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

Saturday, 20 November 2010

Mujhee hearing aids is missing

After Mujhee's tonsils surgery I found out that her hearing aids were missing. I remember I packed them in Mujhee's bag a day before the surgery. She didn't get to wear them at the hospital because she was sleeping most of the time there. She was on quite heavy drug. When we got home they were not in the bag. I looked for them but could not find them any where in the house either. 

On Wednesday 17.11.2010, Mujhee had an appointment at Australian Hearing for reviewing. Australian Hearing is a government-funded hearing services for children up to 21 years old. Mujaheeda's missing hearing aids was funded through here.

When I told Mujhee's visiting teacher from WAIDE about the missing hearing aids, her only concern was if we will be in trouble for loosing it. Alhamdulillah when I told the audiologist about it, she said that she would order a new pair right away as it is an urgent matter. For now until the fitting day Mujhee hasn't used an hearing aid for almost three months. How silent is her world without any sound? I wonder if she likes living in the silence because she hates noise. She usually complains about us being so noisy. Remember the story about Hana, Mujhee little sister. She said that she doesn't like her because she is noisy.

She was unsettled on that day. I took her out from her wheelchair for a cuddle.  Alhamdulillah, her ears was great and there was no signs of ear infection. She needed a new moulds as well. I was still holding her on my laps when the audiologists made the moulds for her new hearing aids.

While the audiologist checked her ears, her sister, Tazzy played Mr and Mrs Potato Head with her. She asked Mujhee which body parts she wanted to put on. I was telling her that Mujhee can communicate by turning her head or looking away for no and looking at me, the thing or picture to say yes. So when she saw Tazzy and Mujee played she realised how Mujhee can communicates. It a is fantastic feeling when someone actually gets what you have been saying. Off course I feel frustrated when telling people that Mujee can communicate, but they look at me strangely or like I am insane.  She can talk? Are you serious? Are you saying that she can talk? Well I say, yes. She talks to me. She talks Mujhee's language. It's just that you are not trying hard to understand her language. Or maybe you are not giving her a change or perhaps not interested. Hello people!

I learnt a lot from Mujhee. One important thing that Mujhee ask me was to pause and take a breath. Communicate with non-verbal takes so much time which we all just don't have it especially in the world that demand everything in a fast motion.  Mujhee told me to stop and enjoy being in silent. She taught that the best word to say is not saying any word.

Some people just has to see to understand. Most of the professional that Mujhee see are in a hurry to do their job. They have no time to stop and listen to her and are not interested at all in giving Mujhee an opportunity to choose because they believe that she can't do such thing. What I want to say is that I was glad that after her audiologist saw how Tazzy play with Mujhee, she give her time to choose the colour for her new hearing aids. She let her take as much time as she needs with a happy face. I appriciate her understanding and time.

Stick around and I'll tell you what colour she choose and more about her new hearing aids in the next post, insha Allah.

Monday, 15 November 2010

When Mujhee sleeping time all get mix up.

Insha Allah in this post I would like to write about Mujhee's sleeping. I hope this sleeping post wont put you to sleep instead.

Mujhee's sleeping all of a sudden changed. Not for good but worst. But I tell you it was not too bad. I've been through a lot more worst time before, alhamdulillah.

It started in the middle October 2010, when the weather got warm. That night Mujee could not get to sleep. I turned the aircondition in her room on, but she still could not sleep.That afternoon she fell asleep in the car on the way back home. Her teacher told me that she had a nap at noon.

The next day I kept Mujhee at home as she didn't get enough sleep. I thought that she would be tired and knock down around mid morning but I was wrong. She was still wide a wake in the afternoon. Around 6 0'clock she fall asleep until morning.

One morning I got her ready for school. The same thing happened again where she fell asleep after school, then I found her awake all night that night. That weekend morning she was asleep all day until afternoon. That night she slept only for a few hours and stayed awake all Sunday.

Now I got to see her sleeping patern. Here it repeats.

That Sunday night she sleeps well but on Monday when I sent her to school she was still asleep. Around noon, her teacher called me to take her home as she was still asleep. They tried to wake her up but she kept sleeping. When she was at home she was still asleep until sunset. So that night she was awake the whole night. She did not go to school the next day and a few days after that because the change in her sleeping.

Maybe she needs medication to help her sleeping pattern get bact to normal. In the moment she sleeps just before midnight with the help of melatonin. Insha Allah I am hoping that her sleeping will get better and earlier in no time.

I just wonder if she is in pain. At school her teacher said that her spasticity is increasing. I notice her muscle is stiff more than they were before tonsils surgery. Maybe she should get back to Botox clinic or prescribed with some sort of medication. I don't know. Too much things are going on in my mind at this time, what I need now is to seek medical advise.

Wednesday, 10 November 2010

A new postural suit for Mujhee.

It was suggested by Mujhee's teacher/conductor last year to have a custom made second skin suit for her posture. During June 2010 someone from Second Skin came to Mujhee's school to make an assessment wheater a second skin will benefit Mujhee.

Early August 2010 I received a letter from Second Skin recommending Mujhee for a postural suit after that initial assessment.

Looking at the qoute I was shocked, and contacted Mujhee's OT for an advise. She suggested me to try apply funding through AARBIC. She helped with the application. Alhamdulillah soon after Eid ul Fitr 2010 we received a great news that the funding was approved.

Alhamdulillah we got an appointment right away, other wise the next clinic would be in six months. On the 20th August 2010 we went to Second Skin for measurement. Basically there were a lot of measurering to make. I can't believe that it could take more than an hour. I remember how my mum used to measure me and my sister when she made us dresses when we was young. It won't take any longer than 1 minute. Enough of my old history. Now back to reality. =)

We had an appointment at the Second Skin for fitting the postural suit a week after Mujhee's tonsils were removed (12.10.2010). After putting the suit on Mujhee we can see a big different to her posture. She sits straight and tall. It was super easy to hold her. Without the Second skin it was extreamely hard to hold Mujhee because she has such strong muscles which I have to push harder to make her stay in a position. Sometime it is easy for me to let her just lay on the floor than to hold her up sitting or standing. She is quite a grown up young lady.

A few days after the fitting day, someone at Second Skin called. He said that we have to come back for an adjusment around the neck. He looked at the pictures taken on the fitting day and found it a bit loose. Actually I realised that it was loose too, but I thought that it was suppose to be like that. After the adjustment it was perfect fit.

Now the suit fits her well, but we have a tiny weeny problem. Not really small problem. Off course I don't want her food to come out the other end. Other wise she will lack nutrition which can create another senario. Mujhee get sick after each feeding with the suit on. I think the suit hold her body really tight almost until no space for food to stay in her tummy.

Another problem is she does not tolerate wearing the suit together with her AFOs. She would be so tight when I put them at the same time. So her teacher/conductor suggested to introduce to her slowly and one at a time and one of her feeding time change to later towards the end of school hour when the suit will be off for that day. She is not wearing it weekend anyway or when she sleeps.

Alhamduliilah, her teacher and the EAs at her school has done an amazing job that now Mujhee tolerate the suit and AFOs at the same time now. Just when you feel everything in it places, more obstacles rise. It will be in another post, insha Allah, about spasticitysleep and missing hearing aids.

Friday, 29 October 2010

Mujhee's fourth AFOs

On term 3 of 2010, during Ramadan, Mujhee's teacher told me that her AFOs were too tight for her and recommend not to wear them any more. I spoke to Mujhee's physiotherapist from Therapy Focus about them. I didn't expect her call a week later with an appointment at Ortothic Solution for a new AFOs on the 20/08/2010.

For this appointment I had to pick up Mujhee's sister early from school to accompany us. Other wise how on earth could I manage to carry Hana and push Mujhee at the same time and who is going to hold Mujhee for casting and mind Hana while I do it? Anyway Mujhee is so fortunate to have sisters who could always be count on. Wait until her sisters get a driver license, so they can drive her around. ;-)

Alhamdulillah, the day we went for casting, her physiotherapist also came. It made things so much more easy as she can do all the talking. I get physically, and not to mention mentally, tired of talking expecially when we get a lot of appointments at the same time. That time we saw Paul, an energetic young  but professional Orthopedic Surgeon, who made the session a bit interesting.

It took two weeks (3/9/2010) for the AFOs to be ready for fitting. They look great on Mujhee and her foot look bigger. Alhamdulillah, we don't have to go back again as it fit Mujhee perfectly.

This is Mujhee's 4th AFOs.  From memory she had her first one when she was about one year old. The AFOs are used in the treatment of disorders that affect muscle function. They help to control ankles and weak limbs. I don't have a post about her first and second AFOs but there is a post about Mujhee's third AFOs or splint in Casting and Fitting Muja's Ankle Foot Orthoses - AFOs.

Wednesday, 27 October 2010

Mujhee's tonsils surgery.

Insha Allah in this post I would like to write about Mujhee's surgery to remove her tonsils. Alhamdulillah, I was glad that her tonsils has finally been removed last Monday (04/10/2010). We came in the PMH at 6:45 am and it was not until 7:15 that the admission nurse called us in. After registering we were sent to day surgery department at level 6.

Mujhee had her pre-surgery examination while an anaesthetic doctor also checked in on her. I changed her clothes and put on her pink pyjamas. She was so calm unlike the night before.  The ENT doctors came in and asked me to sign the consent form for the removing of the tonsils. We were told by one of the ENT doctors that she will be the first.

The night before thesurgery she was distressed and sleepless. I told her to sleep early because tomorrow will be a big day for her. Her sisters kisses her and wish her a success surgery.  I carried her to her sisters room as she didn't stop crying. Her sisters tried calm her down with words of comfort. Maybe she was scared of the surgery.

Kay said, "It's ok Mujhee. You can do it because you are strong". She also said, "You won't feel anything because they will put you to sleep".

Then Neefah said, " There's nothing to be worried about Mujhee. You won't feel a thing. They'll put you to sleep and everything should be okay. You're a brave girl Mujhee, you've done this a lot of times before. You'll be fine Mujhee."

Before Tas went to sleep she kiss Mujhee and said, "Don't cry Mujhee because you are a strong girl".

Soon after that she fell asleep.

As the doctor left I started feeling nervous. I talked to Mujhee to calm me down. I said to her the insha Allah everything will be alright and I will see her first at the recovery room. I am so afraid something will go wrong and started to get teary. I said istigfar as the negative thought came into my mind. I recited the three Quls surah and wiped all over Mujhee's head and body for Allah's protection of any harm before the surgery. I aslo whispered to her the shahadah, Muslim's testimony of faith. Let it be the last words she heard before she lost her conscience.

Suddenly I remember the words that Mujhee's father loves to say. حَسْبُنَا اللَّهُ وَنِعْمَ الْوَكِيلُ
which means, "Allah (Alone) is Sufficient for us, and He is the Best disposer of affairs (for us). ( سورة آل عمران , Ali Imran, Chapter #3, Verse #173). This words certainly pushed my nervous away, alhamdulillah.

It was 8:30 when we walked into the theater. The hardest part was to leave Mujhee by her self after she lost her conscience. Every time I left her in the theater I always have the thought that I will never know whether I will ever get to see her again after that. I will always be aware that, it can be our last time together. Oh well it was never easy. It made me feels how small I am for not be able to do anything except give all my trust to Almighty Allah. La haula wala quwwata illah billah - Indeed all power and might belong to Him.

At 11:00 am I was brought to PICU to meet Mujhee. Alhamdulillah, it was a relief when I saw her. But she was so distressed and her breathing was louder than before. All the wires that attached to her made her more uncomfortable. I wished I could hold her in my arms to make her comfortable. Alhamdulillah, she settled down after being given oxycodaine. I sit by her bed and wait until she woke up at 5:00 pm when I got to hold her and gave her my big cuddle. The cuddle that made her feel secure. The whole afternoon she was fine. She was fine until I went home. At around 10:30 pm her father called me from the hospital to tell me that Mujhe has been unsettled. I said to him that maybe she is tired and wanted sleep.

The next morning I visited Mujhee. Her father told me that she woke up at 12 midnight and 4 am. It was normal because she usually wakes up at that time for re-positioning. So there is nothing for us to be worried about except her breathing was still extremely loud that morning. So the doctor decided to keep her for another night in a ward and gave her steroid to reduce the swell that cause loud breathing. After noon we went to ward 5C. Alhamdulillah, she was well the whole day, I was with her in her bed. Once a while I hold her in my arms, which she liked so much. That afternoon her sisters came in. Mujhee was happy to have her sisters visit.

Alhamdulillah although she didn't sleep well that night, her breathing is much better. I was happy that she was allowed home that morning.

Being at home is much better than in the hospital. She is recovering well, alhamdulilah. At home she was on antibiotic and panadol for few days. She stays home instead go to school because she was advised to rest at home for 10 days. A couple of days after came back from hospital, her breathing was still so loud and she felt uncomfortable inside her throat. She only settled down when I held her in my arms. I am so grateful that her father and sister, Hani can take turn holding her. She was only better in a sitting position, even when she is sleeping so she ended fall asleep on the reclining chair.

As I write this, she is sleeping in her own bed in her room. Her breathing is normal and free of any medications. Alhamdulillah everything went well.

Thursday, 14 October 2010

If Allah helps you, none can over come you;

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 Allah helps you, none can over come you;
And if He forsakes you,
Who is there after Him that can help you?
And in Allah let the believers put their trust. S3:160

Sunday, 26 September 2010

Great videos of CECWA - Conductive Education Centre of WA

I just wanted to share with lightnur readers these two videos that I took from the youtube cecwa1 profile about Conductive Education in Western Australia. These videos are also featured in the CECWA website. Please visit the website and learn about CE and you can always support generously through it's link here.

The first video is a Conductive Education in WA - every kid can: a visual journey

A moving picture journey of children with motor/physical disabilities and assoiated needs engaged in Conductive Education in a school setting: footage from families associated with Conductive Education Centre of Western Australia (CECWA) -

Masha Allah, a fantastic video of Mujhee and her awesome friends. Please pay special attentions at 0.20, 1.02, 1.16 and 1.22 for Mujhee. =)

The second video I would like to share with you is About CE in WA, CECWA and family stories - interviewed

Conductive Education Centre of Western Australia (CECWA) - history of Conductive Education Centre in WA; the CE education approach explained by teacher conductor; and parents share family stories, their perspective, and why CE is important to their child.

See if you can recognise Mujhee in the second video.

I am telling you both these videos especially the first one give me hope for the oppurtunity that Mujhee gets from CE. First of all, I thank you Allah for making CE exist in WA so that Mujhee can attend it's fantastic program. I thank Allah for giving Mujhee a special program that can help her to develop her motor skills.

I thank Allah for sending us great people to care and cherish my girl, and to work with their love. Thank you very much to all staff at Carson Street for their compassion. I only hope I can thank you enough. It's people like you who make a difference in this world! Keep up the good work!

It makes me shed tears, looking at Mujhee and her other special friends in these videos. All of them have worked really hard just to do simple things in life, like sitting, standing, rolling and communicating, that we didn't appreciate until we lose one. Subhana Allah, may Allah open our eyes to His bounties and be grateful for what He bestows on us.

Insha Allah, I hope you enjoy it. And do leave comment.

Friday, 17 September 2010

ENT appointment and shedule for tonsils surgery.

It was Eid last Friday, the muslims celebration after a month of Ramadan fasting. In the morning Mujhee, her sisters her father and me got into our new Eid outfits and ready for Eid prayer. It is the tradition of our beloved prophet to pray Eid in an open space, so we have our Eid prayer at the Kings Park as always. The prayer follows by the Eid khutbah or Eid sermon.

We reached Kings Park at 8 am, there were a lot of people there already, as the prayer will start at anytime. I dropped Mujhee's father and sisters at a drop off zone, before I parked the car near the Synergy Park. I took Mujhee out while Khai got Hana out off the car. It was a long walk to the prayer area at Saw Ave. On our way there the prayer had already begun.

Along the way there is a path that I can push Mujhee on her wheelchair, but when we reached near the prayer area, it was hard to push through the grass. I stopped a few times to catch my breath. I was hoping there is an accrod parking near by, so I didn't have to walk that far. Sadly there was none.

After the Eid khutbah or Eid Sermon, we met with friends and greet each other with Eid Mubarak. Mujhee gave a big smile to everyone who greet her. She was so happy that morning.

It was not so fun as Mujhee had to go to PMH for ENT appointment after the prayer. Poor thing Mujee's sister and her father have to wait in the car for more than an hour.

It was the same time last year when Mujhee had this appointment but we haven't decided about removing the tonsils. Few days after the appointment we decided to proceed. I contacted the Cerebral Palsy Liason Officer on our behalf to scheduled the surgery. We were disappointed to hear that we had to wait for the next appointment, which will be in six months.

Six month after that we still didn't get any appointment. Then I asked Mujhee's OT to do a follow up. When she got back, she told us the Mujhee will get her appointment not until September which will be another six months because the doctor was on leave.

The doctor checked Mujhee ears, throat and nose. While he checked he mentioned about her tonsils. I told him that we have decided to do the surgery. He said that he didn't get our message and told us that we should write to him. Anyway, I believed everything happens for a reason, so I hope the delay is for good only. Alhamdulillah he scheduled the surgery for next month. When I wrote this post, we have received the date. Insha Allah it will be on early October.

After the appointment we visited my parents to greet them Eid Mubarak. My parents' dinning table was full of delicious food. There were ketupat, rendang, sambal goreng and sayur lodeh. We ate a lot of food there before we went to my sister's.

Mujhee slept well that night. In fact since Ramadan she has been sleeping very well, alhamdulillah. Alhamdulillah! I am so grateful for Ramadan, a month full of mercy and blessing. May Allah accept all our prayer and good deeds, ameen.

Saturday, 11 September 2010

Happy Eid 2010

I know this is kind of late, but it's better late than never. Wishing all lightnur reader a Special Blessed Eid. May the meaning and blessing of the Ramadan remaining with you through out the coming year. Taqabbal ALLAH minna wa minkum - May ALLAH accept all our good deeds.

Thursday, 19 August 2010

If you don't sleep I'll brush your teeth.

It has been a long time since I've updated this blog. Am I having nothing interesting to write anymore or what? Actually there are a lot of incidents that I wanted to mention here. It is just the time. Where is it gone? I don't know. This reminds me of a few verses in the Quran that speaks about time, Subhana Allah.

By the time. Indeed, mankind is in loss. Except for those who have believed and done righteous deeds and advised each other to truth and advised each other to patience.Al Quran 103:1-4.

So insha Allah here is a quick update about Mujhee's sleeping. Last night Mujhee's father carried her from the lounge room to her bedroom. Neefa, her favourite sister, feed her before Kay, her other sister, get her ready for sleep. I was feeding Nana, her little sister, on my bed. Kay changed her nappy and put on her pyjamas. She said good night to Mujhee and continue doing her study for a test tomorrow.

After I put Nana to sleep I went to Mujhee's room to check on her. Her eyes were still wide open and she cried like her tummy was in pain. She was laying flat on her back. I took the wheat bags and heat them in the microwave oven before placing them on her foot and tummy. She was still crying with her mouth wide open. I told her that since her mouth was wide open I will get the tooth brush to brush her teeth. Meanwhile I went to the kitchen to get the other wheat bag. When I get back to her room she was fast asleep, so quietly I put the wheat bag on her other foot.

I just wanted to mention something interesting about my words which was the title for this post. This was not the first time I've said this to Mujhee. Actually it was the third time I said them to her and at each time after I said them to her she went to sleep right away, masha Allah. I have to mention here that since she was little she hates anything that enters her mouth, including food. So it is understandable that she doesn't like brushing her teeth. That was why when I say to her that if she doesn't stop crying and go to sleep I'll brush her teeth, she chooses to go to sleep.

The point that I wanted to make here is that she actually can understand us and she can make choice, alhamdulillah.

Friday, 9 July 2010

Custom made chair for Mujhee's wheelchair.

On the previous post I mentioned an appointment at CP Tech. I wrote that we met with the Sleep Solution on that day. While we were there for the wheelchair appointment we managed to discuss about Mujhee's sleeping problem and the trial on lullaby for sleep, wedges for positioning and the monitor to make sure she is safe. This is another post that I promise on that post and it is about an appointment at CP Tech for the wheelchair.

After waiting for two months, alhamdulillah, Mujhee got the funding for a custom made seat for her wheelchair. It was 18 May 2010 when we came in for commencing the process of making the chair. There were Mujhee's Occupational Therapist from Therapy Focus, a Physiotherapist from TCCP, CP Tech technicians, Mujhee, her father, her sister and me.

Not long after we were in the room the technician came in from the workshop with the chair. The base is made of plywood with the L shape while the seat is made of foam. When Mujhee sit on it the first thing we noticed was how tall she was but the seat was a bit small because the measurements on that seat was from the previous appointment two months ago. The seat needs to be lenghten and the back of the it needs to be higher. I found out that Mujhee's right leg is longer than her left so the right side of her seat base is about 1 cm longer that the left side. Masha Allah, Mujhee has grown about a couple more centimeters since the previous measurements were done.

While the technician made the adjustments for the base seat at the workshop, we discussed a little bit about straps and bars that she needs to support her while she sits on it. We also decided to have a contour for the seat as it could hold and support her sitting. Before noon we left because there was not enough technicians to proceed with the work that day.

On 28 May 2010 we came back to continue with the detail of the seat including the flip away thoracic supports and hip bars to hold her body in the symmetric and upright position. That day all the straps like pelvic strap, chest straps, groin straps and foot straps were fitted into the seat. The pelvic and groin straps are important to keep Mujhee's tight muscles relaxed. The chest strap is to support her trunk and the one that she has must not interfere with the PEG, a feeding tube, on her abdomanal wall. There is additional shoulder pad on the chest strap to add comfort for her. There are ankle straps on the footplate of the wheelchair to keep Mujhee's foot firmly in position.

While we waited for the technician to do the work, Mujhee enjoyed playing with a switched toy. She moved her hand to press on the switch to make the toy dog laugh. It also vibrates which Mujhee liked very much. I found out that Mujhee's sense of feeling is more better than her hearing and vision. She likes to keep moving since she was a baby. I remember those sleepless nights her father and I used to get because she just wanted to keep moving even though it was night.

That day at the CP Tech was a very long day for Mujhee and us. She used her PODD communication book to make a comment like it will be great if we get in the car to go home. I was glad that we got to take Mujhee home on the new chair that day. Mujhee looked comfortable in the chair and she sit straight or symmetrical and she keeps her head in the middle line. It was amazing to think that how important this chair is for mujhee as it not only gives the comfort but also the support that she needs when sitting down. With the new chair I found out that she is able to move her head better for communication. No wonder her communication was not progressing so much because she was not in a good position that can support the movement of her head to her sides for no and nodding her head for yes.

The next day on the 29/05/2010 we came in again for head rest and tray. An adjustment was made on the right side of the thoracic support because I felt that it was a bit too high and it could leave marks under Mujhee's arm especially when she crosses her arms. The head rest for Mujhee is a very tricky one. The one that she has looks perfect this time. The only problem we had on this head rest is when Mujhee turns her head, the hearing aid's mould losens from her ears, making a loud whistling sound which could annoy and damaged her ears. That day we came home with the same head rest.

As for the tray, we still use the same one but it just needs to be brought in towards Mujhee's body with a new bracket. What I really like about her tray now is that there is a new grip bar on the tray so Mujhee can grasp her hands on it. The tray also helps her to hold her body up.

During the weekend Mujhee's sister found out that her right under arm developed bruises because of the thoracic bar. I made a call to her OT at Therapy Focus and she advised us to lower it while she get back to me after talking to the physio at CP Tech. When she got back to me, she made another appointment on the 17 May 2010, to make an adjustment and to try on different head rest to avoid the hearing aids from falling out when it hits the head rest.

As I write this post the chair is on trial for one week before it's foam will get cover on 21 July 2010. I will drop the wheelchair on that day and pick it up the next day. Guess what colour Mujhee choose for the cover? She choose blue.

Here is a fact sheet on wheelchairs for children.

Sunday, 20 June 2010

Mujhee sleeping management.

Mujhee's conductor/teacher asked me about Mujhee's sleeping at CE summer holiday programme that she attended on January 2010. She asked at the right time because for six week with the cast on she was very uncomfortable during sleep time and at night in general. At that time Mujhee just had her cast off after she had her soft tissues surgery for her migrating hips. She suggested Mujhee to see Sleep Solutions for management of her sleep and I agreed. Previously Mujhee had seen Sue from CP Tech Sleep Solutions to manage her sleeping problem. Here is a review of her sleeping management.

ALhamdulillah after a long wait we got an appointment on April 2010 to see the sleep management team from CP Tech Sleep Solutions. The day she came Mujhee had a very bad night. For almost a week she fell asleep at midnight. She was sleepy during the day and she even missed her school. Usually before her sleeping time she can be very upset and will cry. Her legs are stiff and her fingers are clenched so tight. I was getting very stressed with the lack of sleep and seeing Mujhee crying and upset.

She suggested that Mujhee went back to melatonin, a hormone that can regulate sleeping pattern. Meanwhile she suggested symmetrisleep system to help her position during sleeping with some wedges. She also mentions about lullaby or other nature sound that can put to sleep.

Alhamdulillah, I took Mujhee's rain forest lullaby from school where she brought for show and tell about her three special things. Anyway her other two special things are a book about the Zoo and the hearing aids. That night she slept better with the sound of rain forest and the warm wheat bag on her foot and tummy. She was fine as long as the sound of the rain forest is on. She gets upset if the sound stops and she is still not asleep. So I have to run to her room to switch it on. This could happen a few times before she will finally fall asleep and leaving me exhausted.

On Friday the 18/6/10 I went to CP Tech for Mujhee's wheelchair custom made seat appointment(this will be in another post, insha Allah) and I meet Sue, from Sleep Solutions. Mujhee has an appointment to see her on the next Monday at our house but since we came in she met us there. She brought a couple of wedges to position them between Mujhee when she is lying on her side and a pillow to put in between her legs. When she tried the wedge she looked comfortable and symmetrical. You can't believe it, she fell asleep right away. I guess the measurement for her wheelchair has made her tired or maybe the wedges and pillow made her comfortable.

She also give us a Cocoon Video Baby Monitor so I can hear and see Mujhee from my bedroom. Guess what? I don't have to leave my bed to see if she is alright, alhamdulillah. During the night I wake up to Mujhee's crying to reposition her. I also wake up if she is so silent. I just worry that she falls on her face and suffocated. Mujhee also got a teddy bear which plays a lullaby and the best thing about it, it is voice and movement activated. The sound plays for 5 minutes. It stop after that time. When it stop the voice of Mujhee getting upset or the movement she makes switches it on again. I think this gadget it cool to Mujhee's OT, who was with us and she agreed. For trial Mujhee got the lullaby only without the bear for hygienic reason.

Mujhee's OT and me discussed about the goals for Mujhee sleeping. Insha Allah I would like for Mujhee to sleep at 9 o'clock every night, without me waking up to reposition her and worry about her safety. Insha Allah I hope these trial gadgets will help me and Mujhee to get better sleep through out the night and reduces my stress.

Last night as always Mujhee goes to bed at 8:00 pm. Alhamdulillah she fell asleep at 9:00 pm but she woke up at 10:00 pm. So I went to her bed and changed her position and warm the wheat bag again in the microwave. She went back to sleep at 10:30 pm. She woke me up for Fajr at 6:30 am. I changed her position and put the warm wheat bags on her tummy and legs. She went back to sleep with the sound of waves from the teddy bear lullaby. Alhamdulillah the first night I don't have to leave my bed and she slept well.

Tonight I got Mujhee to bed around 8:00 pm. I read the three Qul surah and wiped her whole body. I also read to her surah al Fatiha seven times and blow onto her. When I leave her room she was still upset and crying. I switch on her lullaby with the sound of waves. I came in her room few time to reposition her and rewarmed the wheat bags for her tummy and foot. She slept at 9:30 pm but woke up at 10:00 pm. I reposition her and while I write this post she fell asleep again at 10:30 pm. Insha Allah, I hope she will sleep until morning and wake me up at Fajr.

Friday, 18 June 2010

Meeting with Mujhee's new therapist team.

I signed an application for Equipment for Living Grant on early month of May 2010 at Therapy Focus. Thanks to Mujhee's OT for filling in the application form for me. As I mentioned on the previous post we are applying for a Symmetrikit Seating System for Children as an alternative positional seating for Mujhee's complex needs. At the moment she has a wheelchair for seating. I feel that she can get really tight sitting on it after a long period of time. Please make dua that Mujhee will get this grant so she can have the recliner seat for her size.

While I was at the office I asked about Mujhee's other new therapists’ member which I haven't met yet. I received a letter stating that her therapist team has changed a few months ago but I haven't met with them personally except her lovely OT. The first time I met her was at CP Tech appointment on March 2010 for upgrading Mujhee's wheelchair seat. She is wonderful to work with and I am glad Mujhee has her.

It was nice to meet Mujhee's new physiotherapist and speech pathologist. I was glad Mujhee's OT introduced me to them, so at least, when I see them around at school I can at least say hello to them. From that meeting, Mujhee's physiotherapist made an appointment to see her and me, to discuss goals for Mujhee.

On the day we met, Mujhee's physiotherapist told me that she has been working with children with disability for almost 20 years. She has background working with Conductive Education in Hong Kong and loves working with children. She gave me her personal contact number and asked me to call her anytime.

We discussed goals that I wanted for Mujhee that included a home program, progress of her standing frame, second skin and new AFOs. She told me that I can help Mujhee standing between five to ten minutes without the standing frame. If she stands for more than these times with standing frame she is not using her legs muscles to stand up. Masha Allah, it makes sense to me.

She told me how grateful we are in here with a variety of fancy equipments. She said that in Hong Kong they make their own equipment. Alhamdulillah I am grateful for having great support from the community. I know Mujhee's life has become a lot more easy to manage with special needs equipment. She needs a wheelchair to help her move around, bathing and toileting seat for hygiene needs. She also needs a standing frame to help her stand, AFOs helps stretch her lower legs muscles that are usually over-flexed or contracted. There are many which I am not going to mention now.

I am thankful because without these equipments I am sure Mujhee's life and my life would be difficult. I just want to justify myself that I am not in anyway materialistic of these equipment but it is because these equipments help Mujhee's special need a lot. I just want what is best for her and can help her living her life better. I want her to have opportunity like any other children. I want a lot for her.

Masha Allah, I just realised that when I write any post in this blog, it is all about Mujhee's appointments, her special equipments and about her therapy’s. I don't know about you, but I never get bored writing about them. Here comes to the purpose of me writing a blog. Well, first of all I want to document what I have gone through or what my life is with a special needs daughter. Second, writing is a therapy for me; it kind of reduces my stress. Once I put it into writing, I feel much more relieved. Third, I write a blog to inform close family activities and the progress Mujhee makes. I can go on and on but I better stop now. I have to pick up my girls from school now.

Okay, I hope you enjoy reading my post as much as I enjoy writing it. Hope that you can some how benefit from it. And may Allah make my life and your life easier for the rest of it. Ameen.

Tuesday, 11 May 2010

A visit to Independent Living Centre.

Mujhee sitting on the Symmetrikit Seating System.

Mujhee's OT has scheduled a visit to Independent Living Centre to look for Mujhee's toileting and bathing equipment during Term 1 school holiday 2010. I used the ILC website a few times, especially when I search for disability equipments. I heard about it a lot but this was my first visit to ILC.

Mujhee, her father and I meet Mujhee's OT at ILC. There we meet with the ILC's OT. She showed us two shower chairs
Joncare Dukki Commode
The DUKKI can be used as a toilet chair and as a shower chair and it is suitable for children from ages 2 to 14.
Aspects such as seating comfort, measurements, hygiene, easy operation and design played an important part in the development of the DUKKI, this effort was not without success, as it won several design awards.

And Nottingham Rehab Seahorse Sanichair
For 3-9 yrs. The Seahorse Sanichair can be used as a mobile over toilet chair, a freestanding commode and a shower chair. It is available in two sizes, both of which have two sizes of foam liners for the seat to provide four size options of Mini, Midi, Maxi and Super Maxi.
Includes contoured seat, water and chip resistant metal frame, large castors, removable splash guard pommel, large capacity potty, adjustable foot plate, body harness and foot straps.
Unit Weight: 15kg (33lb).

Mujhee tried sit on both chair but the Seahorse sit was supportive than the Dukki but the head rest of Dukki was better than the Seahorse. At last we decided to try the Seahorse.

We were told that we can hire the equipment from ILC for trial and use. We hire the Seahorse for $45 per month. Actually my cousin who heard about this has been so kind to sponsor this hiring for 3 month. Alhamdulillah, now at least I don't have to worry about it and giving Mujhee a shower is enjoyable and easy.

While we were there the ILC's OT asked me if Mujhee needs any other equipment as there is a Grants and Equipment Funding under New Equipment for Living Grant (EFL) 2010 - 2011. At that time I have nothing in my mind but then I asked Mujhee's OT what sort of equipments are under that funding. She mention about Symmetrikit Seating System For Children and we have an opportunity to look and Mujhee tried sitting on it.

Masha Allah once Mujhee sat on it we knew it that this is the right chair for her as she is at risk of developing postural deformity. The chair can support her head and trunk without restraint that can make her feel tight and uncomfortable.

Mujhee's OT also recommended Jupiter home seating system for her, but we fall in love with the first seat we saw at ILC, so we decided to apply the funding for the symmetrikit seating through ILC. I appreciate Mujhee's OT for helping us with the application. Insha Allah we pray that she will get the grant.

We were informed about R82 Flamingo Commode which was not on display at the ILC.
The R82 Flamingo Bath/Shower Chair is a potty and bath/shower seat in one. The size 1 Flamingo Bath/Shower Chair will support a child with special needs weighing up to 77 lbs. (35 kg). The approximate target user age for the size 1 model is 2 to 5 years. It has a reclining back, assisting when used for showering.

The Flamingo Bath/Shower Chair has a variety of optional accessories that can be used to support a child with mild to severe physical needs. The bath/shower chair seat is made of 100% waterproof upholstery and can be taken out of the frame and used as a toilet seat or bath seat. Best of all, the Flamingo bath/shower chair is lightweight and easy to fold for storage or transport.

Mujhee's OT gave us the contact where we can look. Last week we went there and tried Mujhee on it. The chair is lighter than the Seahorse which makes it easier to move around. It is compact so it wouldn't take a lot of space for storage. Storage for Mujhee's equipments is a big issue as she has a lot of equipments. Anyway I am glad Mujhee father likes it. I thought if he likes it too much, then he would also likes and enjoy giving Mujhee a shower, so I have one less chore. Alhamdulillah, we decided to take the Flamingo shower chair. Again Mujhee's OT will help applying the funding through Community Aids and Equipment Program (CAEP) for this shower chair.

Making decision is never easy with finding suitable equipment for a child with disability. We have to consider many aspect especially if the equipment can help Mujhee's high muscle tone or spasticity, head and trunk control. It takes time and energy. But Alhamdulillah, every time I have decision to make, I pray istikhrah and leave everything to Allah. I ask Allah to guide me. At least it takes out the stress out of me. Alhamdulillah and I feel satisfy with whatever my decision making is.

Saturday, 10 April 2010

More assessments for hearing

It was a rather scary hail storm we had here in Perth in late March 2010. Alhamdulillah, we have nothing major and survived. I can't believe that it is autumn school holidays already. Two weeks before the holiday Mujhee had appointments at WA Institute for Deaf Education (WAIDE) and Australian Hearing.

The one at WAIDE was for educational audiological and learning/developmental assessments to identify Mujhee's particular needs so that the Institute can provide the appropriate support for her.

On that day we met with the Coordinator Visiting Teacher Service, the Intake Coordinator, the Audiologist and the Deaf blind Visiting Teacher Team Leader from WAIDE. I received a very warm welcome from them. After I listened to their introduction, the teachers made assessments on Mujhee. Masha Allah, I was proud with Mujhee because she tried her best to respond and engaged with them. I was pleased with the way they assess Mujhee. She showed that she communicate well on one on one.

On the short meeting I learnt to not only to verbally talk to Mujhee but patting her as I tell the message to her. For example if it is feeding time, I pat her tummy to tell her it is feeding time, and show her the food while telling her verbally. The same goes with time to change her nappy, by tapping her bottom side to tell her it is changing time and talk to her and show the nappy as well. Insha Allah, it is make sense to Mujhee who is deaf blind.

Insha Allah from next term Mujhee will get the services and supports she needs. I hope it will improve her hearing by doing the right way so that we can communicate with her efficiently.

Mujhee also had her hearing and hearing aids review at Australian Hearing on her last school day for term 1. Last time she had a hearing scheduled review was October 2009. Her hearing aids are set well and the moulds are still a right fit. She didn't responded as well as the last test according to the audiologist because I think the test is suitable for children with normal sight and hearing.

Hearing assessment or test for children like Mujhee can be very challenging. I think the test at Australian Hearing is not accurate for her because as a deaf-blind and having a severe physical disability, she is so varied in her sensory functioning, learning and communication skills.

I was frustrated with the evaluations that were performed using tests and procedures designed for children with normal sight and hearing. These materials are not appropriate for Mujhee. The assessment results are not reliable because they do not give an accurate picture of what Mujhee can or cannot hear.

I wish they use someone who has experience working with children like Mujhee and use her own communication methods (e.g., PODD Communication Book, gestures, words, body language, facial expression) during the evaluation instead of expecting her to look at the elephant puppet and the light when sounds are made.

Before we leave I was glad she gave me Parents Evaluation of Aural/oral performance of Children, PEACH. It is a questionnaire designed to record how the child is hearing and communicating with hearing aids at the moment. I will observe Mujhee for a week before Mujhee next appointment on July. I would write about this later, insha Allah.

I end this post with a beautiful verse in the Qur'an that mention about hearing and sight, {And He gave you hearing, sights, and hearts that you might give thanks(to Allah} (An-Nahl 78)

Friday, 2 April 2010

Review Mujhee's wheelchair.

For a special needs child or children with motor disorder like Mujhee a wheelhair is a freedom for mobility. I wish it is temporary for Mujhee because she is learning how to walk through a system of education called conductive education. I am so grateful that she is given an opportunity to learn how to walk, but meanwhile a wheelchair is a must for her.

It was more than two years ago when I decided to get Mujhee a wheelchair as she has not shown any signs of walking. It was a hard decision to make because I really wish that she is able to walk like my other children. With the help from Mujhee's OT at TCCP that time, I decided to get her Zippie wheelchair.

Mujhee is moving around using a wheelchair. She started using it about a year ago since February 2009. It took about 5 apointments until she finally got it. The most important part about the wheelchair is the seat is custom made. Mujhee is learning how to sit without support but she still needs support for sitting. For that reason she needs a custom made special seat to go with her wheelchair.

Now the seat is too small for her and she looks squashed in it. It is time to modify the seat as she is growing, especially the head support and leg support because they dion't povide the support that Mujhee needs.

Alhamdulillah, it was quite a long wait from Dec 2009 until we got an appointment for March 2010 at TCCP Tech to review Mujhee's wheelchair. I heard that there is some changes at TCCP that makes it's services run a bit slow, meaning a long waiting list.

On the appointment day (18/03/2010) Mujhee's Occupational Therapist, Lisa from Therapy Focus and her previous Teacher/Conductor, Shona from Carson Street School accompanied us to the appointment. I was so happy they came with us and giving us so much suggestions on how to upgrade the new seat.

At the moment Mujhee's OT will apply for the fund according to what her new seat will be and insha Allah when it is granted TCCP Tech can proceed with the making of the seat.

There will be a couple of months waiting period until the funding is available. I know it seems long and I wish she could get her new seat right away. It is not only the wheelchair, there are few more equipments that needs to be upgraded like a standing frame to help her stand and a shower chair for washing her everyday. I find the costs are hard to cover because the cost of having a child with disability are way too high.

For me waiting is great as it teaches me to be patient during times of hardship without complaints. I remember a verse in the Quran that states that "Indeed Allah is with those who are patient." Al Baqarah 2:256. So what more would I want?

Inna Lillahi Wa Inna Ilaihee Raaji'oon “To Allah We belong, and to Him is our return”

Thursday, 4 February 2010

Conductive Education Holiday Programme

Mujhee's conductor/teacher mention to me about CE holiday programme when I came to the Award Day on December last year. Not that I was not aware of it but I was too busy with Mujhee in the hospital and post surgery so I forgot to register my interest. Anyway I was glad when she asked me and Mujhee has been accepted for the program.

The program was during Summer school holiday, where the temperature is at its peak. It was a relief that only a couple of days during that week the weather was uncomfortable. It was organized by CECWA or Conductive Education Centre of Western Australia. Big thanks to CECWA for creating this opportunity for Mujhee and other kids like her. Mujhee attended this great program lead by Shona, a new Conductor at Carson Street School. She was excellence and it seem like Mujhee pay every of her attention at her. I notice that she has the magic touch and her voice makes Mujhee keep searching, following and looking for it, if you understand what I mean.

The program was for 5 days, even thought I would like Mujhee to attend more days. I wish it was available for more days but I must say that these five days I learnt a lot. The program made me miss the School for parents where I could get guidance of Conductive Education. There are so much things that I need to learn so I can help Mujhee to learn to do just a simple things like sitting and standing which we all take for granted. I don't know what I have until I lost it.

On her first day Mujhee was so tight and she didn't let me do any stretching for her on the plinth. At that time Mujhee just had her cast off and she complaint every time I moved and stretched her legs. The Conductor suggested me to cuddle her a few times to settle her down. There is nothing that we can do without making her upset, so that day we took it easy on her just with some gentle stretching with the help from EA.

I like the hand stretching very much because the purpose of that is to be able to shake hand when meeting with people which we usually do when greet each other.

The conductor recommended hydro therapy for Mujhee to help reduce her stiffness. Her father was eager to take Mujhee in the pool for the rest of that week. Like me, he also believes that water heals pain and relaxes stiff muscles. On the second day Mujhee was better especially after hydro therapy with a physiotherapist from Therapy Focus and her school's Education Assistant. Mujhee was also more settled especially without her AFOs because she developed pressure marks on both of her heels from the cast which she had for six weeks after her soft tissue surgery. Maybe she was uncomfortable the day before when I put them on.

I learnt that Mujhee needs leg wraps that support her knees when she is standing. The physio from PMH said that Mujhee is allowed to stand only at this stage. I saw that she was in so much pain when standing up but she tried hard for standing which touch my heart.

I am happy with Mujhee sitting at the plinth at activity time. The grasp bar helps her balance. I found out that she doesn't need arm wraps because she grasps that bar straight. It makes hand tasks a bit challenging for Mujhee as her arms are also stiff and she makes her hand into fists. It's hard to keep her fingers opened. I feel Mujhee tried hard to balance her sitting and holding on grasp bar and use her hand to do activity.

Saturday, 23 January 2010

Alhamdulillah, Mujhee's cast is off

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

Early this year, Mujhee, her sister Kayy and me went to PMH to take off her cast. I took Kayy with me because it was school holiday. Usually I could not take any of my kids to Mujhee's appointment because the time is always during school hours. Most of the time Mujhee has to miss her school.

Mujhee had her soft tissues release for her thigh abductors and hamstrings at the end of November. She was in an A shape cast and a stick between her knees for a long six weeks. At least that is what I felt, endless. I was counting each days for the cast to be put off. I think Mujhee would think like me.

She was uncomfortable in it especially at night and when she was laying down on her bed. Most of the time she sit well on her modified wheelchair. It was uneasy to change her nappy particularly when she done a poo. Sometime she felt distressed, painful and irritated.

The appointment that day was at the Orthopedic Department in PMH. It took about an hour to cut the cast out. Alhamdulillah Muja tolerated to the vibration made by the saw but sometime she turned stiff as her reaction to that vibration. After the stick between her knees was cut, then the left leg cast was opened. As soon as it opened Mujhee tried bending her knee. Then the physio opened the other cast on her right leg. There are few pressures marks on both her heels and around her ankle. Her physio said that she will be in pain after this and suggested pain stop for Mujhee.

After the doctor prescribed for the medicine, I stopped by at the pharmacy to order pain stop. Then I went straight to Occupation Therapy Department for Mujhee's modified wheelchair. It also took another hour for the hospital technician to modified her wheelchair back to normal.

On the way home I realised that I forgot to pick up Mujhee prescribed medicine which I order earlier, so I went back to PMH.

That afternoon I went to my mum's house for dinner. We had colourful rice with fried chicken and salad; mee rebus and chocolate cakes. Yummy. My mum always cook us delicious food.

Alhamdulillah since the cast is off for good, her sleep is improving. I am sure she feels lighter and comfortable without it. She needs a lot of stretching as her legs are still tight. Insha Allah I will post her Conductive Education Summer Program which she attended after her cast went off. Once a while she is in pain but the pain stop relief her pain, although not always.

I would like to thank her father especially for his loving and caring to Mujhee which is beyond his power. To Mujhee's siblings, I appreciated all your helps and understanding during this challenge time.

Alhamdulillah we have been through it and it only made us stronger. All praise belong to Allah.

Wednesday, 20 January 2010

Changing blog name to Mujhee

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

This is my very first post to begin year 2010 by announcing the lightnur reader that I am changing Muja's blog name to Mujhee starting from this post. The reason is a lot of people who known her call her by that name. I noticed that she respond well with that name than when I call her by her real name or her blog name, Muja.