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

Thursday, 29 December 2011

UPDAAAAAAAAAAAATE! :)

This might be my last post for 2011 so insha Allah I'll try to summarize some updates that I have not had time to post before.

We have a new team for Mujhee's physiotherapist, occupational therapist and speech therapist from the beginning of the year from Therapy Focus. I am grateful that we have this team because there were incident when the services was suspended and there were no therapist at some times. I am so thankful for this team for their support through out this year.

Alhamdulillah, Mujhee's second skin postural suit was made on November this year for her posture. This is her second suit. She chose a yellow material with white flowers and green apples.  The material for this one is much better than the one before. Mujhee looks tall with the suit on and her position is symmetric.

Mujhee's physioterapist is reviewing her Symmetrikit chair. I'm not happy with her chair because it is way too big for her and does not support her posture and comfort.


Mujhee's sleeping was better at some stage but before the school holiday it got messed up again. I guess it's in her system. When Mujhee is sick she likes to sleep upright. When I talk to Mujhee's OT about Mujhee's sleeping problem she suggested a bed and mattress that could help her sleep better. Insha Allah, the bed that can tilt so it can help with her breathing and also prevent her from vomiting while laying down on her back. We are also going to get a mattress that will help her posture and hopefully will help her sleep.

During Ramadan we received Mujhee's Flamingo shower chair from Denmark. Alhamdulillah, it is easy to wash Mujhee without too much lifting and bending. It is also very light to move around. We have a problem with the toilet seat. The shower chair cannot fit on the toilet because it has a wide modified handle attached to the toilet seat. I experienced an unpleasant incident when I asked our real estate agent to change it to the normal toilet seat. The receptionist was so rude for telling us to return the shower chair and get a new one that can fit. Anyway, this got sorted through Mujhee's OT.

Mujhee's AFOs do not fit her anymore, so we should get a new one next year. It will be her 5th AFOs.


Mujhee's wheelchair insert needs an upgrade. Masha Allah, she grew out of it. We wanted to try X-Panda but Mujhee's OT said that it could not provide the support that Mujhee needs so we will custom make her 5th insert like we've done previously at CP Tech next year.


Mujhee has a vision assessment at the Association of Blind Western Australia in December. Mujhee has cortical visual impairment which means that there is nothing wrong with her eyes but it has to do with the brain that processes the information that is sent from the eyes. I know Mujhee can see light but I am aware that she is not following objects. For stimulating Mujhee vision, she needs big black and white pictures, bright toys and light. There is nothing more we could do in term of increasing her vision because at her age, her vision has fully developed.

Mujhee is seeing a chiropractor to help manage her spine and hips. He said that she has improved 60%. From my observations, Mujhee's muscles are relaxed. She keeps her legs apart beautifully and hardly scissors her legs. She also holds her head up in the middle most of the time. Alhamdulillah.

The dietitian from PMH has reviewed her nutrition and increase her fibre in December this year. The increase hasn't made a big change anyway. We still need to give her Parachoc to open her bowel. Mujhee also has to put more weight on. We need to review this matter again.

I'm worried about the Conductive Education Program at Carson Street school for next year. This year, in term 1 she had a teacher who is not a conductor. In term 2 she had a teacher, from Scotland, who has a CE background. He is a great teacher but he could not get his visa so he had to go back. In term 3 she had various relief teachers until the beginning of term 4 where she got a conducter/teacher. Mujhee is on aspect of CE, meaning she is only getting some part of the CE program through her day at school.


 I am looking forward to CE holiday program in January next year. I am hoping that it won't get too hot during the CE Program because it could trigger her seizure and she won't be able to attend the program. Since November, I have used Midalolam twice to control her seizures. Other wise, her seizure is controlable with Keppra and Clonazapam.

Since I got back pain, there are some things that we need to care for my back. How can I help Mujhee when I cannot help myself? Off course with the help from Allah, Alhamdulillah, I am so grateful that Mujhee has elder sisters who could love and care for her, a younger sister who likes to play with her and of course her caring father.

From my back pain, we received great news telling us that Mujhee has her own Local Area Coordinator from Disability Service Commission. The first time I met her I already liked her. I am sure she was sent to us by The Most Merciful so she could support us in anyway one could imagine.

We desperately need  an air conditioner in our family room so that Mujee is not left alone in her room. Mujhee cannot move herself so she cannot control her body heat that would trigger seizure. Our LAC is helping us looking at split system installed through the ILC grant.

I am asking help for respite through the Commonwealth Centers and The Center of Cerebral Palsy, so that I can take a break from caring Mujhee and recharge my energy.

We are going to get a hoist to lift Mujhee and slide sheet for moving her on the bed so we can avoid lifting her.

We are looking for a new wheelchair hoist modified vehicle again to get Mujhee around easily for school and treatments and she would not be isolated at home. At the same time to helps Mujhee's father back and my back. The lifting has impact on our back now.  We need to look after ourself  so we can look after Mujhee.

1 comment:

Noor Of My Life said...

Asalam alekum, i know you havent posted for a while but i just wanted to say i hope your daughter is well and you and your family are staying strong through her more tougher days.

Allah knows all things, inshallah he will reward your patience and will bless your whole family with good in this life and the hereafter. Remember me in your duas x