is better but occasionally she wakes up in the middle of the night and can't go back to sleep until morning. Her breathing is still a concern though it's not as bad as before where she can hardly sleep at night.

Last time Muja's father took her to Naturopath for her tonsil. She prescribed her a herbal mix. I don't think that herbal is doing anything to her tonsil. I believe she needs a review. She is still taking Ant Tart 30 homeopathic remedy for wheezy breathing.

Alhamdulillah, her constipation got well with prune juice and cereal but before and after she open her bowel her tummy hurt. Alhamdulillah she is not taking the Movicol-half anymore since the prune juice works for her.

Guess who puts Muja to bed now? It is her father. Masha Allah, since Ramadan her father puts her sleep. He is doing a great job. She is having homeopathic remedies Arnica 30 for pain and Chamomilla 30 to calm her before sleep.

I suppose Muja kind of misses me. She can definitely sense that there is someone else taking her place from me. On Eid day when she visited her little sister for the first time at the hospital, she turn her face away from her little sister when I showed her to Muja. Is she jealous? I bet she is.

Conductive Education Center of Western Australia Newsletter

2009-09-23T07:52:00.005+08:00

I am just posting a link to Conductive Education Center of Western Australia recent Newsletter that is available to download here. There are few great news in it. Alhamdulillah, a new sponsorship from Realmark Real Estate and there will be a new Teacher/ Conductor for next term (big HOORAY). I am glad because it open the door for more children that need the CE program here in Perth.

I am off to hospital to see my little one. Please remember us in your prayer.

I put my faith in Allah.

2009-09-22T21:56:00.006+08:00

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's little sister is 1 week and 3 days old today. After droping Muja to school today, I went to Fremantle Hospital to visit her. She was due for her feed. As I enter the nusery she was crying. I changed her dirty nappy and breast feed her right away. Masha Allah, she sucked really well, unliked Muja when she was a baby and still at the hospital intensive care unit. Muja was tube fed the whole time.

After feeding her the nurse and I took her to the Radiology to scan her brain. It was so hard for me, watching it. My breast felt hard to breath. Verily all power and strength belong to Allah. While watching her brain scan, I felt so weak and not be able to do any thing accept keep making supplications to Allah that everything will get better. All through out the scanning I made duas that there is no any abnormality in her brain, ameen.

Now is the hardest part which is waiting for the result. Please Allah make me patience and protect me from any negative thought, ameen. I put my trust in You.

I left the hospital because I had to pick up Muja from school. May Allah protect her.

Alhamdulillah, Muja was happy when I picked her up. I felt unwell. I had a headache in my left eye, sore throat and ear ache. My c-section feel pain as well. I lay down the whole afternoon in bed. Although I am tired now I can't go to sleep.

Despite Anti-Vitamin D Bias, CDC Stumbles on Deficiency Link to H1N1 Deaths

2009-09-22T21:47:00.001+08:00

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

Posted by: Dr. Mercola
September 22 2009 | 14,891 views

vitamin D, flu, swine flu, flu vaccine, swine flu vaccineSo far, Swine flu, H1N1, has killed thirty-six children in U.S. and analysis of CDC data indicates Vitamin D deficient children at higher risk of death.

The CDC did not realize they discovered this. However, anyone familiar with the Vitamin D literature will recognize it.

Almost two-thirds of the dead children had epilepsy, cerebral palsy, or other neurodevelopmental conditions like mental retardation.

All of these neurological conditions are associated with childhood Vitamin D deficiency. Exacerbating the problem further, many of these kids take anticonvulsant drugs, which lower Vitamin D levels.

58 million American children are Vitamin D deficient; 7.6 million are severely deficient.

When researchers looked at more than 6,000 American kids (age one to 21) who were carefully selected to be representative of the average American child. 9 percent of the kids had 25(OH)D levels less than 15 ng/mL and 70 percent had levels less than 30 ng/mL.

Sources:

GaryMoller.com September 6, 2009

Vitamin D Newsletter May 2009

CDC September 4, 2009

Eid-ul-Fitr Mubarak 1430

2009-09-20T08:08:00.006+08:00

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 we are so blessed with our newborn baby girl during the blessed month of Ramadan, although she is still in the special nursery care in Fremantle Hospital. I ask Allah to give everything good for her and us, ameen. Masha Allah, we can't wait to bring her home but may Allah give us patience.

I would like to greet all Muslims and lightnur readers especially Eid-ul-Fitr Mubarak and May Allah accept the fasting and all the worships from us and you during the month of Ramadan, ameen. Please forgive me if I have made any mistake or wrong doing to you in this blog or in my actions.

May Allah reward you with goodness.

It's a girl, masha Allah.

2009-09-18T05:04:00.005+08:00

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 was about to get ready to go to my parents house for iftar, when I had bleeding while having shower. Quickly I called my husband and he hurried me to go to the hospital. By the time I got my things packed the bleeding continued. I was sure I lost quite a lot of blood. I felt the the baby is getting harder, but I calmly told my husband who was driving that my tummy is cramp. Then he started drive like a formula one racer. He looked panic and rushed me to enter the hospital when he saw blood all over the seat after I got out of the car.

The admission was quick in the emergency ward, before I was took to the monitoring assessment room. While we were waiting for the wheelchair my husband showed his impatience again. I know at this moment time is precious. The same thing happen at the reception of assessment room. But once I was in the bed in that room everything seem in a flash. My baby heart beat getting weaker. There is no contraction but my tummy started pain. Doctors rushed in and decided to go to the theater. I have no time to think because they pushed me as soon the doctor decided. I held my husband's hand and told him I can barely feel anything. I run out off my breath by the time I was pushed to the theater.

"How is your pain?", I heard a midwife asked me when I realised that I was in the recovery room.

"What happen?", I asked her. She said that my baby placenta was bleeding and came out of my uterus wall. Then my husband came in and told me the baby is alright but taken to the Special Care Neonatal. Subhana Allah, I felt like it was my second dream. This is what happen to me five years ago with Muja and it happen again but slightly different. Alhamdulillah.

Alhamdulillah, Muja's little sister was born 4 week earlier last Sunday, 23 of Ramadhan at 2:53 pm. She was 2430g and 47 cm long, masha Allah. Alhamdulillah is is recovering well in the Special Care Nursery. Insha Allah, I was hoping to take her home before Eid.

Please say masha Allah when you see her pictures.

Hip Surveillance for Children with Cerebral Palsy

2009-09-10T21:23:00.001+08:00

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

Today I went to PMH with Muja for her Hip Surveillance appointment. It was raining when I left the house. Alhamdulillah I got a handy disabled parking behind Hay Street Building. One of the mother told me last time when I came for Muja Botox injections. Alhamdulillah when we arrived there the rain stop, so I got Muja out quickly before it started to rain again.

Alhamdulillah, we waited for a while until a physiotherapist called us in. She welcomed us warmly as usual and asked me about fasting and weather it is too early to greet me Eid Mubarak. Masha Allah it is only 10 day until Ramadan will end. It feels so fast.

Before she did some measurements on Muja's hips, she sent Muja for an x-ray. After the x-ray we went back to see the physiotherapist. Alhamdulillah the good news is her hips has stayed the same since six months ago. Alhamdulillah it did not get worse.

Last March when Muja had her hip surveillance an x-ray showed that her right hip migrated 39 %. She was referred to Orthopedic Surgeon who then recommended for her soft tissue surgery. Now Muja is in waiting list for the surgery.

Muja has been attending the Hip surveillance since she was two years old, after she had her first Botox injection. There will be a following up at the Rehabilitation Clinic after the hip surveillance to see the Rehabilitation Paediatrician for pre-Botox injection. If there is hip dislocation or if it is at risk the Hip surveillance will refer to the Orthopedic Surgeon.

Here is a documentation about Hip Surveillance for Children with Cerebral Palsy.

Since her right hip did not get worse, I just wonder if it is better not to proceed the soft tissues surgery, since she is not in a lot of pain lately, at least after her last Botox. What do you think?

Mean while I know that I need to do Istikharah.

Stiff and tight muscles.

2009-09-09T19:49:00.000+08:00

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

Last week Muja's physiotherapist, Tanya, came to our house to teach me how to stretch Muja's stiff and tight muscles.

Muja has Quadriplegia Spastic Cerebral Palsy which means she can't control her body movement and muscle co-ordination. It affected all her four limbs. Her muscles are tight and stiff, and have increased resistance to being stretched.

Usually Tanya goes to Muja's school to do the treatment but this time she came to teach me how to do the stretching. She showed me first then I practised after her. First she did on her legs then her arms. She also made Muja lay on her tummy to stretch her upper back legs and help to control her head. Slow stretching often brings relief to muscle spasm.

A few day before I had a meeting with Muja's teacher to set her goals for the next six months. One of the goal is how to manage Muja's stiff and tight muscles. Natalie told me about a traditional sage bath practise in Hungry Conductive Education and would like to try it for Muja. She said that sage should not be used by persons suffering from epilepsy but we can try anyway since Muja hardly get her epilepsy recently. I think it is a great idea and can't wait to see its outcome.

Currently Muja is attending Hips Surveillance Clinic and Orthopaedic Clinic at Princes Margarate Hospital to manage her muscle spasms. She receives Botox injections every six months to relax her upper legs muscles.

I take Muja to alternative medicine to treat her muscle pain with accupunture and homeopathic remedy. Her Naturalpath prescribe Magnesium to ease her muscles.

I use aromatherapy arnica massage oil which I made using essential oils of lavender, marjoram, rosemary and eucalyptus. You can also use the same essential oil in epsom and sea salts bath. A bath soak with salts can have amazing health benefits like easing stiff and sore muscles.

I would try add sage essential oil when I mix her massage oil next time, insha Allah. Sage is anti spasmodic: This property of Sage Essential Oil can ease stiff muscles and eases trembling and palsy.

How can I fight urinary tract infections naturally?

2009-09-08T21:27:00.006+08:00

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 I have urine infection and it is so painful and irritating. Last week, I had a urine test and it was contaminated. So yesterday when I went to Natureco for Muja's acupuncture appointment, I asked them how can I fight urinary tract infections naturally without antibiotic.

They actually recommended me to take cranberry extract capsules but then the one they have contain something which could induce pregnancy. I was given Mediherb Echinacea instead and was also recommended to drink cranberry juice. Echinacea is said to boost our immune system so we can better fight off infectious bacteria and viruses. I have taken the capsule for two days now but it is still painful when I passed my urine. I guess I will get cranberry juice tomorrow, insha Allah. Cranberry helps clean up the urinary tract.

Urinary tract infection (UTI) occurs when the urinary tract is irritated and inflamed due to bacterial infection. Urine contains salts, fluids and waste products. But it normally doesn't contain bacteria, this harmful bacteria that causes the infection. When the bacteria sticks onto the bladder, it multiplies and develops into a urinary tract infection.

It's easy to tell when you got urinary tract infection. A number of symptoms include a burning sensation while urinating, a frequent desire to urinate even when little to nothing comes out, and bladder spasms. Other symptoms include foul-smelling urine and a mild fever.

I remember when Muja was about 1 year old. She had UTI as well, but it was treated with homeopathic remedy cantharis. Masha Allah the remedy worked for her UTI but not me. Alhamdulillah it never come back to her. Now I can imagine how she felt that time. She was irritated and restless. I can imagine the pain she has gone through. It was very painful, especially when you pass the urine.

I pray that it will go away soon as it is so uncomfortable, ameen.

Alright, now about Muja accupuncture. She was doing really well yesterday when Lawrance inserted the needles in her head, neck, hands and legs, alhamdulillah. She showed him how well she can hold her head. Most of the time she stared at the picture of bamboo hanging in the treatment room. As usual Lawrance gave her Chinese herbal.

Fasting For The Pregnant or Breastfeeding Woman

2009-08-26T11:49:00.001+08:00

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

Question:

Regarding the pregnant woman and the breastfeeding woman; if they fear for themselves or upon the child during the month of Ramadhaan – such that they eat, what then is due upon them? Should they eat and feed others (i.e. to the poor) and make up the fasts or should they eat and make up the fasts and not feed others or should they eat and feed others not make up for them? What is correct from these three?

Answer:

If the pregnant woman fears for herself or for her baby for the reason of fasting during Ramadhaan; then she should eat and upon her is to make up for them only. Her state in that is similar to the state of the one who is sick and is unable to find strength to fast – or that he fears some harm upon himself.

Allaah The Most High says:

((And whosoever is sick or is upon a journey; then the period is made up from other days…)) [Soorah Al-Baqarah: 185]

Likewise is the case for the breastfeeding woman if she fears for herself when she breastfeeds her child during Ramadhaan. Or that she fears upon her child if she were to fast and not breastfeed him – then she is to eat and upon her is to make up for them only.

Permanent Committee for Research and Verdicts
Shaykh `Abdul-`Azeez Bin Baz
Shaykh `Abdullah bin Ghudayaan
Shaykh `Abdur-Razzaaq al-`Afeefee
Fataawaa Al-Lajnah ad-daa'imah vol. 10 page 220 question two of fatwa number 1453
Translated by Aboo Haatim Muhammad Farooq

Takan from here.

Beautiful Dhikr

2009-08-25T21:44:00.001+08:00

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

Taken from here http://www.sunniforum.com/forum/showthread.php?t=2865

Make Dhikr, Not Bicker

"A collection of various dhikrs from the sunnah."

[Something very easy to do, but many of us forget it...or fail to grasp the reward of it...let us practice the following, simple dhikr, read this e-mail, print it..and also tell others of it... Such simple, easy to remember and easy to recite dhikr, why should we not take advantage of it?.... It may be hard for us to learn the many sciences of islam, and other topics, due to our circumstances, but the following are simple, easy couplets that can be implemented from now, from today...and carried on through our lifes. We can also tell others of it too... lets not lose this opporunity.... Read, Have Islam in your life, Remember Allah, and let us be sucessful.... (from a brother)...]

سُبْحَانَ اللّهِ وَ بِحَمْدِهِ SubhanAllahi wa biHamdihi (Glory be to Allah and I Praise Him)

Whoever says (the above) at morning and evening time, one hundred times, none shall come on the Day of Resurrection with anything better except someone who has said the same or more
[Muslim; 4:42071]

سُبْحَانَ اللّهِ وَ بِحَمْدِهِ SubhanAllah wa biHamdihi (Glory be to Allah and I Praise Him)

a hundred times during the day, his sins are wiped away, even if they are like the foam of the sea
[Sahih al-Bukhari; 7:168, Muslim; 4:2071]

سُبْحَانَ اللّهِ وَ بِحَمْدِهِ SubhanAllahi wa biHamdihi
(Glory be to Allah and I Praise Him)

Abu Dharr reported that the Prophet (salAllahu alayhi wasalam) said, "Shall I tell you the words that Allah loves the most?" I said: "Yes, tell me, O Messenger of Allah." He said: "The words dearest to Allah are: subhanAllah wa bihamdihi
[Muslim and at-Tirmidhi]

سُبْحَانَ اللّهِ الْعَظِيمِ وَ بِحَمْدِهِ SubhanAllahil adheem wa biHamdihi (Glory be to Allah, The Supreme, and I Praise Him)

a palm tree is planted for him in Paradise
[at-Tirmidhi; 5:511, al-Hakim]

سُبْحَانَ اللّهِ وَ بِحَمْدِهِ ، سُبْحَانَ اللّهِ الْعَظِيمِ SubhanAllahi wa biHamdihi, SubhanAllahil adheem (Glory be to Allah, and Praise, Glory be to Allah, the Supreme)

Muhammad (salAllahu alayhi wasalam) said: "Two words are light on the tongue, weigh heavily in the balance, they are loved by the Most Merciful One"
[Sahih al-Bukhari; 7:67, Muslim; 4:2071]

سُبْحَانَ اللّهِ SubhanAllah (Glory be to Allah)

one Hundred times, a thousand good deeds are recorded for him or a thousand bad deeds are wiped away
[Muslim; 4:2073]

لا حَوْلَ وَ لا قُوَّةَ اِلَّا بِاللّهِ La Hawla wa la Quwatta illa Billah (There is no Might or Power except with Allah)

mentioned in hadith as "a treasure from the treasures of Paradise"
[Sahih al-Bukhari; al-Fath al-Bari; 11:213, Muslim; 4:2076]

سُبْحَانَ اللّهِ ، والْحَمْدُللّهِ ، وَ لا اِلهَ اِلَّا اللّهُ ، وَ اللّهُ اَكْبَرُ SubhanAllah, walHamdulilah, wa La illaha ilAllahu, waAllahu Akbar (Glory be to Allah, All Praise is for Allah, There is No God but Allah, Allah is the Greatest)

- The above are mentioned as the four most beloved words to Allah. It doesnt matter which of them is begun with
[Muslim; 3:1685]

Abu Saiid reported that the Prophet (salAllahu alayhi wasalam) said, "Perform the enduring goods deeds (al-baqiyat al-salihat) more frequently." They asked, "What are these enduring good deeds?" The Prophet replied: Takbir [Allahu Akbar], Tahlil [la ilaha illallah], Tasbih [Subhan'Allah], alhamdu lillah, and la hawla wa la quwwata illa billah.
[an-Nasa'i and Hakim, who said its chain is sahih]

سُبْحَانَ اللّهِ ، والْحَمْدُللّهِ ، وَ لا اِلهَ اِلَّا اللّهُ ، وَ اللّهُ اَكْبَرُ SubhanAllah, walHamdulilah, wa La illaha ilAllahu, waAllahu Akbar (Glory be to Allah, All Praise is for Allah, There is No God but Allah, Allah is the Greatest)

- Muhammad (salAllahu alayhi wasalam) said: 'For me to say (the above) is dearer to me and all that the sun rises upon (ie the whole world)
[Muslim; 4:2072]

سُبْحَانَ اللّهِ ، والْحَمْدُللّهِ ، وَ لا اِلهَ اِلَّا اللّهُ ، وَ اللّهُ اَكْبَرُ ، وَ لا حَوْلَ وَ لا قُوَّةَ اِلَّا بِاللّهِ SubhanAllah, walHamdulilah, wa La illaha ilAllahu, waAllahu Akbar, wa la Hawla wa la quwwata illa billah (Glory be to Allah, All Praise is for Allah, There is No God but Allah, Allah is the Greatest, There is no might or any power Except with Allah)

- The good deeds which endure are (the above)

سُبْحَانَ اللّهِ ، والْحَمْدُللّهِ ، وَ لا اِلهَ اِلَّا اللّهُ ، وَ اللّهُ اَكْبَرُ ، وَ لا حَوْلَ وَ لا قُوَّةَ اِلَّا بِاللّهِ SubhanAllah, walHamdulilah, wa La illaha ilAllahu, waAllahu Akbar, wa la Hawla wa la quwwata illa billah (Glory be to Allah, All Praise is for Allah, There is No God but Allah, Allah is the Greatest, There is no might or any power Except with Allah)

- AbdAllah ibn Mas'ud reported that the Prophet said: "During the Night Journey I met Ibrahim (alayhis salam) who said to me: O Muhammad, convey my greetings to your Community, and tell them that the Paradise is of pure land, its water is sweet, and its expanse is vast, spacious and even. And its seedlings are SubhanAllah, walhamdulilah, wa la ilaha ilAllah, waAllahu Akbar (the above)
[at-Tirmidhi and Tabarani whose version adds: "There is no power nor strength save through Allah"]

الْحَمْدُللّهِ Alhamdulilah (All Praise is for Allah)

- Verily the best supplication is (above).
[Muslim; 4:2073]

لا اِلهَ اِلَّا اللّهُ La illaha ilAllah(u) (There is No God But Allah)

- The best form of remembrance is (above).
[Muslim; 4:2073]

لا اِلهَ اِلَّا اللّهُ La illaha ilAllah(u) (There is No God But Allah)

- Abu Huraira (radiAllahu anhu) reported that the Prophet (salAllahu alayhi wasalam) said:

"When a servant of Allah utters the words la ilaha illallah (there is no God except Allah) sincerely, the doors of heaven open up for these words until they reach the Throne of Allah, so long as its utterer keeps away from the major sins.
[at-Tirmidhi, who says it is hasan gharib. al-Mundhiri included in al-Targhib 2:414]

لا اِلهَ اِلَّا اللّهُ La illaha ilAllah(u) (There is No God But Allah)

- Abu Huraira (radiAllahu anhu) reported that the Prophet (salAllahu alayhi wasalam) said, "Renew your faith." "How can we renew our faith?" they asked. The Prophet replied:
"Say always: la ilaha illallah."
[Ahmad with a fair chain of authorities]

لا اِلهَ اِلَّا اللّهُ وَحْدَهُ لا شَرِيكَ لَهُ ، لَهُ الْمُلْكُ وَ لَهُ الْحَمْدُ وَ هُوَ عَلَى كُلِّ شَيْءٍ قَدِيرٌ La illaha ilAllahu, waHdahu la shareeka lahu, lahul Mulku, wa lahul Hamd, wa Huwa ala kulli shaiy'in Qadeer (There is No God But Allah Alone, who has no partner. His is the dominion and His is the raise, and He is ABle to do all things)

- whoever says the above ten times, will have the reward for freeing four slaves from the Children of Isma'il (alayhis salam)
[Sahih al-Bukhari; 7:67, Muslim; 4:2071]

لا اِلهَ اِلَّا اللّهُ وَحْدَهُ لا شَرِيكَ لَهُ ، لَهُ الْمُلْكُ وَ لَهُ الْحَمْدُ وَ هُوَ عَلَى كُلِّ شَيْءٍ قَدِيرٌ La illaha ilAllahu, waHdahu la shareeka lahu, lahul Mulku, wa lahul Hamd, wa Huwa ala kulli shaiy'in Qadeer (There is No God But Allah Alone, who has no partner. His is the dominion and His is the raise, and He is ABle to do all things)

- whoever says the above one Hundred times, has the reward of freeing ten slaves, a hundred good deeds are recorded for him and a hundred bad deeds are wiped away and he has gained refuge from the devil that day until evening and none shall come with anything better except someone who has done more.
[Sahih al-Bukhari; 4:95, Muslim; 4:2071]

لَآ اِلهَ اِلاَّ اللّهُ وَاحِدًا اَحَدًا صَمَدًا لَّمْ يَتَّخِذْ صَاحِبَةً وَّ لاَ وَلَدًا وَّ لَمْ يَكُنْ لَّوْ كُفُوًا اَحَدٌ La illaha ilAllahu, Wahidda(n), Ahada(n), Samada(n), lam yatakhidh sahiba(n). Wa la walada, wa la yak(n)ul-lahu kufuwan Ahad
(There is no God except Allah, the One and Only, the Eternal, Who has not taken a partner nor a son. And there is none like unto Him)

Whoever says the words above ten times, then 40,000 (forty thousand) good deeds will be recorded for him
[Ahmad]

أَسْتَغْفِرُ اللَّهَ الْعَظِيمَ الَّذِي لاَ إِلَهَ إِلاَّ هُوَ الْحَيُّ الْْقَيُّومُ وَ أَتُوبُ إِلَيْهِ Astaghfirullah al-'Adheemal-ladhi la ilaha illa Huwal-Hayyul-Qayyum wa atubu ilai (I seek the forgiveness of Allah the Mighty, Whom there is none worthy except Him, the Living, The Eternal, and I repent unto Him)

Whoever says the above words, Allah will forgive him even if he deserted the army's ranks

[Abu Dawud 2/85, at-Tirmithi 5/569, Al-Hakim who declared it authentic and ath-Thahabi agreed with him 1/511]

اللَّهُمَّ أَنْتَ رَبِّى لاَ إِلهَ إِلاَ أَنْتَ ، خَلَقْتَنِى وَ أنَا عَبْدُكَ وَ أنَا عَلَى عَهْدِكَ ما اسْتَطَعْتُ ، أعُوذُ بِكَ مِنْ شَرِ مَا صَنَعْت ، أَبُوءُ لَكَ بِنِعْمَتِكَ عَلَىَّ وَ أبُوءُ بِذَنْبى فَاغْفِرْ لِى فإِنَّهُ لاَ يَغْفِرُ الذُّنُوبَ إِلَّا أَنْتَ Allahumma anta Rabbi la ilaha illa anta, Anta Khalaqtani wa ana abduka, wa ana 'ala ahdika wa wa'dika mastata'tu, A'udhu bika min Sharri ma sana'tu, abu'u Laka bini'matika 'alaiya, wa Abu Laka bidhanbi faghfirli innahu la yaghfiru adhdhunuba illa anta (O Allah! You are my Lord! None has the right to be worshipped but You. You created me and I am Your slave, and I am faithful to my covenant and my promise as much as I can. I seek refuge with You from all the evil I have done. I acknowledge before You all the blessings You have bestowed upon me, and I confess to You all my sins. So I entreat You to forgive my sins, for nobody can forgive sins except You.)

The above du'a is known as the Sayyid al-Istighfar and is the most superior way of asking for forgiveness from Allah.

Whoever says it during the day with firm faith in it, and dies on the same day before the evening, he will be from the people of Paradise; and if somebody recites it at night with firm faith in it, and dies before the morning, he will be from the people of Paradise.
[Sahih al-Bukhari 8, 75 #318]

If someone implements ten verses of the Qur'an, He/She will not be considerate amongst the negligent on the Day of Judgment
[Abu Dawud, Ibn Hibban - sahih]

Heart wheel Journal

2009-08-24T10:39:00.003+08:00

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

Insha Allah I want to start and finish Ramadan strong.

Alhamdulillah I am doing Heart Wheel Journal online during this Ramadan to help plan and prepare for Ramadan so that I can focus on my ibadah and come closer to Allah. If you want to maximise your Ramadan you can register at Heart Wheel Journal - Online Software, insha Allah.

You can also buy the journal here or download it at Islam Channel TV and print it yourself to plan, organise and measure your progress in Ramadhan.

Have a successful Ramadan!

My ibadah focusses during Ramadan

2009-08-21T04:58:00.000+08:00

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

Allah azza wa jall says,I created not the Jinns and mankind except to worship me(Quran: 51/56)... so Insha Allah these are going to be my Ibadah (worship) focusses during Ramadhan:

1. fasting (saym)

O you who believe, I made fasting fardh on you as I made it fardh on those before you that perhaps you may have taqwa (god consciousness)

Sa'ad Ibn Sahl relates that the Holy Prophet, sallalahu alayhi wa sallam, said:
"There is a gate of Paradise called Rayyan through which only those will enter on the Day of Judgment who are regular in observing the fast and no one else. A call will go forth: Where are those who observed the fast regularly? And they will step forth and no one beside them will enter through that gate. After they shall have entered, the gate will be closed and no one else will enter thereby" (Bukhari and Muslim).

2. qiyaam ul layl (taraweeh)

3. quran (recitation)

Will they then not contemplate the Qur’an? Or are there locks upon (their) hearts?” (Surat Muhammad (47:24)

4. sadaqah

"He who feeds a fasting person will gain the same reward as he will, without decreasing from the fasting person's rewards." [Ahmad]

5. dhikr

Verily, in the remembrance of Allah, do hearts find rest [13:28]
and remember your Lord when you forget... (18:24)

The Prophet (pbuh) said, “Shall I not inform you of the best of your actions, the most pure in the sight of your Master, the one which raises your ranks highest, that which is better for you then giving gold and silver in charity, and better for you then meeting your enemies, so that you strike their necks and they strike yours?” The companions urged, “Of course, O Messenger of Allah! (inform us)” He replied, “It’s the remembrance of Allah.” (Sahih: Abu Dawud)

6. du'a

Our Lord, give us good in this world, and good in the hereafter, and save us from the torment of fire. (AL BAQARAH: 201)

Source: The Fasting and the Furious

Ramadan Kareem.

2009-08-20T08:24:00.000+08:00

Updates

2009-08-11T18:31:00.002+08:00

On my last post, I wrote that Muja had runny nose, but Alhamdulillah the next day it was dry with salty water drops that I made.

Muja's father took her to consult with a Naturopath, Kathy, for her tonsil on Saturday at Natureco. Her right tonsil is still big although it is not swollen. It blocks her breathing at night when she lays flat and I have to make sure she is breathing alright through out the night and sit her upright to 45 degree angle. Kathy gave her a herbal mixture.

She can be very unsettled during bed time. She cries until she gets really tired before she falls asleep. She wants to sleep on my arm because she can breath better. When I pull my arm out from under her head after she falls asleep, she wakes up. Then I have to settle her down again until she sleeps. It is really anoiying!

Muja went to her monthly accupunture yesterday but she cried when Lawrance insert the needles into her because he disturbed her sleep and she was really tired. I took her there after school. When she settled down, she smiled at Lawrance and he said that she was cheeky.

We are looking at Muja's new standing frame as her current one is getting smaller. Her physiotherapy from Therapy Focus recommended this one, the Leckey Freestander Standing Frames. Insha Allah she will apply for funding and she will get it in six month time, so it will be early next year.

After Muja's last Botox her muscles are more relaxed and less spasm as well. Occationally her legs are jerky especially when she is standing up on her standing frame and her foot touching something

This term Muja's class theme is Australia. Tomorrow they are going to Carversham Wilflife Park for school excursion to see, touch and feed Australian animals.

It has been 12 weeks since Muja had a PEG tube insert into her stomach. On Thursday Muja is going to PMH to change her PEG feeding tube with the mic-key button. Insha Allah I will update later. Please make dua that everything goes well.

Aromatherapy and home remedies for cold and flu

2009-08-05T18:41:00.003+08:00

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

One of Muja's classmate has flu symptoms yesterday. I hope he has the common flu and I make doa that it is not the swine flu. Today she didn't go to school because the Education Assistants for her class have training today.

When she woke up this morning her body is cold and she had a runny nose. I made salty water and put a couple of drops in each of her nostrils. Alhamdulillah it made her nose dry. You can always buy Saline Spray/Drop at chemist if you don't bother to make one.

Here is the recipe to make Salt water drops if you interested to make one yourself which I took from Do Bugs Need Drugs? Parent Guide: Cold / Runny Nose. It cost you nothing.

Salt Water Drops
125 ml warm water
¼ tsp table salt

* Mix well.
* Prepare fresh every day.
* Position child so that head is slightly back.
* Use a medicine dropper to put 1 - 2 drops in each nostril.
* Repeat 4 to 5 times per day.

I made a lemonade to boost Muja with vitamin C to fight her cold and flu mixed with honey to soothe her sore throat.

Here is a recipe to make Hot Honey Lemonade

* 1 tablespoon of honey
* 1 cup boiling hot water
* 1 fresh lemon

In a mug, combine the honey and hot water and stir until the honey is dissolved. Squeeze the lemon and stir in the lemon juice.

You can also treat cold and flu with aromatherapy. Common cold is cause by viral infection so I use the essential oils that are anti-viral.

I diffuse 2 tablespoon of water with 2 drops eucalyptus, 5 drops lavender and 3 drops tea tree of essential oils using oil burner to help alleviate and disinfect dry air passages in her room.

I put a drop of lavender and tea tree in a bowl of warm water. I use the water to wash Muja with a face towel. Alhamdulillah Muja has no fever. A warm bath with 5 drops of essential oils mixed with 1/4 cup of epsom salt can help relieve fever. Peppermint, lavender, sage or rosemary are some essential oils for relieving fevers in a bath.

After her wash I applyed chest rub on her chest, throat and back with the chest rub which I made using beeswax and cocoa butter. It is also containing decongestant essential oils.

I gave her Aconite, a homeopathic remedy for cold and flu. Now she is fast asleep.

Please make dua for Muja. I ask Allah to cure her, Ameen.

Swine flu at Muja's school

2009-07-31T23:18:00.002+08:00

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

Yesterday I went to Muja's school to see the school's psychologist. She is suppose to do an IQ test for Muja but her physical disabilities, visual and hearing impairments the task seem impossible. The purpose for the test is for the school to get fund for school resources.

After the appointment I went to Muja's class. They were doing Science concepts of what can roll and what cannot. Masha Allah they were rolling when I came in. Muja didn't joined them because she just had her feeding and her PEG is the one with a long tube that come out from her tummy. Some of the kids enjoyed the rolling.

I stayed there for a while. After the rolling Sarah, the teacher, gave the students a wooden cylinder each and asked if it can roll or nor. The Education Assistants (EA) helped by rollling it all over the students. Masha Allah Muja nodded her head for yes. Then she gave them a book and asked the same question. Guess what Muja said? She turn her head for no. Masha Allah.

I left her class at lunch time and went to Therapy Focus to see Muja's physiotherapist about her standing frame. I told her that I think the width of Muja's standing frame is narrow for her body. She asked me to bring it so she can have a look. Unfortunately she did not have time to look that afternoon. I took it back home from school so Muja can use it during weekend.

When I picked Muja up from school in the afternoon, Natalie, the teacher/conductor, informed me that one of their students in the school has positive swine flu. Masha Allah, in my heart I made du'a to ask Allah to protect us from it, ameen. So today I decided to keep Muja at home.

Muja's sixth Botox injections at PMH.

2009-07-30T20:49:00.002+08:00

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 couple of weeks ago Muja had her pre-Botox appointment at Paediatric Rehabilitation Department in PMH. Actually this appointment was due in April. The Paediatricians, Dr William, we saw that day apologised about the late appointment but didn't explain why we missed it.

In this appointment Dr William and a physiotherapist, Rosalin, examine how tight the muscles in Muja upper legs were. Then they decided which muscles needed Botox and how much is needed on the next appointment. The doctor suggested Botox injection in her vastus muscle to help her bend her knees.

On that day the doctor tried to get the earliest appointment. He made a call to the Botox clinic to get on that afternoon because there was a cancellation. We could not get it because only two beds is allowed in one Botox session. Muja needs a bed because she is managed by a pain relief to reduce her pain and to make her sleepy.

Alhamdulillah soon after I arrived home from PMH, Sue, a CP Liaison Nurses/Officers called about the appointment which was in a week time, which is the next Thursday.

So last Thursday, instead of going to school, Muja went to PMH for her sixth Botox injection. As usual a nurse checked her temperature, blood presure and pulse. The nurse weighed her and put cream on her hamstrings, abductor and vastus muscles to reduces needle pain during Botox administration. She was also given midazolam for pain relief.

At 2:30 Muja was called in for the injection. She looked sleepy but didn't sleep. That day Dr Langdon did the injections and with the helper, Nadine, who is Muja's first physiotherapist. When the doctor insert the needle in her abductor muscle she cried but not loud. At 3:00 we were done and left PMH half and hour after that. Muja slept in the car all the way home.

Hadith: How to free oneself

2009-07-29T21:40:00.001+08:00

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

On the authority of Abu Malik al-Harith bin 'Asim al-Ash'ari, radiyallahu 'anhu, who said: The Messenger of Allah, sallallahu 'alayhi wasallam, said:

"Purification is half of iman (faith). Saying 'Al-Hamdulillah' (Praise be to Allah) fills the scales. Saying 'Subhanallah wa al-Hamdulillahi' (Exhalted be Allah and Praise be to Allah) fills the space between the heavens and the earth. Salah (prayer) is a light. Sadaqah (charity) is a proof. Sabr (patience) is a shining glory. The Qur'an is an argument either for you or against you. Everybody goes out in the morning and sell themselves, thereby setting themselves free or destroying themselves."

[Muslim]

Read the explaination of this hadith here.

Monthly accupuncture treatment.

2009-07-17T11:11:00.000+08:00

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

Every month Muja goes to Natureco for accupuncture. Last Monday I took her there to treat the pain in her hips and cold. She had a blocked nose and wheezy breathing that make her unable to sleep at night.

She drools like a waterfall. I wonder what treatment is good to get rid of her drool??? Anyone???

Masha Allah, like always she didn't even cry when Lawrance, her acupuncturist, insert the needles. Alhamdulillah, now she is used to the needles. Anyway the needles are very fine so you can't feel any pain. Instead of crying she fell asleep during the session. She had needles on both her hands, legs, neck and head.

The acupuncturist also prepared a Chinese herbal medicine to treat Muja's symptoms and he showed me some exercise to reduce Muja's hips pain.

Alhamdulillah, since Muja had her needles I found her to be more settle and alert. The pain in her hips has reduced tremendously. Usually she complains when we move her around. The other day she didn't cry when I stretch her legs and did cycling exercise. She is happy too when standing on her standing frame.

Alhamdulillah.

Conductive Education Centre of WA website.

2009-07-15T18:18:00.000+08:00

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 the website of the Conductive Education Centre of Western Australia. Muja has been attending this centre since she was 3 1/2 years old for School for Parents every Friday and 2 days Conductive Education Kindy. Now she is in the full time five days Pre primary program. The centre is located in Carson Street School.

You can read about What Conductive Education ishere. There is a photo gallery in the site if you would like to see what Muja and her friends can do at the centre.

The following skills are all developed within a fully integrated programme planned by the Conductor:

* Physical skills
* Play skills
* Social, emotional and communication skills
* Academic abilities
* Self-care skills

Alhamdulillah Muja has developing most of the skills mention above in the CECWA site and Insha Allah I hope that Muja will master all the skills in no time.

Uncooked Play Dough Recipe

2009-07-13T19:13:00.001+08:00

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

My children just love to play with playdough. When they were little (now they are 17, 15 and 12) I always made it for them because the Play-doh is not cheap.

The benefits of playdough

* Helps to strengthen little fingers, hands and wrists.
* It's fun.
* It is one of the best open ended toys I know - playdough can be anything - food, animals, bowls, shapes etc.
* It helps to foster your child's imagination.
* It helps children develop self esteem -there is no right or wrong and the child has the opportunity to gain mastery over their environment.
* It is a great release for tension or angry feelings - squeezing, punching, poking are all acceptable if done to playdough.

Since morning, Tas, Muja's sister who is turning 8 years old, beg me to make play dough. So she helped me measure all the ingredients and chuck them in the mixing bowl. She mixed it and divided each recipe into half before she add colour. She made two batches and decided to colour them red, blue, yellow and green. We use food colouring and also added fragrance to it for sensory. The fragrances we used were strawberry, orange & chocolate trifle, bubble gum and white tea & ginger.

We use the recipe behind the cream of tartar box. So here is the recipe if you would like to make one.

2 cups of plain flour
4 tablespoons of 'cream of tartar'
2 tablespoons of cooking oil
1 cup of salt
1 1/2 cups of boiling water
food colouring

Just put it all in a mixing bowl and mix. Knead until smooth. I let Tas do all the steps and she is so confidence in mixing and kneading it. Keep it in the airtight container so it won't get dry. We keep ours in the zip lock plastic bag.

Happy play doughing! It can be a calming activity and therapeutic.

Feeding Muja through her PEG tube

2009-07-11T23:16:00.000+08:00

Want to play bowling anyone?

2009-07-07T22:54:00.001+08:00

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 am using the PODD Communication Book to ask Muja if she what to play bowling. Muja is 5 and she can't speak yet.

I show her the bowling pins in front of her.

I also show her the ball in her PODD book to emphasised to her again that we are going to play bowling.

This is how she answers with a huge smile. She is happy to play bowling. Then I go through
her PODD book and telling her what she is going to do. I told her that she is going to throw the ball and aim to hit the pins.

She is so excited and can't wait to throw the ball. She is looking at the handle where she is going to push to release the ball and hit the pins.

Once she hits the ball she looks straight at the pins.

She hits four out of six pins and is eager to hit the rest.

Using the PODD book I asked if she wants to do it again. She answer with a smile. So I told her again that she is going to throw the ball and try to aim at the pins.

She is looking at the pins before throwing the ball.

She hits the handle to release the ball and looks at where the ball goes.

She is so focused at where the ball hits.

Hooray she hits all the pins after few throws. She used her POOD book to tell me that it was a good game. Masha Allah, I was happy for her that she enjoys playing bowling.

Cerebral Palsy

2009-06-30T21:00:00.000+08:00

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

Taken from here.

Cerebral Palsy

If your baby has trouble learning to roll over, sit, crawl or walk, see your pediatrician. Delays in development and problems controlling movement or posture may be early signs of cerebral palsy (CP), a group of chronic disorders that stem from abnormalities or damage to the brain.

Cerebral palsy begins before, during, or after birth in the first years of life. Premature babies and others with low birth weight are at greater risk for it. Infection, head injury and other factors can cause CP, but most of the time no one knows why it happens.

Diagnosis

Doctors may use physical examination, medical history and diagnostic imaging tools to determine if your child has cerebral palsy.

Physical Examination

The doctor evaluates your child's muscle tone and reflexes and may want to watch him or her walk, crawl, sit and lie down. Sometimes if the child is less than one year old, the doctor may want to wait a few months and see if specific problems with movement start to happen. The doctor may also check for other conditions linked to CP (i.e., mental impairment, seizures, vision problems, etc.)

Medical History

Give the doctor your child's complete medical history. This helps rule out other disorders that can cause movement problems (i.e., genetic or muscle diseases, metabolism disorders and tumors of the nervous system).

Diagnostic Imaging Tools

The doctor may want to use a specialized test know as magnetic resonance imaging (MRI), to see a picture of your child's brain. There is no specific blood test or imaging study that can make the diagnosis of cerebral palsy.

Symptoms

Cerebral palsy affects the central nervous system and changes the tone of muscles. It takes mild, moderate and severe forms and generally does not get progressively worse. Symptoms vary and may include:

* Tight muscles (increased tone), causing spasms and rigidity.
* Loose muscles (low tone), making limbs weak and floppy.
* Impaired reflexes, coordination and balance.

Some people with CP also have mental impairment (i.e., retardation or learning disabilities); seizures; vision difficulties; shortened limbs; curvature of the spine (scoliosis); dental problems; complete or partial hearing loss; or problems with joints (i.e., contracture). There is no cure for CP, but with early treatment, most children improve their capabilities significantly.

When a child is about 2 years old, the doctor may be able to diagnose the type of CP he or she has. There are four main types:

* Spastic:
In spastic CP, the most common form, there is increased muscle tone/tightness. Legs, arms and back are stiff and contracted, making movement difficult. If both legs are affected (spastic diplegia), tight muscles in the hips and legs cause legs to turn inward and cross at the knees when walking. If only one side of the body is affected (spastic hemiplegia), the arm is often more severely affected than the leg. If all four limbs and the trunk are affected (spastic quadriplegia or total body involved), the muscles of the mouth and tongue may also be affected.
* Athetoid:
(dyskinetic): In athetoid CP there is low muscle tone/looseness, leading to uncontrolled movements of the entire body. It may be difficult to sit straight or walk.
* Ataxic:
A rare form, ataxic CP affects balance and depth perception. There is poor coordination, unsteady walking and difficulty with precise movements such as using a pen or buttoning a shirt.
* Mixed:
In mixed CP, there are symptoms of both spastic and athetoid CP. Some muscles are tight and others are loose. There is both stiffness and involuntary movements.

Treatment

Sometimes people with cerebral palsy need help from their families throughout their lives. If your child has CP, you may want to work with a treatment team of health care professionals to identify and meet the child's individual needs. The goal is to help your child reach his or her potential and maximize independence. Treatment teams often include:

* Orthopaedic surgeons to treat problems with bones, muscles, tendons, nerves or joints.
* Physical therapists to improve movement and strength.
* Occupational therapists to teach skills required for daily living (i.e., eating and dressing).
* Speech and language specialists to treat communication problems.
* Social workers to help locate community assistance and education programs.
* Psychologists to help patients and families cope with stress and/or behavioral therapists to foster social and emotional development.
* Other medical specialists such as eye doctors, neurologists and nutritionists.

Nonsurgical Treatment

* Physical therapy.
Physical therapy (PT) may begin immediately after diagnosis to help your child learn skills like sitting, walking or using a wheelchair. It may also help improve muscle strength, balance and coordination; and prevent muscles from shortening. Stretching muscles may help prevent contracture. Sometimes PT may involve activities like swimming and horseback riding to tone muscles.
* Braces, splints, and casts.
Using braces, splints or casts may improve joint mobility and stability, prevent contracture and improve hand or leg function. Braces can compensate for muscle imbalance.
* Botox.
This drug can be injected into spastic muscles to loosen them up. It is especially helpful in children younger than 5 and when used together with casting.
* Medications.
Medications may control or prevent seizures or muscle spasms, ease muscle stiffness or reduce abnormal movements.
* Mechanical aids.
Special machines like computerized communication devices or simple aids like velcro-fastened shoes or crutches may help a child overcome impairments.

Coping Strategies

Parents of children with cerebral palsy or other disabilities often feel guilt and/or grief about the child's condition. Some tips to help parents cope:

* Learn all you can about CP. You may want to join a family support group or get help from professionals. Stay informed about new treatments and technologies.
* Work with professionals at your child's school to develop an individualized plan that meets his or her needs and abilities.
* Love and encourage your child. Family support and personal determination are important factors in achieving long term goals. Treat your child like a normal kid. Go places and have fun. Be patient, and keep hoping for improvement.
* Get help from family and friends. Caring for a child with CP is hard work. Teach others how to do it so you can take breaks.

Surgical Treatment

If contractures are severe, a child with CP may need surgery to lengthen affected muscles. Surgery may also help if tightly contracted muscles cause stress to joints and lead to deformities or dislocations. Some children with CP need surgery to correctly position their arms or legs, or to correct curvature of the spine. Other surgical options for spasticity management include selective dorsal rhizotomy and intrathecal baclofen pumps. These procedures are usually done by neurosurgeons.

Muja needs soft tissue surgery for her dislocated hips.

2009-06-26T21:41:00.006+08:00

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

On Wednesday I took Muja to PMH to see an orthopedic to review her dislocating hips as a result of her tight and stiff muscles. Previously in the hips surveillance clinic she attended on March showed that her right hip migrated to 38%, while her left hip was stable at 28%. Alhamdulillah ala kulli hal - Praise be to Allah in all circumstances.

The muscles of people with Cerebral Plasy like Muja can be so stiff or tight. Muja has Spastic cerebral palsy. Spasticity means stiffness or tightness of muscles. The muscles are stiff because the message to the muscles is sent incorrectly through the damaged part of the brain.

When people without cerebral palsy perform a movement, some groups of muscles become tighter and some groups of muscles relax. In people with spastic cerebral palsy, both groups of muscles may become tighter. This makes movement difficult or even impossible and also pull her femur away from its hips sockets.

Muja receives Botox injection which is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in her hamstring and abductor muscles. It begins to take effect by blocking transmission between the nerves and the affected muscles. Usually it's effect last for four months.

The injection stops the signal between the nerve and the muscle, relaxing the muscle and reducing stiffness. Botox only affects the muscles that are injected and once the muscles are relaxed, therapists are able to stretch the muscles and stimulate normal growth.

Masha Allah, apparently the tightness of her muscle is so severe even Botox injection could not prevent her hips from dislocation and pain.

I was praying that Muja won't need any surgery to fix her dislocated hips. I was hoping that there is other option than surgery. I was shocked when the doctor mentioned about hips reposition surgery. Not another surgery for Muja. Allahu Akbar! There is no power and no strength except with Allah.

Muja had her hips x-ray again. Alhamdulillah her hips was the same like the one she had on March. Her right hip migration is still at 38%. Alhamdulillah it does not get worse. After looking at the new x-ray the doctors were discussing whether to do the hips surgery or not. Alhamdulillah, there is another way which sound less painful and concern or dread. Instead of doing hips surgery, it will be soft tissues surgery. The aim of this surgery is to reduce subluxation/dislocation and to relieve pain, improve symmetry and aid management.

So what is soft tissues surgery? Alhamdulillah, the procedure does not require cutting into the hip. The surgeon makes an incision and cuts tight tendons to help increase the hip's mobility. The hip is then externally manipulated to bring the head of the femur back into the acetabulum(The cup-shaped hollow in the hipbone into which the head of the femur fits to form a ball-and-socket joint).

A spica cast is applied to stabilize the hip. The spica cast prevent the joint from moving and allows the bones and tendons to heal. The cast is made out of plaster or fiberglass and usually has a cotton liner for comfort.

After the operation the pain and spasm were managed by intravenous midazolam and epidural anaesthesia for two to four days. At six weeks, the spica cast will be removed. Then continued to have daily community physiotherapy for one month.

I am worrying about how I am going to manage her in that spica cast. I have looked at the image online and its not comfortable at all. How am I going to carry her around? Will she be comfortable with that? How about nappy change? What position will she be in when sleeping and sitting?

I guess I have too much concern about this surgery because I don't know what to expect. I don't know what to do except asking Allah to guide me. Poor my child. She just had her PEG surgery last month and now she need soft tissues surgery. Insha Allah more decision to make and more istikharah prayer to perform but hopefully no stress for me. I pray to Allah to guide me in making the best decision for Muja beneficial.

May Allah help us, Ameen. Please make doa for us.

References: Bilateral hip surgery in severe cerebral palsy

Are you intending to perform Hajj this year?

2009-06-18T22:44:00.007+08:00

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

Now is a great time to decide or make intention, if you haven't, whether you want to perform Hajj this year. I would like to encourage young Muslims especially to please consider this if not now but in the near future while you are still young and have change to live in this world before our age come to the end.

Alhamdulillah, Hajj is the best thing that happened in my life and I hope I could share my amazing experience with you. Insha Allah, maybe in the near future, I will write an entry about my hajj experience.

I am giving the links here to the experiences of sisters and brothers who had perform their Hajj previously to motivate and inspire those who are not performing their Hajj yet. Masha Allah they are beautiful life journeys and great to read.

Before I went to Hajj in 1429H/2007 I read a beautiful journey of a brother who live in Scotland, Masha Allah. You could read it through the link I posted here. I learnt a lot from his experience, Alhamdulillah.

Recently I found another motivation post on Hajj by Sister Zabrina, My Hajj Journey 1429H/2008 in her blog ~ Life Storyteller : Motivational and Inspirational Stories for You and Me ~ What I like about this post is that there are hundreds of pictures of Hajj which she took when she performs her Hajj. Looking at those pictures brings back my Hajj memory.

I wish I could write better like this sister so I could write my Hajj Journey. I just love hearing and reading about other Muslims Hajj experience. It gives me a boost and goose bumps. My Hajj Experience are written by Mujrimah in her blog Tea & a Think
Part 1,
Part 2,
Part 3,
Part 4,
Part 5,
Part 6,
Part 7,
Part 8,
Concluding Remarks

Here is more Hajj life journey written by The Imam's Daughter MY HAJJ 2003 JOURNAL

Muja and her wheelchair restraints system

2009-06-15T10:45:00.005+08:00

Muja is ready to go out.

Remember a couple of weeks ago I wrote about finding a restraints system for Muja's wheelchair. Alhamdulillah, we managed to get enough fund to install it into the van with the support of friends and loved ones. I am so grateful to Allah. Muja's father and I decided to install the AMF Bruns Protektor Restraints System into our vehicle.

Alhmdulillah getting Muja in the van is not so hustle and bustle any more. There are some minor things though like pushing and pulling the wheelchair through a ramp, in and out of the van, folding the ramps and not to mention the buckling up of the safety belts.

Pushing Muja into the van through a fold able ramp.

Muja is almost into the van. Just have to push a little bit harder.

Can you believe how many restrains there are? Let's count them together. When Muja on her wheelchair there are six belts to support and control her sitting. There are two pelvic straps, a tight belt and a chest strap with two shoulder straps. There are two safety belts to hold her custom made seat to the base of her fold able wheelchair base. There are four restrains to hold the wheelchair into the van. Last but not lease a lap belt to restrain Muja and the wheelchair into the van. If you are the best in Mathematics you could have count the total of thirteen belts to restrains Muja while she is travelling in her vehicle. WOW. Masha Allah.

Restraints for Muja's wheelchair. Making sure they are secure.

Now can you imagine what a hard time I have to go through each time to take Muja out? Some times it makes me think twice to take her out. Not because I feel ashamed or something else like that, it's because of the hustle and bustle. But then sometime I don't have a choice, I have to do it for her benefit like taking her out for treatments and school. I don't believe in hiding my child at home. I love to take her out so that people can see that having a disability child is not too bad or something that is to be ashamed of. It is part of every one's normal life but mine is just a little bit of challenge, alhamdulillah.

Muja in the van ready and looking outside. She looks happy to go out.

Making calendula lotion for psoriasis.

2009-06-11T10:18:00.004+08:00

I went to see my doctor yesterday and she noticed marks on my skin. She asked me what that was. I told her that I was itchy so I scratched. That leaves quite a few spotted marks. She suspected that it was bugs bite and not a skin disease, psoriasis, and asked me to show her senior doctor for advised. Alhamdulillah when he looked at them, he said it is psoriasis. My doctor prescribed Cortisone for it.

What make my psoriasis come back? Maybe stress? Lately I have been in a lot of pressure of decision making. That make's me stress a bit I guess. Then I remember maybe by using perfumes and commercial soaps caused it to come back. I also use perfume when I make my own shampoo and conditioner recently, instead of using essential oils. Now I remember. I am sure those chemicals in the perfume irritate and cause allergic reaction to my skin.

Alhamdulillah I take homeopathic Silica 6c. I also take Apis 6c for the skin inflammation and it helped stop me from scratching.

I have psoriasis since I was young. Six years ago my psoriasis was gone after I stopped using commercial body care and made my own body care from natural raw ingredients. It has been awhile since I got psoriasis. You know what I think? I think it is time for me to make a special lotion for psoriasis.

Here I am in my kitchen's lab, finding the ingredients for making calendula lotion especially for my psoriasis. One by one I took the ingredients out of my lab's cupboard, the calendula infused oil (relief irritation, healing wound), rosehip oil (rejuvenate skin), avocado oil (emollient), wheatgerm oil (sooth irritated skin), emulsifying wax, vegetable glycerine, preservative, vitamin E (nourish skin), essential oils and rosemary extract (anti-oxidant).

I measured the ingredients and put the oil mixture in a Pyrex measuring jug, and the water mixture in another jug. I heat the oil and water mixture in the microwave. Then I mixed the oil into the water using a stick blender. I blended it a few times until it got thick. Then I added preservative, vitamin E and essential oils. I used Lavender, Tea Tree, Sandalwood, Roman Chamomile and Geranium essential oils.

So this is the lotion I made in my lab today. It is light yellow or gold because it takes the colour of the infused calendula oil. I wish I could described the smell of the lotion but I don't have a word for it except it smells sweet, woody and yet flowery. Its texture is smooth and it absorbs quickly into my skin. My skin feels smooth, soft and soothing. When it cooled down I poured it into a pump bottle and labelled it with Calendula Lotion.

How to remove your earwax naturally?

2009-06-08T16:43:00.006+08:00

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 has moderate hearing loss at birth as a result of her brain injuries. People who suffer from moderate hearing loss have difficulty keeping up with conversations when not using a hearing aid. Alhamdulillah she has been using hearing aids since she was one.

Last Thursday Muja had her hearing review at Australian Hearing. Last review was on February and the next review will be in October. Her audiologist, Michael, checked her ears. Alhamdulillah her ears are excellence without any infection or water but her right ear has some wax deep inside it. Alhamdulillah there were nothing wrong to her middle ears.

I asked Muja's audiologist how to clean the wax. He said that I can buy a drop at the chemist. He also said that I can use sodium bicarbonate. He gave me the recipe. Mixed 1/4 teaspoon of sodium bicarbonate in 10 mls of water. Then drops it into the ear. I am so glad that there is a natural way to clean the ears without any harmful chemicals and dangerous tools.

After that Muja's hearing were test in a sound proof room. There, sounds are made. She did not respond well to the sounds like her previous test she had at PMH, for ENT appointment. Occasionally her eyes blinked. I am sure she can hear but her physical condition makes it difficult for her to turn to any sounds. Masha Allah, I know she can hear me because when I call her name she responds with a smile.

During the review he also made sure that the hearing aids is working soundly. He also cleaned it and made a new mould for Muja's ears because its getting loose. Using loose hearing aids cause them to make a whistling sound. There is also a great chance for them to get lost because they can get off the ears easily.

Homeopathic remedies for special needs

2009-06-07T10:09:00.002+08:00

Muja is not well. After she came back from school on Friday, I noticed her restlessness, runny nose, nausea and her body is cold. I gave her Arcenicum 30c before sleep and she slept better that night. On Saturday afternoon her symptoms still the same so I gave the same remedies. Before she went to sleep I gave her Arcenicum 30c again and she fall asleep right after I gave it, alhamdulillah. Since flu season is just around the corner this is a great link to homoeopathic remedies for influenza http://likecure.com/acatalog/Flu_Remedies.html

Masha Allah, I have been using homeopathic remedies for almost four years and I am quite confident with them. I started using homeopathic remedies for Muja when she was 9 months old. At that time she was on convention medication for epilepsy, reflux and insomnia. My friend recommends me to seek consultation with Dr Ismail who is a qualified Practitioner and also Herbalist in Perth. The first time I saw him he commented that my daughter was like a drug addict. Those drugs affect her internal organ and their side effects scared me. With his help we reduced Muja convention drug and changed them with Dr Ismail's prescribed herbs. Alhamdulillah her condition got better when we stopped all the drugs. Alhamdulillah, Muja got less epilepsy attacked and her reflux gone. But her sleeping was still a problem. She is nocturnal or like an owl, who sleep all day and stay awake all night. Then I started looking for different alternative medicine and got stuck with homeopathic.

If homeopathic is a new thing for you, this is a short introduction to it. At the end of the article there is also a list of common homoeopathic remedies for reference. http://www.herbs2000.com/homeopathy/1_homeopathy.htm

I usually take Muja to Homeopath for consultation if I am not sure what is going on with her or what remedies will suit her at certain time. Muja used to be consulted by Owen from Owen Homeopathic before she referred her to Kate from Arnica Montana. Kath has experience with special needs She is also very nice to us. She offered me to call her any time if I am not sure what to give to Muja if she is unwell. Then I take her to Natureco because it is close to my house. There we seek consultation with Andrea who is a Naturopath and also Homeopath. If you are interested in this treatment I would recommend you to get consultation from Homeopath first.

Just for my record this is a link for the top 100 homoeopathic remedies http://www.homeopathyworks.com/jshop/product.php?xProd=505 Alhamdulillah, I have most of the remedies. In Perth I bought the remedies from Owen Homoeopathic and Natureco Health Centre.

Ever wonder why your life is full of hardships?

2009-06-04T14:36:00.006+08:00

Ever wonder why your life is full of hardship? Or some time you wonder when will the hardship ever end?

I have to go through all sort of hardships like any other mother, alhamdulillah. The trial that I face through my special needs child can be more severe but not necessarily. There are some trials that I feel are more severe like the fact that my child could not walk nor talk. She could not understand me and I cannot understand her or an epilepsy attacked.

These trials remind me of what Allah says in the Quran that

إِنَّمَا أَمْوَالُكُمْ وَأَوْلَادُكُمْ فِتْنَةٌ وَاللَّهُ عِنْدَهُ أَجْرٌ عَظِيمٌ
Your wealth and your children are only a trial, whereas Allah! With Him is a great reward (Paradise). Al Quran 64:15.

كُلُّ نَفْسٍ ذَائِقَةُ الْمَوْتِ وَنَبْلُوكُمْ بِالشَّرِّ وَالْخَيْرِ فِتْنَةً وَإِلَيْنَا تُرْجَعُونَ
Everyone is going to taste death, and We shall make a trial of you with evil and with good, and to Us you will be returned. Al Quran 21:35

From the above verses I learnt that I am not special but just like any other mothers or human, being tested in this world through my wealth and children. And sometime Allah send me a good trial but other times with an evil one.

Then I question why does Allah want to test me? I found an answer in Surah Al Mulk verse 2. It is because He wants to see, through the trials, which one of us is best in deed.

الَّذِي خَلَقَ الْمَوْتَ وَالْحَيَاةَ لِيَبْلُوَكُمْ أَيُّكُمْ أَحْسَنُ عَمَلًا وَهُوَ الْعَزِيزُ الْغَفُورُ
He Who created Death and Life, that He may try which of you is best in deed: and He is the Exalted in Might, Oft-Forgiving;- Al Quran 67:2.

Masha Allah once my child just cried all night and stayed awake all day. I got so tired and almost lost my patient. She wanted me to hold her. When I put her down she screamed, cried and became stiff. But then I realised that was my test to see if I have patience or not.

The following verse clearly note that the test of fear, hunger, loss of wealth, live and fruits are to give a glad news to the one who has patient.

وَلَنَبْلُوَنَّكُمْ بِشَيْءٍ مِنَ الْخَوْفِ وَالْجُوعِ وَنَقْصٍ مِنَ الْأَمْوَالِ وَالْأَنْفُسِ وَالثَّمَرَاتِ وَبَشِّرِ الصَّابِرِينَ
And certainly, We shall test you with something of fear, hunger, loss of wealth, lives and fruits, but give glad tidings to As-Sabirin (the patient ones, etc.).

What is the great news for those who has patient? It is a great reward which is paradise and Allah forgivenes. Allahu Akbar, what more could anyone wish for!

Allah says in the Quran
إِلَّا الَّذِينَ صَبَرُوا وَعَمِلُوا الصَّالِحَاتِ أُولَٰئِكَ لَهُمْ مَغْفِرَةٌ وَأَجْرٌ كَبِيرٌ
Not so do those who show patience and constancy, and work righteousness; for them is forgiveness (of sins) and a great reward. Al Quran 11:11

and also in Quran Allah says that

وَالَّذِينَ صَبَرُوا ابْتِغَاءَ وَجْهِ رَبِّهِمْ وَأَقَامُوا الصَّلَاةَ وَأَنْفَقُوا مِمَّا رَزَقْنَاهُمْ سِرًّا وَعَلَانِيَةً وَيَدْرَءُونَ بِالْحَسَنَةِ السَّيِّئَةَ أُولَٰئِكَ لَهُمْ عُقْبَى الدَّارِ
Those who patiently persevere, seeking the countenance of their Lord; Establish regular prayers; spend, out of (the gifts) We have bestowed for their sustenance, secretly and openly; and turn off Evil with good: for such there is the final attainment of the (eternal) home,- AL Quran 13: 22

Subhana Allah, for every trial that we face, we should try our best to be patient so that we will get Allah's forgiveness and reward of paradise.

I would like to share a beautiful story from a hadith about a woman who has epilepsy.

Narrated 'Ata bin Abi Rabah May Allah be pleased with him Ibn 'Abbas said to me, "Shall I show you a woman of the people of Paradise?" I said, "Yes." He said, "This black lady came to the Prophet and said, 'I get attacks of epilepsy and my body becomes uncovered; please invoke Allah for me.' The Prophet May Allah's peace and praise be on him said (to her), 'If you wish, be patient and you will have (enter) Paradise; and if you wish, I will invoke Allah to cure you.' She said, 'I will remain patient,' and added, 'but I become uncovered, so please invoke Allah for me that I may not become uncovered.' So he invoked Allah for her." Hadith - Bukhari 7:555.

Sometime I wonder why would Allah allow us to get sick? He allows us to get sick because He wants to test us of course and also to remove our sins as describe in the following hadith

Abu Sa'id al-Khudri r.a. reported that the Prophet May Allah's peace and praise be on him said: Whenever a Muslim is afflicted with a hardship, sickness, sadness, worry, harm, or depression --even a thorn's prick, Allah expiates his sins because of it. Hadith - Muslim & Bukhari

Alhamdulillah, after all the hardship we have been through there will always be the end or a relief because that what Allah explains in the following verses

فَإِنَّ مَعَ الْعُسْرِ يُسْرًا
So, verily, with every difficulty, there is relief: Al Quran 94:5

إِنَّ مَعَ الْعُسْرِ يُسْرًا
Verily, with every difficulty there is relief. Al Quran 94:6

Muja progress after PEG surgery.

2009-05-31T19:25:00.007+08:00

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

Since Muja has a PEG on her tummy, her muscles are so relaxed. Last week, Susanne, an Education Assistant at Muja's Carson Street Conductive Education Pre-Primary, asked me if Muja just had her Botox. I said no but actually she was about a month over due for it. She was amazed at her muscles. She was so relaxed when she did the walking and lying task.

Natalie, Muja's Teacher/Conductor, noticed that her eating is so much better without the nasogastric tube. Every day I receive remarks about Muja eating all her lunch. Masha Allah, this is a great news that someone else at Muja's school notices her progress.

Now her alertness is increase. She is holding her head up and looking around by turning her head to the left and right. She also respond well when I call her name. Today, I took her to a school fete, she looked around and respond to each person who greet and touch her with a smile. She was also happy like always on an outing.

Alhamdulillah, I don't have to struggle with brushing her teeth. She would let me put the toothbrush in her mouth and she does not vomit when the tooth brush reaches her molars. She tolerate when I touch around her mouth and face. She like it when I touch her nose and pinch it.

As for her sleeping routine, it gets better. She sleeps at around 10 pm and wakes up at 8 am. For her age she needs more that 10 hours of sleep. My goal is for her to sleep at between 8 and 9 pm.

One more thing that I have discovered is that her tonsils are getting smaller. She might not need to have them removed after all, but we need the doctors to make sure. Her breathing has improved and she does not have to sleep in upright position.

Alhamdulillah I am so please with Muja's changes. The is no power except with Allah.

A wheelchair restraint for Muja's vehicle

2009-05-29T17:53:00.004+08:00

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 am looking for a restraint for Muja's wheelchair to fit in our vehicle. At the moment Muja is using a child car seat when travelling in the car for her safety. Her wheelchair is pushed into the van using a foldable ramp which I bought at River Abilities. I can't leave her on the wheelchair because it doesn't have a wheelchair restraint in the van. Sometimes if I don't bother to put down the ramp I just fold the wheelchair and store in the boot. It is good that Muja's wheelchair is fold able.

Muja's van needs to be modified for a wheelchair access, but it would be the next project due to restricted budget. I have found a nice external wheelchair lift from Tieman Industries and asked a quote. Insha Allah when Muja receives a fund which Therapy Focus is applying, we can proceed. So now we are waiting patiently. I hope it won't be long.

The best place to go when you are searching for disability equipments is Independent Living Centre WA. I got this site from Sue from TCCP Sleep Solution who helped me to manage Muja sleeping problem when we were their client. There is a section where you can search equipment catalogue by clicking the top left side of the site.

From my search I found quite a few. There are Q_Straint Restraints System, Unwin Quattro four point wheelchair restraints system and NMI Restraints System. I have looked at these products at few places and asked for quotes. I was surprised at the figures they gave but once I heard that when dealing with special needs your spending would always be in thousands not hundreds.

I have not decided which one yet because I am waiting for another qoute but I like the AMF Brun Protektor Restraints System.

Istikhara Du'a: A supplication for the guidance prayer

2009-05-25T15:58:00.006+08:00

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

According to Bukhari, Volume 2, Book 21, Number 263:
Narrated Jabir bin 'Abdullah :The Prophet (Sallal Laho Alaihi Wasallam) used to teach us the way of doing Istikhara, in all matters as he taught us the Suras of the Quran. He said, "If anyone of you thinks of doing any job he should offer a two Rakaat prayer other than the compulsory ones and say (after the prayer):

Translation: "O Allah! I seek goodness from Your Knowledge and with Your Power (and Might) I seek strength, and I ask from You Your Great Blessings, because You have the Power and I do not have the power. You Know everything and I do not know, and You have knowledge of the unseen. Oh Allah! If in Your Knowledge this action -------- (which I intend to do) is better for my religion and faith, for my life and end [death], for here [in this world] and the hereafter then make it destined for me and make it easy for me and then add blessings in it, for me. O Allah! In Your Knowledge if this action is bad for me, bad for my religion and faith, for my life and end [death], for here [in this world] and the hereafter then turn it away from me and turn me away from it and whatever is better for me, ordain [destine] that for me and then make me satisfied with it."

The days Muja at the hospital for PEG surgery.

2009-05-23T19:13:00.008+08:00

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 is sleeping on my laps after the PEG surgery at PMH hospital.

Alhamdulillah Muja surgery went well. She took more time for recovery though, because she is special. But I think it was unnecessary because my lack of knowledge about side effects of medicine. She was in the hospital for 7 days because she started vomiting a day after the surgery. The doctor explained that her digesting is not back to normal after the surgery, that's why she vomited. The day she started vomiting, she chewed her mouth until it started to bleed. She kept on feeling the need to vomit even though there is nothing in her stomach to be vomited out. The nurse put a bag to drain her stomach through her PEG to stop her from vomiting. The medicine not only make her vomit but it also trigger seizures to Muja with uncontrolled movements of her mouth chewing, legs cycling and eyes twitching.

PEG on Muja's tummy.

On the third day she kicked the IV off her left foot. That night 2 doctors tried to place the IV without success because her veins are too tiny and crooked. The third doctor did on her upper arm which is not a good place for Muja because she bends her arms most of the time. I was sure that she won't be comfortable with it and the nurse had to tape and bandage her arm so tight that she could not bend it. Poor child.

She was on the IV drip and fasting for almost 4 days. When she was unsettled the doctor thought there was something wrong with the surgery and did an x-ray to find out what happen. Only after 4 x-rays the doctor came to the conclusion that there is nothing wrong with it.

I was telling them that it was normal for her to not be settle. She cried to tell me that she is uncomfortable with the IV on her arm. I knew that she was uncomfortable and her spasm is normal. Anyway every time Muja cried the nurse rushed to her ward and ask if she was in pain. That put pressure on me whether my girl is in pain or something else. During the day she took Panadol, Nurofen and oxycodine for pain relief. She was also on morphine. I am not a fan of this drug cocktail. I don't want her to be on any of these drugs actually. Normally when she is unwell I give her homeopathy remedy. She was fine with it and I don't have to worry about its side effect. With the pain relief that Muja took during her stay in hospital I found out that her vomits was a side effect of morphine from a friend who is a doctor who came to visit Muja at the hospital.

Muja's father giving her a wash at the hospital. She enjoys her father touch.

On the fifth day I told the doctor that Muja was unsettled because she is starving. Then they started feeding her. But that night her IV was blocked again. A doctor tried to put it in but could not find any vein in her hands. He tried the foot but she was so stiff and he decided not to do it. Another doctor from ICU came, who was the same doctor who did her last IV. Again he put it on the same place he did last time but on the other arm. I am so sorry that my child has to be put up with uncomfortable IV on her upper arm just above it. It was inappropriate place to be, especially because of Muja's nature of always bending her arms. Again she fight to bend her arm which was taped really hard on a hard board.

Alhamdulillah that night she was fine. The next day I told the doctor that I wish to go home by tomorrow if Muja tolerate her feeding. A dietician planned a feeding regime for Muja. She is on PadieSure 240 ml for 4 times a day. She told me to start it slow on her kangaroo pump. She was on 65ml/hour at the hospital. Alhamdulillah she tolerated that day and the next day we came home after organising a few things including feeding equipments, medicine and a nurse home visit to make sure everything goes well after discharged.

Muja is better but still fighting to bend her other arm with IV on.

At home that night she slept well and gave me a huge smile the next morning. Now I am sure that Muja was not in pain, at least after the second day of surgery, when she was in the hospital but she was actually not comfortable with the hospital environment.

Muja got an appointment for PEG surgery.

2009-05-13T07:44:00.002+08:00

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

Insha Allah, Muja has her appointment for the PEG (percutaneous endoscopic gastrostomy) surgery this Thursday at PMH, earlier than I aspected. This surgery is for placing a feeding tube on her abdomen.

Currently Muja is using a nasogastric tube, a tube passing through her nose and into her stomach for feeding because she cannot swollow. So from tomorrow. we can say so long to her nasogastric tube.

Local anesthesia is used for this surgery. An endoscope (a flexible, lighted instrument) is passed through the mouth, throat and esophagus to the stomach. The surgeon then makes a small incision (cut) in the skin of the abdomen and pushes an intravenous cannula (an IV tube) through the skin into the stomach and sutures (ties) it in place.

Insha Allah Muja will be in the hospital between 2 to 4 days. Please make dua for her that she is protected from any of these complications that include wound infection and dislodging or malfunction of the tube.

For further reading about PEG in lightnur are below:

What's on her cheek?

Muja schedules for last week

Placing a feeding tube into the stomach

Waiting for an appointment to do PEG surgery.

A Special charity for Conductive Education Center of Western Australia

2009-05-12T08:08:00.004+08:00

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

Taken from here.

The Marijuana-Logues
Presented by Visionmax International Group

A SPECIAL CHARITY BENEFIT PERFORMANCE for CECWA
Saturday, 30 May 2009 - TIME 3pm Matinee (doors open at 2.30pm)
Playhouse Theatre – 3 Pier Street, Perth

The Marijuana-Logues special charity benefit performance is a one‑off, additional show to the international tour – a must-see event – with all proceeds generously donated to the Conductive Education Centre of WA (CECWA) thanks to Victor Vivs of production company, Visionmax International.

All proceeds to CECWA will go towards the provision of Conductive Education in WA to fund specialised teacher-conductors and support staff as well as specialised equipment to run this truly genuine special education for children with physical disabilities and associated needs.

Your $60 charity benefit ticket will include an irresistibly funny performance, souvenir program, PLUS wine and nibbles at interval.

All about the “must-see” Marijuana-Logues…

"For those who might think that it's impossible to do an entire evening of marijuana jokes and stories, guess again."

"Side-splittingly funny. Leave your stereotype of the half-baked stoner at home; these guys are very alert and have their material down like clockwork, providing hilarious hit and hits of funny send-ups, commentary and anecdotes."

The Marijuana-Logues is a "hit" unlike anything you have ever seen. Catch the buzz as performers David Collins (The umbilical Brother), Damon Lockwood and Gerard Cogley (Comedy Inc) riff on the rites and rituals of pot and regale the crowd with the highs and lows of marijuana.

Told from all points of view from hazy to highbrow, The Marijuana-Logues never loses the pot...er point, demonstrating that the stories surrounding the bud* are as varied as those who indulge. The Marijuana-Logues sets herb center stage, delving into fact and fiction, myths and misnomers alike. Not since the 60s has there been such an exploration of this off-taboo but totally titillating topic.

*Disclaimer: This production does not glorify drug use. Rather, it illustrates that cannabis culture is a thing of substance, humor and creativity.

Links to Mind and Muscles report.

2009-05-07T09:21:00.004+08:00

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

If Conductive Education is new thing to you this might help you to know about CE. Please read an analysis by Andrew Sutton at the end of this post regarding this report.

The video brought tears to me when I think about how Muja has to go through this system just to learn the skill to lead her to an independent life. Once she said to her Conductor, Natalie, that CE is hard works. Believe me she has done well and to see her progress is priceless. Thank God there is a system of education that support a children born with brain damaged. There is hope with CE.

Mind and Muscles is a video by 60 minutes about Conductive Education on United State television broadcact in 2004.
http://www.facebook.com/video/video.php?v=89996815694&ref=mf

Its transcript, Mind And Muscle Peto Institute Brings Hope To Kids With Cerebral Palsy is here or copy paste this link http://www.cbsnews.com/stories/2004/02/24/60II/main601944.shtml.

Read an analysis by Andrew Sutton, Awesome and Awful Implications of the 60 Minutes report in his Conductive World website or in this link http://www.conductive-world.info/2009/05/awesome-and-awful.html

Muja's Conductive Education Video

2009-05-01T19:34:00.008+08:00

The pictures in this video were taken at her Conductive Education Kindy Carson Street School last year. I created this video using Pisaca. I added a song or nasheed by brother Dawud Warnsby, Give a little. I use it to manage my pictures. I can also edit the pictures and create a movie with it. With it you can also upload the picture online in the Picasa web album. It is pretty easy to use.

You can watch Muja first movie that I loaded in youtube and lightnur, here. Enjoy!

ENT appointment discussing Muja tonsils

2009-04-29T20:33:00.006+08:00

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.

What happen during this autumn school holiday?

2009-04-25T19:17:00.005+08:00

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.

I hate it too

2009-04-22T11:19:00.005+08:00

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 ...

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

What do you hate?

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

2009-04-19T11:20:00.003+08:00

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

Muja at her grandparents 50th anniversary

2009-04-18T10:51:00.001+08:00

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.

Muja's picture in her new wheelchair

2009-04-15T10:47:00.001+08:00

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.

Waiting for an appointment to do PEG surgery.

2009-04-03T15:33:00.005+08:00

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.

Parents Plan to fund the way to solve special school matters

2009-03-31T21:16:00.003+08:00

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'm just posting the link to the Conductive Education Center of Western Australia media release 25th March 2009 - Parents Plan to fund the way to solve special school matters.