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

Wednesday, 19 March 2008

Special needs equipments review

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Today, Muja speech and physio came with TCCP senior physiotherpist for reviewing her equipments. Her walker is small as she grow taller. The same with her standing frame.

Muja was not in her best mood today. Her legs were stiffen as the botox is weaken. She has been like this for few days. She was not intersted on any activities which she usually enjoy doing.

They tried to fix her inset because it bruised her under arm. But it only make it tight when Muja wearing thick outfit.

Anyway her walking and standing frame was taken for the one that suit her better.

Friday, 14 March 2008

Zain Bhikha- "You are never Alone"

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu



Sometimes, when the world's not on your side,
You don't know where to run to,
You don't know where to hide.

You gaze, at the stars in the sky,
At the mountains so high.
Through the tears in your eyes.

Looking for a reason,
to replace what is gone.
Just remember, remember
That you are never alone.

You are never alone (you are never alone),
Just reach into your heart,
And Allah is always there.

You are never alone (you are never alone)
Through sorrow and through grief
Through happiness and peace
You are never alone.

So now as you long for your past,
Prepare for your future,
But knowing nothings going to last.

You see this life is but a road,
A straight and narrow path,
To our final abode.

So travel well O Muslim,
And Paradise will be your home,
And always remember.
That you are never alone.

You are never alone (you are never alone),
Just reach into your heart,
And Allah is always there.

You are never alone (Allah is there),
Through sorrow and through grief,
Through happiness and peace,
You are never alone.

You are never alone (you are never never alone),
Just reach into your heart,
And Allah is always there.

You are never alone (you are never alone),
Through sorrow and through grief,
Through happiness and peace,
You are never alone.

Thursday, 13 March 2008

Allah Knows - Zain Bhikha And Dawud Wharnsby Ali

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu



Allah Knows

When you feel all alone in this world
And there’s nobody to count your tears
Just remember, no matter where you are
Allah knows
Allah knows

When you carrying a monster load
And you wonder how far you can go
With every step on that road that you take
Allah knows
Allah knows

CHORUS
No matter what, inside or out
There’s one thing of which there’s no doubt
Allah knows
Allah knows
And whatever lies in the heavens and the earth
Every star in this whole universe
Allah knows
Allah knows

When you find that special someone
Feel your whole life has barely begun
You can walk on the moon, shout it to everyone
Allah knows
Allah knows

When you gaze with love in your eyes
Catch a glimpse of paradise
And you see your child take the first breath of life
Allah knows
Allah knows

CHORUS

When you lose someone close to your heart
See your whole world fall apart
And you try to go on but it seems so hard
Allah knows
Allah knows

You see we all have a path to choose
Through the valleys and hills we go
With the ups and the downs, never fret never frown
Allah knows
Allah knows

CHORUS (x2)

BRIDGE:
Every grain of sand,
In every desert land, He knows.
Every shade of palm,
Every closed hand, He knows.
Every sparkling tear,
On every eyelash, He knows.
Every thought I have,
And every word I share, He knows.
Allah knows.

Monday, 10 March 2008

Wheezy breathing.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Today, Muja had an appointment at Respiratory Department in PMH. Before the appointment my husband, Muja and me went to Nutrition Department in Level 3 to order Muja formula, Pediasure. Alhamdulillah Nicole, Muja Dietitian, was in. She said that she will write the prescription and it will be delivered to us in 10 days.

After that we went to Patient Appliance Centre in basement to order Muja Nasogastric supplies. The man at that centre said that I have to make an order through Visiting Nurse. I told him that the Visiting Nurse is closed. He checked for me. He found out that the Visiting Nurse have moved to Ward 5A and now call Nursing in the Home.

We went up to Ward 5A but the nurse directed us to go down to Gastroenterology Department in Level 3 on the left side of the lift. We went back to Level 3 and found the place. The nurse who was in charge was not in but alhamdulillah we can leave the order at the receptionist. We ordered nasogastric tube, tubes and bottle for kangaroo pump; 60 and 10 mls syringes, syringe extension, litmus paper and tape for nasogastric tube. Insha Allah we will coming back in 2 weeks to Patient Appliance Centre to pick up the supplies.

End of 2006 Muja was sent by ENT to the Respiratory Department because she made wheezy sound when breathing. Read previous post here about her sleeping management. She attended a Sleeping Study where her sleeping was monitor overnight at the clinic. She was sleeping well that night. Alhamdulillah, the study found out that there was no problems with her breathing and nothing to worry.

What I find is Muja usually gets block nose when the weather is cool. When her nose is block, her breathing make wheezy sound. May be her nasogastric tube effect her breathing. I don't know. I give her Ant Tart, a homeopathic remedy, for it. It works well and her wheezy breathing stop. Alhamdulillah, she normally does not catches chest infection as well. Masha Allah she is healthy, alhamdulillah.

At the appointment today, the doctor asked about her well being after last seen. I told her that since the study she was fine except for winter or when the weather is cool her breathing is wheezy. The doctor was asking me about her sleeping time. When asked about her sleeping time I answered that her normal time of sleeping is after midnight. I also informed her that from October last year to January this year she was on Chloral Hydrate prescribed by our GP for sleeping but the medicine didn't worked on her. She slept after or around midnight and sleeping through out the day. Most of the time she staying up all night even after I gave her the medicine. I stated that I gave her Melatonin which I bought from Health Shop but it does not help also.

So she suggested a Melatonin prescription for Muja sleeping problem and another sleeping study. The prescription needs government authorisation before we can takes it at the PMH pharmacy. It will take 2 weeks. So Insha Allah with Allah permission, I am hoping that her sleeping will be manageable with medicine.

Wednesday, 5 March 2008

Therapy day with Amy and Alison

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Yesterday at 3:30pm, Muja speech pathologist, Amy and physiotherapist, Alison came. Muja just woke up and she looked tired. She had no head control at all and bent her head down.

Amy showed her the frog while Alison held and supported her in sitting position. She wasn't interested in the frog. Then Amy offered her a choice whether she wants to play with the frog or bubbles. She wasn't interested on the bubbles as well. When Amy gave her another choice between the bubbles and rain stick she kept choosing the rain stick. She love it so much.

Alison then lay Muja on the floor. She assisted her rolling and helped her laying on her tummy. Muja held her head up and in the middle while Amy setting up the computer and the switch. Again with help and support Muja was doing really well with the switch while laying on her side. She was also controlling the switch well when sitting. I supported her sitting while Alison helped with her hand position and the switch. She also enjoyed this activity and kept looking at the computer after Amy packed it away.

Before leaving the house Amy sang Row, row your boat, her favourite song hoping, insha ALlah, that one day she would scream when the verse say "If you see a crocodile, don't forget to scream".

Tuesday, 4 March 2008

Botox injections follow up appointment.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Today we went to PMH for Muja appointment at Rehab Mobility Clinic of Developmental And Rehabilitation Paediatrics. On this appointment the physiotherapy measure her muscles to find out whether the Botox she had last October made any differences. Alhamdulillaah from their measurements Botox does make some improvements on her muscles.

What I see is it causes her muscle to relax. This causes a reduction in muscle spasms and stiffness. Insha Allah, it will also help her hips from dislocating. She still crosses her legs when she is excited. It is hard to keep her legs apart when sitting in the car seat and put her in and out of the insert. Although her insert has pulmo to keep her legs apart, her strong muscles push her legs over it. She has strong muscles and sometime I found it hard to change her.

The doctor explains to us that they will continue giving her Botox for functional purpose like changing her nappy. An appointment has been made for Botox injection early next month, Insha Allah.

There are some posts about botox in here and here.

Monday, 3 March 2008

Hearing review at Australian Hearing.

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

Last Thursday Muja had her appointment at Australian Hearing for every half yearly review. Muja, her father and me went to the one in the city. I was shocked that we was charged $13.00 for the parking at the Central Park, an undergroung car park under Commonwealth Bank.

On the way there Muja was still sleeping until we arrived. Alhamdulillah she woke up few minutes after we entered the treatment room.

A hearing test was done in a special sound proof room. The idea of the test is for her to look at the puppet when the sound made. For Muja, it would be impossible because she can't move or control her head. However she respond with her eyes whether blinking them or moving them side way. From the test we also found that she respond better on high pitch than lower.

Her ears was fine. A new mould was made for her hearing aid as she grows. One of her hearing aid was block because ear wax was stuck in it. I can't remove the wax because I don't have the tool. As usual the hearing aid is clean before we left with some batteries for the hearing aids.