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

Sunday, 31 May 2009

Muja progress after PEG surgery.

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.

Friday, 29 May 2009

A wheelchair restraint for Muja's vehicle

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.

Monday, 25 May 2009

Istikhara Du'a: A supplication for the guidance prayer

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."

Saturday, 23 May 2009

The days Muja at the hospital for PEG surgery.

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.

Wednesday, 13 May 2009

Muja got an appointment for PEG surgery.

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.

Tuesday, 12 May 2009

A Special charity for Conductive Education Center of Western Australia

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.

Thursday, 7 May 2009

Links to Mind and Muscles report.

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

Friday, 1 May 2009

Muja's Conductive Education Video

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

video

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!