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.