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

Tuesday, 31 March 2009

Parents Plan to fund the way to solve special school matters

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.

Monday, 30 March 2009

Muja's first Merit Certificate for signing her name.

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

Guess what?

Last Wednesday Muja had her first Merit Certificate for signing her name using the letters M, J, U and E. Masha Allah.



I am very proud of her and she gave a big smile when receiving the award. In the picture Muja is with one of the caring Carson Street School Education Assistant while received it from a staff of Starlight Children's Faundation Australia.

Muja's hip dislocated more after increasing of Botox.

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 I took Muja to PMH for her hips surveillance. She had an x-ray of her hips before her legs were measured and checked by a physiotherapist. I just wanted to make a note here that from the measurement, her right hip has moved 10 % more than the last measurement to 37%. It's a big number!

Insha Allah I hope the measurement is a mistake because she was not staying still while taking the x-ray. It must be a mistake because last October when Muja had her Botox, the doctor increased her dosage. I also find out that her legs are not as tight as it was when she is at the fourth/fifth month after Botox before. Read here and here about her last hips surveillance. What I mean is that her legs are more relax as a result of the Botox increasing. So it doesn't make sense if her hip dislocated up to 10% more.

The physio is just concerned and she will refer Muja to the orthopedic. So now we are patiently waiting and hoping for nothing major. Please if you read this make dua for Muja's well-being. Thank you!

Tuesday, 24 March 2009

No special teacher for our special kids

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

Conductive Education of Western Australia media release 21 March 2009 No special teacher for our special kids

The West Australian published Kindy door shuts on disabled children

Andrew Sutton wrote Setback in Western Australia

Monday, 9 March 2009

The result of Muja third sleep study.

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 so sorry for taking so long to post this. Something happen in my life and it was so unexpected and I need some times to deal with it.

We came back to PMH for the sleep study result in the middle of February 2009. I am very frustrated with the result that Muja can't go on the CPAP machine because there is no right size of mask for her.

When I came in instead of telling me what came out from the study the doctor asked me what I thought about the study. So I told him that I found out that the CPAP machine didn't make Muja go to sleep but her snoring gone and her breathing was clear. But this is good sign that I don't have to worry if Muja stop breathing at night because her breathing airways blocked. Not to mention that her snoring disturb my sleep. Of course she was uncomfortable with the mask because it was her first time put on it.

The night when we did the study, the machine kept turning off by itself and the nurses had to switch it on again and again throughout the study. It won't happen if they haven't provided the broken machine for the study. And I am sure they have plenty of spare CPAP machines where they can change that night when they found out that the machine didn't work.

The doctor said that the nurses had a hard time just making sure the machine kept going. He also said that there is no right size for the mask so she can't go on the CPAP machine. I can't believe this.

What really disappointed me was he will refer Muja back to ENT for the other option which is to remove her tonsils which we are not going to do in the first time.

Before I left the Respiratory Medicine Department I asked the doctor if by increasing melatonin dosage will help her go to sleep and he increased it to 10 mg.

For 1 week I gave her melatonin, she sleeps early than before. I only stopped the melatonin because it increased her seizures and also her pubic hair grows (it increased puberty).

The earliest time she goes to sleep now is at 10:30 pm and without melatonin, Alhamdulillah. I think the school makes a big change to her sleep time as well. Now that she is at school fulltime, she is too tired after school. Usually she has a small nap after school and goes to bed between 10:30 pm to 12:30 am. She wakes up at 8 am to get ready for school.

Alhamdulillah I am happy with her sleeping time. Alhamdulillah and I hope it will get better. And only to Allah I ask for help.


Today, you can make an immediate difference in the life of Muja. Please send the most generous gift you can here! Thank you.