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.

Wednesday, 28 December 2011

When Mujhee was under anaesthesia.

I'm wondering why I have feelings of uneasiness that something undesirable will happen every time Mujhee is scheduled for a surgery. For that I am afraid to send her to surgery and I end up delaying her surgery. I am always nervous, with the thought of losing her. The thought constantly occupies my mind. I worry if it will be her last breath and she will never wake up again.

From memory, Mujhee was under the first anaesthesia when she had her ear surgery done for glue ear. This surgery was to clear the fluid in her middle ears. Alhamdulillah there we no need for grommets insertion in her ears. I don't have any post in Lightnur blog for this procedure because I wasn't blogging at that time. She must have been about one year old. After that she was referred to the Audiologist at Australia Hearing by the ENT from PMH. Two weeks after Mujhee was born, a hearing test confirmed that she has moderate hearing loss. Allahu Akbar, that news and few other devastated me. Alhamdulillah, now she is using hearing aids to help her hear well. I think Mujhee can hear better than she can see.


There was only one time, alhamdulillah, when Mujhee was under anaesthesia for Botox injections (April 2008). I remember how she screamed after this procedure. Usually Midazolam was given to her for sedation, to keep her calm during the procedure. Alhamdulillah she was fine with it. The other day when I attended Mujhee's hip surveillance clinic her paediatrician mentions about anaesthesia for Botox, but I insist her that she is fine with Midazolam. I am just afraid for its side effect.

After that, Mujhee has gone through, three more devastating surgeries. On May 2009, she was under anaesthesia for a surgery to put a feeding tube on her tummy. Mujhee had a severe side effect of nausea, vomiting and dry mouth and had to be hospitalised for 8 uncomfortable days which was more than her scheduled period of 3 days. Alhamdulillah, after this surgery I suddenly see Mujhee's beautiful cheek without the tube dangling down. I find Mujhee's muscles are relaxed and her extension is reduced. And she stopped moving her head towards the nasogastric tube on her cheek.

The next surgery was to lengthen her hip adductors, hip flexors and hamstrings (knee flexors) which were done on October 2009. I told the doctor about how bad she reacts to anaesthesia, but then the post-surgery for this time was the worst. She was under a lot of pain and that triggered her spasm and seizures. The post about the pre-operative meeting is here


The last time she was under anaesthesia was when she had a surgery to remove her swollen tonsils that block her airways which made it difficult for her to sleep and have sleep apnea. This surgery was done on October 2010. Alhamdulillah, in this surgery, she recovered faster than I thought. Suddenly I find that Mujhee is so quiet without loud breathing.

Alhamdulillah, I realise how weak I am; I required a full submission to the will of Allah. When you are weak and vulnerable, the syaitan often snick onto your thought with bad whisper to your chest. When you remember Allah they ran away, but come back after you don't remember Him. We have to be careful with the whisper of syaitan.

I overcome this by doing a lot of remembrance of Allah.  Have to say that I also take homeopathic remedy to calm me down during this time. Of course, I concerned more during the surgery but the best thing to do at this time is to put a complete trust in Allah and say lot of du'a, begging Him for what is good. Remember He is Your Rabb that able to grant your wishes. I always bring a copy of Al Qur'an so that I could read it while in the hospital.

The other thing to do is patience. Lack of patience, will fill the mind with bad thought. When that happen you wasting your time with unnecessary thinking. In the Quran, Allah swear by the time, that human is in loss, because the time is wasted with unnessaccery thought especially negative or bad one.

The most devastating time for me is post-surgery, the fact that Mujhee has to be put up with the side effects and pain. Thinking about what her reaction will be during her recovery from surgery also worries me, but then the best option is to put your trust in Allah. Only Allah knows and you don't know, so don't waste your time with your own predictions, astaghfirullah. Why worry about something you have no control over? This is not an easy path but be perseverance and insha Allah, He will be with you with the strength that you need.

I ask our Rabb, to grant us and Mujhee good health and keep her away from any major surgery, ameen.

Insha Allah, I hope the link here would help with the Anaesthesia - Frequently Asked Questions.