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

Saturday, 31 May 2008

Disabled services package 'just a start'

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Source: The West Australian

30th May 2008, 12:40 WST

The nearly $2 billion in additional funding for the disabled and their carers is just a start, says the federal government.

An extra 24,500 disability services will be available in Australia from next year, federal and state disability ministers announced in Sydney.

The $1.9 billion in funding, announced last year, will provide 2,300 additional places in supported accommodation and the same number of home-support packages.

The funding also allows for 10,000 places in respite for carers and an additional 9,900 individual support packages.

The details of the funding were announced at the Disability Services Ministers' Conference.

Federal Community Services Minister Jenny Macklin said the funding was only the start for helping an estimated 600,000 Australians with severe or profound disability.

"The fact that we are allocating money ... will certainly go some way to addressing what has been a very serious level of unmet need," Ms Macklin said.

The funding spans the four years of the next commonwealth, state and territory disability agreement, which the ministers will formally sign at the end of 2008.

For the first time in history people born with severe intellectual disabilities are reaching middle age and are expected to live until old age.

Ms Macklin said she understood the government had to address a possible surge in demand for disability services.

"We're recognising that this is only a start - that we have a lot more to do," the minister said.

She also defended a recent $100 million federal boost for the disabled, which some disability support groups have labelled as "insulting".

"I think it's a very substantial improvement ... that will certainly help," Ms Macklin said.

"I think it will give some relief to carers and families."

Prime Minister Kevin Rudd told reporters in Brisbane that Friday's announcement was a significant agreement and he hoped more could be done for the disabled.

"This is an important contribution to an area of great need - that is, those people with disabilities and those caring for those with disabilities," Mr Rudd said.

"We still hold open the possibility of doing more when final agreement comes out at end of year."


Thursday, 29 May 2008

Thanks Allah for changing Muja sleeping time

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

I praise Allah as always for making our life ease. I always believe that after every hardship, Allah has prepared ease for us. It was just a matter of wait and patience.

Muja sleeping pattern has changed dramatically, Subhana Allah. Read here and here on my previous post about Muja sleeping.

She was on Melatonin since April. I was not happy with it when her doctor who prescribed it told me that the side effect of it includes increasing her seizures and early puberty. Allahu Akbar.

I turned to Allah and asked for His guidance. I gave her Melatonin even though deep down inside I was not happy because of its side effects. One month I saw nothing change. She still sleeps between midnight to dawn, fajr time. Allahu Akbar. I sleep whenever she sleeps, but then I have to wake up early to prepare and drop my children to school. Alhamdulillah, I used to it. Since she was born my sleeping is in chaos. AS a mother I don't care about me. I just want my daughter to get better.

I was only worried about her seizures. The first month on Melatonin, no seizures happen. But early this month she started doing involuntary movement. She chewed her mouth until bleeding. Her arms and legs stiff. Sometime her legs moving like cycling. Two times the school called me because she had temperature but shivering, one before school holiday and one on the week 3 of term 2. She was very hard unsettled. She got tummy ache and she vomited after feeding.

I stopped gave her Melatonin after second week of this month. (May - this month) I saw the change on her sleeping time. Muja sleeps an hour before midnight. Then one hour earlier. ALHAMDULILLAH. Now she sleeps around 9 pm without Melatonin. Allahu Akbar.

I asked Allah to keep her sleeping pattern as it is, if it is going to benefit us, Ameen.

Sunday, 25 May 2008

Good Sammys mark 50 years

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Source: The West Australian

24th May 2008, 9:00 WST

Bernice Moorhouse with supervisor and good friend Carol Williamson. Picture: Barry Baker

In 1958, a young, profoundly deaf woman, Bernice Moorhouse, approached the Reverend Ralph Sutton at Perth’s Wesley Mission, asking him to help her find a job.

Having suffered a debilitating car accident two years earlier, Mr Sutton was all too aware of the difficulties and frustration that people with disabilities faced in securing work. So, rallying his parishioners to donate clothing which could be mended, washed and sold by Ms Moorhouse, he opened the first, tiny Good Samaritan Industries shop on August 18, 1959, in Murray Street, Perth.

Fifty years later, Ms Moorhouse is still working hard, one of more than 5000 people with learning, sensory, physical, neurological or psychiatric disabilities who have been assisted over 50 years by the organisation now fondly known as Good Sammys.

Speaking through an interpreter at the organisation’s Canning Vale sorting facility recently, Ms Moorhouse, now 64, beamed and gave the thumbs up when asked how she felt to have helped so many people.

Good Samaritan Industries’ first large-scale clothing processing facility opened in 1961 in Welshpool with three staff and one truck, while a single contract employee worked two days a week packing nails by hand.

Now, more than 450 people are employed in 20 Good Sammys retail outlets throughout WA and at the Canning Vale facility, where workers sort through the mountains of clothes, furniture and household goods which pour in from the community each year.

The factory also houses Many Hands, a commercial packaging and assembly service which employs 30 disabled people and services more than 40 businesses in WA.

The wide smiles and waves that greet visitors to the facility are a testament to how people feel about working there.

Philip Solomons, 49, has been with Good Sammys for 33 years, working his way up into a supervisory role and winning multiple awards for his commitment to education.

After completing leadership development and transport and road distribution courses, he hopes to get his forklift ticket and become a workplace trainer and assessor.

“I love it, it’s rewarding being here — look what I’ve achieved,” he said.

“A lot of people come in here and they’re really, really scared — it’s like they’re in a shell. It takes someone else to bring them out of that shell, to make them realise that they’re among people who will be supportive and caring.”

Some have even found love among the piles of clothes.

Factory assistants Lauretta Albert, 31, and Ian Chapman, 42, have both worked for Good Sammys for 15 years and will marry at the end of the month, to the delight of their colleagues.

Mr Chapman credited his workplace friends, “fantastic” bosses and chief executive Chris Jones, who “takes time to come out and talk to you and be part of the team”, for creating a supportive environment to work in.

He will also forever be grateful to Good Sammys for helping him find the woman of his dreams. “I didn’t think there was anyone out there for me,” he admitted, dropping a kiss on his blushing bride-to-be’s head.

Mr Jones took the helm five years ago after years in big business and has never looked back, saying it is the friendliest place he has ever worked.

About 600 people each year are found jobs and supported through their employment in hundreds of businesses throughout the metropolitan area by the Options Employment agency.

In the past year alone, Good Sammys has sold over 2.5 million items of recycled goods, servicing 66,000 customers a month.

Ms Moorhouse will be honoured for her outstanding contribution at a gala dinner at Government House tonight to celebrate Good Samaritan Industries’ 50th anniversary.

In the meantime, the community is encouraged to dig deep and continue to support Good Sammys with donations of clothes, and in particular household goods.

People who wish to donate items can drop them at a collection bin (see, take them to a retail shop or call 1300 855 130 to arrange a pick-up from home or business.


Tuesday, 20 May 2008

Harvey Norman found my daughter's missing hearing aid

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

One afternoon I took Tas to the Belmont Shopping Center to buy her new shoes, when I noticed Muja's left hearing aid was not in her ear. I looked in the car, it wasn't there. I checked on her car seat, it wasn't there too. I kept searching around and searched on her stroller but it was no where to be found.

Inna lillahi wa inna illahi rajiun. I acknowledged that truly we belong to Allah and we will return to Him.

At home I looked everywhere but still no luck to find it. Alhamdulillah, may be it was meant to be taken.

It has been one week Muja's hearing aid went missing. Suddently I remember the day we went to Harvey Norman. Recently our camera broke so we were looking for a replacement. When we were looking at one of the cameras there, Muja became unsettled, so her father picked her up from her stroller. I thought that was the time when her hearing aid got lost and fell on the floor without anyone of us realised it.

We went back and asked around about missing property. One of the salesman said he didn't know if they have one. He told me to ask the cashers. At the casher I asked about missing property. She asked me what was missing. I told her that it was my daughter hearing aid. She went and came back with something wrapped in paper and gave it to me. It was the missing pair of Muja's hearing aid, Alhamdulillah. I thank her before left the store.

Anyway we ended up buying Powershot Canon S5 IS from Harvey Norman that very same day. It is awesome.

Saturday, 17 May 2008

Muja had tummy infection again.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Last Thursday, we were in the Coles doing our shopping when I heard my mobile rang. I looked at the screen and it said Carson Street School. It was Micki, a nurse at Muja's school, told me that Muja had a temperature. I said I'll come as soon as I can.

When I arrived at the class, Natalie, Muja's teacher was holding her in her arms. Micki was there too. She told me that her body was hot but she was shivering. They used cool pad to lower her temperature. Natalie was conserned about her seizures. She also said that it didn't feel like Muja.

She was unwell during weekend. She had tummy flu. She vomitted after her feeding. But that morning she look fine, so I sent her to school.

Anyway, I took her home but on the way home I decided to take her to the Naturopath. We never had been to this practice before. I found out that she is actually learning homeopathy with Kate, Muja's, homeopathic practitioner.

After long initial consultation she gave Muja Flu Complexes, a homeopathic remedy. As recommended we also get a muti-vitamin, DTM liquid, NRM Formula and probiotic, beneficial bacteria for digestive and immune system.

It was nearly 2 pm when we left the place. We went straight to Warong Bistari to have our lunch, as we were very hungry. We both eat nasi campur. When I was paying, my handbag fell on the floor. I heard glass broke. I realised that the multi-vitamin which I bought a while ago was in my handbag. It was liquid so it spilt all over my handbag and on the floor in front of Warong Bistari. In my mind I said Alhamdulillah. Allah was testing me.

That afternoon we ended up bought another bottle of that same multi-vitamin.

To read about her tummy infection previously go here.

Friday, 16 May 2008

Nice beautiful recitation from Masjidil Haram and Masjid An Nabawi

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Right now I really miss Makkah and Madinah
I miss praying in the Masjidil Haram
I miss praying in the Masjidil Nabawi.
I miss the voices of the imams who led the prayer
I miss shearing my tears because his recitation enters right into my heart
I miss the feeling of my heart trembling
I miss the tranquility I felt in there
I miss the peace in there
I miss the feeling of how close I can be with Allah in there

Enjoy the videos. Subhana Allah! I love Sheikh Mahir al Muayqali recitation and also Sheikh Salah al Budair. May Allah reward them with good in this world and the hereafter.

Sheikh Mahir Isha Prayer in Masjidil Haram

Sheikh Salah al Budair Maghrib Prayer in Madinah

Monday, 12 May 2008

Waiting for the fund to adjust Muja sitting frame

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Most of Muja therapies session is on Tuesday this term. But last Tuesday was a special day for Muja. She was the star of that day. The TCCP was doing training for equipment assessment and her occupation therapist asked me if I wanted Muja seating insert and tray to be assessd on that day. I said why not, as that assessment will somehow speed her equipments to be upgraded when she gets enough funding through TCCP. Her insert desperately need to be adjusted and it has been a year of waiting.

We were there between 10 am to 12 noon. There were 3 other with different type of cerebral palsy being the stars for that day. The training was divided into 3 groups, and Muja was in the Early Intervention group. While they made the assessment her OT and physio play with her.

From the assessment they found out that the followings need to be changed:

  • lowering the foot rest
  • adjusting the angle of the head support pad
  • decreasing the wide of the hip support pads
  • new chest support pads
  • new lower back support pad
  • new removeable knee separator
  • adjusting the notch for removeable tray
  • new cushion
  • adjusting the insert frame

They cannot tell when the change will take place, as there is not much fund available for Muja at this time. We have been waiting for one year and still waiting for the fund so that Muja sitting frame can be adjusted. I would like to urge anyone to please give generously to The Center of Cerebral Palsy so that the needs of people with cerebral palsy can be taken care for. Click the link for donation here.

Saturday, 10 May 2008

Placing a feeding tube directly into the stomach.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

I had a busy week with Muja, alhamdulillah. There was nothing bad happen, Alhamdulillah, just the normal things that happen to a special needs child like her.

On Monday, she had an appointment referred by her dietician and speech pathologist to see a pediatric at The Center of Cerebral Palsy for discussing her option of percutaneous endoscopic gastrostomy (PEG). It is a procedure for placing a feeding tube directly into the stomach through a small incision in the abdominal wall using an instrument known as an endoscope.

Since she was born she can't swallow the foods because she has no control of her muscles. She has been nasogastric tube feed since then. Alhamdulillah, with the tube feeding she has no big problem with her respiratory. Sometime she has wheezy breathing but can be control with Ant Tart, a homeopathic remedy.

She is not receiving enough nutrition from oral feeding. Alhamdulillah, she gets all her nutrition through her tube feeding. She is taking Pediasure formula with added vitamins and minerals. She also takes supplement vitamins which was recommended by her Naturopath. She is healthy and growing. The only problem would be her breathing although it is not major. She must be feeling uncomfortable of the tube in her nose and down her throat.

I am OK with PEG feeding for her better breathing, but her father thought that it is unnecessary on her since her respiratory is not big problem. When she was 9 months, she has been recommended for PEG but I agreed with my husband not to do that because we thought she can be oral fed by now.

Now she is nearly four and can takes up to 10 teaspoons food when in her good mood. When I push her more, she might vomit and the chance for the food to get into her lungs can create respiratory problem. Basically she does not get enough calories from oral feeding only.

One of the carer at Muja school told me that her oral feeding is improving. She said that her swallowing is getting better. It is good new that someone else noticed her, although I know Muja is getting better everyday but on her own time. I hope she will keep progressing rapidly on her oral intake.

I am in dilemma, whether to keep her nasogastric tube for feeding or placing a feeding tube directly into her stomach. I don't know. Should I give her more time and wait? May be I should! Meanwhile I will do istikharah. May Allah guide us to what ever good for us, Ameen.

Saturday, 3 May 2008

Muja second sleep study at Princess Margarate Hospital.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Since Muja was born and diagnosed with Cerebral Palsy, she always has problems with her sleeping. She had her second sleep study on last Thursday night. We arrived at PMH admission's office at 5 pm. We did an admission paper work before went to the Respiratory Department in Level 3. Before we were there, I found out that Muja's pillow was missing. I look around but can't see it anywhere.

When we arrived at Respiratory Department, there were 3 other children who were on sleep study as well. One of the nurses on duty was the same one we had on Muja's first sleep study on February, last year. Muja was weight (13.4kg) and measure (91cm) by the nurse. Her head was marked for the wires. Then we were taken to our room for that night. This time we had different room. It had more machines, camera and spacious. Alhamdulillah, my bed was better. I had a worse one last time and didn't get a good sleep.

I told one of the nurses about Muja's pillow before I went up to look for it. I walked all the way to where I parked the car in Murray Street. I saw something on the floor at the end of the tunnel for crossing Thomas Rd. to Murray St. It was dark so I could not see it until I got closer. Alhamdulillah, it is Muja's pillow but it was so dirty. I went back to my room to eat my dinner. While eating my dinner, I fed Muja orally before specially tube fed her.

I was reading my journal on my bed when two nurses came in at 8 pm. One nurse put wires on her body and the other wired her head. I thought the wires would make her uncomfortable but they did a good job tying the wires together. Muja has such a small head so the bandage on her head came off soon after she lay on the bed.

At 9 pm she started crying. I tried to calm her down by patting her body but she cried more loudly. Then I jumped on her bed and lay down next to her and cuddled her. She still was crying when I decided to hold her on my lap. So I sit up on the bed with my back on the wall while holding her. She stopped crying. Then I pat her body gently until she fell asleep which was at 9:30 pm. Almadulillah, when I put her down on the bed she was sound asleep. I lay down few minutes on her bed, before I felt uncomfortable and moved to my bed.

During sleeping I heard Muja loud breathing and snoring. Every time the nurse came in to check on Muja I was awaked but then I went back to sleep. Alhamdulillah, I had the best good night sleeping that night, thanks to the sleep study.

At 4:30 am Muja woke up. One hour after that, the nurse decided to stop the study because she was still awake. I noticed that the head of her bed was lifted up when I was awake. I stand by her side when the nurse unwired her. We got home at 6:15 am.

Now we have to just wait for the result. I prayed that everything went well, Ameen.