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

Wednesday, 25 June 2008

Should I get a stroller or wheelchair for Muja?

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

We went to TCCP for upgrading Muja sitting frame or insert. On my last post, Waiting for the fund to adjust Muja sitting frame, I have a list of what need to be done to her insert. Alhamdulillah, yesterday we got an appointment for the upgrading.

When we were there, Monica, asked what we really need. Muja OT, Karlee, who was with us told Monica that Muja needs like a completely new insert as she grows over it. Monica told us that we have to think for at least two years for Muja sitting needs. We don't want to do something that needs more adjusting six months down the track, then we can't do anything because we don't have fund. Plan ahead.

When Monica made an assessment, she found out that Muja stroller where her sitting frame is attached to is too narrow. The new modify frame needs to be wider but then it would not fit in her stroller. The problem now we need to get a new stroller or wheelchair that can fit her new modified custom made sitting frame. We are looking for the one that can be laying down so when Muja tired of sitting she can recline on it. The one that we look for must be fold able so it can fit in the car. Not too heavy to lift because I need to look after my back.

Monica has suggested for Muja a Kimba Spring Rehab Stroller or Zippie TS Wheelchair. Insha Allah, I would prefer the stroller than the wheelchair. Masha Allah, she has organised for us to try it next Tuesday.

She also made a postural assessment to custom made Muja sitting frame. To tell you the truth I have no idea with most of the term she used when doing it. But I am aware she is very professional and know what is good for Muja in term of getting the best support for her sitting frame. Alhamdulillah, Allah send to us good people to deal with our affair.

Friday, 20 June 2008

Conductive education: Rolling over task

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

One of Muja conductive education tasks is rolling over all the way from toilet to her stool at the plinth where the laying task series is. Once she arrived at kindy she is taken to the toilet for toilet training. It takes at least couple of minutes. When she did wee, the conductor assistant usually make it a big thing and hoooray for Muja. Sometime she didn't do anything so her assistant put on her nappy on before the next task like rolling, crawling or walking.

In this post, I will post about her rolling over task at Conductive Education, Carson Street School in East Victoria Park. I remember on last post I promised to post about her walking task. Insha Allah, it is coming soon. Here, I have some photos of Muja rolling task. Before the task begin she wears her AFOs splint and arms wrap to stretch her arms.

Muja is laying on her back on the floor with her head in the middle.

The assistant helps stretch her arms up while her other leg cross over the other leg.

She keeps pushing her leg and roll over her body until she lay on her tummy.

The assistant assists Muja to stretch her legs straight and she holds her head up beautifully, Masha Allah.

She keeps doing the steps until reaches her plinth.

Wednesday, 18 June 2008

The result of Muja second sleep study.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Sometime last month Muja and me went to PMH for a sleep study. Alhamdulillah last Tuesday we get the result. From the study we knew that Muja had a problem with her sleeping because she struggle with her breathing. The study showed a low oxygen level in her sleeping. Basically, she has difficult breathing so her sleep was disturbed.

The doctor, at Respiratory Department, left me with two options. One to remove her tonsil and two to use mask. Why remove the tonsil? According to the doctor, it block the airways during sleeping. That why she has loud irregular snoring when sleeping because she has to breath deep. If the tonsil is remove, she might still have to use mask if removing it does not improve her breathing.

I told the doctor that her father would not be supportive with any surgery, so I would go for mask for now. So, Insha Allah we will be waiting for our appointment sometime in two week time to go for the mask. It was so silly of me for not asking her detail about the mask as I thought that it is going to be an oxygen mask using a CPAP (Continuous Positive airway pressure) Machine.

Alhamdulillah, at least we know what causing Muja lack of sleep. Masha Allah, on the last post I mention how her sleeping has improved. Alhamdulillah, so far she is going to sleep around 10 pm and waking up around 8 am. Some days she wakes up early. She still wakes up a few times at night and I find that she has trouble going back to sleep because of her breathing. Insha Allah we can see more improvement after using a mask.

Tuesday, 17 June 2008

Virgin Blue to face discrimination suit

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Source: The West

18th June 2008, 14:42 WST

A Sydney judge has ruled that a discrimination suit against Virgin Blue's disability policy is in the public interest, and has made an order helping it to proceed.

Maurice Corcoran, president of the Federation of Disability Organisations, has joined with passenger Tom Ferguson to lodge a public interest suit in the Federal Court of Australia.

The suit follows controversy in 2006 over Virgin's Independent Travel Criteria (ITC), which Mr Corcoran and other disability support groups heavily criticised.

According to a statement of claim filed in the court, the ITC requires anyone who is unable to reach the oxygen mask, put on a life jacket, fasten a seatbelt or understand instructions to travel with a carer.

"Mr Corcoran and Mr Ferguson each claim that they are unable to comply with the ITC, and have commenced proceedings claiming that, in implementing and applying the ITC, Virgin has discriminated against them, directly and indirectly," court documents state.

Justice Annabelle Bennett this week capped costs in any judgment against Mr Ferguson at $15,000 and at $40,000 for Mr Corcoran, allowing them financial leeway to proceed with their case.

Both men had submitted that any prohibitive costs order, were they to lose, could deter them from continuing the case.

Justice Bennett said the issue was one of considerable community importance.

"The ability of disabled persons to fly with Virgin, a major commercial airline in Australia, without the extra cost of a carer raises questions of public interest beyond the private interests of the applicant," she said.

Virgin also considered the case to be of vital importance to its operations, she said.

"Virgin says that if it is not able to implement the ITC, its officers and employees will be exposed to a risk of prosecution and civil actions," Justice Bennett said.

"Further, (it claims) that its employees' and customers' safety could be compromised."

The men will call evidence in relation to travel provisions for unaccompanied minors, the regulations of other airlines, and confidential information obtained from Virgin about why the policy was adopted.

Their counsel is expected to argue that Qantas is the benchmark for the treatment of passengers with disabilities.

Virgin will call extensive evidence about the history of and use of the ITC, including amendments made in 2003, 2006 and 2007.

It will also demonstrate the vital actions passengers must be capable of undertaking, and outline staff responses to mid-air turbulence or cabin decompression and emergency aircraft evacuation, including ditching over water.

Virgin accepts Mr Ferguson cannot comply with the ITC, but is disputing the legitimacy of Mr Corcoran's claim.

Neither man is seeking personal compensation.

AAP

Sunday, 15 June 2008

Muja in PMH for virus infection in her tummy, yet again.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu


For two days Muja didn't go to school because she was sick and vomited. Usually when she gets virus in her tummy, she could be so dehydrated but sometimes she gets better after a few days. I gave her feeding continuously by setting the kangaroo pump on 50 ml/hour speed, but she still vomit up to 6 times on the second days. As she got hot on Thursday night and started shivering plus still vomiting, I asked her father what should we do. He got her some Panamax to control her fever but soon after that she vomited again. Then her father said to take her to PMH.

It was almost midnight when we arrived in PMH last Thursday night. Alhamdulillah there were not many sick children when we got in the emergency department, in fact it was only us. Not long after the nurse pre-examined her and I signed a paper work, we were called into the emergency ward. We waited for almost an hour when finally a doctor came. I explained to him the she was vomiting and have a bit of temperature during night time. She didn't have a runny nose or diarrhoea but few coughing after vomiting.

The doctor suspected either she got chest or urine infection. He also wanted her to stay in the hospital so then her blood and urine samples can be tested and to check her chest x-ray.

She was a bit dehydrated. An hour after that she was given a drip to pass fluid into her bloodstream, through a plastic tube and needle that goes into one of her wrist veins. It was a bit of struggles when the doctor tried to insert the needle into her veins. After that she became unsettled. Maybe she was not feeling comfortable with that on her wrist.

That night we were taken to isolation room in over flowing ward because there was no empty rooms in the other ward. After giving her some panadol for her fever she went to sleep at 2:30 am. She was awake around 7 am. Soon after that I took her to x-ray her chest. At around 9, a team of two doctors Amanda and I forgot the other one from developmental and rehabilitation department came with good news that she hasn't got any infections in her urine and her chest is clear. Her blood test was alright too. Alhamdulillah. So she has another virus in her tummy again. The two other doctors came Anna and Gavin also fron the same department. She recommended for Muja not to have her feeding until afternoon opposite what the first team of doctors for Muja to start her feeding right away. The nurse who was trying to do her jobs left confused.

The whole day on Friday, she was on drip. In the afternoon after we got a room in ward 8A, she was given fluid with salt to replace her mineral lost during vomiting through her nasogastric tube, the tube that goes down to her stomach through her nose. But soon after it finished she vomited heaps with blood coming from her mouth as she bit her inside check. She was so tired with an hour of vomiting and I had sore arms and back tring to relax her as she got so stiff. So that night she was not beeing fed with her normal formula, in fact it has been since last night she has had her last feeding. Doctor Amanda decided for her to have a rest that night without any feeding. That night she woke up every hour until I got her to sleep with me on my bed.

Saturday morning her father came early so I can go home. Alhamdulillah she didn't vomit with continuous feeding on 45ml/hour. Her doctor Gavin, who checked her that morning told her father that if she didn't vomit, we could take her home. She was given movelex to open her bowel as she hasn't done it in 5 days. She looked better when I came that Saturday afternoon. I was disappointed when the doctor wanted her to stay for another night. So we slept 3 nights at PMH. She slept on my bed like the other night, but that night she slept better.


On Sunday morning her doctor Anna told me that if she tolerate half of her normal feeding that we can go home. Alhamdulillah, she did not vomit.

When we left the hospital it was still raining but I am glad that we were going home.

I would like to thank all her doctors from Developmental and Rehabilitation Department and nurses who care for Muja while she was in the hospital. Special thanks to all my family (mak, Ikin, Fahmi, Aisha, Nojam, Nizam and my nieces and nephews) and friends who visited Muja. May Allah rewards you with good.

Wednesday, 11 June 2008

I don't like eating cupcakes but enjoy baking them for my girls.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

I felt like baking cupcakes after visiting Suraya's bakeology.com site few weeks ago. I don't really like to eat them because I don't like sweet. But my children love cake so much, then I thought I would surprised them with cupcakes when they get home. So I was busy baking the whole afternoon making vanilla heart cupcakes with orange frosting.

Saturday, 7 June 2008

DISABILITY DISCRIMINATION ACT 1992

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

DISABILITY DISCRIMINATION ACT 1992

Increase her Botox on her next October injections

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Last April Muja had her fourth Botox injections on her hamstrings and abducters muscles for both legs. She needs it because her legs are stiff most of the time and she crosses her legs like scissors. This could dislocate her hips.

I went for Muja's Botox review at Rehabilitation Mobility Clinic of Developmental and Rehabilitation Paediatric at PMH, last Tuesday. After making some measurement on Muja tights, legs and feet the paediatrician Simon William found out that her feet measurement has improved, meaning she made some movements. He wanted to increase the Botox on her next injections appointment in October to make her upper legs move.

I told him that Muja is still getting stiff legs when she is not happy or sick or perhaps in pain. I notice that Botox has reduced her stiffness, but then it comes back to stiff after four months of injections. I find it very hard to separate her legs when changing her nappy and buckling her car seat belt.

Is it effective for a child with cerebral palsy to have an increase in Botox further down in his or her life? How much is too much? Does it really help with movement?

Thursday, 5 June 2008

Lemon and sugar

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

This is sweet poem I received today in my mail for us to share.

LEMONS and SUGAR;

You may not realize it, but it's 100% true.


1. There are at least two people in this world that you would die for.

2. At least 15 people in this world love you in some way.

3. The one reason anyone would ever hate you is because they want to be just like you.

4. A smile from you can bring happiness to anyone, even if they don't like you.

5. Every night, SOMEONE thinks about you before they go to sleep.

6. You mean the world to someone.

7. You are special and unique.

8. Someone that you don't even know exists loves you.

9. When you make the biggest mistake ever, something good comes from it.

10. When you think the world has turned its back on you take another look.

11. Always remember the compliments you received. Forget about the rude remarks.

Always remember....
when life hands you Lemons,
ask for Sugar and call me over!

Human stem cells help brain-impaired mice

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Source: Reuters

Wed Jun 4, 2008 5:46pm EDT

By Will Dunham

WASHINGTON (Reuters) - Injecting human stem cells into the brains of mice helped them recover almost fully from a neurological condition similar to a group of childhood diseases in people, researchers said on Wednesday.

Some, but not all, of the mice in the study made major improvements after a one-time injection of stem cells, leading the scientists to express hope that the same approach might be tried in children within just a couple of years.

The treatment, in essence, fixed defective wiring throughout the brain and spinal cord, the researchers said.

"We were just waiting for them to die day by day, but they just didn't. They got better day by day," said Dr. Steve Goldman of the University of Rochester Medical Center in Rochester, New York, who led the study.

"They started to shake less. They started to regain strength. They started to move around more. They started to explore more. They started to have shorter seizures and then fewer."

The incurable diseases for which this kind of stem-cell injection might work include cerebral palsy, Tay-Sachs, Krabbe's, Canavan's disease and Pelizaeus-Merzbacher disease, according Goldman.

"Potentially it may give us a means of treating, using cell transplants, a number of diseases," Goldman, whose study is in the journal Cell Stem Cell, said in a telephone interview.

Doctors have long struggled to find ways to help children with these conditions.

The 26 mice in the study were bred so their bodies did not make myelin, a fatty coating around nerve cells that serves much as insulation does around an electrical wire. The condition leaves the mice prone to seizures and weak and makes it hard for them to stand or walk.

The treatment involved a one-time injection of a kind of human fetal stem cell known as a glial stem cell into mice shortly after their birth. Stem cells have the ability to develop into various types of cell in the body, and these particular cells turn into the cells involved in making myelin.

About 300,000 of these stem cells were injected into the brain of each mouse in five different locations to better allow them to spread to the entire brain and spinal cord. Myelin coats long sections of neurons and electrical signaling becomes impaired without it.

The mice had a condition that, untreated, normally kills them within about 20 weeks of birth. Twenty of the treated mice lived a bit longer but still died. However, six others made dramatic improvements -- four returning nearly to normal.

By the time they were nine months old, they were just about as good as normal mice aside from a bit of a body tremor when walking forward, Goldman said.

The approach showed that doctors can restore normal myelin production in these conditions, he added.

(Editing by Maggie Fox and Cynthia Osterman)

Wednesday, 4 June 2008

Hearing review.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Muja, her father and me went to her hearing appointment on Thursday at Australian Hearing, in Perth. The test showed that she respond better that before. Occasionally she looked towards the elephant puppet but most of the time her eyes blinked to the sound. Her audiologist set her hearing aids higher that before and had them clean. He is ordering a new set of hearing aids for Muja. The fitting will be mid July.

Alhamdulillah, she respond more to the sound after the adjustment but when the mould of the hearing aid get loose and out of her ear it make loud sound.

Note: Muja missed her school because of the appointment.

Previous posts mentioning Muja's hearing or hearing aids or hearing appointments:

When M was 1 month old we found out that she lost her hearing moderately.

Muja had her appointment at Australian Hearing

Hurt her ear when her hearing aid is on

Muja's left hearing aid was not in her ear

I packed her hearing aids

Tuesday, 3 June 2008

My favourite quotation: Success comes with risk.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Recently I stumbled into Me, Myself and Mylife blog written by Hisham when I googled search on Malaysian in Perth. I like his writings as it were very wise and full of wisdom.

We are still not aware that success comes with risk, it does not come by just waiting for it. - Hisham.

Sunday, 1 June 2008

Conductive education: School for parents.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

I love Friday. It is a special day for Muslims because Abu Huraira reported the Apostle of Allah (may peace be upon him) as saying: The best day on which the sun has risen is Friday; on it Adam was created. On it he was made to enter Paradise, on it he was expelled from it. And the last hour will take place on no day other than Friday. (Sahih Muslim, Book #004, Hadith #1857)

It is also the day I go to school for parents at Muja's school. These are Muja pictures at her kindy, Carson Street School. I took them on the day I went to the Conductive Education school for parents.

At the school Muja and me learn daily living skills. It is in a sequence of activities on the motor skills. There can be a task series for lying on the plinth (or slatted table), or for hand skills, or preparation for walking. Insha Allah, next time I will post about her walking task, as it was very interesting for me.


Muja lying on the plinth task series.

I really enjoy in the sessions involving Muja in active sitting, standing, walking, manipulation, communication, cognitive development and self-help skills.



Muja sitting while wait patiently for a craft activity.



There are special wooden furniture that encourages Muja to hold and grasp. These can include things like ladders, slatted “plinth tables”, sticks and grasp bars attached to tables.



Muja hold on the grasp bar with arm wraps on to stratch her arm straight.



It is one of the best moments I spend with her and it is very special, as I learn a lot about her ability. Insha Allah, with it I can continue the tasks at home and teach other family member by modelling to them. So we all can get involve.